Principles of Social Psychiatry

Principles of Social Psychiatry Second Edition

Principles of Social Psychiatry Second Edition

Editors

Craig Morgan and Dinesh Bhugra NIH Biomedical Research Centre and Institute of Psychiatry, King’s College London, London, UK

This edition first published 2010, Ó 2010 by John Wiley & Sons, Ltd. Wiley Blackwell is an imprint of John Wiley & Sons, formed by the merger of Wiley’s global Scientific, Technical and Medical business with Blackwell Publishing. Registered office: John Wiley & Sons Ltd, The Atrium, Southern Gate, Chichester, West Sussex, PO19 8SQ, UK Other Editorial Offices: 9600 Garsington Road, Oxford, OX4 2DQ, UK 111 River Street, Hoboken, NJ 07030 5774, USA For details of our global editorial offices, for customer services and for information about how to apply for permission to reuse the copyright material in this book please see our website at www.wiley.com/wiley blackwell The right of the author to be identified as the author of this work has been asserted in accordance with the Copyright, Designs and Patents Act 1988. All rights reserved. No part of this publication may be reproduced, stored in a retrieval system, or transmitted, in any form or by any means, electronic, mechanical, photocopying, recording or otherwise, except as permitted by the UK Copyright, Designs and Patents Act 1988, without the prior permission of the publisher. Wiley also publishes its books in a variety of electronic formats. Some content that appears in print may not be available in electronic books. Designations used by companies to distinguish their products are often claimed as trademarks. All brand names and product names used in this book are trade names, service marks, trademarks or registered trademarks of their respective owners. The publisher is not associated with any product or vendor mentioned in this book. This publication is designed to provide accurate and authoritative information in regard to the subject matter covered. It is sold on the understanding that the publisher is not engaged in rendering professional services. If professional advice or other expert assistance is required, the services of a competent professional should be sought. Library of Congress Cataloguing in Publication Data Principles of social psychiatry / editors, Craig Morgan and Dinesh Bhugra. 2nd ed. p. ; cm. Includes bibliographical references and index. ISBN 978 0 470 69713 9 1. Social psychiatry. 2. Community psychiatry. I. Morgan, Craig, 1971 II. Bhugra, Dinesh. [DNLM: 1. Community Psychiatry. WM 30.6 P957 2010] RC455.P72 2010 616.89 dc22 2009050970 ISBN: 978 0 470 69713 9 A catalogue record for this book is available from the British Library. Set in 10/12 Times by Thomson Digital, Noida, India Printed in Singapore by Fabulous Printers Pte Ltd First Impression

2010

Contents List of Contributors Foreword Mario Maj Preface Social Psychiatry: Alive and Kicking Dinesh Bhugra and Craig Morgan

ix xiii xv

Part One Perspectives and Methods

1

1 The Historical Development of Social Psychiatry Julian Leff

3

2 Why Psychiatry Has to be Social Paul E. Bebbington

13

3 Categories and Continuums Peter Tyrer

31

4 Social, Biological and Personal Constructions of Mental Illness Derek Bolton

39

5 Social Science Perspectives: A Failure of the Sociological Imagination Craig Morgan and Arthur Kleinman

51

6 Concepts and Challenges in Capturing Dynamics of the Wider Social Environment Stephani L. Hatch and Dana March

65

7 Qualitative Research Methods Joanna Murray

77

Part Two Components of the Social World

89

8 The Social Epidemiology of Mental Disorder Ronald C. Kessler, Philip S. Wang and Hans-Ulrich Wittchen

91

9 Families and Psychosis Juliana Onwumere, Ben Smith and Elizabeth Kuipers

103

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10 Culture and Its Influence on Diagnosis and Management Dinesh Bhugra and Susham Gupta

117

11 Culture and Identity Julian Leff

133

12 Globalization and Psychiatry Rahul Bhattacharya, Susham Gupta and Dinesh Bhugra

141

13 Trauma and Disasters in Social and Cultural Context Laurence J. Kirmayer, Hanna Kienzler, Abdel Hamid Afana and Duncan Pedersen

155

Part Three Social Determinants

179

14 Fundamental Social Causes of Health Inequalities Jo C. Phelan and Bruce G. Link

181

15 The Sociodevelopmental Origins of Psychosis Craig Morgan and Gerard Hutchinson

193

16 Depression Tom K. J. Craig

215

17 Common Mental Disorders Christoph Lauber

227

18 Suicide Gwendolyn Portzky and Kees van Heeringen

237

19 Personality Disorder Priya Bajaj and Mike Crawford

249

20 Drug Use, Drug Problems and Drug Addiction: Social Influences and Social Responses John Strang, Michael Gossop and John Witton

259

21 Eating Disorders Mervat Nasser

277

22 Social Factors that Influence Child Mental Health Nisha Dogra

285

23 Social Determinants of Late Life Disorders Robert Stewart

295

Part Four Social Consequences and Responses

305

24 Responses to the Onset of Mental Health Problems: Issues and Findings from Research on Illness Behaviour and the Use of Health Services Bernice A. Pescosolido

307

CONTENTS

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25 Gender and Reproductive Health Louise Howard

321

26 Stigma and Discrimination Graham Thornicroft, Nisha Mehta, Elaine Brohan and Aliya Kassam

331

27 Taking Inequality’s Measure: Poverty, Displacement, Unemployment and Mental Health Kim Hopper

341

28 Health Economics and Psychiatry: The Pursuit of Efficiency Martin Knapp and Jennifer Beecham

371

Part Five Social Interventions

385

29 Team Structures in Community Mental Health Tom Burns

387

30 Prevention Tristan McGeorge, Sean Cross and Rachel Jenkins

397

31 Principles of Social Intervention Richard Warner

411

32 Social Interventions for Psychosis David Kingdon, Yoshihiro Kinoshita and Stefan Gleeson

425

33 Social Management of Common Mental Disorders Patricia R. Casey

439

34 Problem-Solving Therapy for People with Personality Disorders Mary McMurran, Christine Maguth Nezu and Arthur M. Nezu

449

35 Social Support Traolach S. Brugha

461

36 Modern Social Networking and Mental Health Keir Jones, James Woollard and Dinesh Bhugra

477

37 The Psychiatric–Child Protection Interface: Research to Inform Practice Colin Pritchard

483

Part Six Global Mental Health

499

38 Mental Health in Europe: Learning from Differences Mirella Ruggeri and Maria Elena Bertani

501

39 East Meets West: Current Mental Health Burdens in Greater China Roger M. K. Ng and Zhanjiang Li

517

40 Social Psychiatry in India R. Thara and R. Padmavati

531

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41 Social Psychiatry in Africa: Evidence and Challenges Oye Gureje and Victor Makanjuola

541

42 Social Psychiatry in the Americas Pedro Ruiz

551

Epilogue

559

43 Where Next for Social Psychiatry? Dinesh Bhugra and Craig Morgan

561

Index

565

List of Contributors Abdel Hamid Afana, International Council for Torture Survivors (IRCT), Copenhagen, Denmark Priya Bijaj, Department of Psychological Medicine, Imperial College London, London, UK Paul E. Bebbington, Department of Mental Health Sciences, University College London, London, UK Jennifer Beecham, Personal Social Services Research Unit, University of Kent, Canterbury, and Personal Social Services Research Unit, London School of Economics, London, UK Maria Elena Bertani, Department of Medicine and Public Health, University of Verona, Verona, Italy Rahul Bhattacharya, East London NHS Foundation Trust, London, UK Dinesh Bhugra, NIH Biomedical Research Centre and Institute of Psychiatry, King’s College London, London, UK Derek Bolton, Institute of Psychiatry, King’s College London, London and South London and Maudsley NHS Foundation Trust, London, UK Elaine Brohan, Health Service and Population Research Department, Institute of Psychiatry, King’s College London, London, UK Traolach S. Brugha, Department of Health Scienes, University of Leicester, Leicester and Brandon Mental Health Unit, Leicester General Hospital, Leicester, UK Tom Burns, Department of Psychiatry, University of Oxford, Oxford, UK Patricia R. Casey, Department of Psychiatry, Mater Misericordiae University Hospital, University College, Dublin, Republic of Ireland Tom K. J. Craig, Health Services and Population Research Department, Institute of Psychiatry, King’s College London, London, UK Mike Crawford, Department of Psychological Medicine, Imperial College London, London, UK Sean Cross, WHO Collaborating Centre, Institute of Psychiatry, King’s College London, London, UK Nisha Dogra, Greenwood Institute of Child Health, University of Leicester, Leicester, UK Stefan Gleeson, Hampshire Partnership Foundation NHS Trust, Southampton, UK Michael Gossop, National Addiction Centre, Institute of Psychiatry, King’s College London, London, UK Susham Gupta, East London, NHS Foundation Trust, London, UK Oye Gureje, Department of Psychiatry, University of Ibadan and University College Hospital, Ibadan, Nigeria Stephani L. Hatch, Department of Psychological Medicine, Institute of Psychiatry, King’s College London, London, UK Kim Hopper, Nathan Kline Institute for Psychiatric Research and Mailman School of Public Health, Columbia University, New York, USA Louise Howard, Section of Women’s Mental Health Service, Health Service and Population Research Department, Institute of Psychiatry, King’s College London, London, UK Gerard Hutchinson, Psychiatry Unit, Department of Clinical Medical Sciences, University of West Indies, Mount Hope, Champs Fleurs, Trinidad

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Rachel Jenkins, WHO Collaborating Centre, Institute of Psychiatry, King’s College London, London, UK Keir Jones, South London and Maudsley NHS Foundation Trust, London, UK Aliya Kassam, Health Service and Population Research Department, Institute of Psychiatry, King’s College London, London, UK Ronald C. Kessler, Department of Health Care Policy, Harvard Medical School, Boston, Massachusetts, USA Hanna Kienzler, Department of Anthropology, McGill University, Montreal, Canada David Kingdon, School of Medicine, University of Southampton, Southampton, UK Yoshihiro Kinoshita, School of Medicine, University of Southampton, Southampton, UK Laurence J. Kirmayer, Division of Social and Transcultural Psychiatry, McGill University and Culture and Mental Health Research Unit, Jewish General Hospital, Montreal, Canada Arthur Kleinman, Department of Anthropology, Harvard University, Cambridge, Massachusetts, USA Martin Knapp, Personal Social Services Research Unit, London School of Economics and Centre for the Economics of Mental Health, King’s College London, London, UK Elizabeth Kuipers, Institute of Psychiatry, King’s College London, London, UK Christoph Lauber, Department of Population and Behavioural Sciences, University of Liverpool, Liverpool, UK Julian Leff, Institute of Psychiatry, King’s College London, London, UK Zhanjiang Li, Beijing Anding Hospital, Capital Medical University, Beijing, People’s Republic of China Bruce G. Link, Mailman School of Public Health, Columbia University, New York, USA Tristan McGeorge, WHO Collaborating Centre, Institute of Psychiatry, King’s College London, London, UK Mary McMurran, Department of Psychiatry, Institute of Mental Health, University of Nottingham, Nottingham, UK Victor Makanjuola, Department of Psychiatry, University of Ibadan and University College Hospital, Ibadan, Nigeria Dana March, Department of Social Sciences, Mailman School of Public Health, Columbia University, New York, USA Nisha Mehta, School of Medicine, King’s College London, London, UK Craig Morgan, NIH Biomedical Research Centre and Institute of Psychiatry, King’s College London, London, UK Joanna Murray, Institute of Psychiatry, King’s College London, London, UK Mervat Nasser, Health Service and Population Research Department, Institute of Psychiatry, King’s College London, London, UK Christine Maguth Nezu, Department of Psychiatry, Drexel University, Philadelphia, Pennsylvania, USA Arthur M. Nezu, Department of Psychiatry, Drexel University, Philadelphia, Pennsylvania, USA Roger M. K. Ng, Department of Psychiatry, Kowloon Hospital, Kowloon, Hong Kong Juliana Onwumere, Institute of Psychiatry, King’s College London, London, UK R. Padmavati, Schizophrenia Research Foundation (SCARF), Chennai, India Duncan Pedersen, Douglas Mental Health University Institute and Division of Social and Transcultural Psychiatry, McGill University, Montreal, Canada Bernice Pescosolido, Indiana University, Bloomington, Indiana, USA Jo C. Phelan, Mailman School of Public Health, Columbia University, New York, USA Gwendolyn Portzky, Department of Psychiatry and Medical Psychology, University Hospital, Gent, Belgium Colin Pritchard, School of Health and Social Care, Bournemouth University, Bournemouth, UK Mirella Ruggeri, Department of Medicine and Public Health, University of Verona, Verona, Italy Pedro Ruiz, Department of Psychiatry and Behavioral Science, University of Texas Medical School at Houston, Houston, Texas, USA Ben Smith, Institute of Psychiatry, King’s College London, London, UK

LIST OF CONTRIBUTORS

xi

Robert Stewart, Section of Epidemiology, Institute of Psychiatry, King’s College London, London, UK John Strang, National Addiction Centre, Institute of Psychiatry, King’s College London, London, UK R. Thara, Schizophrenia Research Foundation (SCARF), Chennai, India Graham Thornicroft, Health Service and Population Research Department, Institute of Psychiatry, King’s College London, London, UK Peter Tyrer, Department of Psychological Medicine, Imperial College London, London, UK Kees van Heeringen, Department of Psychiatry and Medical Psychology, University Hospital, Gent, Belgium Philip S. Wang, Division of Services and Intervention Research, National Institute of Mental Health, Bethesda, Maryland, USA Richard Warner, University of Colorado and Colorado Recovery, Boulder, Colorado, USA Hans-Ulrich Wittchen, Max Planck Institute for Psychiatry, Mu¨nchen, Germany John Witton, National Addiction Centre, Institute of Psychiatry, King’s College London, London, UK James Wollard, Surrey and Borders Partnership NHS Foundation Trust, UK

Foreword This second edition of Principles of Social Psychiatry appears more than 15 years after the first one, and even a cursory comparison between the contents of the two editions clearly documents that the scope and the impact of the social component of our discipline and profession have remarkably increased during the past few years. There is now a more widespread awareness of the role of social risk factors even in the aetiology of mental disorders that had been traditionally perceived to be mostly biological in their causation. Schizophrenia is a good example. The research evidence concerning the association between some social factors such as urbanicity and a history of migration and the likelihood of developing a psychotic condition is now quite robust, and there is also some evidence of a synergy between these factors and familial liability in the causation of the disorder. Also increasing is awareness of the impact of social factors on the identification and the diagnosis of mental disorders. The role of values in addition to evidence in the diagnostic process is now widely appreciated. One of the most debated issues in the ongoing process of revision of the ICD and the DSM is the relationship between syndromal diagnosis and impairment of social functioning. Furthermore, much greater attention than in the past is being given to the cultural relevance and acceptability of proposed diagnostic approaches, categories and criteria. The past decade has witnessed a flourishing of research on the social consequences of mental disorders, in terms both of stigma and discrimination and

burden on caregivers, as well as a new attention to the social factors involved in access to care, resilience and recovery. Moreover, some issues of clear social relevance, such as the mental health consequences of disasters and the mental health problems in refugees and victims of torture, have now a much greater visibility. Finally, the research evidence supporting the efficacy and effectiveness of psychosocial interventions for major mental disorders, such as schizophrenia and bipolar disorder, has grown dramatically during the past 15 years, and the shift from hospital-based to community-based mental health care in several countries has generated a new interest in the link between the organization of mental health services and patients’ quality of life and satisfaction with care. A psychiatric practice and a psychiatric research that do not take the social dimension into account are now unthinkable, and it is not surprising that the scope of these ‘Principles of Social Psychiatry’ is now becoming closer to a manual of general psychiatry. One further feature of this volume is that it represents a bridge between different generations, with some of the fathers of modern social psychiatry and some young emerging researchers among the contributors, as well as a bridge between the core group of UK scientists and leaders of several regions of the world. This gives the book a special flavour, which the reader will certainly appreciate. Professor Mario Maj President, World Psychiatric Association

Preface Social psychiatry: alive and kicking Dinesh Bhugra and Craig Morgan NIH Biomedical Research Centre and Institute of Psychiatry, King' s College London, London, UK

The scope of social psychiatry is broad. Its remit ranges from the impact of social structures and experiences on the onset, course and outcome of mental disorders, to the development and evaluation of complex social interventions and systems of service delivery, to the influence of society on the construction of, and responses to, mental disorder. In this, it intersects with cultural and community psychiatry and with renewed interest in the philosophy of mental disorder, and draws from a number of disciplines, including social epidemiology, sociology and anthropology. This breadth is very much reflected in this current edition, with contributions from across the social sciences. In its focus on the social dimensions of mental disorder, social psychiatry occupies a somewhat precarious position given psychiatry’s primary orientation to the medical and biological. In many respects, social psychiatry reached its peak in the 1960s and 1970s following the closure of long-stay asylums and the relocation of care into the community. Since then, however, social psychiatry (until recently at least) has been in gradual retreat, pushed back by the seemingly inexorable advance of genetics and neuroscience and their promise to uncover the basic biological underpinnings of mental distress. It is arguable that, as a consequence, the scope of social psychiatry has increasingly narrowed to health services research, leaving the business of aetiology to the ‘hard’ sciences

of genetics and neuroimaging. This has led to some inevitable hand wringing about ‘the future of social psychiatry’ [1]. It seems, however, that the obituaries are premature. In the early 2000s, Professor David Goldberg lectured widely on the topic ‘Social psychiatry: there is life after death’, and others have written in a similar vein [2]. Ironically, if the considerable advances in our understanding of the human genome and the brain have told us anything, it is the degree to which the external environment impacts on and moulds what is a flexible and adaptive biological system. As Leon Eisenberg [3] notes: ‘. . . social psychiatry . . . is alive and well precisely because of genomics’ (p. 101). With hindsight, this was always going to be the case; mental disorder in all its facets is intrinsically social it is both shaped by and in turn shapes the local social and moral worlds of individuals. We can safely put to bed any angst-ridden concerns about ‘the future of social psychiatry’. The contributions to this current edition reflect the breadth, necessity and vibrancy of social research in psychiatry, and range from consideration of conceptual and methodological issues (i.e. the nature of mental disorder, how the social world can be studied) to the social determinants of the onset, course and outcome of mental disorders, to consideration of mental health in a global context. This latter focus is relatively recent, and in part is a reflection of the

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considerable changes that the world has undergone in the past 30 years, particularly processes of globalization, mass migration and rapidly changing social structures. The perspectives and approaches typically applied in social psychiatry may prove particularly useful in understanding how these rapidly changing contexts impact on mental well-being and their implications for mental health care. What is more, the contributions in this volume make it clear (if there was ever serious doubt) that understanding and responding to mental disorder is only possible if the social is considered in interaction with the genetic, biological and psychological; these are not competing alternatives, but constituent components of a single whole. What we hope is that the essays collected in this edition will provide both an introduction to core issues and research in social psychiatry and a platform for future research that can further unpack how our social lives contribute to the private (and social) misery of mental disorder. Perhaps then we will know even more about how we can intervene to prevent and ameliorate such suffering.

Assembling this edition has, in itself, been a social enterprise. We would like to thank all our contributors who, in spite of their busy schedules, have managed to deliver outstanding contributions. We are also grateful to Joan Marsh, Fiona Mason and their teams at WileyBlackwell for an outstanding level of support and hard work. In addition a note of thanks is hardly sufficient to convey appreciation for all the work, sweat and toil that Andrea Livingstone has put in behind the scenes.

REFERENCES 1. Lauber, C. (2008) Editorial. International Review of Psychiatry, 20, 489 491. 2. Uchtenhagen, A. A. (2008) Which future for social psychiatry? International Review of Psychiatry, 20, 535 539. 3. Eisenberg, L. (2004) Social psychiatry and the human genome: contextualising heritability. British Journal of Psychiatry, 184, 101 103.

Part One Perspectives and methods

1 The historical development of social psychiatry Julian Leff Institute of Psychiatry, King' s College London, London, UK

Defining social psychiatry is not a simple matter as its concerns and boundaries have altered over the years, as becomes evident by tracing the history of the term. The Royal Medico-Psychological Association (RMPA) had a section of Psychotherapy and Social Psychiatry that was established in 1946. The early meetings of the section focused on social psychiatry, which, although never defined formally, was tacitly assumed to concern the study of social organizations, now considered to be the territory of sociologists, such as Goffman, whose book on asylums was published in 1968 (see Chapter 5). The group, large or small, was viewed as the entity on which social organizations were founded, and the term ‘social’ was used to mean ‘appertaining to a group’. This conceptual framework originated from the experience during World War II of military psychiatrists, of whom the outstanding innovators were Maxwell Jones and Tom Main. Jones was part of the Maudsley Hospital team at Mill Hill Emergency Hospital, and was in charge of the Effort Syndrome Unit with the remit to investigate the cause of chest pains experienced by soldiers under stress. He began to lecture to large groups of soldiers in the hospital on the origin of their symptoms and soon

realized the therapeutic potential of the group itself (The Guardian, Obituary, 29 August 1990). Atthe same time Tom Main was working on a similar problem. He noted (personal communication, 1973) that the incidence of breakdown was higher in some army units than others, and these breakdowns could be legitimately viewed not only as throwing light on the problems of the sick individual but on the organization to which he belonged (battalion, regiment, etc.). Main studied these units in terms of disciplinary patterns, officer man relations, welfare, social structure, roles, role-relations and culture, capitalizing on a natural experiment. Assuming that the assignment of soldiers to units was relatively random and knowing that they were exposed to similar levels of combat stress, variations in psychiatric illness rates were very probably due to differences in the social organization of the units. From the experiences of Jones and Main with group treatment and group structure emerged the concept of the ‘therapeutic community’, which Jones utilized first with returning prisoners of war and then established at Belmont Hospital, Sutton. It was therefore natural to associate social psychiatry with psychotherapy when the section was founded in 1946. Incidentally, when

Principles of Social Psychiatry, second edition Edited by Craig Morgan and Dinesh Bhugra Ó 2010 John Wiley & Sons, Ltd.

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PERSPECTIVES AND METHODS

Jones wrote about his innovatory service in 1952 his book was entitled ‘Social Psychiatry’. In addition to a concern with therapy, the section continued with studies of various organizations, especially hospitals. In addition to Belmont, other psychiatric hospitals were influenced by the experience of military psychiatrists. In Netley Hospital, which admitted soldiers suffering from psychiatric conditions, the psychiatrists witnessed rapid recovery from serious symptoms once men were removed from the stress of battle conditions. This instilled optimism about recovery, which the psychiatrists brought into the ordinary psychiatric hospitals at the end of the war. While a handful of pioneers, such as Duncan MacMillan, had established outpatient clinics outside the psychiatric hospital before the war, the new-found optimism of the military psychiatrists led to an increase in discharges and a fall in occupied beds, which began in England and Wales in 1954, the year before the introduction of chlorpromazine to clinical psychiatry. World War II also had an impact on psychiatric care in the United States (US), but for different reasons from the UK. In Britain, conscientious objectors were sent down the mines to extract coal, the so-called ‘Bevin Boys’. In the US they were given the job of orderlies in the psychiatric hospitals. These morally motivated young men brought into the hospitals their humanitarian values, which were at variance with the prevalent practice of custodial care. Their impact was less revolutionary than that of the British military psychiatrists who were put in charge of the hospitals as superintendents. That is one of the reasons why deinstitutionalization has been slower in the US than in the UK. The RMPA was superseded by the establishment of the Royal College of Psychiatrists in 1971, and two years later a Social and Community Psychiatry Group was set up within the College. Although it lost a nominal connection with psychotherapy, four members of the inaugural Executive Committee were on the staff of the Tavistock Institute of Human Relations and one other was a therapist working with large groups. Furthermore, at the Annual General Meeting of the College in July 1974 the Group organized a session on ‘Prospects in Social and Community Psychiatry’, in which Tom Main was one of the three

speakers. His topic was ‘preventive psychiatry’, which requires some explanation. At the first meeting of the Executive Committee in November 1973, the concerns of the Group were subsumed under three main headings: 1. Promotion of the best possible organization and disposition of community psychiatric services, both within the National Health Service (NHS) and outside it. 2. Development of a liaison with allied groups, such as general practitioners and social workers, and also with similarly relevant groups not directly involved with medical or social work functions such as teachers. 3. Fostering of educational and scientific interests, such as postgraduate training in social psychiatry, studies of social aspects of their treatment, and epidemiological, evaluative and operational inquiries. It was anticipated that the Group would divide itself naturally into three working parties: the first area of concern would be dealt with under the heading of ‘Services’, the second under ‘Prevention’, and the third under ‘Epidemiology’. In effect these divisions amounted to the recognition of major differences in interest, ideology and practice among the members of the newly established Group and its Executive Committee. The discipline of psychiatric epidemiology was well represented on the Committee by eight members drawn largely from the three Medical Research Council (MRC) Units dealing with that field and the General Practice Research Unit at the Institute of Psychiatry headed by Michael Shepherd. The Committee also included a number of pioneers in the development of community psychiatric services. Although some of these had been involved in research studies, their reputation rested on their entrepreneurial activities in creating innovative services. Their natural affiliation was to the Services working party. The third interest group on the Committee was largely derived from the Tavistock Institute of Human Relations. Its members can be viewed as providing the strongest link with the section for Psychotherapy and Social

THE HISTORICAL DEVELOPMENT OF SOCIAL PSYCHIATRY

Psychiatry in the preceding RMPA. The Executive Committee evidently considered that the Prevention working party was the most appropriate for them to join, since Colin Murray Parkes was appointed as its convenor. At the AGM of the College in 1974 each of the three speakers in the session organized by the Group was associated with one of the working parties. John Wing spoke on ‘Epidemiology and research’, Jim Birley on ‘Community services’, and Tom Main on ‘Social and preventive psychiatry’. The association of the term ‘preventive psychiatry’ with the therapeutic community movement is explicated by Hare [1] in his discussion of the relationship between social psychiatry and psychotherapy. He identified two growing points in preventive psychiatry, one of these being group methods of treatment. He viewed these as having close relations with psychotherapy, citing a publication by David Clark [2]. Clark had established a therapeutic community at Fulbourn Hospital, Cambridge, and later became a member of the Social and Community Psychiatry Group. Hare went on to argue that Maxwell Jones’ view of the functions of a therapeutic community broadened from an initial focus on the treatment of established neuroses to include prevention. Hare considered the second growth area in preventive psychiatry to lie in the domain of public health and to be represented by facilities such as hostels and workshops. These were to become the remit of the Services working party of the College Group. The claim that therapeutic communities, or indeed any other form of psychotherapy, constituted effective prevention was viewed with scepticism by the epidemiologists, since no research evidence was forthcoming. Considerable tension existed between

1.1

5

the psychotherapists and the other members of the Psychotherapy and Social Psychiatry section of the RMPA. Hare, himself an epidemiologist, argued forcefully ‘that the epidemiological aspects of social psychiatry would develop more favourably in another soil, away from the immediate discussion and study of psychotherapy’ [1]. The uneasy association between psychotherapy and social psychiatry was dissolved with the founding of the College, when Psychotherapy shared with Child Psychiatry the distinction of being the first sections to be established. Interestingly, this predated by four years the official recognition by the Department of Health of psychotherapy as a specialty. In contrast to the College south of the border, the Scottish branch retained a section of Psychotherapy and Social Psychiatry. Correspondence from its chairman indicated continuing conflict in aims between the two arms of the Section. In 1981 the Group of Social and Community Psychiatry was granted section status during my chairmanship, and the existing working parties were discontinued, to be replaced by time-limited working parties constituted to deal with specific issues. In some respects this was a recognition that the initial ideological divisions had become less salient with the passage of time, and harmonious working relationships had become established. However, there is a need to sustain a boundary between social psychiatry and psychotherapy, partly to limit the territory of the former to a manageable area and partly to avoid acrimonious disputes over real or imagined imperialistic ambitions. To this end, we will propose a definition of social psychiatry and in its exposition will explore the possibility of establishing the boundary referred to above.

A DEFINITION OF SOCIAL PSYCHIATRY

Social psychiatry is concerned with the effects of the social environment on the mental health of the in dividual, and with the effects of the mentally ill person on his/her social environment.

The phrase ‘concerned with’ is preferable to ‘the study of’ since, as we have noted, many people who regard themselves as social psychiatrists are primarily

practitioners with little or no interest in research. The term ‘mental health’ is used in place of ‘mental illness’ since there is a tradition in this field of the promotion of health, beyond the prevention of illness and the accumulation of handicaps. In conceptualizing the social environment it may be helpful to invoke the image of a pebble thrown into water, generating a set of concentric circles becoming

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ever fainter with increasing distance from the pebble. At the outer limit, culture exerts an effect, then moving progressively closer to the centre, workmates, friends and family are increasingly influential. What is the numerical lower limit of the social environment? Can two people be considered to form an environment? The answer is clearly in the affirmative. Important research in the field has been concerned with the influence of the family on the course of psychiatric disorders. Depressed patients living with a partner and patients with schizophrenia living with a single elderly parent are examples of dyads that have been included in these studies and constitute legitimate subjects for research on social influences on psychiatric illness. If dyadic relationships are fair game, then why not the relationship between a therapist and client? It is not possible to find grounds on which this should be excluded. Indeed, there are precedents for this relationship being included in social psychiatric studies in the area of ‘illness behaviour’ and ‘help-seeking behaviour’. This research has included investigation of the concepts of illness held by members of the public, their views as to the appropriate treatments, and negotiation between clients and practitioners over their respective models of illness [3 6]. It would be logical to extend these enquiries into relationships between psychotherapists and their clients. Is the word ‘relationships’ the key for which we have been searching? Would it be tenable to argue that social psychiatry is legitimately concerned with client therapist relationships but halts at the boundary to the psyche, ceding intrapsychic events to psychotherapists of all persuasions? This argument has been eroded by the development of cognitive theories incorporating the individual’s concept of him/herself and the way he/she interprets external events [7]. In the extensive field of life events research, the notion of self-esteem has been invoked as a link between the lack of an intimate relationship and the depressing effects of events that represent a significant loss [8]. Life events research is one example of the longitudinal approach in social psychiatry. Although the time-scale in this area of research is relatively short, it entails the same assumptions as longer-term research, namely that experiences in the past are represented in the subject’s memory and operate in the present to

trigger psychiatric illnesses. Past experiences include relationships as well as happenings [9]. Whatever the theoretical construction proposed to represent past experiences, be it self-concept (George Brown) or latent schemata (Chris Brewin), it is difficult to maintain a clear distinction from psychodynamic theories concerning the self and its intrapsychic processes. Some psychoanalytic theories are easier to reconcile with a socioenvironmental view than others, e.g. Freud’s seduction theory rather than his later renunciation of it. However, the conclusion of this line of argument is that the topics of central concern to psychotherapy, in its broadest sense, also fall logically within the ambit of social psychiatry. Although psychotherapy and social psychiatry share a common interest in the origins of human distress, maybe they can be differentiated by their preferred method of advancing understanding of its determinants. Social psychiatry has relied heavily on epidemiological techniques for its enquiries, involving large numbers of subjects who are usually representative of a particular population. By contrast, research into psychotherapy and psychodynamics until recent years has tended to be hermeneutic, relying on the intensive study of individuals or small numbers of highly selected patients. However, current financial stringencies in the NHS are placing increasing pressure on all practitioners to provide evidence for the effectiveness of their therapies. Partly in response to this situation, psychotherapy is beginning to develop the academic arm of its discipline [10]. It is predictable that psychotherapy will increasingly employ the research methods that are part of the stock in trade of social psychiatry, diminishing the differences in approach that we have outlined. This extended argument has not led to the erection of a solid barrier between social psychiatry and psychotherapy. The practitioners who belong to one or the other seem to have reduced the tensions that were apparent in their joint Group in the RMPA by developing a ‘gentleman’s agreement’ on territorial demarcation. We shall respect this agreement and the reader will not find any chapters specifically dedicated to psychotherapy in this volume. However, many of the contributors deal with topics that lie in the area of overlapping interests between psychotherapy and social psychiatry.

THE HISTORICAL DEVELOPMENT OF SOCIAL PSYCHIATRY

1.2

CROSS-FERTILIZATION

Psychotherapy is not the only discipline that interdigitates with social psychiatry. Sociology, social psychology, social anthropology and, more recently, cognitive psychology have all made valuable contributions to the development of social psychiatry (see Chapter 5). Durkheim’s [11] classical study of suicide provided central themes for two of the British MRC Units conducting research in social psychiatry (Norman Kreitman’s and Peter Sainsbury’s), while sociological critiques of institutions (e.g. see Reference [12]) stimulated Wing and Brown [13] to initiate a line of research that continued for over three decades. The proposition that social support protects against mental ill health derives from both social psychology and social anthropology, and until recently was the major focus of research in the Australian MRC Social Psychiatry Unit [14].

1.3

7

Social psychologists have conducted numerous studies of group processes, which are of direct relevance to those topics in social psychiatry that emerged from group therapy. Medical sociologists have increased our understanding of the ‘sick role’ and of the relationship between clinicians and their clients. Their work has illuminated the pathways traced by individuals as they undergo the transition into patients (see Chapter 24). The studies of migrants, which constitute a substantial corpus of research within the field of social psychiatry, would have been very ill-informed, if not fallacious, without the cooperation of social anthropologists. These related disciplines have provided a cornucopia of theories, concepts and techniques to enrich social psychiatry and stimulate its growth. Examples of this cross-fertilization will be encountered throughout this volume.

THE RISE OF BIOLOGICAL PSYCHIATRY

During the second half of the twentieth century there was a steep rise in interest in and research on the biological basis of psychiatric disorders, largely stimulated by new techniques in imaging the brain and the unravelling of the human genome. Biological research was not neglected in previous decades. In fact two of the three Nobel Prizes for advances in the treatment and understanding of psychiatric illnesses were awarded in the first half of the twentieth century. Julius Wagner-Jauregg won the Nobel Prize for Medicine in 1927 for showing that malarial treatment improved the prognosis of patients with cerebral syphilis (general paralysis of the insane). He was a contemporary of Sigmund Freud, who was disappointed not to get the prize for his work on the nature of unconscious mental processes. The next Laureate, Egas Moniz, had been nominated twice for the Nobel Prize for his development of the cranial angiogram with his surgical associate, Almeida Lima, but was finally awarded the prize in 1949 for his introduction of lobotomy for psychiatric disorders. In the 1940s and 1950s more than 50 000 patients had lobotomies

in the US. This form of treatment has almost entirely fallen into disuse, ousted by the introduction of psychotropic medications and the lack of evidence for the benefits of leucotomy. After a lapse of another fifty years, in 2000 the Prize was awarded to Arvid Carlsson, Paul Greengard and Eric Kandel for ‘pioneering discoveries concerning one type of signal transduction between nerve cells, referred to as slow synaptic transmission. These discoveries have been crucial for an understanding of the normal function of the brain and how disturbances in this signal transduction can give rise to neurological and psychiatric diseases. These findings have resulted in the development of new drugs’ (Press Release, Nobel Prize Committee, 2000). Of the three Laureates, all working in basic science, Kandel was unusual in having embarked on a psychoanalytic training, which he abandoned for the laboratory. The successes of biological psychiatry gave rise to an optimism that a solution to the problems of the aetiology and treatment of psychiatric disorders was within grasp. Nowhere was this as ebullient as in the

8

PERSPECTIVES AND METHODS

US, where the last ten years of the century were designated ‘The Decade of the Brain’. The embracing of biological explanations for mental illnesses led to extravagant claims, such as the identification of the gene for homosexuality, and was largely responsible for the virtual extinction of psychoanalysis in the States. In the 1950s a psychoanalytic training was almost obligatory for anyone aspiring to practise as a psychiatrist, and most heads of psychiatry departments had completed this. In the UK there was also a swing towards biological psychiatry, but it was not as monolithic as in the States, although it did have a dramatic impact in one sector; the research units supported by the MRC. In the 1960s there were five such units engaged in research in the

1.4

field of social psychiatry: Norman Kreitman’s in Edinburgh, Peter Sainsbury’s in Southampton, John Wing’s in the Institute of Psychiatry in London, Michael Shepherd’s General Practice Research Unit in the same institution and George Brown’s in Bedford College, London. By the time John Wing retired in 1989 his and George Brown’s were the only two left. I took over from John Wing for a period of six years, after which the unit was closed. George Brown’s unit has not been continued after his retirement. At the time of the closure of my unit the MRC stated clearly that in future they would not support a unit that focused on social psychiatry without being integrated with biological research.

SOCIAL PSYCHIATRY IN THE UNITED STATES

The optimism generated by the experience of military psychiatrists in World War II had a stimulating effect on the emerging social psychiatry movement in the US, as it did in the UK. Formal recognition of the changing atmosphere in psychiatry came with the creation of a National Institute of Mental Health in 1949. The Institute was faced with the major task of shifting the focus of care from psychiatric hospitals to community services. The financial means to achieve this were made possible by another milestone piece of legislation, the Community Mental Health Centres Act passed by the Senate in 1963. This was a response to President Kennedy’s call for a new approach to the delivery of services to people with psychiatric illness. The sum of 2.9 billion dollars was appropriated from the federal budget for this purpose. The community mental health movement, which grew in strength from this injection of funds, was founded on the principles of social psychiatry, including the humane treatment of people with psychiatric illness, equality of access to health care, and the right of all citizens to full participation in society. There is a clear identity with the aims of the Civil Rights Movement and of Feminism, both of which were making a political impact during the same period. Many idealistic young people took posts in the community mental health centres and attempted to provide a high quality of care for the mass of long-term patients who

were being discharged from the psychiatric hospitals. There were many unanticipated obstacles to be overcome, including the fact that a substantial proportion of people with schizophrenia needed prolonged and sophisticated rehabilitation, which was not available in the centres. There was also considerable opposition from the public who held stigmatizing attitudes. Furthermore, there were entrenched financial interests, which the youthful workers lacked the political experience to combat. Widespread problems of homelessness developed among discharged patients, particularly in the cities. The resource of using private landlords to provide board and care often led to abuse of the former patients, who received a minimal standard of shelter and no care. Many of the discharged patients were living in conditions that were no better than in the psychiatric hospitals, and a considerable number ended up in prison, prompting the term ‘transinstitutionalization’ [15]. The financial provision for the centres was depleted by misappropriation of the federal funds by President Nixon in 1973. The net effect of these problems was to sap the enthusiasm of the proponents of the community mental health movement, which largely failed to fulfil its aims. Brown ([15], p. 149) considers that ‘the last era of general optimism was the community mental health period, roughly located in the decade and a half from

THE HISTORICAL DEVELOPMENT OF SOCIAL PSYCHIATRY 80

British Journal of Psychiatry American Journal of Psychiatry

70

Percent

9

60 50 40 30 20 1951

1956

1961

1966

1971

1976

1981

1986

1991

1996

2001

2005

Year

Figure 1.1 Proportion of psychosocial articles in American and British Journals of Psychiatry (Reproduced with permission from Cambridge University Press)

1960 1975 . . . many of the great promises of this approach were not met. In this failure we can locate the preconditions for the rise of a new biologism, a more strictly biomedical and asocial view of mental health and illness’. In the US the interest in social psychiatry has not been completely extinguished. Some enthusiasts continue to develop innovative and cost-effective community services, but the swing to a biological model of mental illness has been overwhelming. However, despite the vast sums of money that have been poured into biological research in the US, the Decade of the Brain failed to introduce any novel treatment for psychiatric illnesses, while during the same decade psychosocial treatments for schizophrenia and depression have been established by randomized controlled trials, including family intervention for schizophrenia [16], cognitive behaviour therapy for schizophrenia [17] and couple assisted therapy for depression [18]. An indication of the different historical trajectories of social psychiatry in the US and the UK is illustrated by a comparison of articles in the two principal general psychiatry journals in the US and UK, from which the great bulk of world psychiatric research emanates: the American Journal of Psychiatry (AJP) and the British Journal of Psychiatry (BJP). This study involved an analysis of the topics of articles in the two journals over the 55 years from 1950 to 2005, in which a full year of journals for the first and sixth year of each decade was scrutinized [19]. Articles were categorized broadly as biological, social and neutral (not fitting into either of the other two categories).

Inspection of the two lines in Figure 1.1 shows that in 1951 the AJP published a small majority of psychosocial articles, whereas the BJP published a great predominance of biological articles. Most of these dealt with aspects of insulin coma therapy, leucotomy, treatment of epilepsy and penicillin for neurosyphilis. During the following decade the proportion of biological articles in the BJP gradually fell, with a continuation of the same topics, but also studies on electroconvulsive therapy and the newly introduced psychotropic drugs: chlordiazepoxide, tricyclic antidepressants and antipsychotics. During this decade the proportion of psychosocial articles in the AJP declined as controlled and uncontrolled studies of the new psychotropic drugs began to be published. Then between 1961 and 1966 there was a steep rise in the proportion of psychosocial articles in both journals, the slopes being almost parallel. However, the difference in proportions between these two years’ issues was of much greater significance for the AJP (X2 ¼ 30.64, df.1, p < 0.001) than for the BJP (X2 ¼ 9.46, df.1, p < 0.001). Both journals maintained the high proportion of psychosocial articles over the next decade, the period identified by Brown ([15], p. 149) as the era of greatest optimism for community psychiatry. As noted above, it also coincides with the development of the Civil Rights Movement in the US and the rise of Feminism. In 1966 the AJP included a special section of one issue on Social Psychiatry, and articles were also published on ‘The stresses of the white female worker in the Civil Rights Movement in the South’ and ‘Psychological aspects of the Civil

10

PERSPECTIVES AND METHODS

Rights Movement and the Negro professional man’. These topics constitute further evidence for the influence of the cultural and political environment on the contents of both psychiatric journals, suggested by the timing of the rise evident from the graphs. In parallel with the declining fortunes of the community mental health movement, the proportion of psychosocial articles in the AJP begins to fall. This descent continues in an almost linear fashion over the next two decades, reaching its lowest level in 50 years (34.8%) in 2001. At this point in time the AJP features almost twice as many articles of a biological nature as psychosocial articles. By contrast, the proportion of psychosocial articles in the BJP, after a moderate fall from 57.9% in 1966 to 46.3% in 1981, rises slowly but steadily to 59.0% in 2005, its highest level in the 55 years of the survey. By chance the proportions in the two journals are virtually identical in 1986, when the descending graph of the AJP crosses the ascending graph of the BJP. From this point, in terms of the publication of psychosocial articles, the two journals have been moving progressively further apart over the next two decades. The BJP shows a significant increase in the proportion of these articles, while the AJP exhibits a significant decrease of approximately the same magnitude. As a result, by 2005 the difference in the composition of the two journals is highly significant. How can we account for the opposing trends in the publication of psychosocial articles in the American and British Journals of Psychiatry? They appear to reflect a genuine divergence in both the research effort and in the practice of psychiatry. Research in social psychiatry is more strongly influenced by clinical practice than biological psychiatry, which depends heavily on technical advances in areas such as genetics and brain imaging. There are major differences in the structure of the health services in the two countries, which determine the practice of psychiatry. In the US, health care is dominated by the private insurance companies such as Blue Cross Blue Shield, which offers health insurance in every US state. Their policy is to reject applicants who have a pre-existing medical condition. People with psychiatric illnesses often have a long prodrome before seeking medical help, enabling the insurance companies to exclude them on this ground. Furthermore, private health insurance is

frequently part of a package linked to employment, so that people without a job lose out. A high proportion of people who develop schizophrenia are unemployed at first contact with the services, 82% of AfricanCaribbean patients in a recent UK study [20]. Because psychoses are often life-long conditions, they are not profitable for private insurance companies, and therefore usually fall under the state medical care system, in which standards are uneven. By contrast, the UK National Health Service excludes nobody from health care, regardless of their economic status and the chronicity of their illness. It is truly comprehensive. Another important difference in practice is the tradition of home visiting in the UK. It was standard for general practitioners to visit their patients in their own homes, although this has become less common, whereas in the US doctors work in offices, to which patients are expected to travel. In the UK, community psychiatric nurses and community occupational therapists regularly see patients at home, and psychologists and psychiatrists do so when necessary. In fact, this is the ideological basis of community mental health teams and crisis teams, the aim being to ensure that everyone who needs the service has unrestricted access to it. A damper on swings of opinion in psychiatry is provided by the inherent caution of the UK psychiatric profession. Sceptical of embracing innovative movements uncritically, British psychiatrists were not enthusiastic about psychoanalysis, and it did not achieve the widespread acceptance that characterized American psychiatry in the mid-twentieth century. There have never been more than four hundred trained psychoanalysts in Britain. That is not to say that psychodynamic ideas and concepts have failed to influence the practice of psychiatry in the UK, but they have been absorbed into an eclectic mix of approaches rather than becoming the dominant paradigm. Similarly, while biological psychiatry has its adherents in the UK, few psychiatrists rely solely on physical methods of treatment, to the exclusion of attention to the patient’s social environment, including close relationships. In conclusion, the comprehensive nature of the National Health Service in the UK, the standard of care provided to all psychiatric patients regardless of diagnosis and chronicity, and the high proportion of

THE HISTORICAL DEVELOPMENT OF SOCIAL PSYCHIATRY

staff who see patients in the setting of their family through home visits, are conducive to a social approach to mental illness. In combination with the traditional eclecticism of British psychiatry, these factors will ensure the persistence of social psychiatry as an ideological and practical discipline. However, the advances in biological psychiatry cannot be set aside. The policy enunciated by the UK MRC during the Decade of the Brain is correct: collaboration is necessary between biological and social psychiatrists so that the advances in social psychiatry can be underpinned by new knowledge of brain functioning, and the discoveries of the workings of the brain can be given a meaning through understanding of the patients’ social environment.

REFERENCES 1. Hare, E. A. (1969) The relation between social psychiatry and psychotherapy, in Psychiatry in a Changing Society (eds S. H. Foulkes and G. Stewart Prince), Tavistock, London. 2. Clark, D. H. (1965) Adminstrative Therapy: The Role of the Doctor in the Therapeutic Community, Tavistock, London. 3. Mechanic, D. and Volkart, E. H. (1960) Illness behaviour and medical diagnosis. Journal of Health and Human Behaviour, 1, 86 96. 4. Young, A. (1981) When rational men fall sick: an enquiry into some assumptions made by medical anthropologists. Culture, Medicine and Psychiatry, 5, 317 335. 5. Health Education Studies Unit (1982) Final Report on the Patient Project, Health Education Council, London. 6. Kleinman, A. (1986) Social origins of distress and disease: depression, in Neurasthenia and Pain in Modern China, Yale University Press, New Haven, Connecticut. 7. Brewin, C. R. (1988) Cognitive Foundations of Clinical Psychology, Lawrence Erlbaum, London. 8. Brown, G. W., Andrews, B., Harris, T. et al. (1986) Social support, self esteem and depression. Psychological Medicine, 16, 813 831.

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9. Brown, G. W., Bifulco, A. and Harris, T. (1987) Life events, vulnerability, and onset of depression: some refinements. British Journal of Psychiatry, 150, 30 42. 10. Roth, A. and Fonagy, P. (2005) What works for whom? in A Critical Review of Psychotherapy Research, Guilford, New York. 11. Durkheim, E. (1951) Suicide: A Study in Sociology, Free Press, Glencoe, Illinois. Originally published 1897 (translated by J. A. Spaulding and G. Simpson), F. Alcan, Paris. 12. Goffman, E. (1968) Asylums: Essays on the Social Situation of Mental Patients and Other Inmates, Penguin, Harmondsworth. 13. Wing, J. K. and Brown, G. W. (1970) Institutionalism and Schizophrenia, Cambridge University Press, London. 14. Henderson, A. S., Byrne, D. G., Duncan Jones, P. et al. (1980) Social relationships, adversity and neurosis: a study of relationships in a general population study. British Journal of Psychiatry, 136, 574 583. 15. Brown, P. (1985) The Transfer of Care: Psychiatric Deinstitutionalisation and its Aftermath, Routledge and Kegan Paul, Henley on Thames. 16. Pharoah, F., Mari, J., Rathbone, J. and Wong, W. (2006) Family intervention for schizophrenia. Cochrane Database of Systematic Reviews, (3), Art. No.: CD000088. DOI: 10.1002/14651858. CD000088. 17. Jones, C., Cormac, I., Silveira da Mota Neto, J. I. and Campbell, C. (2004) Cognitive behaviour therapy for schizophrenia. Cochrane Database of Systematic Reviews, (3), Art. No.: CD000524. DOI: 10.1002/ 14651858. CD000524.pub2. 18. Leff, J., Vearnals, S., Brewin, C. R. et al. (2000) The London Depression Intervention Trial: randomised controlled trial of antidepressants versus couple therapy in the treatment and maintenance of people with depression living with a partner: clinical outcome and costs. British Journal of Psychiatry, 177, 95 100. 19. Leff, J. (2007) Climate change in psychiatry: periodic fluctuations or terminal trend? in Society and Psychosis (eds C. Morgan, K. McKenzie and P. Fearon), Cambridge University Press, Cambridge. 20. Mallett, R., Leff, J., Bhugra, D. et al. (2002) Social environment, ethnicity and schizophrenia: a case control study. Social Psychiatry and Psychiatric Epidemiology, 37, 329 335.

2 Why psychiatry has to be social Paul E. Bebbington Department of Mental Health Sciences, University College London, London, UK

Psychiatrie ist soziale Psychiatrie oder sie ist keine Psychiatrie Klaus Dorner [1] . . . when my friend, Sam Guze [. . .] entitled his Royal College Lecture: ‘Biological psychiatry: is there any other kind?’ he meant the answer to be: ‘Of course not’ and he was absolutely right. When I ask: Social psychiatry: is there any other kind? the only tenable answer is: ‘of course not’ Leon Eisenberg [2].

2.1

INTRODUCTION

Social psychiatry has no precise definition, but has been described, rather unambitiously, as a topic and a set of techniques of investigation. These techniques are primarily epidemiological, but include methods of evaluating social processes in relation to psychiatric disorders. It applies to psychiatry the purposes of epidemiology (identification of syndromes, refining the clinical picture of disorders, community health, individual risks, analytical and experimental epidemiology, operational analyses of health services, historical epidemiology [3]). There are tensions between those who, like Michael Shepherd [4], try to deal with the problem of defining social psychiatry by subsuming it under epidemiology and those, like John Wing [5,6], who take a broader view of its remit. In

my view, these positions are not radical enough: psychiatry has an essentially social component because the phenomena we seek to explain have inherently social attributes. While mental illness is by no means totally social, it is essentially social. We must therefore start further back. Psychiatry is a branch of medicine. By this we assert that it shares with medicine its matter and its method. However, in so doing, we open the door to complexity, as we shall see. The matter of medicine is the syndrome, and its method is the construction of syndromes and their use in testing hypotheses of aetiology, mechanism, pathology and treatment. Syndromes are hypothetical constructs derived speculatively from clinical knowledge and intuition: patterns of medical phenomena are

Principles of Social Psychiatry, second edition Edited by Craig Morgan and Dinesh Bhugra Ó 2010 John Wiley & Sons, Ltd.

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PERSPECTIVES AND METHODS

identified and grouped, with the idea that they will form useful substrates for investigation. Symptoms are medical phenomena that constitute syndromes, and syndromes are made up of patterns of symptoms (there is thus an element of bootstrapping in this intellectual process). If the various theories relating to a syndrome are well corroborated, we start to call them diseases. So far, we have been tellingly reluctant to do this in psychiatry. If the theories about particular syndromes are not corroborated, we look for better theories. Medicine, in this analysis, is thus very much a Popperian venture, and an extremely powerful means of generating knowledge. This is quite evident from its spectacular progress over the last century and a half. Syndromes have primacy over theories, in

2.2

that if the latter are refuted we will nevertheless stick by the syndrome. Only, however, up to a point: there may come a time when there has been so little gain in knowledge about the syndrome that we finally reject it on grounds of a lack of utility, and rearrange the medical phenomena into new forms [5]. This medical method is also that used in psychiatry. However, there is something unusual about the symptoms used to construct syndromes in psychiatry. Wing suggested that the term ‘symptom’ in psychiatry is analogous to its use in medicine. This might imply that the concept of symptom in psychiatry does not completely map on to the concept as used in medicine, and I would argue that such is indeed the case.

SOCIAL MEDICINE AND SOCIAL PSYCHIATRY

Social medicine is defined by its intentions: to understand how social and economic conditions influence health, disease and the practice of medicine, and to promote conditions whereby this understanding can improve the public health. In some respects social psychiatry looks like the psychiatric version of this endeavour. It is true that both rely heavily on the methods of epidemiology. Epidemiology is predicated on the concept of disease (the central medical construct) and on the derivative process of case finding. Social epidemiology involves the use of social concepts to explain patterns of health in the population. Such patterns are established by applying demographic and social constructs that themselves commonly arise from sociology. This, for example, would include the distribution of schizophrenia in relation to social class or urbanization [7 10]. In social medicine,

2.3

the social element is usually regarded as external to the concept of physical disease. While it is true that people’s social environment and their behaviour may determine a relatively strong exposure to the physical aetiological factors that lead to the disease, most social factors are not themselves generally regarded as being directly aetiological (the concept of stress is an exception, but in relation to physical disorders, it is usually formulated in terms of its physiological and physical effects). Similar sets of assumptions are held by many academics who carry out social psychiatric research. Their research may be valuable, but the assumptions carry risks in social psychiatry. This is because of the special nature of the disorders being investigated, based as they are on symptoms with very particular attributes.

THE MENTAL NATURE OF SYMPTOMS

All symptoms, whether relating to physical or psychiatric disorder, are based on self-report. Thus the details of cardiac pain are elicited by a process of crossquestioning about the nature of the experience. Such

self-reports enable the physician to focus on signs, broadly defined. These include both the appearance of the patient and the results of investigations. Thus the self-report is corroborated by external, consensually

WHY PSYCHIATRY HAS TO BE SOCIAL

verifiable, procedures, which are linked in turn to an ever-growing knowledge of underlying biological processes. This is not the case with psychiatric symptoms. There may be external signs corresponding to the internal experiences reported by psychiatric patients, but they do not command the same force of validation as in general medicine. Thus if someone behaves as if they are hallucinated by appearing to talk to imaginary voices, this has less value than clear self-reports from patients that they are indeed hearing voices. In psychiatry, the subjective content that makes up

2.4

15

the symptom has primacy over any accompanying signs. In order to consider these issues, I will relate most of the arguments that follow to schizophrenia, as it is generally regarded as having a major organic, i.e. neural, component. Schizophrenia is of particular interest because it is the condition that tests most strenuously both the psychosocial and the neural lines of explanation. It does this because of the symptoms on which the diagnosis is primarily based, viz. anomalous experiences and abnormal beliefs. These will be discussed in detail later in the chapter.

THE CARTESIAN AMBIGUITY AND SOCIAL PSYCHIATRY

Mental states are categorically different from brain states, in that we experience them, as it seems, from within. Nevertheless, mental states are generally taken to be predicated on the existence of brain states. This is of course a form of reductionism, perhaps the ultimate reductionist tenet. As such, it is what Popper [11] would call a metaphysical research programme, not testable as a totality but open to critical evaluation and capable of giving rise to testable and useful hypotheses, which then support the heuristic value of the programme. It is certainly plausible: although there are people who would believe otherwise, I am pretty certain I will no longer have mental states when my brain dies. I also feel reasonably securely that, so long as I have a morsel of brain, there will be thoughts. In other words, mental states are predicated on the existence of a brain in so far as the latter seems to be a necessary condition of the former. We must of course be very careful in our use of language in relation to brain states. To say that brains do something is at best a metaphor and at worst a category mistake. There is activity that underwrites propensity, but activity is not action, memory is not memories. Nothing based on self-report is primarily a neural construct. The link between brain states and mental states is a matter of wonder, although philosophically disturbing. However, there are circumstances in which it may also appear trivial. In my living room I see a man holding a child who is pale, bloodied and dead. The

anguish on his face and the distress I feel watching him is no doubt correlated with activity in brains that happen to be 3500 kilometres apart, but it is certainly not explicable in any satisfying way in such terms. In this instance, an adequate explanation must surely go beyond the neural to the psychological and the social. While it may be interesting, it is not enough to know how empathy might be related to mirror neurones, and the neural systems underlying mirroring and mimicry [12]. We need to know the whys and wherefores of this individual empathic act. The activity of brains is somehow segregated so that we are obliged to recognize and distinguish internal and external realities. The latter is projected, such that we perceive and recognize it as external. In other words, it is out there rather than in our minds. Although the ontological origins of the distinction between an inner and an outer world are a matter of dispute [13], it is hard for human beings to dispute the fact of the distinction at an experiential level. Our perception of an external reality is so compelling we virtually never question it. We may question what we see but we virtually never question that we see. We question our sensations, but rarely the fact of our senses. We are bolstered in this by a degree of corroboration so extensive that it is compelling in itself. Corroboration can take the form of consistency we recognize things as we remember them but also because of consensual verification. In our external world are entities that look like us, with whom we communicate

16

PERSPECTIVES AND METHODS

and whom we use to confirm our experience of the world. It is relatively easy to confirm matters of physical fact the existence of given numbers on paper, the position of mercury on a thermometer. However, social facts are more difficult. We may see our Prime Minister at a podium, we may agree on the actual words he uses, but column inches are written in an attempt to arrive at a consensus about what he meant, how it was received and what its implications are for future events. Moreover, such judgements rarely achieve final consensus. (Politicians of course like to take refuge in the so-called judgement of history, but happily that, too, is never final.) Unlike mental states, we perceive brain states on the outside. Indeed, in contradistinction to some other parts of our bodies, we have absolutely no direct information about them from the inside. We infer them from the results of our procedures for realizing them, particularly, these days, from neuroimaging. Thus the contrary claim, that brains are predicated on the existence of mental states, is equally defensible; the brain is a mental construct, albeit one that is very well corroborated. Such is the compelling nature of our experience of an external world we do not regard brains as mere figments of our productive imaginings. We thus readily believe that brains exist separately from us, and that functioning brains will exist after we ourselves no longer have mental states. Let us therefore accept the idea of the brain as the underpinning of mind. However, I would also argue that neural explanations are not the same stuff as mental explanations. They do not necessarily have primacy and may indeed be unfit for purpose in some circumstances.

2.5

MAKING SENSE IN AN ERROR-STREWN WORLD

Making sense of the world is what humans (and quite a few nonhumans) do. It relies on the receipt of information about the world and the analysis of that information in terms of our existing understandings. Making sense is easy when we have full information, 1

Unlike physical disorders, mental illnesses are always about problems engaging with the social world, and this is the way in which they are identified. The symptoms by which they are recognized have inherent social aspects, even when most bizarre. For example, auditory hallucinations usually take the form of voices and of people in a relation with the hearer. This is the quality identified by the protophenomenologist Brentano ([14], pp. 88 89) as intentionality. He asserted that mental states are directed towards things different from themselves, and this distinguishes them absolutely from physical states; all, and only, mental states exhibit intentionality.1 Mental illnesses may also have a basis in physical malfunction, but this is not necessarily true, and certainly not necessarily true in every case. Indeed, attempts to find such physical features have so far been nonspecific or ambiguous. The implication is that the aetiology of mental disorders is guaranteed to contain social components, and may indeed sometimes have predominantly social components. The position is further complicated, as we shall see, by the fact that abnormalities that appear qualitative may arise because of quantitative variation in normal processes rather than in qualitatively abnormal ones. What is clear is that the syndrome of schizophrenia is built out of mental experiences that cannot be mapped on to corroborative tests tapping into biological functions. This might be an empirical deficit open to remedy, but I will argue that it is in fact a conceptual one. The distinction between internal and external worlds, the possibility of error and the availability of consensual verification are all central to the concept of mental symptoms and thus of mental disorder.

but much harder when information is incomplete. A major function of this activity is the resolution of discrepancies, and much psychiatric symptomatology reflects idiosyncratic solutions to the fact of incomplete or incompatible information. There may

Interestingly, Brentano [14] did not insist that the things that mental states are about are extended and physical. They can be internal and mental, a view with parallels in modern psychological ideas about metacognition [15].

WHY PSYCHIATRY HAS TO BE SOCIAL

be neural impairments in our ability to receive information, arising variously from failing sense organs or failures in parts of the brain and its functions. Other impairments in this ability are only neural in a trivial sense, for instance when distorted reception is the result of incoming information discrepant with prior information we may not see something because we are not expecting it and we may reject information because it is incompatible with an existing set of beliefs. There are other instances where we just do not have enough information. This is rather similar to the efforts of the voice recognition software I am using to dictate this chapter. If I stumble, mumble or cough, it gives the impression of trying desperately to make sense of something inherently nonsensical, resulting in weird combinations of words. This is not a programme fault. It may have parallels in the confabulation seen in the Korsakoff syndrome, which, interestingly, seems at least partly to have social drivers: we confabulate partly because we know it is not normal or socially acceptable to have big gaps in memory. Thus the human propensity to make sense of things may misfire when there are discrepancies to be resolved. Consider an example: psychiatrists have struggled with the concept of impaired insight, which

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is taken as a key feature of psychosis. There have been attempts to liken this to the denial and neglect syndromes often seen with injuries to the right hemisphere of the brain. However, lack of insight into the nature of anomalous experiences seems in general more likely to be a secondary process in which the compelling nature of the experience of, say, hearing voices is set against the prior knowledge that voices cannot be disembodied. It does seem unlikely that such a bet on relative likelihoods is central to the psychotic process, particularly as insight appears a composite and dimensional phenomenon in a way that neglect syndromes are not. Lack of insight then becomes the resolution of discrepancies in a manner unconvincing to others. It is really no more than a statement that the individual is having to deal with a compelling experience. This emphasizes also that making sense of experience is normally a collegial (and therefore social) process. We check out our ideas with our fellows. Thus it is known both clinically and from research that social isolation reduces levels of insight [16]. It is also often apparent in relation to phenomena like folie a deux (and a trois and a quatre) [17]. Finally, it feeds into the development of odd ideas and delusions.

ANOMALOUS EXPERIENCES

The term anomalous experience is increasingly used as shorthand for a range of odd symptoms held to typify psychotic and quasi-psychotic states. They are of particular interest because they have inherently social components, and yet they involve transgression of the distinction between inner and outer worlds. They may also seem odd, and this was the foundation of Jaspers’ un-understandability argument, to the effect that mental phenomena we are incapable of understanding must have an additional cause, explicitly neural [18]. This would include such anomalous experiences as hallucinations, passivity experiences or abnormalities of the experience of thought. Bizarre ideas would also have a neural basis. These prima facie assumptions are based on the oddity of the reported experience. There is still mileage in the psychopathological refinement of our concepts of mental symptoms. We may amplify descriptions by attempting to discern the

processes underlying the mental experiences corresponding to the symptoms. This activity should be distinguished from actual explanation it is more akin to exegesis, although it does increase the potential targets for explanation. An example is provided by Frith in his interesting account of passivity experiences as a combination of ‘forward memory’ and an exaggerated sense of agency (‘if it is not me, it must be someone else’) [19]. The descriptions of psychotic symptoms in the psychopathological literature have resulted in relatively precise differentiation, but a relatively uncritical acceptance that the individual symptoms so constructed are distinct [20]. Nevertheless, psychopathological analysis may also be used to clarify linkages between symptoms conventionally regarded as separate. For example, there are relationships between thought insertion, loud thoughts, thought broadcast

18

PERSPECTIVES AND METHODS

and hallucinations. The essence of thought insertion is not the idea of external origin (a secondary explanatory delusion), but the loss of the sense of possession of the mental experience. This is shared by other passivity experiences, but also by auditory hallucinations. Loud thoughts are thoughts acknowledged as their own by the people experiencing them, but they have the quality of loudness that defines our experience of sound waves. This quality is one of the characteristic attributes of our external world and is shared of course with auditory hallucinosis. Descriptions of thought broadcast have been disappointingly vague, but close attention to the accounts of those who suffer from it reveals that the essential feature is the experience of thoughts that

2.7

are externally projected. Such thoughts share this feature with some, but not all, forms of auditory hallucinosis. Thus these four types of symptoms exhibit variously the loss of the sense of possession, loudness and external projection, and the presence or absence of each of these three features determines which symptoms may be identified. Taking Jaspers’ view, they all look like candidates for an inherently neural explanation. However, there is considerable evidence that hallucinations at any rate are causally related to particularly extreme social experiences, examination of which at least allows us to set out in more detail what is to be explained.

HALLUCINATIONS, PSYCHOSIS AND TRAUMATIC ABUSE

The abuse of children is sadly common. A recent UK survey estimated a prevalence of childhood physical abuse of around 24% and sexual abuse of about 11% [21]; higher estimates have been reported from the USA [22]. By the age of 7 years, approximately 17% of children from a nationally representative birth cohort in the UK reported being bullied [23]. This abuse has severe consequences for the mental health of the victims [24,25]. In particular, it has strong links with psychosis [26,27]. Child physical and sexual abuse is significantly associated with psychotic symptoms [28,29]. Lysaker et al. [30] found that over 40% of people with schizophrenia had experienced child sexual abuse. Using British National Psychiatric Morbidity Survey data, Bebbington et al. [24] reported relative odds of psychosis of around 12 in people who had experienced sexual abuse. Moreover, a history of childhood abuse in nonpsychotic members of the general population predicted the development of new positive psychotic symptoms at a two-year follow-up [31]. These links between trauma and psychosis form part of a triad. Thus there are also links between trauma and post-traumatic stress disorder (PTSD) (by definition), and between PTSD and psychosis. This has implications not just for the role of stress in the aetiology of schizophrenia, but also for potential mechanisms. Psychotic symptoms in response to combat trauma were reported by Paster as long ago as 1948, and

are not uncommon [32,33]. Hamner et al. [34] compared veterans displaying long-standing PTSD and psychotic features with a sample of patients with schizophrenia without PTSD. They found very few differences in the form and intensity of the psychotic features, suggesting that schizophrenia associated with PTSD is indistinguishable clinically from the condition in general. People with psychosis have a very high prevalence of PTSD, often undiagnosed [29,35]. High rates of PTSD in people with psychosis and of psychotic phenomena in patients with chronic PTSD were confirmed in their systematic review by Seedat et al. [36]. While the prevalence of major trauma is very high indeed, rates of frank PTSD are appreciably lower [37 41]. The severity of trauma is associated with the severity both of PTSD and of psychotic symptoms [30,39,40]. Thus early trauma appears to create a nexus of interacting adverse consequences. PTSD is a condition defined essentially by an intimate relationship between the content of symptoms and the experience of strongly traumatic events, in particular the phenomenon of re-experiencing. One possibility is that some people who have been exposed to extreme trauma develop psychotic symptoms (delusions, hallucinations) whose content is also closely related to the details of the traumatic experience. If this happens, it may come about by a totally different process from the genesis of symptoms in the majority of cases of schizophrenia, or it may not.

WHY PSYCHIATRY HAS TO BE SOCIAL

Some might argue that florid symptoms in PTSD merely mimic psychotic symptoms. Thus, re-experiencing may have a compelling visual or auditory quality that could be mistaken for hallucinations. However, even in veterans exposed to extreme combat stress, the distinction between flashbacks and psychotic symptoms can be clearly made [42]. In other studies as well, the meaningful connection between the characteristics of trauma and the content of symptoms is not always apparent. Thus, Butler et al. [43] felt that, in their series, the psychotic symptoms associated with PTSD were not themselves linked to re-experiencing the trauma. Hallucinations seem to be particularly frequent in psychosis associated with trauma. Thus, all but one of the Vietnam veterans with psychosis studied by David et al. [32] experienced auditory hallucinations. Sexual abuse has been strongly linked to hallucinations in other empirical studies [40,44]. Moreover, the trauma/ hallucination link does not appear to be restricted to schizophrenia. Hammersley et al. [45] found trauma was also associated with auditory hallucinations in bipolar disorder. This relationship was particularly strong for sexual abuse that had occurred in childhood. Hardy et al. [46] examined the issue in more detail. They found that in many cases where trauma precedes hallucinations, the hallucinations are only thematically related to the trauma they did not often involve recapitulation of the traumatic event. This suggests

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that the mechanism is not always a direct one involving the usual effects of trauma. Another aspect of the PTSD/psychosis link concerns the potential involvement of dissociative processes. Glaslova et al. [47] suggest that traumatic stress exerts its influence on schizophrenia precisely by increasing the tendency to dissociative processes. Holowka et al. [48] certainly found childhood trauma was associated with the significant presence of dissociative symptoms in people with schizophrenia. Kilcommons and Morrison [40] also reported that dissociative processes consequent upon trauma were associated with psychotic experiences, and with hallucinations in particular. However, it should be noted that this relationship has not been found in all studies [49]. Irwin [50] suggested that the link between dissociative experiences and PTSD might arise because both were associated with childhood trauma. However, controlling for childhood trauma did not remove the association. The links between trauma and hallucinosis in psychosis may be an example of a situation where an abnormal concatenation of normal social circumstances results in an outcome that appears to represent a qualitative shift. It probably does this by activating a response propensity that is variably but widely distributed in human populations, i.e. to hallucinate [51]. There are other aspect of psychosis where similar processes might apply.

DELUSIONS

Historically, the abnormal beliefs of people with schizophrenia have defined the concept of delusion. In other words, delusions were the ideas put forward by people who were regarded as mad. Again, it has always been felt that the process of delusion formation was a qualitatively abnormal one that would be neural in basis. Delusions are beliefs that are held to be abnormal primarily in content. It is possible to describe the characteristics of delusions (false ideas that are held with very strong conviction, are not amenable to counter argument or contrary evidence, are not shared by others, and motivate behaviour). However, there is no criterion or set of criteria that is both sufficient and necessary to define the phenomenon of delusion [52].

The inevitable inference is that delusional ideas shade into normal ideas. Moreover, some people whom you would not wish to call deluded have ideas of strange content. The distribution of unusual beliefs in the populace is extensive. Many people are convinced of the truth of ideas that are not supported by available and accessible evidence. These include beliefs in astrology, alien beings, telepathy or ghosts. Political beliefs are held with strong conviction even though they may be untried, or indeed tried and found wanting. Many religious ideas if taken literally are demonstrably false (the one that particularly exercised Martin Luther was transubstantiation). Nevertheless, people may adhere to their religious belief with extremely

20

PERSPECTIVES AND METHODS

Percentage of population

30 25

-0.2569x

y = 24.474e 2

R = 0.9286

20 15 10 5

Figure 2.1 The distribution of Paranoia Checklist items endorsed by students [58] (Reproduced from The British Journal of Psychiatry, 186: 427 435 with per mission from the Royal College of Psychiatrists)

0

strong conviction and they may act upon the idea, sometimes to their own detriment. However, we do not generally choose to regard people of faith as having a psychiatric disorder. This is the social getout clause: we will accept that a strange and false idea is not delusional if it is widely shared. The urge to make categorical the distinction between psychosis and normality leads us to discount unusual beliefs and experiences in people we would be reluctant to see as undergoing a psychosis. This has further implications for models of psychosis that invoke continuity with normal behaviour. It had become apparent by the late 1980s that paranoid ideation and anomalous experiences were not confined to clinical groups. It is clear that the frequency of auditory hallucinosis greatly exceeds the accepted prevalence of psychosis (e.g. see Reference [53]). The distinguishing feature of those in contact with services is how upset they are by their unusual experiences [54,55]. Postulating continuities is an important component of modern cognitive models of psychosis (e.g. see References [56] and [57]), which argue that the emergence of psychotic phenomena reflects abnormal combinations of largely normal mechanisms. Thus people who hold cherished ideas typically have a confirmatory bias, being unlikely to consider alternatives impartially. These beliefs shade into what would be regarded as delusional, since the thinking that underpins them is similar in style to that in people with acknowledged psychosis.

The distribution of odd beliefs in the community has been studied empirically. Freeman et al. [58] found that 30% of an internet sample of students had ‘paranoid’ beliefs, in other words, those reflecting self-reference and threat. Moreover, the cumulative frequency of individual paranoid ideas followed an exponential curve (Figure 2.1), with the relationship between them being hierarchical, such that more extreme ideas were predictive of those that were less extreme but not vice versa. At a single point in time the continuum is defined by differences between individuals, who are thus located at individual positions on the curve. However, people are themselves likely to vary in a way that would place them at different positions on the curve at different times, dependent on changing circumstances. In a sense, they would move along the curve. These findings have considerable relevance to the aetiology of psychosis. They imply that in some people movement along a continuum (indeed probably more than one continuum) results in the emergence of psychosis. Thus the role of aetiology is to explain why particular people make this journey at particular times in their lives. In the genetic arena, this suggests a focus on quantitative analyses [59], along with the identification of quantitative trait loci [60]. In the psychological domain, it implies the convergence of different psychological attributes some cognitive, some emotional [61 63]. There are also implications for treatment, in particular such psychological treatments as cognitive behaviour therapy [64].

0

5

10

15

20

Total number of checklist items

WHY PSYCHIATRY HAS TO BE SOCIAL

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THE SOCIAL NATURE OF PSYCHIATRIC SYMPTOMS AND THE GENETICS OF SCHIZOPHRENIA

The social element in psychiatric symptoms and the consequence that they cannot map perfectly on to underlying brain states may have caused a particular problem for the genetics of schizophrenia. The genetic project in schizophrenia is grounded on the assumption that abnormal brain states are necessary for the development of the disorder. The idea is of a causal chain between genes, the proteins they encode for, the enzymatic reactions mediated by the proteins, the neurophysiological and neurocognitive functions served by the enzymes, and finally the symptoms we see in people with schizophrenia. It might be anticipated that at every point in this chain some causal force is lost, resulting in an attenuated relationship between the gene and the schizophrenic exophenotype. It has been clear for a long time that, if schizophrenia is a genetic condition, it is polygenic. However, the search for the genes for schizophrenia has not been very successful. A number have been identified, but problems of replication have been rife [65,66]. Moreover, it has so far been notably impossible to identify individual genes with relative odds greater than 1.3. Neither is it clear how many genes might be implicated. It is likely to be a lot. If the greatest relative odds were indeed 1.3, we would need at least a hundred to account for the accepted values for the heritability of schizophrenia. Although we may know their effects at the molecular level, we do not know how these genes work to produce schizophrenia; nor do we know if they act singly within given families or whether they interact to produce schizophrenia more generally. The recent interest in copy number variants [67] may not help much, as they are likely only to account for 1% of the cases of schizophrenia, probably at the severe end and associated with clear neurological features. Again the mechanisms of action are obscure. This unsatisfactory situation has led to the suggestion that we should really be seeking the genetic basis for the endophenotype of schizophrenia, i.e. the brain phenomena underlying the disorder itself [68 70].

The hope is that better estimates of heritability can thus be obtained. This is a tacit recognition that mental states and brain states are not equivalent and, indeed, that mental states have an additional psychosocial component tending to attenuate the influence of individual genes. Gottesman and Gould [68] suggested that this approach potentially implies a deconstruction of the concept of schizophrenia. However, such a deconstruction would entail reconstruction: schizophrenia, but not as we know it. It is a serious acknowledgement of our failure to establish a compelling aetiological narrative for schizophrenia if we can only deal with it by opting to study the aetiology of something else. This is on the way to acknowledging that the disease construct of schizophrenia has failed in its heuristic task. In any case, the concept of the endophenotype in schizophrenia has also been challenged on heuristic grounds, as the genetics of the postulated endophenotypes is no more robust than that of the exophenotype [71]. There is a troubling paradox in these molecular genetic findings. As established from twin studies, schizophrenia certainly appears to have high heritability. The diagnosis of schizophrenia relies heavily on positive symptoms, and so the heritability of schizophrenia must be the heritability of positive symptoms. However, such endophenotypes as have been postulated, e.g. abnormalities in working memory [72], would link more directly to negative symptoms and to cognitive deficits. It may in any case be questioned whether heritability, as calculated, is fit for purpose. Height is an extremely heritable attribute, but we have failed so far to establish any single gene to account for its heritability (e.g. see Reference [73]). Some of the discrepancies may derive from the fact that heritability as calculated also encompasses gene gene, gene environment and environment gene interactions, and these may be very complicated indeed. When we engage with the world, the world engages with us and may change us.

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PERSPECTIVES AND METHODS

2.10

THE NATURE OF ENDOPHENOTYPES AND THE NATURE OF MENTAL SYMPTOMS

Caspi and Moffitt [74] argue that the biggest mystery of psychopathology is ‘How does an environmental factor, external to the person, get inside the nervous system and alter its elements to generate the symptoms of a disordered mind?’ This mystery has a counterpart: ‘How do the biological correlates of mental disorders so constrain the mind as to generate mental symptoms that are essentially about the external world? How does the endophenotype translate into the exophenotype?’ This question is made more difficult because neurocognitive studies are essentially a psychology of performance, and abnormalities are generally conceived as performance deficits. This lends itself easily to the important question of negative symptoms in schizophrenia even though the associations are modest [75]. However, we diagnose schizophrenia primarily from its positive symptoms. Thus we are left with the question of how deficits generate positive symptoms. This is an ancient issue in psychiatry and neurology. Hughlings Jackson, following Russell Reynolds and Herbert Spencer, differentiated negative and positive symptoms in epilepsy in the 1880s [76]. His model of positive symptoms is that they represent excitation or release from higher inhibitory control. In other words, positive symptoms are the consequences of negative symptoms. This assertion is open to empirical test: it implies that positive symptoms presuppose negative ones. However, it is well established that negative symptoms are not necessary for the emergence of positive symptoms. While the genetic basis has not as yet been substantiated, there is no doubt of an association between schizophrenia and various neurocognitive abnormalities. These involve both the cortex and subcortex, and subserve several discrete cognitive functions. However, their nature remains obscure. They may comprise dysfunctions in distinct domains, they may cluster, or they may represent a general neurocognitive deficit [77]. While up to 30% of people with schizophrenia perform within the normal range cognitively, it is possible that some high performers show

imbalances in specific functions, particularly memory and executive functions, in comparison with controls [78,79]. However, follow-up studies suggest that cognitive subtypes are not stable over time [80]. Indeed, in a ten-year follow-up of first-episode patients, IQ appears to revert to premorbid levels [81]. There is some suggestion of cognitive impairment being related to genes tentatively linked to schizophrenia, e.g. dysbindin and the val/met polymorphism in the catechol-O-methyl transferase gene [82]. It remains unclear if the impairment is general, or related to working memory or executive function [83 85]). It is also uncertain how specific the effect is to schizophrenia. Attempts using neuroimaging to link working memory deficits in schizophrenia with abnormalities in dorsolateral prefrontal cortical functioning have produced inconsistent results. The intention to search for neurocognitive correlates of schizophrenia is well founded, and may eventually produce more consistent results. It does remain possible that they may have environmental as well as genetic causes, although this is an under-researched area. Brain dysfunction is in any case likely to have very complex origins and consequences, given the way function almost certainly involves interaction at a modular level, and the capacity this allows for compensatory activity [86]. How might neurocognitive abnormalities generate the mental symptoms of psychosis? It is not difficult to see how memory deficits could contribute. Thus an unrecognized failure to remember the location of household objects might set the scene for wayward interpretations: things that are not where they were might be thought to have been moved by interlopers. However, memory is a tool that enables us to engage with the world; it is not the engagement itself. Some cognitive deficits have implications that are clearly and centrally social. These concern so-called social cognition. For instance, as a group, people with schizophrenia perform relatively poorly on tests of theory of mind abilities [87]. Such theory of mind

WHY PSYCHIATRY HAS TO BE SOCIAL

impairment is associated with both negative and positive psychotic symptoms, the latter including paranoia and passivity experiences. There is some evidence that social cognition may be relatively independent of other forms of cognition [88]. Social cognition also includes facial affect recognition and social cue perception. There is evidence of a degree of localization of these functions [87]. Facial affect recognition, particularly for negative emotions, also appears defective in some people with schizophrenia. Impairments in social perception in schizophrenia appear to have some specificity, not being so apparent in other psychiatric disorders. They are also relatively stable over time. Social cue perception involves the appreciation of more dynamic stimuli, usually in more than one modality: for instance, individuals with schizophrenia find it more difficult to identify the goals and intentions of people recorded on videotape. It is comparatively easy to see how a relative inability

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to process information about other people’s affect and intentions could lead to misinterpretations of a paranoid cast. In general, neurocognitive deficits could be seen as exerting a tonic control; as causes, they are tonic and permissive, rather than obligatory. This may be the proper model for genetic abnormalities and changes in dopamine metabolism. Dopamine may be the wind that fans the psychotic fire [89], but you can have fire without wind and it can burn without being fanned. Social causes may operate in a similar tonic way. External stress leading to affective changes may set the circumstances out of which psychotic symptoms emerge, but does not guarantee their emergence. These are examples of causes that are neither sufficient nor necessary, and it is difficult to conceive of endophenotypic influences that could be sufficient and necessary. However, some social causes may shape symptoms directly, as I will argue below.

THE CONCEPT OF THE PSYCHOSOCIAL

The word psychosocial is used with some profligacy in psychiatry, often without an adequately thoughtful consideration of its meaning. It implies the connection between the inner and outer worlds, the fact that our perception of the outer world is an aspect of our inner world, but that our subjective experience is of a reality we are effectively compelled to regard as external. Social contexts, circumstances and events are seen as outside phenomena, even though subjectively experienced. It is easier to study the psychosocial reality by trying to control either the subjective or the objective component (rather akin to the ‘bracketing’ strategy employed by the phenomenologists). Psychologists focus on subjective aspects; social scientists in contrast try to remove the subjective. This can be seen, for instance, in cognitive models of depression, which, whatever their provenance, are simultaneously cognitive and social [90]. A major area of psychosocial research that can be used to illustrate approaches to the psychosocial concerns so-called life events (see also Chapter 16). Difficulties in this sort of research arise from the fact that different people have different experiences, and also perceive them differently. As human beings with

both cognitive and empathic theory of mind, we can easily understand that some events might be particularly distressing, and thus may cause major affective and cognitive shifts in the persons exposed to them. The resulting subjective experiences, if sufficiently extreme, may be identifiable as symptoms, and there may be enough of these for the criteria for depressive disorder to be met. However, affective changes themselves may alter our perception of the events we have experienced. Thus the apparent link between event and disorder may be spurious. In the early days of life event research, there was a dispute about whether the impact of events should be assessed by the subjects themselves or be judged independently. This illustrates two principles. The first is that the impact of life events represents an interaction between the self and the world. The second is that it is possible to make a consensually verifiable assessment of the component that is external to the subject. Researchers sought techniques that would enable the subjective element of the impact of events to be stripped out. Initially, this involved panel ratings of lists of potential events preordained by the researchers. This certainly produces reliable ratings, but the

24

PERSPECTIVES AND METHODS

lists limited both the range and the individual attributes of the events that could be recorded. Brown and Harris [91] responded to this by having panels of raters assess the qualities and dimensions of real events that their research participants reported in the course of a semi-structured research interview. The rating procedure involved the presentation of vignettes of the individual events prepared by the interviewer. These included demographic and situational information about the participant, and a detailed description of the event and its context. The vignettes included no information about the participants’ evaluation of the event, their emotional response or their psychiatric state. Thus the subjective elements were removed so that raters could arrive at a consensus estimate of the impact such an event would have on the average person facing equivalent circumstances. The output is an objectivized assessment of a rather particular type: it uses theory of mind as a way of identifying the likely psychological consequences of the event, in other words, its social, emotional and cognitive demand characteristics. Although it may at first sight seem so, this is not tautological, as rating the event in this way retains the possibility of refuting the event/disorder link being investigated. It does have the disadvantage that the rating reflects complex ideas about the interplay of event attributes in eliciting responses. For this reason, the overall concept of contextual threat has been refined, so that events can be rated in terms of more specific attributes, such as loss, humiliation and intrusiveness [92 96]. The

2.12

quality of intrusiveness is of particular interest in that it potentially links the demand characteristics of certain events to the psychopathological characteristics of paranoid ideation. Over the last decade, several cognitive models of psychosis have been published (e.g. see References [56] and [97] to [102]). They seek to identify the origins of psychosis by adducing interactions between social contexts, emotional tone and cognitive processing. They have generated considerable research. Where this has focused on attributes with a social cast, it is the subjective accounts (attitudes or attributional style, for example) that are given primacy. A recent example using sophisticated statistical techniques to provide an account of psychological mechanisms in paranoia is given by Bentall et al. [103]. Based on structural equation modelling using data from 173 people with serious psychiatric disorders, the most plausible model for paranoia included separate effects of a pessimistic thinking style and impaired cognitive performance. It thereby links cognitive style with processes having a clear social component (pessimism). In some cases considerable effort is put into controlling the social environment in order that characteristic subjective responses can be investigated. Thus standardized virtual reality scenarios have been used to study the nature of paranoid responses [104,105]. Such studies complement the social research represented by life event studies, but the full possibilities of relating both sorts of variable to specific symptoms of psychosis have not yet been realized.

CONCLUSION

In this chapter, I have argued that the social element of psychiatric disorders is inalienable, because the disorders themselves incorporate the social world. Like Leon Eisenberg, I see biological and social research as inseparable necessities if we are to attain a full aetiological account in some ways this conclusion would suitably be termed a ‘no brainer’. However, the consequences for the shape of an effective research programme are profound. It is not just that we must research putative social and biological causes: we must also test models that explicitly integrate these influences. This may imply some deconstruction of

our conventional disease categories, particularly in moving to the investigation of specific symptom types. While this may be unsettling, we might thereby break out of what has signs of becoming a research impasse.

REFERENCES 1. D€ orner, K. (1972) Einleitung, in Soziale Psychiatrie (eds K. D€ orner and U. Plog), Neuwied, L€ uchterhand, pp. 7 20.

WHY PSYCHIATRY HAS TO BE SOCIAL

2. Eisenberg, L. (1997) A very British kind of social psychiatry. British Journal of Psychiatry, 171, 309 313. 3. Morris, J. N. (1957) Uses of Epidemiology, Livingstone, Edinburgh. 4. Shepherd, M. (1983) The origins and directions of social psychiatry. Integrative Psychiatry, 1, 86 88. 5. Wing, J. (1978) Reasoning about Madness, Oxford University Press, Oxford. 6. Wing, J. K. (1991) Social Psychiatry. Social Psychiatry: Theory, Methodology and Practice (ed. P. E. Bebbington), Transaction, New Brunswick, New Jersey, pp. 265 304. 7. Hollingshead, A. B. and Redlich, F. C. (1958) Social Class and Mental Illness, John Wiley & Sons, Inc., New York. 8. Mortensen, P. B., Pedersen, C. B., Westergaard, T. et al. (1999) Effects of family history and place and season of birth on the risk of schizophrenia. New England Journal of Medicine, 340, 603 608. 9. Pedersen, C. B. and Mortensen, P. B. (2001) Family history, place and season of birth as risk factors for schizophrenia in Denmark: a replication and reanalysis. British Journal of Psychiatry, 179, 46 52. 10. Sundquist, K., Frank, G. and Sundquist, J. (2004) Urbanisation and incidence of psychosis and depression follow up study of 4.4 million women and men in Sweden. British Journal of Psychiatry, 184, 293 298. 11. Popper, K. R. (1974) Scientific reduction and the essential incompleteness of all science, in Studies in the Philosophy of Biology (eds F. J. Ayala and T. Dobzhansky), Macmillan, London, pp. 259 284. 12. Iacaboni, M. (2009) Imitation, empathy, and mirror neurons. Annual Review of Psychology, 60, 653 670. 13. Russell, J. (1995) At two with nature: agency and the development of self world dualism, in The Body and the Self (eds J. L. Bermudez, A. Marcel and N. Eilan), MIT Press, Cambridge, Massachusetts, pp. 127 151. 14. Brentano, F. (1874) Psychologie vom empirischen Standpunkt, Duncker and Humbolt, Leipzig. 15. Flavell, J. H. (1979) Metacognition and cognitive monitoring: a new area of cognitive developmental inquiry. American Psychologist, 34, 906 911. 16. White, R., Bebbington, P., Pearson, J. et al. (2000) The social context of insight in schizophrenia. Social Psychiatry and Psychiatric Epidemiology, 35, 500 507.

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17. Enoch, D. and Ball, H. (2001) Folie a deux (et Folie a plusieurs), in Uncommon Psychiatric Syndromes, 4th edn (eds D. Enoch and H. Ball), Arnold, London. 18. Jaspers, K. (1959) General Psychopathology (translated in 1963 by J. Hoenig and M. W. Hamilton), Manchester University Press, Manchester, UK. 19. Frith, C. (2005) The neural basis of hallucinations and delusions. Comptes Rendus Biologies, 328, 169 175. 20. Schneider, K. (1957) Prim€are und sekund€are Symptome in der Schizophrenie, in Fortschritte der Neurologie und Psychiatrie, vol. 25 (translated by H. Marshall, as Primary and secondary symptoms of schizophrenia, in Themes and Variations in European Psychiatry, pp. 40 44, 1974, S. R. Hirsch and M. Shepherd) Wright, Bristol, pp. 487 490. 21. May Chahal, C. and Cawson, P. (2005) Measuring child maltreatment in the United Kingdom: a study of the prevalence of child abuse and neglect. Child Abuse Neglect., 29, 969 984. 22. Friedman, S., Smith, L., Fogel, D. et al. (2002) The incidence and influence of early traumatic life events in patients with panic disorder: a comparison with other psychiatric outpatients. Journal of Anxiety Disorders, 16, 259 272. 23. Arseneault, L., Walsh, E., Trzesniewski, K. et al. (2006) Bullying victimization uniquely contributes to adjustment problems in young children: a nationally representative cohort study. Pediatrics, 118, 130 138. 24. Bebbington, P. E., Bhugra, D., Brugha, T. et al. (2004) Psychosis, victimisation and childhood disadvantage: evidence from the Second British National Survey of Psychiatric Epidemiology. British Journal of Psychiatry, 185, 220 226. 25. Bebbington, P. E., Cooper, C., Minot, S. et al. (2009) Suicide attempts, gender and sexual abuse: data from the British Psychiatric Morbidity Survey 2000. American Journal of Psychiatry, 166, 1135 1140. 26. Read, J., van Os, J., Morrison, A. P. and Ross, C. A. (2005) Childhood trauma, psychosis and schizophrenia: a literature review with theoretical and clinical implications. Acta Psychiatrica Scandinavica, 112, 330 350. 27. Morgan, C. and Fisher, H. (2007) Environment and schizophrenia: environmental factors in schizophrenia: childhood trauma a critical review. Schizophrenia Bulletin, 33, 3 10.

26

PERSPECTIVES AND METHODS

28. Ellason, J. E. and Ross, C. A. (1997) Childhood trauma and psychiatric symptoms. Psychological Reports, 80, 447 450. 29. Mueser, K. T., Goodman, L. B., Trumbetta, S. L. et al. (1998) Trauma and post traumatic stress disorder in severe mental illness. Journal of Consulting and Clinical Psychology, 66, 493 499. 30. Lysaker, P. H., Meyer, P. S., Evans, J. D. et al. (2001) Childhood sexual trauma and psychosocial functioning in adults with schizophrenia. Psychiatric Services, 52, 1485 1488. 31. Janssen, I., Krabbendam, L., Bak, M. et al. (2004) Childhood abuse as a risk factor for psychotic experiences. Acta Psychiatrica Scandinavica, 109, 38 45. 32. David, D., Kutcher, G. S., Jackson, E. I. and Mellman, T. A. (1999) Psychotic symptoms in combat related post traumatic stress disorder. Journal of Clinical Psychiatry, 60, 29 32. 33. Calhoun, P. S., Stechuchak, K. M., Strauss, J. et al. (2007) Interpersonal trauma, war zone exposure, and posttraumatic stress disorder among veterans with schizophrenia. Schizophrenia Research, 91, 210 216. 34. Hamner, M. D., Frueh, B. C., Ulmer, H. G. et al. (2000) Psychotic features in chronic posttraumatic stress disorder and schizophrenia: comparative severity. Journal of Nervous and Mental Disease, 188, 217 221. 35. Mueser, K. T., Rosenberg, S. D., Goodman, L. A. and Trumbetta, S. L. (2002) Trauma, PTSD, and the course of severe mental illness: an interactive model. Schizophrenia Research, 53, 123 143. 36. Seedat, S., Stein, M. B., Oosthuizen, P. P. et al. (2003) Linking posttraumatic stress disorder and psychosis: a look at epidemiology, phenomenology, and treatment. Journal of Nervous and Mental Disease, 191, 675 681. 37. Priebe, S., Broker, M. and Gunkel, S. (1998) Involuntary admission and post traumatic stress disorder symptoms in schizophrenia patients. Comprehensive Psychiatry, 39, 220 224. 38. Neria, Y., Bromet, E. J., Sievers, S. et al. (2002) Trauma exposure and posttraumatic stress disorder in psychosis: findings from a first admission cohort. Journal of Consulting and Clinical Psychology, 70, 246 251. 39. Resnick, S. G., Bond, G. R. and Mueser, K. T. (2003) Trauma and posttraumatic stress disorder in people with schizophrenia. Journal of Abnormal Psychology, 112, 415 423.

40. Kilcommons, A. M. and Morrison, A. P. (2005) Relationships between trauma and psychosis: an exploration of cognitive and dissociative factors. Acta Psychiatrica Scandinavica, 112, 351 359. 41. Shevlin, M., Dorahy, M. and Adamson, G. (2007) Childhood traumas and hallucinations: an analysis of the National Comorbidity Survey. Journal of Psychiatric Research, 41, 222 228. 42. Ivezic, S., Oruc, L. and Bell, P. (1999) Psychotic symptoms in post traumatic stress disorder. Military Medicine, 164, 73 75. 43. Butler, R. W., Mueser, K. T., Sprock, J. and Braff, D. L. (1996) Positive symptoms of psychosis in post traumatic stress disorder. Biological Psychiatry, 39, 839 844. 44. Read, J., Agar, K., Argyle, N. and Aderhold, V. (2003) Sexual and physical abuse during childhood and adulthood as predictors of hallucinations, delusions and thought disorder. Psychology and Psychotherapy Theory, Research and Practice, 76, 1 22. 45. Hammersley, P., Dias, A., Todd, G. et al. (2003) Childhood trauma and hallucinations in bipolar affective disorder: preliminary investigation. British Journal of Psychiatry, 182, 543 547. 46. Hardy, A., Fowler, D., Freeman, D. et al. (2005) Trauma and hallucinatory experience in psychosis. Journal of Nervous and Mental Disease, 193, 501 507. 47. Glaslova, K., Bob, P., Jasova, D. et al. (2004) Traumatic stress and schizophrenia. Neurology Psychiatry and Brain Research, 11, 205 208. 48. Holowka, D. W., King, S., Saheb, D. et al. (2003) Childhood abuse and dissociative symptoms in adult schizophrenia. Schizophrenia Research, 60, 87 90. 49. Brunner, R., Parzer, P., Schmitt, R. and Resch, F. (2004) Dissociative symptoms in schizophrenia: a comparative analysis of patients with borderline personality disorder and healthy controls. Psychopathology, 37, 281 284. 50. Irwin, H. J. (2001) The relationship between dissociative tendencies and schizotypy: an artifact of childhood trauma? Journal of Clinical Psychology, 57, 331 342. 51. Johns, L. C., Nazroo, J. Y., Bebbington, P. and Kuipers, E. (2002) Occurrence of hallucinatory experiences in a community sample and ethnic variations. British Journal of Psychiatry, 180, 174 178. 52. Bebbington, P. E. and Broome, M. (2004) Exploiting the interface between philosophy and psychiatry. International Review of Psychiatry, 16, pp. 179 183.

WHY PSYCHIATRY HAS TO BE SOCIAL

53. Wiles, N. J., Zammit, S., Bebbington, P. et al. (2006) Self reported psychotic symptoms in the general population. British Journal of Psychiatry, 188, 519 526. 54. Hanssen, M., Peeters, F., Krabbendam, L. et al. (2003) How psychotic are individuals with nonpsychotic disorders? Social Psychiatry and Psychiatric Epidemiology, 38, 149 154. 55. van Os, J., Verdoux, H., Maurice Tison, S. et al. (1999) Self reported psychosis like symptoms and the continuum of psychosis. Social Psychiatry and Psychiatric Epidemiology, 34, 459 463. 56. Garety, P., Kuipers, E., Fowler, D. et al. (2001) Theoretical paper: a cognitive model of the positive symptoms of psychosis. Psychological Medicine, 31, 189 195. 57. Garety, P. A., Bebbington, P., Fowler, D. et al. (2007) Implications for neurobiological research of cognitive models of psychosis: a theoretical paper. Psychological Medicine, 37, 1377 1391. 58. Freeman, D., Garety, P. A., Bebbington, P. E. et al. (2005) Psychological investigation of the structure of paranoia in a non clinical population. British Journal of Psychiatry, 186, 427 435. 59. Linney, Y. M., Murray, R. M., Peters, E. R. et al. (2003) A quantitative genetic analysis of schizotypal personality traits. Psychological Medicine, 33, 803 816. 60. Plomin, R., Owen, M. J. and McGuffin, P. (1994) The genetic basis of complex human behaviors. Science, 264, 1733 1739. 61. Hanssen, M., Krabbendam, L., de Graaf, R. et al. (2005) Role of distress in delusion formation. British Journal of Psychiatry, 48 (suppl.), s55 s58. 62. Krabbendam, L. and van Os, J. (2005) Affective processes in the onset and persistence of psychosis. European Archives of Psychiatry and Clinical Neuroscience, 255, 185 189. 63. Krabbendam, L., Myin Germeys, I., Bak, M. and van Os, J. (2005) Explaining transitions over the hypothesized psychosis continuum. Australian and New Zealand Journal of Psychiatry, 39, 180 186. 64. Kuipers, E., Garety, P., Fowler, D. et al. (2006) Cognitive, emotional and social processes in psychosis: refining cognitive behavioural therapy for persistent positive symptoms. Schizophrenia Bulletin, 32, S24 S31. 65. Sanders, A. R., Duan, J., Levinson, D. F. et al. (2008) No significant association of 14 candidate genes with schizophrenia in a large European ancestry sample:

66.

67.

68.

69.

70.

71.

72.

73.

74.

75.

76. 77.

27

implications for psychiatric genetics. American Journal of Psychiatry, 165, 497 506. Crow, T. J. (2008) The emperors of the schizophrenia polygene have no clothes. Psychological Medicine, 38, 1681 1685. Walsh, T., McClellan, J. M., McCarthy, S. E. et al. (2008) Rare structural variants disrupt multiple genes in neurodevelopmental pathways in schizophrenia. Science, 320, 539 543. Gottesman, I. I. and Gould, T. D. (2003) The endophenotype concept in psychiatry: etymology and strategic intentions. American Journal of Psychiatry, 160, 636 645. Braff, D. L., Freedman, R., Schork, N. J. and Gottesman, I. I. (2007) Deconstructing schizophrenia: an overview of the use of endophenotypes in order to understand a complex disorder. Schizophrenia Bulletin, 33, 21 32. Skelley, S. L., Goldberg, T. E., Egan, M. F. et al. (2008) Verbal and visual memory: characterizing the clinical and intermediate phenotype in schizophrenia. Schizophrenia Research, 105, 78 85. Flint, J. and Munafo, M. R. (2007) The endophenotype concept in psychiatric genetics. Psychological Medicine, 37, 163 180. Horan, W. P., Braff, D. L., Nuechterlein, K. H. et al. (2008) Verbal working memory impairments in individuals with schizophrenia and their first degree relatives: findings from the Consortium on the Genetics of Schizophrenia. Schizophrenia Research, 103, 218 228. Weedon, M. N., Lango, H., Lindgren, C. M. et al. (2008) Genone wide association analysis identifies 20 loci that influence adult height. Nature Genetics, 40, 575 583. Caspi, A. and Moffitt, T. E. (2006) Gene environment interactions in psychiatry: joining forces with neuroscience. Nature Reviews, Neuroscience, 7, 583 589. Penn, D. L., Corrigan, P. W. and Racenstein, J. M. (1998) Cognitive factors and social adjustment in schizophrenia, in Handbook of Social Functioning in Schizophrenia (eds K. T. Mueser and N. Tarrier), Allyn & Bacon, Needham Heights, Massachusetts, pp. 23 223. Jackson, J. H. (1931) Selected Writings of JH Jackson, vol. 2 (ed. J. Taylor), Staples Press, London, pp. 3 92. Nuechterlein, K. H., Robbins, T. W. and Einat, H. (2005) Distinguishing separable domains of

28

78.

79.

80.

81.

82.

83.

84.

85.

86.

87.

PERSPECTIVES AND METHODS

cognition in human and animal studies: what separations are optimal for targeting interventions? A summary of recommendations from breakout group 2 at the measurement and treatment research to improve cognition in Schizophrenia New Approaches Conference. Schizophrenia Bulletin, 31, 870 874. Wilk, C. M., Gold, J. M., McMahon, R. P. et al. (2005) No, it is not possible to be schizophrenic yet neuropsychologically normal. Neuropsychology, 19, 778 786. Joyce, E. M., Hutton, S. B., Mutsatsa, S. H. and Barnes, T. R. E. (2005) Cognitive heterogeneity in first episode schizophrenia. British Journal of Psychiatry, 187, 516 522. Vaz, S. M. and Heinrichs, R. W. (2006) Stability and validity of memory based subtypes of schizophrenia. Journal of the International Neuropsychological Society, 12, 782 791. Van Winkel, R., Myin Germeys, I., Delespaul, P. et al. (2006) Premorbid IQ as a predictor for the course of IQ in first onset patients with schizophrenia: a 10 year follow up study. Schizophrenia Research, 88, 47 54. Hariri, A. R., Goldberg, T. E., Mattay, V. S. et al. (2003) Brain derived neurotrophic factor Val(66) met polymorphism affects human memory related hippocampal activity and predicts memory performance. Journal of Neuroscience, 23, 6690 6694. Hallmayer, J. F., Kalaydjieva, L., Badcock, J. et al. (2005) Genetic evidence for a distinct subtype of schizophrenia characterized by pervasive cognitive deficit. American Journal of Human Genetics, 77, 468 476. Woodward, N. D., Jayathilake, K. and Meltzer, H. Y. (2007) COMT Val108/158met genotype, cognitive function, and cognitive improvement with clozapine in schizophrenia. Schizophrenia Research, 90, 86 96. Mata, I., Arranz, M. J., Staddon, S. et al. (2006) The high activity Val allele of the catechol O methyltransferase gene predicts greater cognitive deterioration in patients with psychosis. Psychiatric Genetics, 16, 213 216. Hauser, M. D. and Young, L. (2008) Modules, minds and morality, in Hormones and Social Behavior (eds D. Pfaff, C. Kordon, P. Chanson and Y. Christen), Springer, Heidelberg, pp. 1 11. Pinkham, A. E., Penn, D. L., Perkins, D. O. and Lieberman, J. (2003) Implications for the neural basis of social cognition for the study of

schizophrenia. American Journal of Psychiatry, 160, 815 824. 88. Fine, C., Lumsden, J. and Blair, R. J. R. (2001) Dissociation between ‘theory of mind’ and executive functions in a patient with early left amygdala damage. Brain, 124, 287 298. 89. Laruelle, M. and Abi Dargham, P. (1999) Dopamine as the wind of the psychotic fire: new evidence from brain imaging studies. Journal of Psychopharmacology, 13, 358 371. 90. Bebbington, P. E. (1985) Three cognitive theories of depression. Psychological Medicine, 15, 759 771. 91. Brown, G. W. and Harris, T. (1978) Social Origins of Depression: A Study of Psychiatric Disorder in Women, Tavistock, London. 92. Finlay Jones, R. and Brown, G. W. (1981) Types of stressful life event and the onset of anxiety and depressive disorders. Psychological Medicine, 11, 803 815. 93. Harris, T. (1987) Recent developments in the study of life events in relation to psychiatric and physical disorders, in PsychiatricEpidemiology(ed.B.Cooper),Croom Helm, London, pp. 81 103. 94. Brown,G.W.,Harris,T.O.andHepworth,C.(1995)Loss, humiliation and entrapment in women developing depression: a patient and non patient comparison. Psychological Medicine, 25, 7 21. 95. Raune, D., Bebbington, P., Dunn, G. D. and Kuipers, E. (2006) Event attributes and the content of psychotic experiences in first episode psychosis. Psychological Medicine, 188, 221 230. 96. Raune, D., Bebbington, P. E. and Kuipers, E. A. (2009) Stressful and intrusive life events preceding first episode psychosis. Epidemiologia e Psichiatria Sociale, 18, 221 228. 97. Bentall, R. P., Corcoran, R., Howard, R. et al. (2001) Persecutory delusions: a review and theoretical integration. Clinical Psychology Review, 21, 1143 1192. 98. Birchwood, M. (2003) Pathways to emotional dysfunction in first episode psychosis. British Journal of Psychiatry, 182, 373 375. 99. Broome, M. R., Wooley, J. B., Tabraham, P. et al. (2005) What causes the onset of psychosis? Schizophrenia Research, 79, 23 34. 100. Fowler, D. (2000) Cognitive behaviour therapy for psychosis: from understanding to treatment. Psychiatric Rehabilitation Skills, 4, 199 215.

WHY PSYCHIATRY HAS TO BE SOCIAL

101. Freeman, D., Garety, P., Kuipers, E. et al. (2002) A cognitive model of persecutory delusions. British Journal of Clinical Psychology, 41, 331 347. 102. Morrison, A. P. (2001) The interpretation of intrusions in psychosis: an integrative cognitive approach to hallucinations and delusions. Behavioural and Cognitive Psychotherapy, 29, 257 276. 103. Bentall, R. P., Rowse, G., Shryane, N. et al. (2009) The cognitive and affective structure of paranoid

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delusions. Archives of General Psychiatry, 66, 236 247. 104. Freeman, D., Garety, P. A., Bebbington, P. et al. (2005) The psychology of persecutory ideation II: a virtual reality experimental study. Journal of Nervous and Mental Disease, 193, 309 315. 105. Freeman, D., Pugh, K., Antley, A. et al. (2008) Virtual reality study of paranoid thinking in the general population. British Journal of Psychiatry, 192, 258 263.

3 Categories and continuums Peter Tyrer Centre for Mental Health, Imperial College London, London, UK

Ever since the time of Harvey it has been realized that medicine cannot progress unless it has some form of shorthand that allows the essentials of disease to be communicated unequivocally to others. In short, we cannot do without diagnoses. Classification in psychiatry has lagged behind that in medicine and related disciplines and to some extent has been scorned because of its failures in this regard. This is unfair because psychiatric disorders are extremely difficult to classify and we do not have the advantages of our medical colleagues in being able to draw on a great deal of additional independent information that enables our classifications to be validated. Nevertheless, psychiatrists have been slow to accept the principles of formal diagnosis and classification and have been all too ready to dismiss these notions as relics of some outdated ‘medical model’ of psychiatry that should have no place in a humane and understanding mental health care system. This view fails to take account of the importance of classifying all conditions for purposes of efficiency and communication; if every problem we come across in practice is unique we have to spend a very long time communicating our accounts of this person to others and spend a much longer time treating them as we go through the process of trial and error in testing all the remedies known to man. Labelling patients is not

necessarily dehumanizing; it can be a great aid to selecting treatment, predicting prognosis and maintaining proper care across a variety of settings. Although many of these comments may be selfevident they are worth repeating because in the context of social psychiatry the criticisms of classification in general are often more pronounced. Because social psychiatry tries to deal with aspects of a person’s symptoms, functioning and context almost any form of classification will be found wanting. However, it will not do justice to the tremendous variety in this subject to abandon the task of sorting them out into some reasonable order, as this leads to anarchy. Throughout this chapter the advantages of categories and continuums (it might be better expressed as continua to keep with the original Latin, but as the word ‘continuums’ is widely used I beg to be irregular) in a good classification will be addressed. The focus of the chapter is mainly on the diagnosis of psychiatric disorders, but of course categories and continuums are used across the field of social psychiatry and so some of the principles described here can be extended far beyond the field of diagnosis. I am concentrating on the question of diagnosis because here there is most controversy. There is little argument that if you are comparing the intensity of a psychiatric symptom it is reasonable to use a rating scale that has a wide

Principles of Social Psychiatry, second edition Edited by Craig Morgan and Dinesh Bhugra Ó 2010 John Wiley & Sons, Ltd.

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PERSPECTIVES AND METHODS

range of scores; in other words, it describes a continuum of severity. In diagnostic practice it is necessary to use categories in order to become recognized;

3.1.

it is argued here that this might led to confusion and that strict rules are needed before categories are embraced.

DIFFERENCES BETWEEN DIAGNOSTIC CATEGORIES AND CONTINUUM

An ideal diagnostic category is a discrete entity that usefully separates it from all other diagnoses or, in an apt metaphor, ‘carves nature at its joints’. It therefore stands alone and its simple description should be able to indicate its cause, its nature, its likely presentations (signs and symptoms), its course with or without treatment, and its outcome. I have been lucky with my health to date and the only serious illness I had was pneumococcal pneumonia at the age of 5. Even at this time the diagnosis was close to the top level of the diagnostic tree. It describes the cause (the pneumococcus bacterium), the nature of its presentation (consolidation of the lungs), its presentation (high fever, tachypnoea and shortness of breath, with dullness to percussion over the affected lung and impaired inflation of the lobe of the lung concerned), its course (excellent outcome in uncomplicated cases with universal response to penicillin and most other antibiotics) and its outcome (usually complete recovery in the absence of complications or associated comorbidity). A diagnostic continuum is a spectrum from ‘no diagnosis’ to ‘complete diagnosis’. It can be formulated in many ways, most commonly in the form of an equal interval range of groups that can either have anchor points to identify them or a complete range with only numerical distance being measured to indicate the point on the scale. Many diagnostic continua in psychiatry follow the Likert scale principle, named after its founder [1], which was originally described to measure opinions along

the lines of the following responses to a set of statements: 1. Strongly disagree 2. Disagree 3. Neither agree nor disagree 4. Agree 5. Strongly agree. This can be easily transposed into a diagnostic format such as for the assessment of depression: 1. No depression 2. Mild depression 3. Moderate depression 4. Severe depression 5. Very severe depression. In the extreme form of the continuum the diagnosis can be represented as a line, commonly of an easily measurable length (e.g. 10 cm) and the distance of a diagnostic point measured from either end (see Figure 3.1).

Diagnostic point

___________________________________________________________________________ No depression

Figure 3.1

Very severe depression

Illustration of a diagnostic point along a continuum

CATEGORIES AND CONTINUUMS

3.2.

33

RELIABILITY AND VALIDITY

At first sight there appears to be no contest between these two approaches; the categorical approach wins hands down but it is wise to think again before coming to this decision. Doctors and decision makers in all parts of medicine prefer categorical classifications to dimensional ones as clinical decisions are categorical ones. You cannot decide to 30% treat a patient or admit 50% of a patient to hospital, so the decision maker abhors the dimensional system as unworkable in practice. However, this assumes that the category concerned is a valid one. The trouble is in psychiatry that so many of our diagnoses are not valid because we have no external tests that are independent and can answer the true test of validity, ‘Does this actually measure what it purports to measure?’ So the identification of the pneumococcus in my sputum was the clincher for my diagnosis of pneumococcal pneumonia, and although the sudden development of all the symptoms and signs of lobar pneumonia was almost as good, it was the identification of the bacterium that really counted. When there is no external measure of validity we fall back on gaining excellent reliability, and even though we are reminded that even 100% reliability in the detection of an alleged diagnosis adds not one jot to validity we are still reassured that without good reliability we are not going to achieve a valid diagnosis. There is now increasing evidence from research studies in all areas of medicine where there is no independent measure of disease that dimensional systems are more reliable. This is particularly true of psychiatry, and in the complex jungle of social psychiatry it is seen in its clearest form. Let me take one example, the vexed question of the classification of personality disorder [2,3]. This is a highly unpopular dichotomous diagnosis. According to current diagnostic practice people either have this nasty condition that no-one in their right mind could derive any satisfaction in having or you are squeaky clean with no personality disturbance at all. How do we decide on the dividing line between awfulness and smug virtue? This is a very arbitrary process. Thus the ICD-10 and DSM-IV definitions of personality disorder describe this condition as ‘deviations of personal characteristics and behaviour

patterns from the norm’, manifest mainly as dysfunctional behaviour that is ‘pervasive’, and which leads to distress or impairment in social, occupational and personal function. This, although more reliably rated than any of the individual personality disorders [4,5], is still extraordinarily subjective, and it is easy to see how the diagnosis can become, in the words of Lewis and Appleby, ‘the patients psychiatrists dislike’ [6]. Dimensions are less stigmatic, more reliable and avoid false or arbitrary dichotomies. The reason they are more reliable is really a statistical relationship between the numbers of options available [7], summarized in Table 3.1. The caveats in Table 3.1 are very important. In basic language they are saying to the diagnoser, ‘Are you confident that the condition you are trying to classify has no clear natural boundaries?’ If it has, then these will determine the number of groups that are chosen. Thus, for example, in dementia there is increasing evidence that there are two main categories of disorder, full Alzheimer’s disease and mild cognitive impairment [8], and that these can be identified with increasing confidence. It would therefore be inappropriate to have a seven-point scale for diagnosing Alzheimer’s disease as here we do have sufficient a priori knowledge to be confident about the diagnosis of individuals using a few categories. However, in psychiatry this extra knowledge, mainly gained from independent biological and neuropsychological evidence, is relatively rare. As David Kupfer, charged with a major role in the construction of DSM-V, puts it pessimistically ([9], p. xvii): Despite many proposed candidates, not one labora tory marker has been found to be specific in identify ing any of the DSM defined syndromes. Epidemio logic and clinical studies have shown extremely high rates of comorbidity among the disorders, undermin ing the hypothesis that the syndromes represent dis tinct etiologies. Furthermore, epidemiologic studies have shown a high degree of short term diagnostic instability for many disorders. With regard to treat ment, lack of treatment specificity is the rule rather than the exception.

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PERSPECTIVES AND METHODS

Table 3.1

Improved reliability of dimensional continuums compared with categorical classification

.

A computer simulation study (Monte Carlo study) designed to investigate the extent to which the interrater reliability of a clinical scale is affected by the number of categories or scale points . All scale points between 2 (dichotomous) and 100 were examined . Results indicated that reliability (agreement between raters) gradually increased between 2 and 7 points in the scale . Beyond 7 points no substantial increase in reliability occurred no matter how many scale points were examined Caveats These findings only hold under the following conditions: (1) The research investigator has insufficient a priori knowledge to use as a reliable guideline for deciding on an appropriate number of scale points to employ (2) The dichotomous and ordinal categories being considered all have an underlying metric or continuous scale format (From Cicchetti, D. V., Showalter, D. and Tyrer, P. (1985) The effects of number of rating scale categories on levels of inter rater reliability: a Monte Carlo investigation. Applied Psychological Measurement, 9, 31 36.)

This candour is refreshing after the initial enthusiasm that greeted the introduction of DSM-III in 1980 [10]. Far too many people assumed that a reliable diagnosis derived from operational criteria was also a valid diagnosis. In truth, very few diagnoses in psychiatry can have any claim to validity; the best that can be obtained is a high level of clinical utility in the setting of its use, nicely described in the words of Kendell and Jablensky ([11], p. 8):

3.3.

CHOICE OF CATEGORY VERSUS CONTINUUM

From the guidance given above we can postulate a number of rules that can help to decide whether it is prefereable to use a category or continuum for any particular diagnostic construct in psychiatry (Table 3.2). Using the information in Table 3.2 it is easy to see how some disorders might best be moved to a Table 3.2

At present there is little evidence that most contem porary psychiatric diagnoses are valid, because they are still defined by syndromes that have not been demonstrated to have natural boundaries. This does not mean, though, that most psychiatric diagnoses are not useful concepts. In fact, many of them are invalu able. But, because utility often varies with the context, statements about utility must always be related to context, including who is using the diagnosis, in what circumstances, and for what purposes.

continuum from existing categories and how others can feel more secure in their current categorical state. Anorexia nervosa has support as a category as there are independent measures (weight loss, endocrine disturbance), there is clear clinical differentiation from other eating disorders (with a little concern about a

Questions to be asked before deciding on a categorical or continuum scale

Knowledge question

Answer

Choice of category or continuum

Is there a truly independent measure of the diagnosis?

Yes No

Use category Be inclined to use a continuum

Are there clear boundaries between the disorder and related ones?

Yes No

Use category Use continuum

Does the disorder have a different natural history and course from other (apparently related) disorders?

Yes No

Use category Use continuum

Is there a specific treatment for the disorder that makes it useful to identify separately?

Yes No

Use category Use continuum

CATEGORIES AND CONTINUUMS

fuzzy boundary with atypical anorexia nervosa) and the natural history of the condition is different from other disorders (with a very much higher mortality rate) [12]. Other conditions, such as ‘major depressive episode’ in DSM, are much more shaky as diagnostic entities. Major depressive episode does not have independent

35

measures justifying its diagnosis we are still looking for a successor to the dexamethasone suppression test [13] and its boundaries are very difficult to define. It is therefore not surprising that ICD-10 [14] moves towards the continuum option of mild, moderate and severe depression in its classification.

3.4. IMPORTANCE OF CLINICAL UTILITY Diagnosis is a useful shorthand for clinicians wishing to communicate a commonality in a few words, and a good diagnosis is only valuable if it is perceived as useful by the user. This is especially true of treatment. Any condition that leads to a specific treatment recommendation (probably the most important item in Table 3.2) is going to be very popular in clinical practice but is has to be backed by proper evidence. Thus, a suggestion several years ago that pimozide, an otherwise unremarkable antipsychotic drug, was a specific treatment for monosymptomatic hypochondriacal psychosis [15] led to a great interest in both the diagnosis and treatment of this condition. The evidence for this specificity was always very flimsy and has never been supported and so both diagnosis and its alleged special treatment have faded into oblivion. Clinical utility is also an important consideration when a condition is very common and yet only a minority of people can receive, or are available, for treatment. Earlier in this chapter I indicated the someTable 3.3

Example of a continuum scale to record the severity of personality disorder

Level of personality disturbance Level 0 Level 1 Level 2

Level 3 Level 4

what false dichotomy between normal personality and personality disorder. Using this simple categorical system it appears that between 4 and 10% of the total adult population of any country has a personality disorder [16,17]. These are staggering numbers, as it implies that 150 000 400 000 people in the UK have this medical condition. Subsumed within this group are around 300 people who have alleged ‘dangerous and severe personality disorder’ [18], but in the present classification structure they are indistinguishable from the others. It had been noticed in several past studies that the more severe personality disordered patients tend to have a much greater number of personality disorders than those with milder disorders [19 21]. In our own work we found that those with single personality disorders with apparently severe symptoms paradoxically had less associated morbidity than those with milder symptoms but with more personality disorders that crossed clusters. This led to a new continuum of classification [22] (Table 3.3) that has been shown to very useful in practice [23].

Features No personality disorder (i.e. good capacity to form relationships, reasonable personal resources to draw on at times of adversity) Personality difficulty (tendency for enduring patterns of behaviour to interfere with social functioning at times of particular stress and vulnerability but not at other times) Simple personality disorder particular and persistent personality abnormalities that create significant problems in occupational, social and/or personal relationships (present cutoff point for personality disorder in both ICD 10 and DSM IV) Complex or diffuse personality disorder widespread personality abnormalities covering more than one cluster of personality disorders Severe personality disorder widespread personality abnormalities covering more than one cluster of personality disorders and leading to gross societal disturbance

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3.5.

SOME ADVICE FOR SOCIAL PSYCHIATRY

This account indicates that both categories and continuums have a place in social psychiatry. In the past too much reliance has been placed on categorical descriptions that have often been based more on a combination of dogma and clinical consensus rather than evidence. The use of continuums is preferable in the absence of evidence, as they convey more information, generally lead to better agreement and produce data that are useful in generating hypotheses. However, there is no alternative to a categorical description when decision making has to follow on from the identification of a syndrome or disorder, so all diagnostic continuums should have anchor points that allow categorical separation, often a dichotomous one, so that they can be used to advise decision makers. With this in mind a somewhat nebulous concept such as ‘social inclusion’ can now be placed on an investigative path and explored in the same way as any other scientific concept.

REFERENCES 1. Likert, S. (1932) Technique for the measurement of attitudes. Archives of Psychology, 140, 1 55. 2. Livesley, W. J., Schroeder, M. L., Jackson, D. N. and Jang, K. L. (1994) Categorical distinctions in the study of personality disorder: implications for classification. Journal of Abnormal Psychology, 103, 6 17. 3. Clark, L. A., Watson, D. and Reynolds, S. (1995) Diagnosis and classification of psychopathology: challenges to the current system and future directions. Annual Review of Psychology, 46, 121 153. 4. Bronisch, T. (1992) Diagnostic procedures of personality disorders according to the criteria of present classification systems. Verhaltungstherapie, 2, 140 150. 5. Bronisch, T. and Mombour, W. (1994) Comparison of a diagnostic checklist with a structured interview for the assessment of DSM III R and ICD 10 personality disorders. Psychopathology, 27, 312 320. 6. Lewis, G. and Appleby, L. (1988) Personality disorder: the patients psychiatrists dislike. British Journal of Psychiatry, 153, 44 49.

7. Cicchetti, D. V., Showalter, D. and Tyrer, P. (1985) The effects of number of rating scale categories on levels of inter rater reliability: a Monte Carlo investigation. Applied Psychological Measurement, 9, 31 36. 8. Ritchie, K. and Touchon, J. (2000) Mild cognitive impairment: conceptual basis and current nosological status. Lancet, 355, 225 228. 9. Kupfer, D., First, M. B. and Regier, D. E. (2002) Introduction, in A Research Agenda for DSM V (eds D. Kupfer, M. B. First and D. E. Regier), American Psychiatric Association, Washington, DC, pp. xv xxiii. 10. American Psychiatric Association (1980) Diagnostic and Statistical Manual of Mental Disorders, 3rd revision, American Psychiatric Association, Washington, DC. 11. Kendell, R. and Jablensky, A. (2003) Distinguishing between the validity and utility of psychiatric diagnoses. American Journal of Psychiatry, 160, 4 12. 12. Papadopoulos, F. C., Ekbom, A., Brandt, L. and Ekselius, L. (2009) Excess mortality, causes of death and prognostic factors in anorexia nervosa. British Journal of Psychiatry, 194, 10 17. 13. Carroll, B. J. (1985) Dexamethasone suppression test: a review of contemporary confusion. Journal of Clinical Psychiatry, 46, 13 24. 14. World Health Organization (WHO) (1992) ICD 10: Classification of Mental and Behavioural Disorders, World Health Organization, Geneva. 15. Munro, A. (1978) Monosymptomatic hypochondriacal psychoses: a diagnostic entity which may respond to pimozide. Canadian Psychiatric Association Journal, 23, 497 500. 16. Torgersen, S., Kringlen, E. and Cramer, V. (2001) The prevalence of personality disorders in a community sample. Archives of General Psychiatry, 58, 590 596. 17. Coid, J., Yang, M., Tyrer, P. et al. (2006) Prevalence and correlates of personality disorder in Great Britain. British Journal of Psychiatry, 188, 423 431. 18. Home Office/Department of Health (1999) Managing Dangerous People with Severe Personality Disorder. Proposals for Policy Development, Home Office, London.

CATEGORIES AND CONTINUUMS

19. Kass, F., Skodol, A. E., Charles, E. et al. (1985) Scaled ratings of DSM III personality disorders. American Journal of Psychiatry, 143, 627 630. 20. Oldham, J. M., Skodol, A. E., Kellman, H. D. et al. (1992) Diagnosis of DSM III R personality disorders by two semistructured interviews: patterns of comorbidity. American Journal of Psychiatry, 149, 213 220. 21. Dolan, B., Evans, C. and Norton, K. (1995) Multiple axis II diagnoses of personality disorder. British Journal of Psychiatry, 166, 107 112.

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22. Tyrer, P. and Johnson, T. (1996) Establishing the severity of personality disorder. American Journal of Psychiatry, 153, 1593 1597. 23. Pulay, A. J., Dawson, D. A., Ruan, W. J. et al. (2008) The relationship of impairment to personality disorder severity among individuals with specific axis I disorders: results from the National Epidemiologic Survey on Alcohol and Related Conditions. Journal of Personality Disorders, 22, 405 417.

4 Social, biological and personal constructions of mental illness Derek Bolton Institute of Psychiatry, King' s College London and South London and Maudsley NHS Foundation Trust, London, UK

4.1

CAUSES, DEFINITIONS AND BOUNDARIES

There are various ways in which mental illnesses may interact with features of social organization and social processes at macro- and micro-levels. One set of issues has to do with causal pathways affecting the population prevalence of mental illness generally or of particular conditions, that is to say, involvement of social factors in aetiology. A different aspect of the same issue is the influence of social factors on maintenance of the condition, affecting duration and course. Relevant macro-features of social organization and processes mainly have to do with exclusion from access to resources of one kind or another, such as education, employment, goods, social status and access to treatment, and they are realized in social communities, families and individuals, interacting there with micro-level risk and protective factors of many kinds. These questions of aetiology are only mentioned here to set them aside as not the focus of this chapter they are addressed elsewhere in the current volume. The main questions for the present chapter are more like this: What is the role of social factors in the cons-

truction of the representation of mental illness as opposed to health and the boundaries between them? What is the role of other factors, particularly the biological and the personal? How does it come to be that this or that condition is termed an illness, as opposed to, for example, distress or disability resulting from social exclusion, or a limitation of a person’s character, or a natural human condition, or life-style choice, and so forth? Why illness with its connotations of pathological abnormality, a matter for doctors and medical treatment, to be referred to and managed by the great institutions of health care? Here features of social organization and power relations clearly play a major role, with the views and values of government policy makers, popular cultural media, health care institutions and professions and manufacturers of treatment technologies (more or less coinciding with the opinions of the well-resourced and enfranchised key treatment consumers) having dominant roles. In brief, it is plausible to suppose that the representation of mental illness as opposed to health is at least in large part created and maintained substantially by social factors.

Principles of Social Psychiatry, second edition Edited by Craig Morgan and Dinesh Bhugra Ó 2010 John Wiley & Sons, Ltd.

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Here is Jaspers on this nearly a century ago ([1], p. 652): What health and illness mean in general are matters which concern the physician least of all. He deals scientifically with life processes and with particular illnesses. What is ‘ill’ in general depends less on the judgement of the doctor than on the judgement of the patient and on the dominant views in any given cultural circle.

On the other hand, while it may seem an easy slide from representations to social representations we can after all only think with concepts we learn in the culture science stakes a claim to identifying phenomena that are not a matter of social opinion and values, but just are natural facts. Chemistry’s periodic table of elements, for example, would illustrate this line of thought, as would the fact that the cardiovascular system regulates blood pressure. So the question is: Does illness in general and mental illness in particular refer to some natural fact that is not a matter of social opinion and values, but is rather a matter for the medical sciences? Jaspers in the quote above apparently does not look to the sciences to work out what is illness and what is not, but refers instead to the patient’s opinion and cultural views. Here is Kendell rounding on any such idea ([2], pp. 307 308): The fact is that any definition of disease which boils down to ‘what people complain of’, or ‘what doctors treat’, or some combination of the two, is almost worse than no definition at all. It is free to expand or contract with changes in social attitudes and therapeutic opti mism and is at the mercy of idiosyncratic decisions by doctors or patients. If one wished to compare the incidence of disease in two different cultures, or in a single population at two different times, whose criteria of suffering or therapeutic concern would one use? And if the incidence of disease turned out to be different in the two, would this be because one was healthier than the other, or simply because their atti tudes to illness were different?

Kendell identifies the problematic all but perfectly here. The consequences of a personal/social definition of health are very messy: boundaries are subject to

pressures from a wide variety of stakeholders, and vary across cultures and subcultures. To bring some order into this relativity, one needs something like a fact of nature, and the general approach that follows this alternative tack is accordingly called naturalism. Naturalism seeks to underpin the natural assumption often enough made by many physicians, psychiatrists, some other health care professionals, and evident in some lay discourse, that there is some clear-cut distinction between illness and health, a fixed matter of fact independent of social opinions, a matter for the biomedical or biobehavioural sciences, better recognized by trained health care experts, maybe hard to identify and clarify, but there all the same, underpinning the discourse and the institutions of health care. It is just a matter of getting clear about what this fact of the matter is. This turns out, however, to be very difficult. Naturalism in medicine has had a variety of forms including as an unselfconscious presumption in the great paradigms in nineteenth century medicine and neurology: illness as disease or lesion. More recently, over the past few decades since the 1970s, the most popular and influential kind of naturalism regarding illness and health has been based explicitly in ideas of evolutionary theory. This will be considered in the next section, but before that let us go back in time to when the whole problematic of the medical model in psychiatry first arose with gusto, in the 1960s. Two key themes in the 1960s critiques can be characterized briefly in the following way: first, that the medical model of mental illness rendered the conditions so labelled and the people who have them meaningless, disqualified and socially excluded; second, that the medical model mistook deviance that was essentially defined by social norms as being a matter of medical fact. In Foucault’s archaeology [3,4], madness was defined in Western modernity as the mere absence of reason, coinciding more or less with moral absence, concluding that madness had nothing to say, no voice, was silenced to be socially excluded, at a micro- and macro-social level. Broadly similar themes in contemporary context were explicated in Laing [5]. Mechanisms of disqualification and exclusion were explored in theory and in field studies by sociologists such as Goffman [6] and Rosenhan [7]. These historical and sociological critiques identified social processes as

SOCIAL, BIOLOGICAL AND PERSONAL CONSTRUCTIONS OF MENTAL ILLNESS

creating the category and reality of madness, meaningless unreason, incomprehensible chaos much to be feared and avoided. In Foucault’s historical vision especially, these processes were not at all instigated by medicine or psychiatry, but on the contrary, medical psychiatry itself came into being to manage and endorse them. In any case the upshot was that psychiatry as a branch of medicine was in charge of mental illness as an object of medical science and with its legalized powers of confinement. Therefore psychiatry, from this point of view, stood accused as in Szasz’ influential in-house critique [8] of misrepresenting conditions that were essentially defined by social and moral norms as instead matters of medical illness. These were key themes in the 1960s narrative that the category of mental illness with its characteristic features of meaninglessness, silence and disqualification is socially created, and that psychiatry in practice is a form of social control, masquerading as a branch of medicine, pathologizing problems of living and social deviance. Here is Kendell again, identifying the problem ([9], p. 25): The most fundamental issue, and also the most con tentious one, is whether disease and illness are nor mative concepts based on value judgements, or whether they are value free scientific terms; in other words, whether they are biomedical terms or socio political ones.

A particular problem arose for the American Psychiatric Association in the early 1970s, one that caused the Association to set about the task of defining ‘mental disorder’: gay activists lobbied to have homosexuality removed from the classification of mental disorders, then DSM-II [10]. The Association established the Task Force on Nomenclature and Statistics, including Robert Spitzer, setting it the task of reviewing the controversy and proposing a solution. It was concluded that ([10], p. 16): The consequences of a condition, and not its etiology, determined whether the condition should be considered a disorder. . . . It was proposed that the criterion for a mental disorder was either sub jective distress or generalized impairment in social effectiveness.

41

It was this proposal that formed the basis of the definition of mental disorder in the DSM-III, one that was carried forward, with some amendments, to the DSM-IV. Thus the definition of mental disorder in the DSM-IV ([11], pp. xxi xxii) and also the definition in the ICD-10 ([12], p. 5) both have distress and impairment of functioning as fundamental. Both definitions state that mental disorder is not the same as social deviance, that it has to involve ‘personal dysfunction’, this latter notion apparently resting on the generalized nature of impairment, not limited to a particular social context. This approach to conceptualizing mental disorder is appropriate for medicine and health care generally: the fundamental reality is that people find themselves in much distress, or with disability, and they consult a health care professional for help with this; social deviance, violation of society’s rules and regulations, is a different matter, for other agencies and institutions. However, while this construction is correct, it soon becomes complicated under pressure. Here are three broad kinds of complications: .

Some conditions in the psychiatric manuals do seem to be a matter of social deviance, albeit pervasive social deviance. This is explicit most clearly in the diagnostic criteria for the antisocial conditions. For example, the primary criterion (A) in the DSM-IV diagnostic criteria for antisocial personality disorder ([11], pp. 649 50) opens with: ‘There is a pervasive pattern of disregard for and violation of the rights of others’, followed by examples including ‘failure to conform to social norms with respect to lawful behaviours’. The primary problem here seems to be that other people or society at large are at risk of harm, rather than (as the primary problem) the individual himself. This of course is the kind of case that lends weight to the view that psychiatry is fundamentally in the business of defining social deviance under the guise of medical disorder and acting as an agency of social control rather than health care. These issues are not explicitly discussed or explained in the manuals. Meanwhile, however, outside of the calm of the diagnostic manuals, debates on these issues have accelerated, concerning, for example, the status of severe antisocial personality disorder

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in law and mental health services, the role of mental health services in the management of risk to the public, and so on. (Literature on these issues in the UK context include References [13] to [15].) .

Another kind of controversy refers to ‘disability’. Advocacy groups point out that disability is not an absolute category but is relative to expectations, environments and task demands typically imposed by majority social groups. This line of thought can be applied to both physical and mental disabilities. Such-and-such a condition would not give rise to disability or distress, it can be argued, if social expectations, environments and task demands were not incompatible with it, in which case inclusion in the psychiatric manuals as a mental disorder is actually an illegitimate pathologizing and negative evaluation of a difference, a cover for discrimination and social exclusion [16]. The 1970s controversy about whether homosexuality was or was not a mental disorder was one expression of this general kind of issue. Contemporary examples include, for example, controversy about ADHD: whether this is real illness, to be treated by medication, or rather temperamentally based high-activity levels in (mainly) boys causing difficulties because of socially inappropriate expectations in, for example, school settings (e.g. see Reference [17]).

.

A third kind of problem with grounding the conceptualization of mental disorder in distress and/or disability has to do with distinguishing disorder distress from normal, nonpathological distress. It is obvious enough that distress may be unconnected to mental disorder. Other kinds or causes of distress include, for example, distress due to normal life transitions, challenges and losses, in education and work, family life, relationships, ageing, and so on; and distress associated with social deprivation, exclusion or persecution. Given psychiatry’s understandable tendency to regard distress as fundamental to its domain, there is the inevitable risk of its spreading into kinds of suffering that are apparently not a matter of mental disorder. For example, there is concern that normal life suffering is being pathologized as depressive disorder [18] and that typically higher rates of diagnosable

mental disorders among the poor and in ethnic minority groups reflect social exclusion rather than disorder [19]. In fact the DSM-IV definition makes what is apparently an attempt to delineate normal distress from pathological, which would solve some but not all of the difficulties. It requires that mental disorder ‘must not be merely an expectable and culturally sanctioned response to a particular event, for example, the death of a loved one’ ([11], pp. xxi xxii, italics added). This italicized qualification appears to intend to rule out ‘normal’ or ‘normally caused’ distress and disability, but the term ‘expectable’ is vague and uncertain and cannot bear much weight. Many medical and psychiatric conditions are ‘expectable’ in any readily available sense, such as skeletal fractures following a (long) fall or stress reaction following profound psychological shock. What matters is apparently not ‘expectability’ or otherwise, but consequences in terms of distress, disability and risk thereof. All these various controversies listed above interrogatethecategoryofmentalillnessormentaldisorderand the legitimatedomainofmentalhealthservices, echoing problems identified in the 1960s. The definitions of mental disorder in the psychiatric manuals were formulated to clarify and legitimize, but, as is hardly surprising on reflection, definitions cannot possibly be expected to resolve all the complex and multifaceted issues involved. The definitions serve as position statements and are workable for most purposes, particularly in helping define perceived need to treat, allowing the manuals to get on with their main task of describing and classifying the conditions of interest as clearly as possible,optimizingreliabilityofdiagnosis for the purposes of research and communication generally. The business of resolving the problems in conceptualizing mental illness, distinguishing this category from what is normal, on the one hand, and from social deviance, on the other, has been taken up outside the diagnostic manuals, mainly by psychiatrists and philosophers. I have reviewed this literature, covering at greater length issues addressed in the present chapter, in a recent book [20]. As indicated above, the main conceptual alternative to a social definitionofillness and health invokes naturalism, and since the 1970s this has been based mainly on ideas from evolutionary theory.

SOCIAL, BIOLOGICAL AND PERSONAL CONSTRUCTIONS OF MENTAL ILLNESS

4.2

43

THE INTERPLAY OF EVOLUTIONARY, SOCIAL AND PERSONAL NORMS

In a series of highly influential papers beginning in the early 1990s Wakefield has proposed that the proper definition of mental disorder is as harmful dysfunction. He argued that this is a plausible reading of what is intended in the DSM-IV [21] and that this being the crucial claim dysfunction is properly understood along the lines of some mental or behavioural mechanism not functioning as ‘designed’, selected for, in evolution [22]. There has been a steady flow of literature produced over the past 15 years in which Wakefield’s proposal has been (usually) criticized in many and various ways, and in which Wakefield has vigorously defended his position (e.g. see References [23] to [37]). Wakefield’s evolutionary theoretical approach to defining mental disorder accepts that there is a socially embedded evaluative component in the concept, indicated by ‘harmful’, but insists that there is another component that is independent of social evaluations, which is a matter of fact, namely the reference to mental and behavioural mechanism not functioning ‘as designed’ (as selected for) in the evolutionary process. This appeal to facts of the matter independent of social evaluations is just what makes this approach a form of naturalism, intended in this case not so much as an alternative to a social construction of health and disease but at least as a crucial, principled limitation to it, based in an actual fact of the matter concerning what is and what is not functioning as designed (selected for) in evolution. So does this work? It is correct to suppose that concepts of function and dysfunction refer to systemic design and that evolutionary natural selection is a very particular theory about design, managing as it does without a designer. There are, however, and of course, other ways in which systems are designed, namely by individuals or groups making artefacts. By all means this has not much relevance to biological systems such as the cardiovascular system, which we may suppose has been designed, selected for, in evolution, without input from culture or individuals. However, in the case of mental life and behaviour, who or what is responsible for design and function? Here are three options:

1. Evolutionary natural selection 2. Socialization processes (education, training, culturalization) 3. Individual choice (signalled by individual differences, notwithstanding 1 and 2). The first of these is of course the one emphasized by naturalism (and is presumably a matter for the ‘natural sciences’), the second is emphasized by the social sciences and the third is emphasized by psychology. Relations between these three factors in human behaviour are complicated and contentious. The point of naturalism, however, is to construe mental and behavioural mechanisms only in the first way, excluding the second, and then the third will not appear as very relevant, since the main point is to distinguish the first from the second. Here is Wakefield in one of his early papers ([22], p. 381): What, then, is a dysfunction? An obvious place to begin is the supposition that a dysfunction implies an unfulfilled function, that is, a failure of some mechan ism in the organism to perform its function. However, not all kinds of functions are relevant. For example, one’s nose functions to hold up one’s glasses, and the sound of the heart performs a useful function in medical diagnosis. But a person whose nose is shaped in such a way that it does not properly support glasses does not thereby have a nasal disorder, and a person whose heart does not make the usual sounds is not thereby suffering from a cardiac disorder. A disorder is different from a failure to function in a socially preferred manner precisely because a dysfunction exists only when an organ cannot perform as it is naturally (i.e., independently of human intentions) supposed to perform. Presumably, the functions that are relevant are natural functions (italics added).

In this example of the function of the nose we have a clear fix on the evolved function (a kind of sense perception), a clear fix on an additional cultural function that is entirely unrelated, and ‘design’ of the

44

PERSPECTIVES AND METHODS

nose is pulled only one way. It is all much more complex, however, when we move from glasses and noses to social behaviours that are highly evolved, such as infant and child care, and to socially interpreted evolved behaviours such as fear, whether in social or natural environments. In these examples the clarity in identification of what is the evolved function and what is the socially designed function, and the sharp demarcation between them, are lost. In these complex cases, which in the realm of the psychological are probably the great majority, the biological evolved mechanism though it does have content (e.g. anxiety is about threat perception) is realized in a concrete social environment, and if the mechanism is failing, so is the concrete social norm. Conversely, if no social norm is being broken, the mechanism is not broken either. Wakefield’s analysis rests on a line of reasoning something like the following: 1. Concepts of systemic function and dysfunction and the distinction between the two essentially refer to the design of the system: normal functioning is functioning as designed; abnormal functioning is not functioning as designed. 2. In the case of psychological functions, we are only interested in those that are naturally designed (as opposed to socially designed). 3. In the case of natural psychological functions, the best scientific account of design that we have is evolutionary selection. 4. Hence, psychological dysfunction must involve failure to function as designed by/selected for in evolution. The first premise is fine, or good enough, and so is the inference to the conclusion from the three premises. The fault lies in the second premise, which transfers to the third, and hence to the conclusion. The problem with the second premise is that it assumes an invalid demarcation between natural and social psychological functioning. This invalid assumption affects the third premise, because this now assumes what is also invalid, that evolutionary selection in

isolation from social selection accounts for the class of psychological functions of interest. These invalidities compound in the conclusion, which postulates failure in hard-to-track-down natural, evolved psychological functions, in which social factors play no role. Modification of the argument leading to Wakefield’s conclusion would replace the second premise. The origin and design of psychological functioning typically include a complex mixture of genetic, evolved factors and social factors, with individual differences running though them both. Depending on which is dominant, or which is thought to be dominant, we can attribute the origin the design of the behaviour to human nature, to society, to subculture, to family (to family genes or behaviour or both) or to the individual’s constitution, character or personal values. In brief, according to current behavioural science in an evolutionary/genetic framework, three kinds of factor are implicated in the design of human behaviour evolutionary/ genetic, environmental, including the cultural, and individual and these three kinds of factor interact in complex ways. To each kind of design there corresponds a type of norm: evolutionary/genetic, social and individual again with no clear divisions and interplay between them. It follows that a mental state or behavioural response can be said to be dysfunctional to deviate from design norms in one or more of three ways: first, in that it fails to operate in the way designed by evolution; second, in that it fails to operate in the way taught by and sanctioned by the culture; and, third, in that it fails to work in the way the person intended, according to his/her needs and values as he/she sees them. However, these three kinds of dysfunction are not clearly separated, and they interact. The first kind belongs to an evolutionary theoretic framework and is relative to conditions in the Environment of Evolutionary Adaptiveness. The second kind of dysfunction is the one accessible to social theory; it is immersed in the present, in more or less diverse social realities. There is also a third reading of dysfunctional psychic life, the one at the individual level involving deviation from personal norms and values, evident to the person involved. This meaning has been neglected, to do with the fact that ‘madness’ was silenced though it is

SOCIAL, BIOLOGICAL AND PERSONAL CONSTRUCTIONS OF MENTAL ILLNESS

increasingly apparent in discourse led by service users. These are not, however, three meanings of psychological function and dysfunction the evolu-

4.3

45

tionary, the social and the individual but are rather three interwoven themes that run through all kinds of case.

IMPLICATIONS FOR THE PROPER DOMAIN OF HEALTH CARE

Naturalism represents the thought that the proper domain of medicine and health care is defined by a boundary in nature, in human nature, enclosing those states of the body/mind that are pathological, which deviate from the natural way that things should be. ‘Natural’ has to be used in this characterization, because otherwise it looks as though ‘the way things should be’ is going to have to have a social meaning, variable, arbitrary, fading into indelicacy in one direction and antisocial behaviour in another. Pathology so this line of thought runs has to be something really wrong with the body/mind, regardless of social mores, that medical sciences aim to identify and doctors help treat. In the sociological view of the matter, on the other hand, this appears as a working assumption of health care, more or less justifiable, somehow or other, in any case necessarily self-serving, while in practice mental health services in particular continue misconstruing social ills as pathology and managing social deviance of one kind or another. The pieces have been stuck on the board like this for a while. There is, however, one clear reality in the middle of all this, which is the person in distress, or better, distress they find unmanageable, and disability, in their terms, who comes to the clinic for help. This reality is so obvious to the clinician that it is hardly worth mentioning, except in exasperation that it has to be. On the other hand, what comes into focus in the sociological gaze is quite different: forms of social organization, distribution of and access to resources, and so on. What does not appear in the sociological view is the individual’s inner life, this being however the primary concern of the clinician. There are also specific issues here, not just to do with the general differences between socially and individually orientated approaches, issues specifically about mental illness of the sort identified by Foucault. In Foucault’s history, madness was constructed as incomprehensible danger, excluded and in need of control, gradually coming under the care of doctors and medical science,

eventually the new profession of psychiatry. In this story madness and psychiatry were constructed together, neither being the business of society at large. In brief, no one understands madness, nor psychiatry either, and this is a particular reason why the reality of the clinical encounter, the distress and disability involved, while recognized as of high importance, has tended to remain unspoken and unheard. Of course, much water has flowed under these particular bridges in the past few decades, including the linked processes of closing of the asylums, care in the community, steady growth of service user movements, and psychiatry and mental health care services openly tackling issues of what it can and cannot do, should and should not be asked to do. The clearest position for mental health services to occupy at present seems to me to be this: they offer treatment, based on the available science of body and mind, to the person who comes to the clinic for help in distress, or better, distress they find unmanageable, and disability, in their terms. This is the core business of mental health care, and, characterized in just this way, no one else’s. Social interventions at the national political level or local community level may help communities as a whole and some individuals in them, typically over the medium to long term. They are obviously not targeted on particular individuals. Who is there for the individual? This is a particular problem when social support structures have done what they can, which is more or less, and the persons themselves have done what they can, and they are still in unmanageable distress and possibly unable to carry on with some aspect of their lives, which they regard as crucial, child care or work for example. Where then? Health care is one abiding option it always has been and no doubt always will be. Health care, dealing in constructs of illness and health, is defined by three essential features: one is distress/disability of the person coming for help, the second is provision of help based on the available

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science of body/mind and the third is ethics, such as confidentiality, duty of care and cause no (more) harm. The other profession that aims to help individuals in self-identified serious trouble is the pastoral priesthood, the contrast being that in this meeting the trouble is interpreted as in the spiritual domain, suited to the special knowledge and skills of the priest. Health care is an abiding option, so is spiritual guidance and so is community care (care by the community). The extent and boundaries and interplay between these various responses to distress vary and are always in flux, influenced by available social representations, personal narratives, distribution and provision of resources and by more or less well-evidenced beliefs about what is the best way of helping what. All of this is of course very messy, in the ways Kendell excellently identified in his 1975 paper [2], quoted above. The boundaries of illness fluctuate with the idiosyncrasies of would-be patients, medical enthusiasm and the advertising power of manufacturers of treatment technologies; and they vary across cultures and subcultures. The hope of avoiding all this typically post- or late-modern mess is of course the attraction of naturalism, which is why Kendell in his 1975 paper [2] went on to turn to it, in its evolutionary theoretic form, later consolidated by Wakefield. It certainly would all be clearer if there was some natural fact about the body/mind which meant that it was dysfunctional, disordered, quite apart from any social theories about it, the legitimate domain for medical science and doctors. Evolutionary naturalism tried to underpin this intuition, but does not work because psychological phenotypes do not cleave apart into natural/evolved functions, on the one hand, and socialized functions, on the other. The influences on functioning are muddled up together. This leaves us defining the primary feature of illness in terms of harm, but then medicine and especially psychiatry inevitably gets involved in debates with other experts about what are the causes of harm and what are the appropriate preventions or remedies, debates about the boundaries of health care with libertarians (e.g. see References [38] and [39]), with social scientists [19], about the boundaries between illness and the spiritual dimension [40,41], and in-house health care debates about the boundaries of medical approaches with critical and post-psychiatrists [42], social workers [43]

and clinical psychologists [44]. These controversies about the nature and proper domain of mental health care are inevitable and good topics for ongoing examination, just the upshot of there being no domain of (current mainstream biomedical) medicine carved out of nature’s joints, still less for psychiatry, which is thoroughly involved in the social and moral and personal world where norms and values are diverse. However, notwithstanding and in the midst of these ongoing negotiations, the domain of mental health care is a permanent fixture, as one mode of response to individuals in unmanageable trouble. Complicated though all this is, it is familiar enough and manageable within a traditional view of medicine and health care. Doctors treat patients in trouble using available medical science, and other groups advertise help too, nonmedical or alternative medical. A much more difficult problem arises when the would-be patient does not identify him/herself as having a problem, or not one that has anything to do with his/her state of body or mind, not one that has anything to do with doctors, psychologists or any such thing. This is the ‘involuntary patient’, something of an oxymoron according to the traditional and comfortable conceptualization of health care. Interestingly, the theories of medical naturalism, appealing to such as lesions, diseases or broken evolutionary mechanisms, can readily envisage that an individual is disordered or ill, quite regardless of whether they think they are so or not. However, if naturalism is given up, because unviable, and emphasis is put instead on harm as experienced by the individual patient, then so far it is not obvious how someone who says they are OK, or in any case not in need of treatment, is any business of the health care professional. The reluctant patient of course becomes the business of the health care professional typically (though not invariably) because someone else brings them or sends them to the clinic, not because the person themselves is (necessarily) experiencing suffering or disability, but because of actual harm or risk of harm to others. In these contexts mental health services become involved in protection of the public from danger, in matters of public safety, which is more obviously a function of state agencies for preserving public order. In its role in compulsory detention and possibly treatment mental health services look like an agency of social control,

SOCIAL, BIOLOGICAL AND PERSONAL CONSTRUCTIONS OF MENTAL ILLNESS

a medicalized police force, and this is the role emphasized by the sociological and libertarian critiques that charge psychiatry with being just that. A simple idealized solution would look something like this. Health care professionals attend to willing patients in self-identified trouble who believe or who are willing to try out the belief that the professional’s expertise in matters of the body/mind can help them. The state and the police in particular deal with danger to the public. Perhaps the kind of case that best fits this simple picture is that of the antisocial conditions, which would be and mainly are directed (while they are the only problem) unambiguously to the judicial system, police and probation agencies, not to health care. However, in many kinds of case risk of harm to others and risk of harm to self are co-present, e.g. in an antisocial personality with suicidal tendencies or in some acute psychotic states, complicating the simple picture. Another kind of complication is that harm to self is judged not only by the identified patient but by others involved. There are the cases, for example, of psychotic episodes in which the person apparently presents some risk to others, and often also to him/herself, though he/she has no wish to be in hospital, is perhaps terrified of it, terrified altogether. All cases of compulsory admission involve by definition some overruling of the identified patient’s own current will, but the intention is that this is in the patient’s best interest, possibly as well for the protection of others, and is thus intended to be consistent with, an extension of, the traditional model of health care. This of course is a contentious and well-trodden area, and there is just one point to be made about it in the context of the themes pursued in this chapter. The proper domain of health care, if naturalism is given up as unviable, has to be understood in terms of distress that the person finds unmanageable, a self-identified disability, and a doctor, a mental health care professional, providing help based on the available science of body and mind. This is an entirely socially embedded understanding of illness and health care, though there is, by the way, all the room and role needed for the science, investigating causes, prevention strategies and treatments. In this socially embedded view of illness and health care which is some conceptual distance away from hypothetical lesions and diseases and broken mental

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mechanisms it is really no surprise at all, not an embarrassment, but a perspective to be welcomed, that distress and disability is not always just a matter for the individual but involves the interests of families, friends, the community and, if and when they are involved, the values of health care professionals. All this just reflects our interrelatedness. I have spent most of my professional life as a clinician working in child and adolescent services, where identification of distress, disability, risk and need to treat are sometimes matters of protracted investigation and negotiation involving mothers, fathers, grandparents, teachers, social workers, the child or adolescent brought along and the peer group in absentia. The negotiation of perspectives, stakeholding, values as to what is distress, disability, risk and need to treat is all part of the work. I assume adult mental health services involve much the same, reflecting the socially and interpersonally embedded nature of illness and health care.

REFERENCES 1. Jaspers, K. (1913) Allgemeine Pychopathologie, Springer Verlag, Berlin (3rd enlarged and revised edition, 1923). English translation of the 7th edition by J. Hoenig and Marian W. Hamilton, General Psychopathology, Manchester University Press, Manchester, 1963; Chicago University Press, Chicago, Illinois, 1963. Quotation with some revised translation from and page reference to this volume. 2. Kendell, R. E. (1975) The concept of disease and its implications for psychiatry. British Journal of Psychiatry, 127, 305 315. 3. Foucault, M. (1965) Madness and Civilisation: A History of Insanity in the Age of Reason, translated by R. Howardof an abridged version of Folie et Deraison. Histoire de la Folie  a l’Aˆge Classique (Librairie Plon, Paris, 1961), Tavistock, London; reprinted Routledge, London, 1997. 4. Foucault, M. (2006) History of Madness, English translation of Histoire de la Folie  a l’Aˆge Classique (Gallimard, London, 1972), Routledge, Paris. 5. Laing, R. D. (1960) The Divided Self, Penguin, Harmondsworth. 6. Goffman, E. (1961) Asylums, in Essays on the Social Situation of Mental Patients and Other Inmates, Penguin, Harmondsworth.

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7. Rosenhan, R. (1973) On being sane in insane places. Science, 179, 251 258. 8. Szasz, T. (1961) The Myth of Mental Illness: Foundations of a Theory of Personal Conduct, Harper & Row, New York. 9. Kendell, R. (1986) What are mental disorders? in Issues in Psychiatric Classification: Science, Practice, and Social Policy (eds A. M. Freedman, R. Brotman, I. Silverman and D. Hutson), Human Sciences Press, New York, pp. 23 45. 10. Spitzer, R. L. and Williams, J. B. (1982) The definition and diagnosis of mental disorder, in Deviance and Mental Illness (ed. W. R. Grove), Sage, Beverly Hills, California, pp. 15 31. 11. American Psychiatric Association (1994) Diagnostic and Statistical Manual of Mental Disorders, 4th edn, American Psychiatric Association, Washington, DC. 12. World Health Organization (WHO) (1992) The ICD 10 Classification of Mental and Behavioural Disorders: Clinical Descriptions and Diagnostic Guidelines, World Health Organization, Division of Mental Health, Geneva. 13. Kent County Council (2006) Report of the independent inquiry into the care and treatment of Michael Stone, http://www.kent.gov.uk/publications/ council and democracy/michael stone.htm. 14. Thornicroft, G. and Szmukler, G. (2005) The draft Mental Health Bill in England: without principles. Psychiatric Bulletin, 29, 244 247. 15. Lepping, P. (2007) Ethical analysis of the changes proposed to mental health legislation in England and Wales. Philosophy, Ethics, and Humanities in Medicine, 2, 5, http://www.peh med.com/content/2/1/5. Accessed 17 May 2007. 16. Oliver, M. (1990) The individual and social models of disability, http://www.leeds.ac.uk/disability studies/ archiveuk/Oliver/in%20soc%20dis.pdf. 17. Timimi, S. (2002) Pathological Child Psychiatry and the Medicalization of Childhood, Brunner Routledge, Hove. 18. Horwitz, A. V. and Wakefield, J. C. (2007) The Loss of Sadness: How Psychiatry Transformed Normal Sorrow into Depressive Disorder, Oxford University Press, Oxford. 19. Kutchins, H. and Kirk, S. A. (1997) Making us crazy, in DSM The Psychiatric Bible and the Creation of Mental Disorders, Free Press, New York.

20. Bolton, D. (2008) What is mental disorder? An Essay in Philosophy, Science and Values, Oxford University Press, Oxford. 21. Wakefield, J. C. (1992) Disorder as a harmful dysfunction: a conceptual critique of DSM III R’s definition of mental disorder. Psychological Review, 99, 232 247. 22. Wakefield, J. C. (1992) The concept of mental disorder: on the boundary between biological facts and social values. American Psychologist, 47, 373 388. 23. Kirmayer, L. J. (1994) Rejoinder to Professor Wakefield, Debate on ‘Is the concept of mental disorder culturally relative?’, with J. C. Wakefield, in Controversial Issues in Mental Health (eds S. A. Kirk and S. D. Einbinder), Allyn & Bacon, Boston and London, pp. 17 20. 24. Sadler, J. Z. and Agich, G. J. (1995) Diseases, functions, values, and psychiatric classification. Philosophy, Psychiatry, and Psychology, 2, 219 231. 25. Wakefield, J. (1995) Dysfunction as a value free concept. Philosophy, Psychiatry, and Psychology, 2, 233 246. 26. Fulford, K. W. M. (1999) Nine variations and a coda on the theme of an evolutionary definition of dysfunction. Journal of Abnormal Psychology, 108, 412 420. 27. Cosmides, L. and Tooby, J. (1999) Toward an evolu tionary taxonomy of treatable conditions. Journal of Abnormal Psychology, 108, 453 464. 28. Richters, J. E. and Hinshaw, S. P. (1999) The abduction of disorder in psychiatry. Journal of Abnormal Psychology, 108, 438 445. 29. Wakefield, J. C. (1999) Mental disorder as a black box essentialist concept. Journal of Abnormal Psychology, 108, 465 472. 30. Murphy, D. and Woolfolk, R. L. (2000) The harmful dysfunction analysis of mental disorder. Philosophy, Psychiatry, and Psychology, 7, 241 252. 31. Wakefield, J. C. (2000) Spandrels, vestigial organs, and such: reply to Murphy and Woolfolk’s ‘The harmful dysfunction analysis of mental disorder’. Philosophy, Psychiatry, and Psychology, 7, 253 269. 32. Houts, A. C. (2001) The DSM’s new white coat and circularity of plausible dysfunctions: response to Wakefield, Part 1. Behaviour Research and Therapy, 39, 315 345. 33. Wakefield, J. C. (2003) Dysfunction as a factual component of disorder: reply to Houts, Part 2. Behavior Research and Therapy, 41 (8), 969 990.

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34. Wakefield, J. (2007) The concept of mental disorder: diagnostic implications of the harmful dysfunction analysis. World Psychiatry, 6, 149 156. 35. Sartorius, N, (2007) A new way of reducing the prevalence of mental disorders? World Psychiatry, 6, 162 163. 36. Bolton, D. (2007) The usefulness of Wakefield’s definition for the diagnostic manuals. World Psychiatry, 6, 164 165. 37. Gold, I. and Kirmayer, L. J. (2007) Cultural psychiatry on Wakefield’s procrustean bed. World Psychiatry, 6, 165 166. 38. Szasz, T. (2006) Secular humanism and scientific psychiatry. Philosophy, Ethics, and Humanities in Medicine, 1, 5, http://www.peh med.com/content/ 1/1/5. 39. Bolton, D. (2006) What’s the problem? A response to ‘secular humanism and scientific psychiatry’. Philosophy, Ethics and Humanities in Medicine, 1, 6, http://www.peh med.com/content/1/1/6. Reprinted in Science and Ethics (ed. Paul Kurtz), Prometheus Books, New York, 2007, pp. 204 207.

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40. Fulford, W. and Sadler, J. (in press) Delusion and spiritual experience in the DSM: philosophical aspects of the concept of disorder, in Religious and Spiritual Issues in Psychiatric Diagnosis: Considerations for a Revised DSM (eds J. R. Peteet, F. Lu and W. Narrow), American Psychiatric Publishing, Inc. 41. Bolton, D. (in press) Commentary on Fulford and Sadler’s ‘Delusion and spiritual experience in the DSM’, in Religious and Spiritual Issues in Psychiatric Diagnosis: Considerations for a Revised DSM (eds J. R. Peteet, F. Lu and W. Narrow), American Psychiatric Publishing, Inc. 42. Bracken, P. and Thomas, P. (2005) Post Psychiatry: Mental Health in the Post Modern World, Oxford University Press, Oxford. 43. Kirk, S. A., Wakefield, J., Hseih, D. and Pottick, K. (1999) Social context and social workers’ judgement of mental disorder. Social Service Review, 73, 82 104. 44. Follette, W. C. (1996) Introduction to the special section on the development of theoretically coherent alternatives to the DSM system. Journal of Consulting and Clinical Psychology, 64, 1117 1119.

5 Social science perspectives: a failure of the sociological imagination Craig Morgan1 and Arthur Kleinman2 1 2

NIH Biomedical Research Centre and Institute of Psychiatry, King' s College London, London, UK Department of Anthropology, Harvard University, Cambridge, Massachusetts, USA

The clustering of substance abuse, street violence, domestic violence, suicide, depression, post traumatic stress disorder, . . . among people living in disintegrating communities runs against the professional medical idea that sufferers experience one . . . major problem at a time. That grouping of human problems also defeats categorisation of such issues as principally psychological or medical and, therefore, individual (Kleinman et al., [1] p. ix)

The primary purpose of this chapter is to introduce and discuss select social science approaches to the study of various aspects of mental disorder (primarily drawn from sociology and, to a lesser extent, anthropology1), in particular reflecting on what these have contributed to our understanding of mental disorder and on some key limitations. The broad areas we discuss include: the social construction of disorder (especially labelling theory), the social determinants of disorder, and the social and cultural influences on responses to disorder. More ambitiously, these approaches and their limitations are considered from

the perspective that mental disorder, in all its manifestations, is a form of social suffering [2], a form of distress that is intimately entwined with other social problems that both cause and result from experiences of emotional and mental distress. The emphasis on suffering as a collective, socially embedded experience challenges the construction of mental disorder as individual, as a set of discrete disorders requiring technical responses (be these psychological or pharmacological) of ever-increasing precision. What is more, it does this without negating or trivializing the distress that is experienced.

1 There is considerable overlap in the perspectives and methods of sociology and social anthropology. In this chapter, when we use the term ‘sociology’, we are indicating not only the discipline of sociology but also social anthropology.

Principles of Social Psychiatry, second edition Edited by Craig Morgan and Dinesh Bhugra Ó 2010 John Wiley & Sons, Ltd.

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5.1

SOCIAL SUFFERING

As will be discussed below, the characteristic subjective phenomena of mental disorder (e.g. sadness, anxiety, hallucinations) occur, at the very least in part, as a consequence of troubling and traumatic social experiences; they emerge in, and are shaped by, both local social worlds and wider social and economic contexts. In this sense, the experience of mental disorder is fundamentally social [3]. It occurs and is located within a particular social space, a complex nexus of social relationships and social structures that mould and transform that experience. The experience is not simply one of intrapsychic conflict or distress, of existential angst; it is frequently one of broken relationships, lost opportunities, social failures and hostility; of stigma, grinding poverty and chronic isolation. Others (especially friends and family) are almost always involved (at least to begin with), and much of the suffering occurs because the very things that come to matter most are threatened jobs, housing, social and family relationships, future possibilities. These are threatened not just by the impact of inner distress on the abilities of individuals to assume and sustain these social roles but also by the perceptions and responses of others in the wider society. In short, mental disorder is not experienced as a discrete problem, standing outside the flow of everyday life. It is part of an entangled set of circumstances. This is not to deny subjective experience; it is certainly not to deny the reality of mental distress. It is to recognize that experience is simultaneously subjective and collective. In other words, mental disorder is a form of social suffering,2 intimately entangled with the context within which it occurs, both cause and consequence of interlinked problems that may include poverty, social isolation, victimization and trauma. This clustering of problems, for example, is well illustrated in the World Mental Health Report [4,5].

Consider the following example. At the time of his first contact with mental health services, James was 33, unemployed and had lived alone for the past 14 years in a small flat.3 He first began to hear voices when he was around 16 or 17 years old, or perhaps earlier. At that time, he was living with his father and brother. He describes an extremely unhappy and abusive childhood living in a chronically unstable household. He had a poor relationship with his father and his brother, largely because of this, and he left school early with no qualifications. He never told his father or brother what he was experiencing, despite being distressed and angry, and says that he did not discuss what was happening with anyone else for fear they would think he was ‘crazy’. Only once did he attempt to talk to someone about his experiences, a friend: ‘I did discuss it with my friend I did, but he thought I was going crazy so I thought I’d leave it, you know don’t discuss it to anyone.’ Since being forced to move out of his father’s home when he was 19, and following a brief period of homelessness, he has lived alone in a one-bed local authority flat, continued to hear voices and has had minimal contact with others. Over time, James became increasingly isolated and eventually would leave his flat only to get food and collect his welfare benefits. He would spend his days watching television and smoking cannabis. The condition of his flat deteriorated and his living circumstances worsened. He had no furniture: ‘. . . there’s no carpet, no decorating or no chairs to eat your dinner on; I used to eat my dinner on the fridge and the fridge’s broken, the door on the front of the fridge was broken . . ..’ He describes at times being so hungry that he would shake, making it impossible for him to leave his flat to get money or food. He eventually contacted his local housing officer to carry out repairs in the flat: ‘. . . I phoned because there was a hole in the sitting room and he come to have a look . . . and he’d get

Kleinman et al. [1] provide the following broad definition: ‘Social suffering . . . brings into a single space an assemblage of human problems that have their origins and consequences in the devastating injuries that social force can inflict on human experience.’ (p. ix). James’ story is from a study of narratives of the experience of mental disorder collected as part of a large study of psychosis conducted in the UK. The name has been changed, and details amended, to ensure anonymity. 2 3

SOCIAL SCIENCE PERSPECTIVES: A FAILURE OF THE SOCIOLOGICAL IMAGINATION

someone to fix it, that happened . . . because I had my bed in the sitting room and when I sit on it the legs would go through the floor . . . .’ It was the housing officer who, concerned about James’s welfare, contacted social services and arranged for a home visit. Initially reluctant to go into hospital, James eventually agreed. When asked why, he replied: ‘I don’t know, I just felt like going out somewhere you know.’ What is striking about how James tells his story is that he focuses primarily on his isolation, his lack of money, his hunger and the appalling state of his accommodation. The experience of hearing voices is one facet of a series of interconnected difficulties that James endures; fear of how others will respond compounds his suffering and acts as a powerful barrier to confiding and help-seeking. To emphasize the social, collective experience of suffering and its interconnectedness with other experiences in the flow of everyday life presents a challenge to the predominant view in psychiatry of mental disorders as discrete diseases. This perspective, codified in the Diagnostic and Statistical Manual (DSM) and International Classification of Diseases

5.2

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(ICD), incorporates a set of assumptions about underlying aetiologies and treatment approaches that privileges the individual, the biological and the technical. This is part of a broader trend to strip all forms of suffering from the social context within which it occurs, to individualize and medicalize, to provide quick-fix cures in the form of pharmacological agents and time-limited psychotherapy [6 8]. From a social science perspective, however, it is inadequate to see disease (be it mental or physical) or other forms of distress as affecting a single person. There is a need to extend outwards into the social space it is here that suffering occurs, is understood and managed. As the quotation at the head of this chapter suggests [1], suffering rarely separates into discrete boxes, and its causes and effects are rarely limited to individuals as much of the work reviewed below shows. This work, however, is theoretically disparate and just as the formulation of mental disorder as a form of social suffering provides a basis from which to critique psychiatry, so it provides for a critical reflection on some of the more prominent social science theories of, and approaches to, mental disorder.

THE SOCIOLOGICAL IMAGINATION

In considering social science perspectives on mental disorder, it is worth remembering that the original scope of sociology was broad and ambitious. The founding sociological theorists (e.g. Comte [9], Marx [10], Durkheim [11] and Weber [12]) were concerned with fundamental questions about the nature of society, its failings and necessary modifications (or in Marx’s case, root and branch revolution). The particular phenomena and problems that became the focus of study (e.g. class, income distribution, health, suicide, social integration, religion, institutions) were tools for revealing the workings of society and for understanding how social structures and social relations impacted on individuals to shape and constrain life choices and opportunities. Perhaps the most pertinent example is Durkheim’s classic study of suicide [13], in which the unequal patterning of this deeply personal act among social groups was accounted for by social structure, by the degree to which social groups were bound together by collective

norms. This, in Durkheim’s formulation, simultaneously provides an explanation for a troubling social phenomenon and resonates more widely, revealing a fundamental principle governing social life. Other examples abound, albeit often based on different ontologies and epistemologies. Parsons [14], for example, used sickness as an exemplar to reveal how societies maintain stability and order through tightly governed social roles, with rights, obligations and sanctions for breaches of these moral codes. Foucault [15,16] turned his gaze on psychiatry, critiquing it as a product of the enlightenment designed to police the boundary between normality and abnormality as a mechanism for silencing difference and unreason. In short, what drove the sociological tradition was a concern with significant questions of social order and change, and of how these became manifest in the lives of individuals. It is this coupling of the study of lived experience and broader social forces that Wright-Mills [17] famously christened ‘the

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sociological imagination’. Interest in mental disorder and related institutions stemmed in part from an understanding that these provide a lens through which elementary principles governing social life and organization may be revealed. From the outset sociologists and other social scientists were consequently

5.3

A LEGACY OF MISTRUST

The relationship between the social sciences and psychiatry has fluctuated over time, with some periods of fruitful collaboration and others of outright hostility. In the early classic studies of the social distribution and determinants of mental disorder conducted in the 1930s, 1940s and 1950s [18 22], sociologists and psychiatrists collaborated with an ease that has perhaps not been seen since. At the same time, parallel perspectives developed within the social sciences and eventually converged in a series of fundamental challenges to psychiatry and the understanding of mental disorder it embodies. In the early 1930s (while Faris and Dunham [18] were conducting their seminal studies of the distribution of mental disorders across Chicago see below), Ruth Benedict [23] published her essay ‘Anthropology and the abnormal’, the primary thesis of which centred around the observation that in many cultures the behaviours and experiences classified as abnormal by Western psychiatry paranoia, seizures, trances were considered normal. In other words, the boundary between normal and abnormal was culturally relative, there were no absolute distinctions: as Benedict argued, ‘all our local conventions of moral behaviour and of immoral are without absolute validity’. This basic premise, of the cultural relativity of abnormality, was subsequently developed further and expanded, as sociologists and others began to consider how, if knowledge had no absolute basis, societies came to accept certain versions of ‘truth’.

5.4

interested both (1) in how social structure and experience impacted on individuals to cause, exacerbate and prolong mental distress and (2) in the institutions (psychiatry, asylums, diagnostic systems) that society constructed to manage the problems that came to be subsumed under the rubric of mental disorder.

This was the underlying perspective that united a series of searing critiques of psychiatry that emerged in the 1960s and 1970s, notably by Foucault [15,16], Szasz [24], Laing and Esterson [25] and Scheff [26] (not all social scientists). In short, mental illness was seen as a social construction, a myth built on false analogy with physical illness; psychiatry was society’s stooge, an agent of social control, policing the socially constructed dividing line between deviance and normality, silencing difference and unreason. This simultaneously provides a critique of psychiatry and its models of mental illness and illustrates more fundamental issues relevant to how we create knowledge and seek to understand and act on the social world. Psychiatry’s response was both a reassertion of the legitimacy of its approach to the understanding and treatment of mental disorder and a counterattack accusing its critics of being unscientific and engaging in unfounded theorizing [27,28]. The charge of unfounded theorizing also partly stemmed from certain sociological theories of the origins of emotional distress, notably Bateson’s double-bind [29] and Fromm-Reichman’s ‘schizophrenogenic mother’ [30]. Towards the end of the 1970s, Eisenberg [31] commented that the gap between psychiatry and the social sciences was almost unbridgeable. The legacy of these debates is an enduring undercurrent of mistrust, in particular a mistrust (on the part of psychiatry) of sociological theory and in-depth methodologies (e.g. ethnography, qualitative interviews) and (on the part of sociology) of the power and social role of psychiatry.

SOCIAL CREATION OF MENTAL DISORDER

The most enduring sociological expression of this critique that mental disorder is not intrinsic to

individuals but a social construction is Thomas Scheff’s application of labelling theories of deviance

SOCIAL SCIENCE PERSPECTIVES: A FAILURE OF THE SOCIOLOGICAL IMAGINATION

to mental disorder [26]. The basic premise, that deviance is not intrinsic to particular behaviours and acts but is created by social groups who label acts as deviant [32], was extended by Scheff to mental illness. Symptoms were reframed as rule or norm violations. More specifically, Scheff viewed the symptoms of mental disorder as a kind of residual rule breaking, i.e. as norm-violating behaviour that cannot be readily ascribed to any other culturally recognized category. Once this ‘primary deviance’ is labelled, the argument proceeds, an individual is then treated on the basis of the label and, in the process of being treated differently, increasingly comes to take on the stereotypical characteristics of, in this case, a mentally disordered person, the result being continued and amplified norm violations, i.e. ‘secondary deviance’. It is the application of the label of mental disorder that traps individuals into the career of a ‘mental patient’. A number of classic sociological studies conducted during the 1960s and 1970s purportedly illustrated this process (from slightly differing theoretical perspectives). For example, in their study ‘On being sane in insane places’ [33], Rosenhan and his colleagues gained admission to psychiatric hospitals in the USA by claiming to hear voices saying a single word, such as ‘empty’, ‘hollow’ and ‘thud’. After admission, all ‘pseudo-patients’ then behaved normally. All but one was given a diagnosis of schizophrenia; most were treated with powerful medication and kept in hospital for a number of weeks. Once applied, aspects of the ‘pseudo-patients’, behaviour and past were viewed by staff through the prism of the label, note taking as pathological ‘writing behaviour’ for example. Goffman, in his seminal work Asylums [34], saw the process of becoming a patient as one in which a series of actors, including those in positions of authority, e.g. police, and family and friends, convince the patientto-be that his or her eccentricities and difficulties relating to others are problematic and indicative of mental disorder. Gradually, the person comes to accept this view of themselves as mentally disordered and in need of treatment, and so embarks on what Goffman termed ‘the moral career of the mental patient’. In short, it is society, through its labelling of certain behaviours as abnormal, that creates mental disorder; the chronic course of a disorder is the product of secondary deviance, of those labelled

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fulfilling the stereotypical expectations of the labellers. Mental disorder is not ‘in’ the person, it is created by society ([35], p. 136). These broad perspectives have been extensively critiqued [36]. Perhaps the most salient problem is that, in challenging the illness model of mental disorder, the very reality of the distress and suffering experienced is either downplayed and trivialized (as problems of daily living [24] for example) or romanticized (as a sane response to an insane world [25] for example). From this perspective, suffering is ironically reconstructed away. One consequence is that it becomes difficult to investigate the origins and sources of suffering, an essential task as part of any effort to intervene. In a sense, there is no problem, no suffering to explain, or, perhaps, more precisely, what suffering there is, is a function of psychiatry and its imposition of needless and damaging labels. At the risk of digressing, this logic is at play particularly in the realm of culture and mental disorder, and more specifically can be seen in the particular phenomena of reported high rates of serious mental disorder in migrant and minority ethnic populations [37]. Any response to this troubling social phenomena has been sidetracked by persistent debates about whether these high rates are real or simply a function of psychiatry misdiagnosing psychosis in groups whose cultural background and modes of expressing distress are misinterpreted [38]. Despite overwhelming evidence that this is a genuine public health problem, this debate rumbles on [39]. In short, how is it possible to make a moral case for mental health care, for the promotion of mental health in disadvantaged populations for example, or for the expansion of global mental health, if the very nature of the problem remains contested if, in the background, there is a lingering suspicion that the problems are an invention of a peculiar Western tradition? This important issue aside, the perspectives of Scheff [26], Rosenhan [33], Goffman [34] and others nonetheless contain within them important insights that have continued to influence research. In a straightforward sense, all concepts are social constructs designed to make sense of particular phenomena. These constructs, moreover, are not neutral; the ways in which phenomena are conceptualized can impact on and modify both related behaviours and experiences and the responses of others. There are a number of

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recent analyses of the seemingly endless emergence of ‘new’ mental disorders that illustrate this well (e.g. multiple-personality disorder [8,40], post-traumatic stress disorder (PTSD) and attention deficit/hyperactivity disorder (ADHD)) [7]. A further particularly telling example is provided by Barrett [41,42] in his detailed analysis of the development of the concept of dementia praecox (the forerunner of schizophrenia). He notes how Kraepelin developed the concept, a core feature of which is expectation of gradual mental and functional decline or degeneration, on the basis of observations of large numbers of patients housed in long-stay asylums. As Barrett comments, rather than being a core feature of the illness or disorder, such a trajectory may be as much a product of the impoverished environments of long-stay asylums a proposition for which there is empirical support [43]. Barrett has persuasively argued that an expectation of degeneration and chronicity nonetheless remains at the core of the concept of schizophrenia and that this continues to contribute to therapeutic pessimism and an expectation of chronicity, despite evidence that the majority of those who meet criteria for a schizophreniaspectrum disorder do not have a continuous deteriorating course [44]. This also draws our attention to the possibility that the very institutions established to help may, unwittingly, become part of the problem and exacerbate suffering. Further, there is good evidence that the application of diagnostic labels can impact on subsequent

5.5

outcomes through the negative reactions of others, and it is in attempts to understand this process that interest in labelling theory persists [45,46]. This work suggests that many of the difficulties sufferers experience in terms of finding work, accessing decent accommodation and sustaining supportive social networks are not simply due to the direct effects of the disorder, but also result from the stigmatizing and discriminatory reactions of others (see Chapter 26 for a full discussion) [47]. In recent theoretical formulations of stigma (which extend beyond Goffman’s original definition of stigma as a spoiled identity) [48], labelling (i.e. the process of signifying others as different) is conceived as one of a number of components of stigmatization. Others include stereotyping (i.e. the linking of differences to undesirable characteristics ([47], p. 180)), separating (i.e. marking the labelled group as fundamentally different) and discrimination (i.e. exclusion of the labelled group). This noted, in much recent work on stigma it is possible to discern a narrowing of the focus of enquiry, on to public attitudes towards the mentally disordered and education campaigns, and a movement away from understanding stigma within the contexts in which it arises. Recent applications of moral theory indicate just how embedded and powerful a part of the foundations of society stigma is [49,50]. A necessary component of developing strategies to reduce stigma is an understanding of what drives stigma (e.g. fear) in specific local moral worlds.

SOCIAL DETERMINANTS OF MENTAL DISORDER

From the beginnings of the discipline, sociologists have been interested in the social patterning and determinants of health and disorder (both physical and mental). It is possible to identify two broad strands within this, one concerned with social structure (structural strain theory) and one concerned with individuallevel social experiences (social stress theory). Structural strain theory, simply, locates the origins of disorder in the organization and structures of society and has its foundations in the work of Durkheim. The basis for this is the observation that the incidence and prevalence of mental disorders vary by social group and context. In early work, sociological theory was

developed and applied to explain these associations. Durkheim, for example, used the concept of anomie (i.e. a state of normlessness and social disorganization) to explain the association he observed between suicide and periods of rapid economic and social change. This is further seen in Faris and Dunham’s use of theories of urban development proposed by Park and others [51] to frame their investigations, and use of the concept of social fragmentation to interpret findings that hospital admissions for schizophrenia were highest in areas characterized by poverty, crime, poor and unstable housing, and fractured social contacts [18]. The seminal work of Faris and Dunham, in which core

SOCIAL SCIENCE PERSPECTIVES: A FAILURE OF THE SOCIOLOGICAL IMAGINATION

facets of the social and geographical distribution of serious mental disorders in urban areas were first identified, laid the foundations for subsequent collaborations between sociologists and psychiatrists which further established clear links between social class and various aspects of mental disorder and mental health service use. Hollingshead (a sociologist) and Redlitch (a psychiatrist), for example, conducted ground-breaking research in New Haven documenting higher levels of mental disorder and more problematic access to care for those in lower socioeconomic groups [20]. Other studies followed, notably the Midtown Manhattan study [21,22]. What is notable about this body of research is the attention to detail and context, and the attempt to theorize the observed relationships. In other words, there was a concern with how structure becomes actualized in daily life an exercise of the sociological imagination. This said, the actual mechanisms through which social structures become actualized or embodied to cause the onset or exacerbation of mental distress have been largely unspecified, beyond some vague notion that the certain structures and contexts are a source of ‘strain’ [35]. There are more recent examples of research informed by sociological theory that seek to examine the relationship between aspects of the wider social environment and mental disorders [52,53]. The attempt to apply theories of social capital to the study of mental disorder is one such example [54]. To date, most researchers have drawn specifically from Putnam’s formulation of social capital as a collective resource that inheres in the social ties and connections of local communities [55]. There are a small number of examples where other conceptualizations of social capital have been invoked [56] (e.g. individual access to stocks of social capital, following Bourdieu [57]). However, as potentially fruitful as this may prove to be, inconsistencies in definitions and methods continue to undermine the development of a consistent body of knowledge in relation to mental disorder, and findings are equivocal some suggest a link, others do not [54,58 60]. This, moreover, hints at some of the key limitations of research that can be broadly bracketed within a structural strain framework, e.g. problems of consistent and accurate measurement of social structure and organization.

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This recent work notwithstanding, the initial attention to theory has gradually ebbed and much of the recent social epidemiology of mental disorder has been largely atheoretical, seeking simply to document the rates of occurrence of specific mental disorders and their sociodemographic correlates. This is reflected, for example, in recent years in a series of large-scale community surveys, including the US Epidemiologic Catchment Area Survey [61], the US National Comorbidity Survey [62] and the British Psychiatric Morbidity Survey [63]. The findings from many of these are summarized in Chapter 8. This approach is problematic from a sociological perspective for at least two reasons. To begin with, as Farmer argues, the social variables employed (e.g. employment, education, social class) are ‘often desocialized’, they are ‘decontextualised from larger social processes that are both historically rooted and linked to persons and processes that are not visible to the survey researcher’ (Castro and Farmer, 2005, p. 53). The sources of social inequalities, for example, that are so strongly associated with many mental disorders do not feature, as if they are somehow a part of the natural order and not a function of the ways in which society is organized. The ‘structural violence’, to use Farmer’s phrase, that exposes certain groups to the linked miseries of poverty, poor housing, isolation, poor health and health care, and so on, remains hidden the very social nature of suffering is obscured. The data cease to be a window through which to understand how social structure and contexts become manifest in the suffering of individuals, families and communities. They become simply a part of the routinized book-keeping of modern societies, documenting met and unmet need for technical and individualized interventions to reduce symptomatology. At times, researchers are left almost at a loss to explain, or even develop testable hypotheses for, observed associations (e.g. the persistent link between urbanicity and psychosis [64] a finding that is at present largely uninterpretable [65]). Linked to this, the problems and suffering faced become increasingly splintered into discrete ‘disorders’, each separable from the other (as evidenced by the explosion of disorders in DSM) and standing outside the context within which they arise and persist. This is, in fact, belied by the very evidence from these surveys that

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suggests ‘comorbidity’, the technical terminology to account for the simultaneous occurrence of more than one ‘discrete’ problem, is the norm [62]. More than this, as suffering is decontextualized in this way and measured against a checklist of symptoms, so its very meaning becomes subverted (sadness, for example, arising from job loss, relationship problems or financial difficulties is transformed into depression, a discrete disorder primarily treatable with individualized therapy be that psychological or pharmacological) (see also below) [6]. A notable exception to this trend is Link and Phelan’s theory of fundamental social causes [66], developed to explain why most disorders tend to coalesce in disadvantaged populations, even as the nature of these disorders changes (e.g. from infectious disease to chronic physical illness to mental disorder) (see Chapter 14). In short, the use of crude ‘sociodemographic’ variables in the absence of theoretically informed hypotheses about the processes underlying observed associations means that the findings of large-scale surveys can tell us little about the origins of the social disparities they document. Where more sophisticated concepts are employed (e.g. social fragmentation, social capital), additional methodological challenges are faced, and it remains that the invisible hand of ‘strain’ or ‘stress’ has to be invoked to explain how social contexts impact on individuals. What does it mean on a daily basis to live within such contexts? How do individuals and families respond? In other words, what might mediate the impact and strain of living in such conditions? It is this ‘black box’ of lived experience and meaning that social epidemiology even that theoretically informed by sociology is generally ill-equipped to penetrate [67]. What is more, the characteristic experiences of mental disorder do not occur in isolation; they tend to be interlinked with other difficulties and these linked disadvantages tend to coalesce in vulnerable groups, creating a pool of problems that cannot be splintered and addressed individually. For example, there has been a considerable amount of research investigating the high rates of psychosis in the UK black Caribbean population [38]. Almost all of this has been conducted without reference to the equally robust evidence of high levels of school exclusions, substance use, involvement with criminal justice services and unemployment in this

population. These problems are interlinked, and a full understanding of their origins and how to address them is unlikely to be achieved if each one is studied in isolation [39]. Instead, the sum of human suffering is reduced to quantifiable indices (as in, for example, the Disability Adjusted Life Year). A further major strand in the social science of mental disorder is concerned with how individuallevel processes and experiences impact on the onset, course and outcome of disorder. Most of this, implicitly or explicitly, can be grouped within the broad framework of social stress theory. Stress has become a ubiquitous explanation for a multitude of ills in modern societies. Particularly within the social sciences, it is used as the thread to link adverse social experiences and mental distress. The concept was first introduced into the sciences in the 1930s by the psychologist, Hans Selye [68,69]. Selye saw stress as the body’s physiological response to stressors, by which he meant anything that represented an insult or threat to the body, such as extreme heat or cold (i.e. anything provoking a stress response) [35]. His model of stress was developed on the basis of experiments with laboratory animals and comprises four components: (1) stressors, (2) factors that mediate the impact of stressors on the body (e.g. personality, social support networks), (3) the general adaptation syndrome (see below) and (4) responses, positive or negative ([70], p. 178). Selye conceptualized the three stages of physical response to stressors that animals pass through as the general adaptation syndrome: (1) alarm reaction, (2) resistance and (3) exhaustion. They constitute a process during which the body is physiologically aroused and prepared to resist threat (i.e. fight or flight), which, if continued for a sufficient period, leads to exhaustion and illness. Conceptually, if not in detail, this is the basic framework for current views about how social stressors impact on individuals to increase risk of mental illness. In this, social experiences and contexts (e.g. life events, ongoing difficulties, trauma, problematic interpersonal relationships) are reconfigured as stressors that threaten the integrity of individuals. A whole range of problematic contexts and occurrences i.e. social stressors (e.g. childhood abuse, bullying, trauma, unemployment, job loss, relationship problems, family conflict) have been linked

SOCIAL SCIENCE PERSPECTIVES: A FAILURE OF THE SOCIOLOGICAL IMAGINATION

with a wide variety of physical and mental disorders (including asthma, breast cancer, lupus, myocardial infarction, headaches, irritable bowel syndrome, dementia, gastrointestinal disorders, diabetes, Crohn’s disease and, of course, the full range of mental health problems, from insomnia to chronic schizophrenia) [35]. Many of these are discussed at various points in chapters throughout this book. A number of methodological approaches have also been used, ranging from predefined brief checklists of events and traumas (in childhood and adulthood) [71] to more detailed semi-structured interviews that attempt to contextualize events and difficulties as a basis for evaluating their meaning and likely degree of threat [72]. This latter approach, developed and applied by George Brown, Tirril Harris and colleagues, has underpinned a programme of research that has revealed much about the relationship between adverse events and difficulties and depression, leading to the development of a sophisticated model that posits a primary role for adverse social experiences in the aetiology of depression [73]. More specifically, this programme of research shows that: (1) the relationship is strongest for negative events, particularly those involving loss, entrapment and humiliation; (2) the association remains when only events occurring before onset of disorder is considered; (3) the sixmonth period pre-onset is important; (4) social circumstances and supportive resources mediate the risk, the risk being highest among women with three children aged under 11 who lack supportive networks and relationships; and (5) positive, fresh-start events can promote recovery [73]. Here we can see how

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context moderates the impact of stress arising from negative events (job loss, relationship break-up) and chronic difficulties (financial hardship, interpersonal conflict), and how multiple problems interconnect and interact to cause and sustain mental distress (see Chapter 16). This, moreover, can persist across generations. We know from other research, for example, that the experience of mental distress in a parent extends outwards, affecting the whole family, especially children who are themselves consequently at increased risk of subsequent disorder (see Chapter 9). However, for all this work contextualizes the exposures (to use terminology from epidemiology), it leaves uncontested the nature of the outcomes (e.g. depression, psychosis) and their conceptualization as discrete disorders that stand apart from other experiences in the flow of everyday life. It is perhaps no surprise that it is this strand of sociology that has been most readily accepted and incorporated into psychiatry. For some, this constitutes a significant limitation. In so far as the diagnosis of depression, for example, fails to take account of the context within which feelings of sadness and distress arise, Horwirtz and Wakefield [6] argue that the diagnosis is likely to embrace all those whose distress is an understandable and time-limited response to negative events (e.g. a relationship break-up, job loss) that is normal sadness, not depressive disorder. Unwittingly, this research may then contribute to the professional transformation of normal sorrow into mental disorder. This returns us full circle to fundamental questions about how such distress and suffering should be conceptualized.

SOCIAL INFLUENCES ON RESPONSES TO MENTAL DISORDER

Much social science research, in the time since the 1970s, has centred on understanding how social and cultural contexts shape the manifestation of, and responses to, mental disorder. This disparate body of research draws from a number of theoretical threads. Following on from Benedict [23], a significant interest in medical anthropology has been on how the experiences and behaviours characteristic of mental disorder and symptoms of physical illness are understood and managed in diverse settings (without

necessarily going so far as to propose the complete cultural relativity of systems of knowledge and belief) [74]. For example, a classic study by Helman [75] illustrates how culturally based illness beliefs shape help-seeking and interactions with health care services. In his study of older residents in north London, Helman sought to explore what was meant by the popular notion ‘feed a cold, starve a fever’ and how lay beliefs related to this notion influenced interactions with health care professionals. The detailed accounts

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elicited by Helman revealed a widespread folk classificatory system of what medicine terms infectious diseases, resting on the separation of illnesses into hot, cold, wet and dry. This system was based on perceived, and entirely subjective, notions of changes in body temperature associated with particular symptoms. Colds were caused by contact with the natural environment, e.g. damp or rain or wind, or by cold entering vulnerable areas of the body, such as the feet or the head. Treatment involved increasing a sufferer’s temperature with, for example, hot food, hot drinks and rest in a warm bed, and by generating personal body heat using tonics or food hence ‘feed a cold’. Fevers, in contrast, were thought to be caused by germs, bugs or viruses. Germs and the like pass from one person to another, as in the idea of ‘picking up a germ’, and as such are the result of social interaction. Remedies involve expelling the offending agent by, for example, sweating it out or ‘coughing up the muck’, or by attacking the germs with modern medicine, i.e. antibiotics. Related to this, Helman noted that doctors often couched their diagnoses and prescribed treatments in lay terms: ‘you’ve picked up a bug’, ‘it’s a tummy bug I’m afraid there’s one going around’, thereby further reinforcing popular beliefs. This example illustrates how beliefs about causation and the nature of illness can impact on how individuals respond: for colds, a hot drink and warm bed; for fevers, getting it out of the system with the help of modern medicine. The study further suggests that where cultural idioms are shared ease of communication between doctor and patient is increased. A number of the frameworks and concepts developed in ethnographic studies of healing systems in diverse cultures have subsequently been widely employed in studies of how illness is conceptualized and managed cross-culturally (e.g. the notion of health care systems as cultural systems comprising at least three overlapping sectors the professional, the folk and the popular; explanatory models of illness, as a basis for understanding the ideas about episodes of illness that each individual patient, relative and clinician brings to the clinical encounter) [76]. In sociology, similar research has been conducted within the framework of illness behaviour, initially developed by Mechanic [77] (and perhaps to a lesser extent using Parson’s formulation of the ‘sick

role’ [14]). In brief, illness behaviour refers to the ways in which individuals and significant others perceive, evaluate and respond to symptoms of illness, and was formulated in the context of growing evidence that the nature and severity of symptoms alone did not determine when and what type of help was sought. On the basis of this early work, Mechanic [78] identified a small number of factors that influenced illness behaviour, including: the nature of symptoms; culture, particularly beliefs about illness which shape the interpretation of symptoms; the impact of symptoms on family and social functioning; the responses of significant others; and the range of treatment options available (i.e. the structure of the local health care system). Much of the early research within this framework emphasized the processes of negotiation that occur within social networks in coming to an understanding of an episode of illness and deciding on appropriate responses. Zola [79], for example, demonstrated that illness behaviour and the decision to seek medical help is, at least partly, a function of the family and social context within which illness is experienced. Resolving health problems, for example, is only one of a number of competing demands on individuals and it may be that other needs, from the point of view of the sufferer, are more salient at any point. Caring for children, work, study and other such activities may take higher priority than seeking help for health problems, particularly if consultation may lead to time-consuming treatment or hospitalization. Further, the process of negotiating and weighing up the pros and cons of seeking professional help will be influenced by culturally defined roles, obligations and norms governing what is considered an appropriate response to specific symptoms and illness. For example, a study of socioeconomic variations in responses to chest pain in Scotland [80] found that respondents from deprived areas were less likely to seek help due to a tendency to normalize chest pains in the context of high general levels of ill-health and due to a constellation of related beliefs about the appropriateness of seeking help and fear of being blamed for ‘high-risk behaviours’, such as smoking, drinking and poor diet [80]. In the time since this early work there has been a vast amount of research investigating responses to illness and help-seeking, much of it conducted within

SOCIAL SCIENCE PERSPECTIVES: A FAILURE OF THE SOCIOLOGICAL IMAGINATION

the theoretical frameworks briefly sketched here. It is beyond the scope of this chapter to even attempt a synopsis of this work. One observation (in a similar vein to ones made above) is worth noting. At the risk of overstatement (and a number of exceptions notwithstanding e.g. Pescolsolido et al. [81] and see Chapter 24), there has been an increasing tendency to employ the concepts developed in early work (e.g. explanatory models) inflexibly, as fixed quantifiable variables to be correlated with specified outcomes (e.g. admission to hospital), as if these captured unchanging and readily measurable characteristics of individuals, much like taking blood pressure readings. This is particularly true of studies of explanatory models, initially intended as a window into cultural context, or of beliefs about illness more broadly. The emphasis on context and the interconnectedness of health systems and behaviours is consequently lost again, notions of

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illness are stripped from the local social worlds in which they emerge and have meaning. There is, moreover, a related tendency to reconstruct the process of managing an episode of illness as a series of rational choices, in which individuals calculate the benefits and costs of seeking help against pre-existing ideas about what is wrong and options for putting it right. This may be the case for some, but it ignores the socially negotiated process that characterizes responses to distress and suffering, a process recently well illustrated in a study by Pescosolido and colleagues [81] detailing how people come to use mental health services. In other words, this represents a further area where initial theoretically-informed research in the social sciences has been superseded by increasingly atheoretical studies designed primarily to address specific questions of perceived relevance to health services.

A FAILURE OF THE SOCIOLOGICAL IMAGINATION

Within each of the areas discussed (the nature of mental disorder, the social role of psychiatry, the social distribution and determinants of mental disorder, the social and cultural influences on responses to disorder), there is a rich social science tradition (both theoretical and methodological) that has contributed greatly to our understanding of the myriad connections between society and mental disorder. However, at the same time, social science perspectives within psychiatry have been in retreat, and it is possible to discern a general tendency to reify or ignore theoretical concepts and decontextualize findings, with studies of social aspects of mental disorder becoming increasingly narrow in their focus. This reflects, perhaps uncharitably, a retreat of social science within psychiatry into health services research and social epidemiology and, with this, a decline of theory and interest in the major questions that initially drove early sociological studies of mental disorder i.e. a failure of the sociological imagination. This has been amplified by parallel developments in psychiatry, most notably an increasing dominance of biological theories of aetiology, categorical approaches to diagnosis as codified in DSM and ICD, and an increase in pharmacological treatments. This has further

contributed to a withdrawal of psychiatry from public health, at least until recently. In other words, the social aspects of mental disorder are (again with some exceptions) frequently relegated to the periphery. Social science (for now) operates at these margins. Certainly, health service research and basic social epidemiology are important as a basis for identifying need and developing appropriate interventions and treatment systems. However, our understanding of what needs to be done would be greatly enriched if social science research was once again broadened to embrace the wider social forces and contexts that impinge on and shape the lives of those who mental health services are designed to help. It is this, for instance, that will allow a fuller understanding of the interconnected problems that underpin the suffering James described in the example provided above. What we have suggested throughout this review is that social suffering, with its emphasis on the intersubjective experience of distress and its origins in the interconnected adversities and traumas that individuals, their families and communities face, offers a unifying frame through which to consider the intrinsic social nature of mental disorder and re-enrich the sociology of mental disorder.

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REFERENCES 1. Kleinman, A., Das, V. and Lock, M. (1997) Introduction, in Social Suffering (eds A. Kleinman, V. Das and M. Lock), University of California Press, Los Angeles, California, pp. ix xxvii. 2. Kleinman, A., Das, V. and Lock, M. (eds) (1997) Social Suffering, University of California Press, Los Angeles, California. 3. Morgan, C., Burns, T., Fitzpatrick, R. et al. (2007) Social exclusion and mental health: conceptual and methodological review. British Journal of Psychiatry, 191, 477 483. 4. World Health Organization (WHO) (2001) The World Mental Health Report, World Health Organization, Geneva. 5. Desjarlais, R., Eisenberg, L., Good, B. and Kleinman, A. (eds) (1997) World Mental Health: Problems and Priorities in Low Income Countries, Oxford University Press, Oxford. 6. Horwitz, A. and Wakefield, J. (2007) The Loss of Sadness: How Psychiatry Transformed Normal Sorrow into Depressive Disorder, Oxford University Press, Oxford. 7. Horwitz, A. (2004) Creating Mental Illness, 2nd edn, Chicago University Press, Chicago, Illinois. 8. Hacking, I. (1998) Rewriting the Soul: Multiple Personality and the Science of Memory, Princeton University Press, Princeton, New Jersey. 9. Comte, A. (1855) The Positive Philosophy, Harvard University Press, Boston, Massachusetts. 10. McLellan, D. (2000) Karl Marx: Selected Writings, Oxford University Press, Oxford. 11. Durkheim, E. (1938) The Rules of Sociological Method, The Free Press, New York. 12. Parkin, F. (2002) Max Weber (Routledge Key Sociologists), Routledge, London. 13. Durkheim, E. (1952) Suicide, The Free Press, Glencoe, Illinois. 14. Parsons, T. (1951) The Social System, Routledge & Kegan Paul Ltd, London. 15. Foucault, M. (2001) Madness and Civilisation, Routledge, London (originally published 1967). 16. Rabinow, P. (1991) The Foucault Reader: An Introduction to Foucault’s Thought, Penguin, London. 17. Wright Mills, C. (2000) The Sociological Imagination, Oxford University Press, Oxford (originally published 1959).

18. Faris, R. and Dunham, H. (1939) Mental Disorders in Urban Areas, University of Chicago Press, Chicago, Illinois. 19. Hare, E. (1956) Mental illness and social conditions in Bristol. Journal of Mental Science, 102, 349 357. 20. Hollingshead, A. d. B. and Redlich, F. C. (1958) Social Class and Mental Illness; A Community Study, John Wiley & Sons, Inc., New York. 21. Gruenberg, E. M. (1963) A review of mental health in the metropolis. The midtown Manhattan study. Milbank Memorial Fund Quarterly Health and Society, 41, 77 94. 22. Langner, T. S. (1960) Environmental stress, degree of psychiatric impairment and type of mental disturbance. Psychoanalysis and the Psychoanalytic Review, Winter, 47, 3 16. 23. Benedict, R. (1934) Antropology and the abnormal. Journal of General Psychology, 10, 59 80. 24. Szasz, T. (1960) The myth of mental illness. American Psychologist, 15, 113 118. 25. Laing, R. D. and Esterson, D. (1964) Sanity, Madness and the Family, Basic Books, New York. 26. Scheff, T. (1966) Being Mentally Ill: A Sociological Theory, Aldine Publishing Company, Chicago, Illinois. 27. Bolton, D. (1997) Encoding of meaning: deconstructing the meaning/causality distinction. Philosophy, Psychiatry and Psychology, 4, 255 267. 28. Roth, M. and Kroll, P. (1986) The Reality of Mental Illness, Cambridge University Press, Cambridge. 29. Bateson, G., Jackson, D., Haley, J. and Weakland, J. (1956) Toward a theory of schizophrenia. Behavioural Science, 1, 251 264. 30. Fromm Reichmann, F. (1948) Notes on the development of treatment of schizophrenics by psycho analytic psychotherapy. Psychiatry, 11, 263 273. 31. Eisenberg, L. (1977) Psychiatry and society: a sociobiologic synthesis. New England Journal of Medicine, 296, 903 910. 32. Becker, H. (1963) Outsiders: Studies in the Sociology of Deviance, Free Press, New York. 33. Rosenhan, D. L. (1973) On being sane in insane places. Science, 179 (70), 250 258. 34. Goffman, E. (1961) Asylums, Anchor, New York. 35. Thoits, P. A. (1999) Sociological approaches to mental illness, in A Handbook for the Study of Mental Health: Social Contexts, Theories and Systems (eds A. V. Horwitz and T. L. Schied), Cambridge University Press, Cambridge.

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36. Morgan, C. (2008) Social science, psychiatry and psychosis, in Society and Psychosis (eds C. Morgan, K. McKenzie and P. Fearon), Cambridge University Press, Cambridge, pp. 25 40. 37. Cantor Graae, E. and Selten, J. P. (2005) Schizophrenia and migration: a meta analysis and review. American Journal of Psychiatry, 162, 12 24. 38. Fearon, P. and Morgan, C. (2006) Environmental factors in schizophrenia: the role of migrant studies. Schizophrenia Bulletin, 32 (3), 405 408. 39. Morgan, C. and Hutchinson, G. (2009) The social determinants of psychosis in migrant and ethnic minority populations: a public health tragedy. Psychological Medicine, 1 5 (in press). 40. Hacking, I. (1999) Mad Travellers: Reflections on the Reality of Transient Mental Illness, Free Association Books, New York. 41. Barrett, R. J. (1998) Conceptual foundations of schizophenia: I. Degeneration. Australian and New Zealand Journal of Psychiatry, 32 (5), 617 626. 42. Barrett, R. J. (1998) Conceptual foundations of schizophrenia: II. Disintegration and division. Australian and New Zealand Journal of Psychiatry, 32 (5), 627 634. 43. Wing, J. and Brown, G. (1970) Institutionalism and Scizophrenia, Cambridge University Press, Cambridge. 44. Warner, R. (2003) Recovery from Schizophrenia: Psychiatry and Political Economy, 3rd edn, Routledge, London. 45. Link, B. and Phelan, J. (1999) The labelling theory of mental disorder (II): the consequences of labelling, in A Handbook for the Study of Mental Health: Social Contexts, Theories and Systems (eds A. V. Horwitz and T. L. Schied), Cambridge University Press, Cambridge, pp. 361 376. 46. Phelan, J. and Link, B. (1999) The labelling theory of mental disorder (I): the role of social contingencies in the application of psychiatric labels, in A Handbook for the Study of Mental Health: Social Contexts, Theories and Systems (eds A. V. Horwitz and T. L. Schied), Cambridge University Press, Cambridge. 47. Thornicroft, G. (2006) Shunned: Discrimination Against People with Mental Illness, Oxford University Press, Oxford. 48. Goffman, E. (1963) Stimga: Notes on the Management of a Spoiled Identity, Prentice Hall, Boston, Massachusetts.

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49. Yang, L. H. and Kleinman, A. (2008) ‘Face’ and the embodiment of stigma in China: the cases of schizophrenia and AIDS. Social Science and Medicine, 67 (3), 398 408. 50. Yang, L. H., Kleinman, A., Link, B. G. et al. (2007) Culture and stigma: adding moral experience to stigma theory. Social Science and Medicine, 64 (7), 1524 1535. 51. Park, R., Burgess, E. and McKenzie, R. (1925) The City, University of Chicago Press, Chicago, Illinois. 52. Allardyce, J., Gilmour, H., Atkinson, J. et al. (2005) Social fragmentation, deprivation and urbanicity: relation to first admission rates for psychoses. British Journal of Psychiatry, 187, 401 406. 53. Boydell, J., van Os, J., McKenzie, K. et al. (2001) Incidence of schizophrenia in ethnic minorities in London: ecological study into interactions with environment. British Medical Journal, 323, 1336 1338. 54. McKenzie, K. and Harpham, T. (eds) (2006) Social Capital and Mental Health, Jessica Kingsley, London. 55. Putnam, R. D. (2000) Bowling Alone: The Collapse and Revival of American Community, Simon & Schuster, New York. 56. Webber, M. P. and Huxley, P. J. (2007) Measuring access to social capital: the validity and reliability of the Resource Generator UK and its association with common mental disorder. Social Science and Medicine, 65 (3), 481 492. 57. Bourdieu, P. (1977) Outline of a Theory of Practice, Cambridge University Press, Cambridge. 58. De Silva, M. J., Huttly, S. R., Harpham, T. and Kenward, M. G. (2007) Social capital and mental health: a comparative analysis of four low income countries. Social Science and Medicine, 64 (1), 5 20. 59. De Silva, M. J., McKenzie, K., Harpham, T. and Huttly, S. R. (2005) Social capital and mental illness: a systematic review. Journal of Epidemiology and Community Health, 59 (8), 619 627. 60. Stafford, M., De Silva, M., Stansfeld, S. and Marmot, M. (2008) Neighbourhood social capital and common mental disorder: testing the link in a general population sample. Health Place, 14 (3), 394 405. 61. Robins, L. E. and Regier, D. N. (1991) Psychiatric Disorders in America: The Epidemiologic Catchment Area Study, The Free Press, New York.

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62. Kessler, R. C., Anthony, J. C., Blazer, D. G. et al. (1997) The US National Comorbidity Survey: overview and future directions. Epidemiologia e Psichiatria Sociale, 6 (1), 4 16. 63. Jenkins, R., Bebbington, P., Brugha, T. et al. (2003) British Psychiatric Morbidity Survey. International Review of Psychiatry, 15 (1), 14 18. 64. Krabbendam, L. and van Os, J. (2005) Schizophrenia and urbanicity: a major environmental influence conditional on genetic risk. Schizophrenia Bulletin, 31 (4), 795 799. 65. McGrath, J. and Scott, J. (2006) Urban birth and risk of schizophrenia: a worrying example of epidemiology where the data are stronger than the hypotheses. Epidemiologia e Psichiatria Sociale, 15, 243 246. 66. Link, B. and Phelan, J. (1995) Social conditions as fundamental causes of disease. Journal of Health and Social Behaviour, 35, 80 94. 67. Berkman, L. F. and Kawachi, I. (eds) (2000) Social Epidemiology, Oxford University Press, Oxford. 68. Seyle, H. (1978) The Stresses of Life, McGraw Hill, Maidenhead. 69. Pearlin, L. (1999) Stress and mental health: a conceptual overview, in A Handbook for the Study of Mental Health: Social Contexts, Theories and Systems (eds A. V. Horwitz and T. L. Schied), Cambridge University Press, Cambridge, pp. 161 175. 70. Wheaton, B. (1999) The nature of stressors, in A Handbook for the Study of Mental Health: Social Contexts, Theories and Systems (eds A. V. Horwitz and T. L. Schied), Cambridge University Press, Cambridge, pp. 176 197.

71. Holmes, T. H. and Rahe, R. H. (1967) The social readjustment rating scale. Journal of Psychosomatic Research, 11, 213 218. 72. Brown, G. and Harris, T. (1978) The Social Origins of Depression, Tavistock, London. 73. Harris, T. (2001) Recent developments in understanding the psychosocial aspects of depression. British Medical Bulletin, 57, 17 32. 74. Helman, C. (2000) Culture, Health and Illness, 4th edn, Butterworth Heinemann, Oxford. 75. Helman, C. (1978) Feed a cold, starve a fever. Culture, Medicine and Psychiatry, 2, 107 137. 76. Kleinman, A. (1980) Patients and Healers in the Context of Culture: An Exploration of the Borderland between Antropology, Medicine and Psychiatry, University of California Press, Los Angeles, California. 77. Mechanic, D. (1962) The concept of illness behaviour. Journal of Chronic Disease, 15, 189 194. 78. Mechanic, D. (1968) Medical Sociology: A Selective View, Free Press, London. 79. Zola, I. (1973) Pathways to the doctor. Social Science and Medicine, 7, 677 689. 80. Richards, H. M., Reid, M. E. and Watt, C. M. (2002) Socio economic variations in responses to chest pains: a qualitative study. British Medical Journal, 324, 1308 1310. 81. Pescosolido, B. A., Gardner, C. B. and Lubell, K. M. (1998) How people get into mental health services: stories of choice, coercion and ‘muddling through’ from ‘first timers’. Social Science and Medicine, 46 (2), 275 286.

6 Concepts and challenges in capturing dynamics of the wider social environment Stephani L. Hatch1 and Dana March2 1 2

Department of Psychological Medicine, Institute of Psychiatry, King' s College London, London, UK Department of Epidemiology and Center for Social Inequalities and Health, Mailman School of Public Health, Columbia University, New York, USA

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INTRODUCTION

As the social environment shapes individuals, individuals shape the social environment. Yet examinations of the wider social environment in social psychiatry have not fully embraced this dynamic. This chapter outlines conceptual considerations and highlights particular challenges in understanding how the dynamics and complexities of social structure and contextual factors across the life course ultimately bear on individuals’ mental health. Many assessments of the wider social environment attempt to identify important exposures that confer either risk or protection in terms of mental health outcomes, from social interactions (e.g. disorder, social capital) to physical environs (e.g. built environment, local services, access to safe places, etc.) and mobility across settings (e.g. residential stability, housing tenure, migration). We discuss many of these environmental characteristics, focusing specifically on social capital and mobility.

How an individual engages with the social environment is heavily influenced by his or her acquired level of cultural competence and accumulated experience developed over the life course. We raise some of the challenges in capturing the social environment and, most importantly, address the primary processes that link individuals to the social environment. We argue that emphasis should be placed on the relative positioning of individuals within their social environments, the salience of social context at different points across the life course and individuals’ embodiment of historically shaped social context. The issues discussed in this chapter are by no means exhaustive. Rather, the concepts and challenges to empirical examination of the wider social environment addressed below are meant to provide guidance in social psychiatric research considering social context, underscore particular points that warrant

Principles of Social Psychiatry, second edition Edited by Craig Morgan and Dinesh Bhugra Ó 2010 John Wiley & Sons, Ltd.

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further consideration and encourage critique of current thinking regarding the representation of the social world within social psychiatry and psychiatric epidemiology research. We begin with the conceptualization of social structure and consider how social structure is embodied over the life course by socialization, drawing on an example from the study of stress and mental health. We then proceed to a discussion of area-level factors and mental health,

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with special attention granted to depression and psychosis. An elaboration on social capital, which illuminates the broader contours of a narrowly applied sociological concept in social psychiatry and psychiatric epidemiology, follows. Finally, we underscore the importance of considering the life course and consider the specific complexities in empirical research concerned with social and geographic mobility.

SOCIAL STRUCTURE

. . .[I]ndividuals contain within themselves their past and present position in the social structure ([1], p. 434).

Social structure broadly refers to enduring patterned behaviour and interactions between individuals or groups that represent hierarchical social arrangements within a social system [2,3]. The meaning and usage of the concept depends on the theoretical perspective being employed. Considerations of social structure in research are implicit in attempts to understand relations between social stratification and health, often categorized as health disparities or health inequalities research [4 6]. While the identification of differences in the distribution of disorders is key in this arena, consideration of the interrelationships among hierarchically arranged social statuses (e.g. socioeconomic status, gender, race/ethnicity, age) is imperative. Social interactions are defined, in part, by the position within a hierarchical social structure that a person inhabits. That position, in turn, becomes a constituent of the person. One concept particularly pertinent to this sociological phenomenon is habitus. In his early work, Bourdieu [7] describes habitus as ‘embodied social structures’ or schemes that reflect social status. Economic and social conditions generate shared perceptions, observations, motivations and behaviours based on occupying certain social statuses and interacting with others in the same status position [8]. Subsequent work by Bourdieu and others offering nuanced inter pretations has considered the impact of gender and racial/ethnic status positions on individuals’ interpretation and functioning within social environments [1,9 11].

Time is a critical consideration in understanding how social structure becomes embodied. First, social structure itself is influenced by history, and perspectives of social statuses shift over time. Second, social structure is embodied across the life course at critical times (e.g. childhood, adolescence and different phases in adulthood). One of the main challenges is capturing changing social structure as it pertains to individual development and mental health over the life course. This has been most obviously addressed in researchers’ attempts to highlight the influence of social structure on experience and behaviour, with an emphasis on the contribution of social processes, such as socialization, described in detail below [12].

6.2.1

Socialization: linking the individual to social structure

Social processes have been overlooked in situating the individual within his or her environment. However, in a convergence of thinking across disciplines, social processes are receiving more attention, both directly and indirectly. For example, research regarding ethnic identity development in relation to mental health and service use exemplifies the dynamics between social structure and the individual [13 15]. Implicit in the process of ethnic identity development is socialization [16]. Defined as the manner in which individuals selectively acquire skills, knowledge, values, motives,

CONCEPTS AND CHALLENGES IN CAPTURING THE SOCIAL ENVIRONMENT

behaviours and roles [17,18], socialization is one of the common processes by which social structure is embodied and maintained and by which individuals become embedded in their social environment. However, it appears to be overlooked, particularly in research that considers interactions between individuals and the social environment in relation to mental health. In this section, we discuss the main sources of and domains in which socialization can occur across the individual life course. Socialization processes occur within contexts that shift in salience over the life course: the family, the school, among peers, the neighbourhood and in the workplace. The explicit purpose and function of interactions within these contexts is to socialize and integrate individuals at the group level [16]. Thus, embodiment of the social environment occurs partly through this process, particularly within social interactions and social participation. The complexities of how this process unfolds over the life course are best captured in longitudinal follow-up that allows researchers to examine the impact of traditional lifephase transitions (e.g. education completion, work entry, marriage or household formation). Understanding these life course transitions and thinking in terms of life course trajectories are equally important in determining how to promote social stability (e.g. social integration, maintenance of social networks and perceived social support) and to reduce social exclusion (e.g. instability in housing, debt, marital and family breakdown), particularly as each pertains to mental health. Bourdieu’s concept of habitus, as noted, is particularly useful in a discussion of socialization. More fully, habitus is defined as the ‘mental or cognitive structures’ or somewhat durable dispositions that combine into a series of schemes through which the social world is perceived and evaluated [19 21]. These schemes are utilized in social interactions, and provide the guiding principles for making choices and replicating past experiences within a given social environment. The family of origin is the initial source from which meaning and purpose at the individual and group level arises, establishing patterns of power and structures of authority. Parents and primary caregivers take on a multitude of socialization goals. Many of these are central in the development of

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gender, class and racial or ethnic identities. The family provides the first instance of group membership in which individuals are endowed with similar schemes, or habitus. For example, the development of ethnic identity results from an intergenerational transmission of majority group views about race and ethnicity from parents to children. Ethnic identity represents a common heritage shared within a particular group, and a sense of unification and cohesiveness in conceptualizations of the self [22,23]. This occurs through processes, both subtle and overt, which involve the parental transmission of attitudes and behaviours and the promotion of ethnic identity development. In such processes, parents’ practices are shaped and influenced by experiences from their own families of origin and experiences in their immediate social environment [24]. Children are prepared to adapt and assimilate to specific contextual demands influenced by geographic location and historical period. Factors such as behavioural distinctions, language differences, physical features that are expressed in stereotypes and stigma add uniquely to the intricate nature of ethnic identity formation, especially during childhood and adolescence [25,26]. It is within the family context that both privilege and subordination are introduced, taught and communicated to children. In doing so, social distance is defined within specific social spaces (i.e. from the neighbourhood to larger geographical areas). In the example of race and ethnicity, parents from black and minority ethnic groups who place their children in a majority white environment will no doubt transmit ways to move about these social spaces to either assert power among the privileged or reduce the likelihood of confrontation. Similar lessons apply to social class, which are especially apparent in the absence of race and ethnicity. As discussed in greater detail below, this constitutes a critical element in understanding the intergenerational transfer of cognitive dispositions and appraisals, beliefs and behaviours, regardless of the subtlety and inadvertence with which parents communicate these social facts (in a Durkheimian sense, i.e. ways of acting, thinking, feeling that are external to the individual and made possible through power of coercion by those within privileged status groups).

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Schools have more narrowly defined socialization goals, including formal instruction and cognitive development (i.e. the acquisition of knowledge, development of analytic and verbal skills). Bourdieu identifies educational systems as among ‘the fundamental institutions in the reproduction of class inequality from generation to generation’ ([27], p. 1463). Nash [28] offers an interpretation: schools have the capability to shape and impact habitus in a manner that extends beyond the role of the family. The structural features of the classroom encourage students to formulate social comparisons and develop their responses to a system of costs and rewards. Most important in terms of status attainment, schools function as a context in which perceptions about opportunity structures and what is necessary to succeed are formed. Peer groups are an avenue for socialization that are uniquely characterized by being voluntary social interactions in which boundaries are more fluid and independence can be exercised. Friendships are, more often than other relationships, associations between status equals. They help to develop competence and validation of the self and provide an opportunity to acquire knowledge not introduced in family and school contexts. In the example of racial socialization, many studies limit their scope to a single sphere, the family. However, it is at a relatively young age that children begin to engage in identity politics with their peers. Peer socialization can heavily influence the experience of two moments of reckoning: the moment children realize that being members of a minority status group represents difference and the moment children realize their position relative to others, their label and the defined power dynamic. For minorities, coincident with the labelling are the other distinct processes of stigmatization (i.e. the execution of disapproval, rejection, exclusion and discrimination) [29]. Finally, the work (occupational) context is often the most dominant setting in adulthood for socialization beyond the family. It is organized around a bureaucratic structure, and the socialization of adults in this context varies by the degrees of autonomy, conformity, supervision, routinization and complexity experienced [30]. Certain jobs confer access to status, prestige, knowledge and other resources that enhance

wellbeing, especially when accompanied by a sense of mastery or self-efficacy. Work can also be a common stressor and chronic strain [31].

6.2.2

An example of social structure in mental health research

From a sociological perspective, social arrangements and processes are fundamental to understanding both the causes and consequences of poor mental health [32]. These frameworks tend to focus on potential causal factors that are linked to occupying a certain social status position [33,34]. Sociological mental health research focuses on social variation in the incidence and prevalence of psychological symptoms related to social factors, such as social support, social capital, social integration or participation, and acute and chronic stressors. The sociological study of stress and mental health is an example of a research programme that heavily considers the influence of social structure (see Aneshensel [35] for a review). Stress and related strains are referred to as consequences of social arrangements or as antecedents to a health-related disorder. Two broad agendas dominate research in this area: the social distribution of stress and social variation in the response to stress. For both, fundamental social statuses (e.g. gender, social class, ethnicity see Chapter 14) are crucial in understanding differential exposure to stressors [36 38]. Sociologists assert that stressful events and chronic stressors are entrenched in the structural contexts of people’s lives [34]. It is difficult to separate social and economic status from the likelihood of experiencing stressors and strains. Individuals occupying disadvantaged social positions experience specific experiential, environmental and financial hardships. For example, exposure to economic hardship, whether somewhat temporary or chronic over the life course, heightens exposure to life strains while, at the same time, limiting people’s ability to manage these strains. [39] Stressors are evidently not randomly distributed throughout the population [36,40,41]. Exposure to stressors is an inevitable consequence of status arrangements and resulting inequalities that affect

CONCEPTS AND CHALLENGES IN CAPTURING THE SOCIAL ENVIRONMENT

access to power, resources and opportunities, and status [35]. Two major pathways linking structure with individual experiences of stressors involves exclusion from full participation in the social system and

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participation that fails to provide the expected returns [35]. These are the routes through which macro-structures are connected to micro-conditions in peoples’ lives [42].

AREA-LEVEL FACTORS AND MENTAL HEALTH

There has been an increase in attention to situating individuals in their social contexts by attempting to capture specific aspects of the environments in which they live and work. Many of these studies focus on neighbourhoods, communities and other areas in relation to mental health [43,44]. In this section, we begin with a discussion of recent conceptualizations of the wider social environment in mental health research, commonly focused on depression and psychosis. Particular attention is paid to social capital as an example of the narrow view that is taken regarding complex and dynamic social processes. Across disciplines, there is an interest in the cascading effects of social context on individual mental health (see March et al. [43] and Kim [44] for recent reviews). Known continuities and discontinuities in mental health over the life course [45] challenge the notion that capturing current environment (i.e. at the time outcomes are measured) is sufficient [46]. However, with very few exceptions (e.g. see Wheaton and Clarke [47]), studies have failed to consider the individual life course and the history of the places where individuals live and work. For example, evidence suggests that middle childhood may be a sensitive period during which children are at the greatest risk of being influenced by deleterious neighbourhoods (see Ingoldsby and Shaw [48] for a review). Each individual has a history of exposure to a particular place, and often many places the social context is embedded over time. Associations between an individual’s mental health and the social environment is subject to the cautions applicable in any study that fails to consider sequence and timing of exposure i.e. whether mental health is a cause or a consequence of exposure to particular environs. From a developmental psychology perspective, Bronfenbrenner emphasizes multiple, interrelated influences family functioning, school-related factors, peers and communities as well as social statuses such

as gender, age and ethnicity [49,50]. Some evidence suggests that childhood psychosocial problems occur more frequently in deprived areas, and that only a fraction of the differences between areas is explained by individual and family characteristics [51]. However, as with studies of adult samples, it is unclear whether or not such associations reflect social drift (e.g. parents with psychiatric problems moving to certain areas in the case of children) or suggest social causation (the aetiological influence of social environment). In addition, sociological theories of how the environment comes to influence the individual involve a focus on how the effects of the community and neighbourhood influence communal care, which in turn impacts on the behaviour of children and adolescents. For example, social disorganization theory emphasizes the effect of weak social control networks on adolescent behavioural outcomes through residential instability, segregation, isolation and low socioeconomic status (SES) [52 54]. (See Jencks and Mayer [55] and Leventhal and Brooks-Gunn [56] for reviews of the theoretical frameworks and conceptual models that consider the influence of place on child development.) Leventhal and Brooks-Gunn [56] identified three broad factors that potentially shape children’s behaviour: lack of institutional resources (e.g. health care and day care), lack of norms and collective efficacy in the neighbourhoods and communities, and child parent relationships. The latter is likely to be heavily influenced by the intergenerational transfer of economic, social and health difficulties that may result in psychosocial problems. For example, there are likely to be gender differences in the way parents socialize their children and adolescents to engage in their social environment. Evidence suggests that girls tend to be more closely supervised by their parents, and low maternal monitoring of behaviour is linked to the occurrence of externalizing behaviour [57].

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Most sociological and psychological models propose that the effects of neighbourhoods on child and adolescent health and behaviour outcomes are indirect, operating through more proximal behaviours [56]. Potential direct effects are not generally ignored. There is some consideration that the more embedded an individual becomes in a neighbourhood or community over the life course, the greater the possibility of direct effects of the neighbourhood (e.g. see Sampson [53]). Moreover, recent research has shown that context is transmitted across generations [58]. Thus, there may be generations of individuals that are exposed to direct deleterious exposures at the neighbourhood level. Turning to adult mental health, a limited number of studies have explored the relation between the social environment and depression [44]. A recent systematic review conducted by Kim [44] focuses on the most commonly studied neighbourhood characteristics, such as neighbourhood-level SES, built environment, internal and external physical features, local services, amenities, social disorder and social capital. Neighbourhood SES is captured using an aggregate of household income, education, or occupational status, usually at the level of the census tract. An assessment of the collective economic deprivation facing residents bound together is important. However, neighbourhoods and communities where there is more integration across social class groups should attempt to accurately document any benefits of economic desegregation. The built environment can refer to structural attributes of a community, such as the state of housing or buildings in a community or the presence and proximity of green spaces. The internal and external features of the social environment can be useful for thinking about how specific aspects of the immediate physical environment may influence mental health (e.g. see Galea et al. [59]). The features of an internal physical space can take into account the state of basic amenities, such as nonshared bathroom and kitchen facilities or access to central heating. The immediate external space may also be important to consider. For example, in densely urbanized New York City the condition of the building of residence and the surrounding buildings was associated with depression in

the previous six months. However, no association was observed between reported cleanliness of sidewalks and streets and depression [59]. Research concerning the impact of context on disorders more prevalent in the general population, specifically depression, tends to focus on characteristics of material and physical environments [44]. For example, the built environment includes the state of buildings and housing, as well as the density of supermarkets and green grocers, the availability of basic amenities that facilitate social interactions, such as community centres and cafes, and areas that make physical activity more viable, such as green spaces. Another rapidly strengthening strand of research regarding the impact of the social environment on mental health has focused on psychosis (see March et al. [43] for a review). There is an extensive history of research considering the role of the social environment in the aetiology and development of psychotic disorders. However, most of this research has relied on various concepts under the umbrella of ‘wider social environment’. This generally refers to neighbourhood-level dimensions of deprivation, residential stability (e.g. housing tenure, migration), household/family structure and ethnic composition or density of an area [60]. However, it is unclear why or how these particular aspects of the social environment are linked under this umbrella term. While these aspects are important and in some way interrelated, there has been a paucity of theoretically informed research in the past decade. Moreover, other potentially relevant social and contextual factors have received scant consideration. For example, the influence of the physicality of place (e.g. the built environment and material resources) has been understudied, despite this being a more direct way to capture the most proximal area deprivation [43]. In addition, macro-level social processes (e.g. policies resulting in structural inequalities) and historical circumstances (e.g. racism resulting from particular legacies of slavery, colonization, deindustrialization and economic downturns resulting in increased unemployment rates and downward mobility) that shape social context are seldom considered in thinking about how the wider social environment and relevant exposures are formed. By neglecting theory

CONCEPTS AND CHALLENGES IN CAPTURING THE SOCIAL ENVIRONMENT

and history in construing what may be aetiologically important about the wider social environment, we

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may elide potentially beneficial community-level interventions as we move forward.

ONE APPROACH DOES NOT FIT ALL: THE EXAMPLE OF SOCIAL CAPITAL

In most mental health-related research, social capital generally refers to the features of social organization, specifically as it relates to social trust, civic participation and norms of reciprocity that facilitate cooperation for mutual benefit [61]. Briefly, social capital has become a way of describing social processes that shape interactions between individuals, groups or communities. Thus, variation in social environments may warrant consideration of different approaches to social capital. One striking aspect of the application of this construct in research on psychiatric outcomes is the failure to consider the differences in conceptualizations of social capital. While health research often utilizes the aforementioned definition [61], there has been little application of other perspectives and approaches rooted in different social theories and schools of thought. We describe each of the major theoretical perspectives on social capital below. This list is by no means exhaustive, but is meant for critical consideration. The question remains: Is it appropriate in every social milieu to consider the presence of social trust, civic participation and norms of reciprocity that facilitate cooperation for mutual benefit? From whose perspective is this being assessed and judged? Are these mutually beneficial across groups? Bourdieu, a social theorist known for his focus on agency (micro-level individual actors) and structure (large-scale social structures, e.g. broadly referring to the systems within which individuals relate), places emphasis on instrumental aspects of social capital and on benefits to the individual [62]. His definition of social capital comprises (1) the social relationships that allow individuals to access resources and (2) the amount and quality of those resources. From this perspective, these exchanges require deliberate investment of both economic and cultural resources, may lead to access to economic resources and are likely to increase cultural capital (institutional or embodied) [62]. Indeed, capital may be transferred [63].

Coleman’s thinking stems from the rational choice school of thought. One of the main tenets of Rational Choice Theory simply states that individuals choose actions that will maximize utility or satisfy specific needs and wants [64]. Here, social capital is defined by its function. The elements of social capital overlap with some aspects of social structure, facilitate certain actions within the structure and are embodied in relationships between individuals and among individuals. Finally, and possibly most important, social capital that is valuable to one individual may be useless to another [64]. The most commonly used conceptualization of social capital in research on psychiatric outcomes appears to be Putnam’s [65] definition, which focuses on the collective or the ‘civil society’ (briefly outlined above). From this perspective, social capital refers to the features of social life (e.g. social networks, norms and trust) that enable participants in a social environment to act together more effectively to pursue shared objectives. While this perspective is useful in general terms when considering notions of how individuals interact in a society, it has been criticized for not considering the complex economic relationships in societies that marginalize certain groups [66]. Finally, specifically in contrast to Putnam, Portes [66] places emphasis on distinguishing the resources used to represent social capital from the ability to obtain them by membership within different social status groups. According to Portes [66], ‘social capital stands for the ability of actors to secure benefits by virtue of membership in social networks or other social structures’ ([66], p. 6). Portes extends Coleman’s thinking about the false assumptions concerning the universal benefit of social capital. He notes that the beneficial strong ties for some in a community or neighbourhood result in the exclusion of others. Portes is one of the few theorists to discuss the negative consequences of social capital [66]. He argues that a focus on collective norms can restrict

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individual freedom and increase demands for conformity. As a result, there is a downward push of the norms of the majority, especially for social groups characterized by marginalization and opposition to the mainstream. For example, some researchers have considered voter turnout (or lack of) as an indicator of social capital in urban social environments, where

6.5

social and health inequalities have fragmented communities and silenced members of disadvantaged groups. With the growing emphasis on social exclusion a somewhat nebulous term that generally is defined as a lack of social, cultural and political participation [67] this distinction deserves further consideration.

SOCIAL AND GEOGRAPHICAL MOBILITY

In the final section of this chapter, we return to the idea that consideration must be given to past and present positions in social structures. Mobility is broadly defined as movement from one distinct social environment to another, both directly through a change in physical environment (geographical mobility) and more indirectly through a change in social status position (social mobility). With social mobility may come geographic mobility, and vice versa. In some studies, mobility of some type is represented by residential instability, measured indirectly through information on housing tenure and migration status. What happens to developed perceptions and evaluations associated with one social environment when there is a notable shift in the type of social interaction and/or environment? Both social and geographical mobility require a certain level of adaptability. For some, these transitions are made with great ease; for others, mobility comes with a strong internal conflict that may not prove beneficial to health, particularly mental health. With respect to habitus, individuals can have an ‘inappropriate habitus’; i.e. a person may not possess the appropriate habitus for their current situation in the social world [21]. There is a paucity of research focused on associations between social mobility trajectories and mental health. What evidence there is suggests that upward social mobility trajectories over the life course can be beneficial for mental health [68] and downward mobility or loss of status over time may be detrimental for mental health [69]. Migration receives the most attention in recent research (e.g. see Reference [71]). The difficulty in managing the unfamiliarity and challenges presented by a new setting with old schemas resulting from long-

term socialization is implied in this research, but not directly assessed. Changes in social distance and social space often require newly formulated strategies that result in adaptation and assimilation, particularly in cases of geographical mobility. Also, the question remains whether or not there are diminishing returns from upward mobility, specifically as it relates to intergenerational mobility. One important aspect of mobility is the timing of a shift from one social environment to another. Distinctions made about timing should refer to the intersection between biographical and historical transitions (e.g. during childhood versus adulthood, first generation versus second generation), with emphasis on historical context and social change [70]. Individuals are likely to differ in their responses to change in status depending on the type and the timing of the mobility during the life course. Is it more difficult for an adult than a child or adolescent to reconcile the loss in status and the shift in schema or habitus, or perhaps the reverse? One recent meta-analysis of research regarding migration and schizophrenia [71] indicates that second-generation migrants may have a higher risk of psychosis than first-generation migrants. One hypothesis generated by this evidence is that the duration of exposure to discrimination in the host context is longer for second-generation migrants than for first-generation migrants. Viewed through the lens of habitus, perhaps second-generation migrants repeatedly shift schemas from their parents’ upbringing, since parents tend to socialize their children in the ways in which they were socialized, to the majority norms of the context into which they were born. This could be stressful at the critical time when adolescents transition to adulthood and enter the period of risk for psychosis.

CONCEPTS AND CHALLENGES IN CAPTURING THE SOCIAL ENVIRONMENT

In the case of geographical mobility, the migration of a particular group generally hinges on status-based resources and opportunities. For example, movement is more common among individuals of a minority group status that are either of a higher, more privileged, status (possibly more educated), a more socially integrated member of a larger supportive network of other migrants, or both. In the case of the former, it is highly likely that they are moving from being a member of the majority group in their immediate social milieu to occupying a disadvantaged minority status position in the new society. However,

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residence in an extended network of other migrants (i.e. enclaves) may confer protective effects. For example, ethnic density (the proportion of a particular ethnic group in a given geographic location) has been shown to confer protection from psychosis across settings, even in the most deprived areas [72,73]. One hypothesized mechanism is that of a buffering effect, which mitigates the impact of discrimination from majority populations, though this remains to be tested. Moreover, the exact timing of this effect remains unknown, as the exposure has been measured around illness onset.

CONCLUSION

The wider social environment is dynamic, complex and historically shaped. When considering how the social environment may impact an individual’s mental health, the body and its state of health should be considered as concrete representations of lived experience situated in a sociohistorical and health-related context over the life course. With the guidance of social theory, as we have illustrated with the concept of habitus, we may begin to understand how, across the life course, social structures become psychologically and biologically embedded in individuals. By highlighting the relative positioning of individuals within their social environments, the shifting salience of social context across the life course and ultimate embodiment of social structures, we hope to stimulate strands of empirical research that may enrich the

tapestry woven by social psychiatry and psychiatric epidemiology. Possible research questions include: (1) Do intergenerational shifts from a schema of one habitus to that of a different habitus impact mental health and (2) under which mobility conditions (e.g. geographical, social) does a change in habitus affect mental health? Furthermore, does a disjuncture or dissonance between one set of embedded cognitive dispositions and actions and the development of a new habitus potentially result in the expression of pathological symptoms? Do shifts in habitus potentially work against our achieving the benefits of upward mobility and exacerbate the impact of downward mobility? In answering some of these questions, perhaps we can narrow in on the wider social environment and its effects on mental health.

ACKNOWLEDGEMENTS Stephani Hatch is supported by the Biomedical Research Centre for Mental Health at the Institute of Psychiatry, Kings College London and The South London and Maudsley NHS Foundation Trust. REFERENCES 1. Reay, D. (2004) ‘It’s all becoming a habitus’: beyond the habitual use of habitus in educational research. British Journal of Sociology of Education, 25, 431 444.

2. House, J. (1992) Social structure and personality, in Social Psychology: Sociological Perspectives, 2nd edn (eds M. Rosenberg and R. H. Turner), Transaction Publishers, London, pp. 525 561. 3. Schooler, C. (1996) Cultural and social structural explanations of cross national psychological differences. Annual Review of Sociology, 22, 323 349. 4. Braverman, P. (2006) Health disparities and health equity: concepts and measurement. Annual Review of Public Health, 27, 167 194.

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5. Berkman, L. F. and Kawachi, I. (2000) Social Epidemiology: Rediscovering the Role of the Physical and Social Environment, Oxford University Press, Oxford. 6. Marmot, M. and Wilkinson, R. G. (2005) Social Determinants of Health, 2nd edn, Oxford University Press, Oxford. 7. Bourdieu, P. (1989) Social space and symbolic power. Sociological Theory, 7, 14 25. 8. Lindbladh, E., Lyttkens, C. H., Hanson, B. S. et al. (1996) An economic and sociological interpretation of social differences in health related behaviour: an encounter as a guide to social epidemiology. Social Science and Medicine, 43, 1817 1827. 9. Bourdieu, P. and Wacquant, L. (1992) An Invitation to Reflexive Sociology, University of Chicago Press, Chicago, Illinois. 10. Cicourel, A. V. (1993) Aspects of structural and processual theories of knowledge, in Bourdieu: Critical Perspectives (eds C. Calhoun, E. Lipuma and M. Postone), Polity Press, Cambridge, pp. 89 115. 11. Weininger, E. (2004) Foundations of Pierre Bourdieu’s class analysis, in Approaches to Class Analysis (ed. E. O. Wright), Cambridge University Press, Cambridge, pp. 82 118. 12. Corsaro, W. A. and Eder, D. (1995) Development and socialization of children and adolescents, in Sociological Perspectives on Social Psychology (eds K. S. Cook, G. A. Fine and J. S. House), Allyn and Bacon, London, pp. 421 451. 13. McLean, C., Campbell, C. and Cornish, F. (2003) African Caribbean interactions with mental health services in the UK: experiences and expectations of exclusion as (re)productive of health inequalities. Social Science and Medicine, 56, 657 669. 14. Morgan, C., Mallett, R. M., Hutchinson, G. et al. (2004) Negative pathways to psychiatric care and ethnicity: the bridge between social science and psychiatry. Social Science and Medicine, 58, 739 752. 15. Richman, L., Kohn Wood, L. and Williams, D. (2007) The role of discrimination and racial identity for mental health service utilization. Journal of Social and Clinical Psychology, 26, 960 981. 16. Gecas, V. (1992) Contexts of socialisation, in Social Psychology: Sociological Perspectives, 2nd edn (eds M. Rosenberg and R. H. Turner), Transaction Publishers, London, pp. 165 199. 17. Bush, D. M. and Simmons, R. G. (1992) Socialisation processes over the life course, in Social Psychology:

Sociological Perspectives, 2nd edn (eds M. Rosenberg and R. H. Turner), Transaction Publishers, London, pp. 133 164. 18. Sewell, W. H. (1963) Some recent developments in socialisation theory and research. The Annals of the American Academy of Political and Social Science, 349, 163 181. 19. Bourdieu, P. (1977) Outline of a Theory of Practice, University Press, Cambridge. 20. Bourdieu, P. (1990) Other Words: Essays Toward a Reflexive Sociology, Polity Press, Cambridge. 21. Ritzer, G. (2000) Modern Sociological Theory, McGraw Hill, Boston, Massachusetts. 22. Helms, J. E. (1990) Black and White Racial Identity: Theory, Research, and Practice, Greenwood, New York. 23. Spencer, M. and Markstrom Adams, C. (1990) Identity processes among racial and ethnic minority children in America. Child Development, 61, 290 310. 24. Hughes, D. and Chen, L. (1997) What parents tell children about race: an examination of race related socialization among African American families. Applied Developmental Science, 1, 200 214. 25. Hughes, D. (2003) Correlates of African American and Latino parents’ messages to children about ethnicity and race: a comparative study of racial socialization. American Journal of Community Psychology, 31, 15 33. 26. Miller, D. B. and MacIntosh, R. (1999) Promoting resilience in urban African American adolescents: racial socialization and identity as protective factors. Social Work Research, 23, 159 169. 27. DiMaggio, P. (1979) Review essay: on Pierre Bourdieu. American Journal of Sociology, 84, 1460 1474. 28. Nash, R. (1990) Bourdieu on education and social and cultural reproduction. British Journal of Sociology of Education, 11, 431 447. 29. Link, B. G. and Phelan, J. C. (2000) Evaluating the fundamental cause explanation for social disparities in health, in Handbook of Medical Sociology, 5th edn (eds C. E. Bird, P. Conrad and A. Fremont), Prentice Hall, Englewood Cliffs, New Jersey, pp. 33 46. 30. Kohn, M. (1980) Job complexity and adult personality, in Themes of Love and Work in Adulthood (eds N. Smelser and E. Erikson), Harvard University Press, Cambridge, Massachusetts, pp. 193 212. 31. Pearlin, L. I., Menaghan, E., Lieberman, M. et al. (1981) The stress process. Journal of Health and Social Behavior, 22, 337 356.

CONCEPTS AND CHALLENGES IN CAPTURING THE SOCIAL ENVIRONMENT

32. Aneshensel, C. and Phelan, J. (1999) The sociology of mental health: surveying the field, in Handbook of the Sociology of Mental Health (eds C. S. Aneshensel and J. Phelan), Kluwer Academic/Plenum, New York, pp. 3 18. 33. Link, B. G. and Phelan, J. (1995) Social conditions as fundamental causes of disease. Journal of Health and Social Behavior, 35 (Extra Issue: Forty Years of Medical Sociology: The State of the Art and Directions for the Future), 80 94.

46.

47.

34. Pearlin, L. I. (1989) The sociological study of stress. Journal of Health and Social Behavior, 30, 241 256. 35. Aneshensel, C. S. (1992) Social stress: theory and research. Annual Review of Sociology, 18, 15 38. 36. Turner, R. J., Wheaton, B. and Lloyd, D. A. (1995) The epidemiology of stress. American Sociological Review, 60, 104 125. 37. Kessler, R. C. and MacLeod, J. (1984) Sex differences in vulnerability to undesirable life events. American Sociological Review, 49, 620 631. 38. Turner, R. J. and Avison, W. (2003) Status variation in stress exposure: implications for the interpretation of research on race, socioeconomic status, and gender. Journal of Health and Social Behavior, 44, 488 505. 39. Pearlin, L. I. (1999) The stress process revisited, in Handbook of the Sociology of Mental Health (eds C. S. Aneshensel and J. Phelan), Kluwer Academic/Plenum, New York, pp. 395 415. 40. Kessler, R. C. (1979) A strategy for studying differential vulnerability to the psychological consequences of stress. Journal of Health and Social Behavior, 20, 100 108. 41. MacLeod, J. D. and Kessler, R. C. (1990) Socioeconomic status differences in vulnerability to undesirable life events. Journal of Health and Social Behavior, 31, 162 172. 42. Hatch, S. L. (2007) Economic stressors, social integration, and drug use among women in an inner city community. Journal of Drug Issues, 37, 257 280. 43. March, D., Hatch, S. L., Morgan, C. et al. (2008) Psychosis and place. Epidemiological Reviews, 30, 84 100.

48.

49.

50.

51.

52.

53.

54.

55.

44. Kim, D. (2008) Blues from the neighborhood? Neighborhood characteristics and depression. Epidemiologic Reviews, 30, 101 117. 45. Rutter, M., Kim Cohen, J. and Maughan, B. (2006) Continuities and discontinuities in psychopathology

56.

75

between childhood and adult life. Journal of Child Psychology and Psychiatry, 47, 276 295. March, D. and Susser, E. (2008) Social context and developmental psychopathology, in Developmental Psychopathology and Wellness: Genetic and Environmental Influences (ed. J. Hudziak), American Psychiatric Publishing, Inc., Washington, DC, pp. 49 64. Wheaton, B. and Clarke, P. (2003) Space meets time: integrating temporal and contextual influences on mental health in early adulthood. American Sociological Review, 68, 680 706. Ingoldsby, E. M. and Shaw, D. S. (2002) Neighborhood contextual factors and early starting antisocial pathways. Clinical Child and Family Psychology Review, 5, 21 55. Bronfenbrenner, U. (1986) Ecology of the family as a context for human development: research perspectives. Developmental Psychology, 22, 723 742. Bronfenbrenner, U. (1992) Ecological systems theory, in Six Theories of Child Development. Revised Formulations and Current Issues (ed. R. Vasta), Jessica Kingsley Publishers, London. Reijneveld, S. A., Brugman, E., Verhulst, F. C. et al. (2005) Area deprivation and child psychosocial problems:a national cross sectional study among school aged children. Social Psychiatry and Psychiatric Epidemiology, 40, 18 23. Sampson, R. J. and Groves, W. B. (1989) Community structure and crime: testing social disorganization theory. American Journal of Sociology, 94, 774 802. Sampson, R. J. (1993) Family and community level influences of crime: a contextual theory and strategies for research testing, in Integrating Individual and Ecological Aspects of Crime (eds D. P. Farrington, R. J. Sampson and P. O. H. Wikstr€ om), National Council for Crime Prevention, Stockholm, pp. 426 444. Sampson, R. J. and Laub, J. H. (1994) Urban poverty and the family context of delinquency: a new look at structure and process in a classic study. Child Development, 65, 523 540. Jencks, C. and Mayer, S. (1990) The social consequences of growing up in a poor neighborhood, in Inner City Poverty in the United States (eds L. E. Lynn and M. F. H. McGeary), National Academy Press, Washington, DC, pp. 111 186. Leventhal, T. and Brooks Gunn, J. (2000) The neighbor hoods they live in: the effects of neighborhood residence

76

57.

58. 59.

60.

61.

62. 63.

64.

65.

PERSPECTIVES AND METHODS

on child and adolescent outcomes. Psychological Bulletin, 126, 309 337. Kim, J. E., Hetherington, E. M. and Reiss, D. (1999) Associations among family relationships, antisocial peers, and adolescents’ externalizing behaviors: gender and family type differences. Child Development, 70, 1209 1230. Sharkey, P. (2008) Intergenerational transmission of context. American Journal of Sociology, 113, 931 969. Galea, S., Ahern, J., Rudenstine, S. et al. (2005) Urban built environment and depression: a multilevel analysis. Journal of Epidemiology of Community Health, 59, 822 827. Allardyce, J. and Boydell, J. (2006) Review: the wider social environment and schizophrenia. Schizophrenia Bulletin, 32, 592 598. Kawachi, I., Kennedy, B. P. and Glass, R. (1999) Social capital and self rated health: a contextual analysis. American Journal of Public Health, 89, 1187 1193. Bourdieu, P. (1986) Forms of Capital, Free Press, New York. Bourdieu, P. and Wacquant, L. (1992) An Invitation to Reflexive Sociology, The University of Chicago Press, Chicago, Illinois. Coleman, J. S. (1988) Social capital in the creation of human capital. American Journal of Sociology, (suppl.), S95 S120. Putnam, R. (2000) Bowling Alone: The Collapse and Revival of American Community, Simon and Schuster, New York.

66. Portes, A. (1998) Social capital: its origins and applications in modern sociology. Annual Review of Sociology, 24, 1 24. 67. Morgan, C., Burns, T., Fitzpatrick, R. et al. (2007) Social exclusion and mental health: conceptual and methodological review. British Journal of Psychiatry, 191, 477 483. 68. Poulton, R., Avshalom, C., Milne, B. J. et al. (2002) Association between children’s experience of socioeconomic disadvantage and adult health: a life course study. Lancet, 360, 1640 1645. 69. Tiffin, P. A., Pearce, M. S. and Parker, L. (2005) Social mobility over the life course and self reported mental health at age 50: prospective cohort study. Journal of Epidemiology and Community Health, 59, 870 872. 70. ElderJr, Glen H. (1994) Time, human agency, and social change: perspectives on the life course. Social Psychology Quarterly, 57, 4 15. 71. Cantor Graae, E. and Selten, J. (2005) Schizophrenia and migration: meta analysis and review. American Journal of Psychiatry, 162, 12 24. 72. Boydell, J., van Os, J., McKenzie, K. et al. (2001) Incidence of schizophrenia in ethnic minorities in London: ecological study into interactions with environment. British Medical Journal, 323, 1 4. 73. Veling, W., Susser, E., van Os, J. et al. (2008) Ethnic density of neighborhoods and incidence of psychotic disorders among immigrants. American Journal of Psychiatry, 165, 66 73.

7 Qualitative research methods Joanna Murray Institute of Psychiatry, King' s College London, London, UK

7.1

INTRODUCTION

The arrival of qualitative methods in the mainstream of health care research was demonstrated by the publication in the British Medical Journal (BMJ) of a series of short methodological papers in the mid1990s [1 4]. These papers set out to de-mystify approaches to the collection and analysis of nonnumeric data and to explain the benefits of incorporating qualitative methods into research on health and illness. Efforts were made to demonstrate that methodological rigour was perfectly achievable in qualitative research if systematic processes were applied at all stages of the study [5] and adequately described in publications [6]. Further evidence for the integration of qualitative methods in health research came from the publication of six papers in the BMJ addressing theoretical approaches and critical appraisal [7 12]. Much has been written about the fundamental theoretical differences between qualitative and quantitative research and it is not the purpose of this chapter to rehearse these arguments, nor to describe the history and variety of theoretical approaches to qualitative enquiry [13]. The aim is to provide a practical introduction to qualitative research methods in mental health and to illustrate their role in understanding how events are shaped. Although both

qualitative and quantitative research are based on empirical evidence (the data collected), it remains a fallacy in the health sciences that the two approaches are directly opposed and incompatible [14]. The traditional methodological divide was bridged by recognition of the contributions each can make to improving health care and also by the requirements of research funders, who increasingly view multidisciplinary and mixed methods research as the most productive in applied health sciences [15,16]. In terms of the contribution qualitative methods can make to epidemiology and treatment trials, research protocols now commonly include the following qualitative elements: .

Identification of concepts of illness and development of conceptual frameworks

.

Clarification of cultural variations in language and modes of expression

.

Development of theory prior to framing hypotheses

.

Development, translation and validation of research tools

Principles of Social Psychiatry, second edition Edited by Craig Morgan and Dinesh Bhugra Ó 2010 John Wiley & Sons, Ltd.

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PERSPECTIVES AND METHODS

Investigation of anomalies in the findings of surveys and treatment trial.

The main difference between qualitative and quantitative methodologies stems from the approach to data analysis: while quantitative research relies upon statistical analysis of numerical data, qualitative analysis is explicitly interpretative. Consequently the sampling of data differs between the two methods, with random sampling in quantitative studies to achieve representative subgroups of the population contrasting with purposive sampling in qualitative studies to identify research participants who possess the characteristics of relevance to the research question. The two methods are not conflicting: they simply offer the appropriate means of answering different types of question. For example, while quantitative methods are required to measure the prevalence and risk factors for lower back pain in a defined population, qualitative methods would be necessary to investigate the experience of back pain and to develop theory on ways of coping with it. The

7.2

measurement of pain might seem to be a relatively straightforward matter, requiring the use of valid and reliable self-report scales. However, the subjective meaning and significance of the pain and the attribution of causes are variable and subject to a wide range of social and cultural influences. Decisions on seeking help may involve others who have their own perspective on the problem. Thus the experience of symptoms and ways of responding are not simply matters of medical concern but are personal and social phenomena involving individual beliefs and social norms. Qualitative research offers an empirical approach to investigating the ‘lived experience’ of illness and, by interpretation of descriptive accounts, to generate theories concerning the relevant processes. In mental health this approach can contribute to the provision of more appropriate interventions and accessible services. The patient and/or carer is situated within his/her immediate social context, and by making the patient’s (or carer’s) perspective central to investigating mental health problems, the experience of treatment and the quality of care can be improved.

THE QUALITATIVE RESEARCH APPROACH

One of the central tenets of qualitative research is the ‘bottom-up’ approach in which the perspective of research participants is central to the process of data collection, analysis and theory development. It follows that the context in which to collect and understand the data should, ideally, be the natural setting in which the phenomenon would be discussed or observed (e.g. the participant’s own home rather than a medical setting). This contrasts with the ‘top-down’ approach in quantitative studies where the researchers predetermine the scale and content of the investigation from a review of existing evidence. The setting for data collection is unlikely to be considered influential. Nonetheless, qualitative and quantitative researchers share a common empirical approach, involving the systematic collection and analysis of data. Both are concerned with the individual’s point of view, but qualitative researchers believe they can best understand and represent the individual’s perspective by

detailed interviewing and observation, the collection of ‘thick’ or ‘rich’ data [17]. Although the divergence between the two approaches is not always clear-cut, it stems from the centrality of deduction (theory testing) in quantitative methods and induction (theory development) in qualitative methods and the consequent differences in sampling, analysis and reporting of findings. In general, qualitative methodology seeks to develop understanding of phenomena and/or to construct theory by a process of induction. The focus is on analysing and making sense of rich data from relatively few selected cases, as a basis for developing theory. In contrast, quantitative methodology is predominantly concerned with testing hypotheses derived from existing theory. Sampling of cases for quantitative analysis is based on probability, representativeness and statistical significance. However, this apparent methodological divide is not always helpful and is often crossed for sound empirical reasons. Qualitative methods may be used in hypothesis testing, for

QUALITATIVE RESEARCH METHODS

instance, when nonnumerical data are collected by incorporating open-ended questions into survey questionnaires. In this instance, responses may be systematically coded into categories by content analysis, displayed as frequency distributions and simple measures of association applied. This chapter will focus on inductive methods, the ‘bottom-up’ approach in which the researcher aims to

7.3

develop theory to explain phenomena by analysing and interpreting individual accounts of experiences. The main qualitative methods used in mental health research, individual interviews, focus group discussions and participant observation will be described. The application of these different methods will be illustrated with examples drawn from a variety of mental health settings.

QUALITATIVE METHODS

Data for qualitative analysis appear in many forms other than the conventional transcribed interview between researcher and participant. In some studies no researcher is involved in the data recording; the material for analysis may be published accounts in newspapers, narratives from fiction, biographical stories, diaries, letters, video recordings and even televised soap operas. However, the typical method of data collection is the face-to-face interview where researchers engage with their subject to produce a personal account of the participant’s experiences and attitudes.

7.3.1

79

Individual interviews

Interviews are a familiar aspect of modern life, often used to control access to resources and advancement. They are used to assess medical symptoms, eligibility for benefits, suitability for training, college entry or a specific job. In these cases the interviewer is generally in a position of authority and has the power to act on the information elicited from the interviewee. The outcome may mean significant gain or loss for the interviewee. In other circumstances the interviewee may seek a more powerful role: celebrities and authors who are taking part in an interview to promote their latest book or film; politicians seizing the opportunity to promote a policy. However, interviews may contain an element of coercion, where the interviewee is reluctant to divulge information but may be compelled to do so, as in a police interview of a suspect. In contrast, the qualitative interviewer aims to empower the participant by explicit focus on their expertise in the area of enquiry and by arranging the meeting in the most natural setting available. The

researcher’s role is collaborative in facilitating an account of the participant’s experiences and beliefs. It is important for the researcher to stress that the participant is the expert. Perceived social identities are important and the researcher must establish good rapport from the outset, explaining the context for the study and their own perspective. This may concern their professional background or personal experience of the research topic. The researcher should remain aware that their own characteristics may influence the course and content of the interview. Empathic listening and tactful probes are essential to avoid excessive and unwanted intrusion. An explanation of the importance of the research and the participant’s contribution and a full account of ethical procedures should be given. Interview procedures are flexible: pre-framed openended questions may be used alongside prompts and probes for further development of the topic. Simple topic guides with a list of items for discussion can form the basis of a conversational style of interview, though this may be unsuited to the use of multiple interviewers. Vignettes that tell a story relevant to the research topic are useful in generating discussion of concepts that are sensitive or likely to be influenced by cultural variations (e.g. beliefs about depression [18 20]). The interview should, if possible, be audio-recorded so that a full and nuanced transcription and the recording itself is available for analysis. Taking detailed notes during the interview is a significant distraction to both parties and prevents close attention to the participant’s narrative. Key topics that arise during the interview that require further exploration may be overlooked. There is no substitute for verbatim quotes to support the interpretations.

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7.3.2

PERSPECTIVES AND METHODS

Focus group discussions

Qualitative researchers use focus group discussions to produce data and insights that would be less accessible without the interaction of the group. Data from the discussion is qualitatively different from that found in a series of individual narratives. The explicit aim of convening the group is to encourage the type of interaction that would occur in everyday life but with greater focus, allowing researchers access to ‘ideologies, practices and desires amongst specific groups of people’ [21]. For this reason focus group discussions are particularly suited to exploring and understanding social norms and cultural differences in mental health research. Why, for example, do some people seek help for psychological difficulties while others are extremely reluctant to accept professional intervention? The following study by Prior et al. [22] illustrates the advantages of focus groups in investigating concepts of mental health. Against a background of substantial research literature on the widespread reluctance to disclose symptoms of emotional distress to health professionals, Prior and colleagues set out to investigate lay concepts of common mental disorders. They chose focus groups as especially appropriate for studying public attitudes to disclosure as it would enable them to judge the willingness of people to disclose a psychiatric history and the reactions of others to the disclosures. In other words, they aimed to explore public responses to sensitive issues rather than individual private experiences that would be more appropriately explored through individual indepth interviews. Their findings were surprising: stigma was not an important factor in disclosure; more important was the way that lay people constructed common mental disorders as problems of living for which they considered a medical consultation to be inappropriate. The composition and venue for focus groups require careful consideration: .

Who should participate in the groups? This will depend upon the range of perspectives of relevance to the research question. If we were investigating the influence of beliefs on response to symptoms we

would endeavour to recruit a socially and culturally diverse sample. This would be a purposive or theoretical sampling strategy in that the characteristics of participants help to refine and delimit the generalizability of the research findings. However, we also need to consider how much diversity of characteristics is conducive to intragroup interaction. .

Should we aim for homogeneity or heterogeneity? For many studies social norms of behaviour are the focus of enquiry. In this, bringing together a group who share important key characteristics, such as age, gender, ethnicity, professional background, is essential. However, if we were investigating the experiences of users of a particular service, homogeneity would arise from their shared contact with that service and any diversity in demographic characteristics of group participants would be less important. Including participants from different professional backgrounds within a single focus group would tend to militate against free discussion of attitudes and social norms.

.

Should participants be unknown to each other? There is no reason why participants should not be members of a pre-existing group of work colleagues, neighbours or social group, as this allows for the discussion to take place in a natural setting. However, the sensitivity of the topic will have a bearing on the appropriateness of tapping into a preexisting group.

.

How many participants and where should they meet? Five to ten participants is generally regarded as the most effective for exploration of the topic. Recruitment problems are a major source of failure of focus groups so it is advisable to recruit more people than required and assume that some will not attend. The venue will depend on the study but should be a natural setting for that group to meet since people’s accounts are dependent on the context in which they take place. The workplace, school, club or health care setting may be appropriate or a neutral social venue. Expenses should be paid for attendance plus a small gratuity where appropriate.

QUALITATIVE RESEARCH METHODS .

What is the role of the researcher? The identity of the facilitator for each focus group should be carefully considered in relation to the characteristics of the participants. The facilitator can never be a neutral presence. Their gender, age, ethnicity and background are all influential, but to what extent do they need to share the characteristics of group members? What impact might their appearance and vocabulary have on the discussion? Will their presence unduly influence disclosure, language and idiom? Service user-led research in mental health has enabled the development of qualitative research into mental health care from the insider perspective. Focus groups facilitated by service user researchers may well produce more naturalistic discussion than those led by a psychiatrist, whose presence might encourage participants to frame their accounts within a more clinical framework.

The content of individual focus groups is flexible, to suit the needs of participants, with a variety of ways to engage members of the group. The session should begin by making participants feel welcome, offering refreshments and making introductions. The purpose of the research should be fully explained along with ethical procedures and ground rules for protecting confidentiality outside the group. The discussion progresses by use of a topic guide, which starts with general opening questions and increasingly focuses on more specific key areas. A set of prompts for each topic ensures that these are explored in sufficient detail. The presence of a co-facilitator helps to ensure that key points are pursued and that all participants are enabled to engage in the discussion. Activities can be introduced to stimulate discussion: vignettes are useful, as are rating scales, and ranking a series of statements according to importance to the group. Focus groups are often used to identify language and concepts in particular groups, to generate theory and hypotheses in the pilot stage of larger studies and as a component in multimethod studies where the focus groups help to clarify findings from other methods. The validity of the researcher’s interpretations of the data generated by a focus group may be tested by reconvening the group at a later stage. Participants can also assist in the analysis of the data by this method.

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7.3.3 Participant observation Participant observation (or ethnography) is the most traditional method of fieldwork, emerging directly from the work of anthropologists. The ethnographic method of data collection is most faithful to the principles of carrying out the study in the natural setting in which the phenomena of interest can be explored. It is an appropriate method for gaining insights in an unfamiliar setting. The researcher is present in the setting for longer periods of time and data are recorded from observations of, and participation in, the setting. The researcher’s contemporaneous fieldnotes contain detailed accounts and impressions of events and conversations for subsequent analysis. Fieldnotes do not include full verbatim transcriptions of speech; they are a distillation of the researcher’s experiences of an unfamiliar setting. In the field of mental health care there are examples of participant observation studies in which the researcher spends time in an unfamiliar treatment setting to understand the culture(s) in which staff and patients live and work (e.g. see Reference [23]). Quirk attended three acute psychiatric wards on an average of two days a week over a period of three to four months, recording his impressions in detailed fieldnotes and interviewing patients and staff in order to provide an ‘insider’ account of life on the wards. Visits were made at varied times of day and night and ward rounds and meetings were attended, but most of the researcher’s time was spent in informal interaction with patients. Over time the recording of fieldnotes became more focused and structured around emerging themes such as patients’ strategies for managing risk and how power is exercised and resisted on the ward. The distillation of events and social interaction through the fieldnotes of a participant observer enabled a critical examination of the day-to-day functioning of an institution and identified a range of service implications to improve the experiences of in-patients. Participant observation is not for the faint-hearted. It requires considerable preparation, high levels of detailed record keeping, constant attention to the influence of the researcher on the process and

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PERSPECTIVES AND METHODS

interpretation (reflexivity) and considerable investment of time. Ethical considerations are most acute in observational studies. From whom will informed consent be sought? Should all those present sign consent forms or only those whose discourse is included in the fieldnotes? What impact will the refusal of consent from some potential participants have on

7.4 7.4.1

the events and interactions observed? The researcher will need to address these issues before applying for ethical approval and should prepare the ground by seeking advice and cooperation from key individuals involved in the setting. Accounts of ethnographic studies in mental health can be found in Lee et al. [24], Skultans [25] and Quirk et al. [23].

RESEARCH PROCEDURES AND METHODOLOGICAL APPROACHES

Designing the study

The process of designing and conducting a qualitative study conforms to the principles of all scientific inquiry: review of existing evidence, identification of a gap in current knowledge, formulation of a research question to advance knowledge, selection of appropriate methods, collection and analysis of data, reporting of findings. However, in qualitative studies the procedures will vary according to the particular theoretical approach. In grounded theory studies [26], for instance, cycles of data collection and analysis proceed concurrently, with each stage of analysis informing further data collection and further literature review. The following is an example of a study design that set out to identify ways of improving access to care for older people with depression [18,19]. Current evidence shows that a very small proportion of older people with depression receive a diagnosis and an even smaller proportion receives active treatment. People from black and minority ethnic groups are considerably less likely to receive treatment. Against this background, the initial aim was to identify barriers and facilitators to accessing services. A qualitative approach was required to explore the experiences, beliefs and needs of older people with depression from different ethnic groups, in order to understand how older people conceptualize depression and any cultural variations that might be implicated in helpseeking. Topics for the initial interview guide were generated from a review of the literature and the advice of health care professionals from the relevant ethnic minority communities in the area. Aware of the sensitivity of the subject and the potential impact of stigma on participants, a vignette was used to stimulate discussion and to capture the descriptors and

cultural idioms of participants. The vignette described an older person with symptoms typical of depression and was adapted from a version used in a crosscultural study [27]. As there was little empirical evidence to inform the study, an iterative approach to data collection, analysis and further literature review was most appropriate. Purposive selection of participants was guided by an initial sampling frame to ensure that data were included from participants with key characteristics. Interviewing and analysis proceeded concurrently until no new conceptual insights were generated from the analysis. This final stage of analysis/data collection is often referred to as theoretical saturation, particularly in grounded theory. In practical terms, theoretical saturation occurs when the researcher finds similar instances repeatedly. In the example above, there were a number of considerations in selecting the methods of inquiry: .

Depression is a sensitive issue. Would older people be willing to join focus groups to discuss their experiences and needs? How would focus groups be constituted? What would be a natural setting? To test feasibility we conducted one focus group in a local day centre for older people. Although most participants were ready to talk in general terms about local health services and the most appropriate treatment for depression, some expressed a wish to take part in an individual interview; the data generated in the interviews were richer and more relevant to the aims of the study.

.

The stigma of depression is greater in black and minority ethnic groups: the literature suggests this affects disclosure and access to services. How would we recruit participants with depression if

QUALITATIVE RESEARCH METHODS

they do not access services? Who should conduct the interviews? Should it be an interviewer from the same ethnic background? We recruited participants through GPs and local organizations for older people from particular ethnic groups. The interviews were held at their chosen venue and in the language of their choice. In order to encourage discussion in participants who were reluctant to access treatment for depression, the interviewers did not have a clinical background but were specialists in qualitative interviewing with older adults.

7.4.2

Data analysis: preliminary considerations

As illustrated above, the method of analysis should be considered before data collection begins. There are four preliminary criteria to consider: .

Does the literature review include sufficient evidence to inform the topics to be covered in the study? If this is the case then a thematic analysis, based on predetermined themes, is likely to enable the appropriate level of interpretation of the data.

.

Where little is known about the phenomenon in question and the study aims to increase understanding or develop theory then a grounded theory approach [26] to analysis might be appropriate.

.

Does the investigation focus on how the individual makes sense of their lived experience? Will the analysis require a high level of interpretation from the researcher? If the answer to these questions is ‘yes’, Interpretative Phenomenological Analysis (IPA) [28] is likely to be appropriate.

.

Where the aim of collecting qualitative data is to test hypotheses on a large dataset, then the more deductive method of content analysis might be appropriate [29]. This method can be applied to published sources such as newspapers, official documents and visual recordings.

Whichever method is chosen, qualitative analysis must always be systematic and comprehensive, avoid-

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ing selectivity or ‘cherry picking’ from the data to fit the researcher’s preconceptions. The analytic procedure should be flexible enough to allow emerging themes to be included and to modify earlier themes. The process should include comparison of data between and within cases and refining the coding strategy as a result. Seeking out deviant cases is another principle of qualitative analysis. By purposefully looking for data that do not accord with emerging patterns the researcher is better able to refine the developing theory, to delimit its generalizability and to identify areas for further data collection. Rigour in qualitative analysis is maintained by involving other researchers in the coding process and by keeping detailed notes on the process and development of themes.

7.4.3 Data analysis: approaches There are a number of approaches to data analysis, depending on the level of abstraction required. Some studies are essentially descriptive, aiming to identify the range of attitudes towards particular treatments or services. In studies of this type, such as service evaluation, the domains in which individual opinions are sought may be largely predetermined. Analysis is unlikely to proceed beyond the descriptive level since the researchers are not aiming for high levels of interpretation or theory development but to enable service providers to understand the perspectives of the various ‘insiders’. There are also more deductive methods of analysis, such as traditional content analysis, in which predetermined coding categories are applied to the whole dataset. In contrast, Interpretative Phenomenological Analysis [28], as the name suggests, is an explicitly interpretative approach and adopts an idiographic (case-by-case) approach to analysis. The researchers’ theoretical position is therefore central in ‘making sense’ of how the participant understands the phenomenon (e.g. the experience of living with an eating disorder from the perspective of the person with the diagnosis and their supporter). IPA prescribes a number of steps in the process of analysis: empathic reading; critical reflection; making impressionistic

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notes; applying themes to capture the concepts contained in the narrative (e.g. loss, coping); clustering of themes into descriptive categories with shared meanings; producing a summary table of themes supported by original data from each interview. There are three levels of analysis: thematic (descriptive), interpretative and theory building. Reflexivity is particularly important in IPA because of the central position of the researcher in interpreting the data. Thematic analysis, perhaps the most widely used method, is positioned between IPA and content analysis on the descriptive interpretative spectrum. However, it is more important to understand the purpose and procedures of qualitative analysis and to apply them in a systematic way than to adhere to a particular terminology. Grounded theory [26,30] is a theoretical approach to generating higher levels of understanding of social phenomena that are derived from a systematic analysis procedure. There are a number of principles that

7.5

distinguish the processes of grounded theory from basic thematic analysis: .

The precise research problem should emerge from the data; therefore a preliminary review of the literature is not encouraged. This proceeds alongside the iterative (nonlinear) process of theoretical sampling and analysis.

.

Constant comparison within and between cases is central to the analysis process as is negative case analysis. Theoretical memos are kept throughout by the researcher as a detailed record of developing theory.

.

There are three levels of analysis open coding, organizing the codes into more abstract categories and theoretical coding in which the links between the categories are identified. These are expressed as hypotheses or propositions.

MIXED METHODS

Mixed methods are now the standard way of describing studies that combine quantitative and qualitative methods within a single design. In health research, mixed methods are increasingly common. A recent analysis found that mixed method studies formed 30% of projects funded by the UK Department of Health between 2002 and 2004, up from 15% in 1996 [31]. It is not clear how common such approaches are in mental health research, but there are no reasons to think the trend is different from that seen more generally. Leaving aside increasingly redundant philosophical debates about the compatibility of qualitative and quantitative methods, in broad terms three approaches to the combined use of both qualitative and quantitative methods can be identified: (1) quantitative research as senior partner; (2) equal status for both; and (3) qualitative research as senior partner. The first of these is perhaps the most familiar in mainstream medical and health research and derives from the perception of qualitative methods as particularly useful in hypothesis generation. The purpose here is usually to use qualitative methods at the

exploratory or pilot stages of a project to generate or firm-up hypotheses, which are then tested using quantitative methods. Alternatively, qualitative interview data may be used to develop structured questionnaires that can yield quantitative data. Implicit in this approach is the view that scientific rigour and increasing certainty in findings will only come via the subsequent use of quantitative methods, with qualitative methods being only a precursor to the more scientific, quantitative methodologies. The second broad approach resists any ordering of methods into a hierarchy. The researcher, from this point of view, has a range of methodological tools at his/her disposal and simply selects the ones most suited to the task. The final broad approach is that in which qualitative methods are viewed as the primary, most effective, tools. Within this, moreover, it has usually been participant observation that has been proposed as the gold standard of research methods on the basis that it offers ‘the most complete form of sociological datum’ ([32], p. 322). There are a number of ways in which methods can and have been practically combined. As noted above, qualitative methods may be used to develop

QUALITATIVE RESEARCH METHODS

quantitative tools. To take another example, qualitative methods may be used to explain quantitative results epidemiology is often not able to explain why associations arise; qualitative methods have the potential to penetrate this epidemiological black box. A particularly good example of how combining methods can work to capture social processes more fully is given by Pope and Mays [1] in their series on qualitative research in the British Medical Journal. They describe a study by Bloor et al. [33] that set out to investigate differences in the geographic incidence of operations on tonsils and adenoids and local differences in specialists’ clinical practices. To address this issue a two-staged approach was adopted, in which the first step was an epidemiological study of regional variations in operations and the second step was a sociological study, utilizing qualitative

7.6

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methods, of clinical practices aimed at investigating how and why variations observed in the epidemiological stage came about. In this example, qualitative methods are used to illuminate differences observed at a population level: as Pope and Mays [1] note, it is a case of qualitative methods ‘reaching the parts other methods cannot reach’. Methods, then, are chosen according to their strengths. As has already been suggested, quantitative methods are particularly strong in enumerating patterns in, for instance, pathways to care. Qualitative methods, again as suggested above, are more effective in capturing processes and what has been termed the ‘insider perspective’. As Silverman ([34], p. 14) notes, ‘There are no principled reasons to be qualitative or quantitative. It all depends on what you are trying to do.’

CRITICAL APPRAISAL OF QUALITATIVE RESEARCH

Given the variety of approaches outlined in this chapter, the reader needs to be aware of the criteria for judging the empirical quality of qualitative research. There are two principle questions: .

Was the study designed to address the research question and objectives appropriately?

.

Was the study conducted with sufficient rigour to achieve its aims?

The description of the methods and outcome of the study should include the following details:

3. Was the data sufficiently comprehensive in breadth and depth to generate and support interpretation? Was an iterative approach to data collection and analysis used? Can the data be audited from fieldnotes, audio recordings, transcripts? 4. Was there a systematic approach to data analysis, including efforts to identify contradictory data? Was the analysis corroborated by more than one researcher? 5. Do the results of the analysis look credible and do they justify the conclusions?

1. How were participants selected: were they relevant to the research question and was their selection reasoned (purposive/theoretical)? If a convenience sample was used, was this justified?

6. Are the limitations of the study clearly described? What contribution does the study make to our previous knowledge of the area? How do the findings fit with existing theory? If relevant, what are the implications for service development?

2. Were the data collection methods appropriate? What was the rationale for focus group discussion, individual in-depth interviews or participant observation? Who conducted the fieldwork/data collection and has the perspective of the researcher been adequately considered (reflexivity)?

Further guidance on establishing the rigour of qualitative research can be found in Barbour [5], Mays and Pope [6], Kuper et al. [8]. One of the strengths of qualitative research is flexibility: the iterative approach enables the researcher to adapt the design in response to data analysis.

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With this flexibility comes the imperative to justify and describe systematically each step in the research

7.7

process. Validity of findings can only be established through transparency in reporting.

CONCLUSION

Qualitative methods have long been treated with suspicion in health research, particularly in psychiatric research. This is decreasing, and there is now a widespread acceptance that qualitative methods are vital to understanding the social processes that underlie mental health problems, their cultural expression and patterns of help-seeking from, and engagement with, mental health services. As qualitative methods have become more acceptable in health research, so they have become more rigorous and systematic, with clearly explicated procedures for sampling, data collection and analysis. As such, qualitative methods (singly or in combination with other approaches) have become essential tools for more fully understanding and responding to the challenges of mental illness. REFERENCES 1. Pope, C. and Mays, N. (1995) Reaching the parts other methods cannot reach: an introduction to qualitative methods in health and health services research. British Medical Journal, 311, 42 45. 2. Britten, N. (1998) Qualitative research: qualitative interviews in medical research. British Medical Jour nal, 311, 251 253. 3. Jones, J. (1998) Qualitative research: consensus meth ods for medical and health services research. British Medical Journal, 311, 376 380. 4. Keen, J. and Packwood, T. (1995) Qualitative research: case study evaluation. British Medical Journal, 311, 444 446. 5. Barbour, R. S. (2001) Checklists for improving rigour in qualitative research: a case of the tail wagging the dog? British Medical Journal, 322, 1115 1117. 6. Mays, N. and Pope, C. (2000) Assessing quality in qualitative research. British Medical Journal, 320, 50 52. 7. Kuper, A., Reeves, S. and Levinson, W. (2008) An introduction to reading and appraising qualitative re search. British Medical Journal, 337, a288.

8. Kuper, A., Lingard, L. and Levinson, W. (2008) Criti cally appraising qualitative research. British Medical Journal, 337, a1035. 9. Lingard, L., Albert, M. and Levinson, W. (2008) Grounded theory, mixed methods, and action research. British Medical Journal, 337, a567. 10. Hodges, B. D., Kuper, A. and Reeves, S. (2008) Discourse analysis. British Medical Journal, 337, a879. 11. Reeves, S., Albert, M., Kuper, A. and Hodges, B. D. (2008) Why use theories in qualitative research? British Medical Journal, 337, a949. 12. Reeves, S., Kuper, A. and Hodges, B. D. (2008) Qua litative research methodologies: ethnography. British Medical Journal, 337, a1020. 13. Vidich, A. J. and Lyman, S. M. (2000) Qualitative methods: their history in sociology and anthropology, in The Sage Handbook of Qualitative Research, 2nd edn (eds N. K. Denzin and Y. S. Lincoln), Sage, Thousand Oaks, California, pp. 37 84. 14. Brown, C. and Lloyd, K. (2001) Qualitative methods in psychiatric research. Advances in Psychiatric Treat ment, 7, 350 356. 15. Barbour, R. S. (1999) The case for combining qualita tive and quantitative approaches in health services research. Journal of Health Services Research Policy, 4, 39 43. 16. Murphy, E., Dingwall, R., Greatbatch, D. et al. (1998) Qualitative research methods in health technology assessment: a review of the literature. Health Technol ogy Assessment, 2 (16). 17. Denzin, N. K. and Lincoln, Y. S. (2000) The discipline and practice of qualitative research, in The Sage Hand book of Qualitative Research, 2nd edn (eds N. K. Denzin and Y. S. Lincoln), Sage, Thousand Oaks, California, pp. 1 28. 18. Lawrence, V., Murray, J., Banerjee, S. et al. (2006) Concepts and causation of depression: a cross cultural study of the beliefs of older adults. The Gerontologist, 46 (1), 23 32. 19. Lawrence, V., Banerjee, S., Bhugra, D. et al. (2006) Coping with depression in later life: a qualitative study

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20.

21.

22.

23.

24.

25.

26.

of help seeking in three ethnic groups. Psychological Medicine, 36, 1375 1383. Murray, J., Banerjee, S., Byng, R. et al. (2006) Primary care professionals’ perceptions of depression in older people: a qualitative study. Social Science and Medi cine, 63, 1363 1373. Kamberelis, G. and Dimitriadis, G. (2005) Focus groups: strategic articulations of pedagogy, politics and inquiry, in The Sage Handbook of Qualitative Research (eds N. K. Denzin and Y. S. Lincoln), Sage, Thousand Oaks, California. Prior, L., Wood, F., Lewis, G. and Pill, R. (2003) Stigma revisited, disclosure of emotional problems in primary care consultations in Wales. Social Science and Med icine, 56, 2191 2200. Quirk, A., Lelliot, P. and Seale, C. (2006) The perme able institution: an ethnographic study of three acute psychiatric wards in London. Social Science and Med icine, 63, 2105 2117. Lee, D. T., Kleinman, J. and Kleinman, A. (2007) Rethinking depression: an ethnographic study of the experiences of depression among Chinese. Harvard Review of Psychiatry, 15 (1), 1 8. Skultans, V. (2006) Psychiatry through the ethno graphic lens. International Journal of Social Psychia try, 52 (1), 78 83. Glaser, B. G. and Strauss, A. L. (1967) The Discovery of Grounded Theory: Strategies for Qualitative Research, Aldine, Chicago, Illinois.

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27. Bhugra, D., Baldwin, D. and Desai, M. (1997) Focus groups: implications for primary and cross cultural psychiatry. Primary Care Psychiatry, 3, 45 50. 28. Smith, J. A. (1996) Beyond the divide between cogni tion and discourse: using interpretative phenomenolo gical analysis in health psychology. Psychology and Health, 11, 261 271. 29. Weber, R. P. (1996) Basic Content Analysis, 2nd edn, Sage, Newbury Park. 30. Charmaz, K. (1997) Grounded theory, in Rethinking Methods in Psychology (ed. J. A. Smith), Sage, London, pp. 27 49. 31. O’Cathain, A., Murphy, E. and Nicholl, J. (2007) Why, and how, mixed methods research is undertaken in health services research in England: a mixed methods study. BMC Health Services Research, 7, 85. 32. Becker, H. S. and Geer, B. (1969) Participant observa tion: the analysis of qualitative data, in Issues in Participant Observation: A Text and Reader (eds G. McCall and J. Simmons), Addison Wesley, Reading, Massachusetts. 33. Bloor, M. J., Venters, G. A. and Samphier, M. L. (1976) Geographical variation in the incidence of operations on the tonsils and adenoids: an epidemiological and sociological investigation. Journal of Laryngology and Otology, 92, 791 801, 883 895. 34. Silverman, D. (1997) The logics of qualitative research, in Context and Method in Qualitative Research (eds G. Miller and R. Dingwall), Sage, London.

Part Two Components of the social world

8 The social epidemiology of mental disorder Ronald C. Kessler,1 Philip S. Wang2 and Hans-Ulrich Wittchen3 1 2 3

Department of Health Care Policy, Harvard Medical School, Boston, Massachusetts, USA Division of Services and Intervention Research, National Institute of Mental Health, Bethesda, Maryland, USA Max Planck Institute for Psychiatry, Mu€ nchen, Germany

This chapter reviews the epidemiological literature on the prevalence and societal costs of mental disorders. Interest in the costs of illness not only direct treatment costs but the human costs as well has increased dramatically over the past decade among health policy analysts as part of the larger movement to rationalize the allocation of treatment resources and maximize benefit in relation to cost. Much of the current interest in mental disorders among health policy makers is based on the fact that these disorders have consistently been found in cost-ofillness studies to be among the most costly health

8.1

problems in the population (www.int/topics/global burden of disease/en). A number of factors account for these results and have important implications for the design of treatment programmes for mental disorders: that mental disorders are commonly occurring, often begin at an early age, often are quite persistent throughout the life course and often have substantial adverse effects on functioning. This chapter reviews the epidemiological evidence regarding these points, with a special emphasis on data from the recently completed World Health Organization (WHO) World Mental Health (WMH) Surveys [1].

METHODS OF ASSESSING MENTAL DISORDERS IN EPIDEMIOLOGICAL SURVEYS

Information about the epidemiology of mental disorders has proliferated over the past two decades. The reason for this can be traced to modifications in the criteria for diagnoses of mental disorders in the DSM system, beginning with DSM-III, that made it much easier than previously to operationalize diagnostic criteria. Fully structured research diagnostic interviews appropriate for use by trained lay interviewers were subsequently developed for this purpose. The first of these interviews was the Diagnostic Interview

Schedule (DIS) [2], an instrument developed for use in a large community epidemiological survey in the US [3] and subsequently used in a number of similar surveys in other parts of the world [4]. The WHO subsequently developed the Composite International Diagnostic Interview (CIDI) [5], which was based on the DIS, in order to have an instrument that could be used to generate diagnoses according to the definitions of both the DSM and ICD systems and that could be used reliably in many different cultures

Principles of Social Psychiatry, second edition Edited by Craig Morgan and Dinesh Bhugra Ó 2010 John Wiley & Sons, Ltd.

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throughout the world [6]. As general population surveys were carried out in a number of countries with the first version of the CIDI, the WHO developed a crossnational research consortium to carry out systematic comparisons of CIDI survey results [7]. Results based on these comparisons led to the expansion and refinement of the CIDI and to a new generation of crossnational CIDI surveys in the WHO World Mental Health (WMH) Survey Initiative. The latter is an initiative aimed at carrying out and analysing the results of parallel CIDI surveys in countries throughout the world. Twenty-eight countries have completed WMH surveys at the time this chapter is being written and close to 200 country-specific reports have been published from these surveys (www.hcp.med.harvard. edu/wmh). Although only a small number of crossnational comparative WMH reports have been published so far [8 10], the first volume in a new series of WMH books was recently published that provides very useful comparative data on disorder prevalence and treatment [1]. We draw heavily on these data in this chapter. As the CIDI has become so predominant in psychiatric epidemiological surveys, a few words need to be said about the extent to which diagnoses based on the CIDI are consistent with diagnoses based on independent clinician-administered research diagnostic interviews. Clinical reappraisal studies of the original version of the CIDI were quite mixed in this regard, some showing concordance of anxiety and mood disorder diagnoses with clinical diagnoses to be low and others moderate to good. Concordance has been considerably better for more recent versions of the CIDI in clinical reappraisal studies carried out in Western countries [11]. Both individual-level diagnostic concordance and consistency of the CIDI anxiety disorder prevalence estimates with prevalence estimates based on clinical interviews have been good in these studies. Much less is known about the clinical relevance of diagnoses based on fully structured diagnostic interviews in developing countries. CIDI prevalence estimates in epidemiological surveys in some developing countries seem implausibly low, raising concerns either that research diagnostic interviews are not valid in countries where there is no tradition of public opinion research or that the Western diagnostic con-

structs embedded in existing interviews have low relevance to some developing countries. This is not a problem unique to the CIDI. Prevalence estimates based on other fully structured diagnostic interviews have similarly implausible values. Methodological studies are underway to investigate these problems and to determine if modifications can be made to fully structured interviews and/or to the recruitment and implementation procedures used in community epidemiological surveys to generate more plausible prevalence estimates. Caution is needed in interpreting the results of epidemiological studies carried out using the CIDI or other fully structured interviews in developing countries until these methodological investigations have resolved these problems. Prior to that time, our best hope of obtaining accurate data on the population prevalence of mental disorders in developing countries is to use a two-stage screening approach. In this approach, a representative sample of community residents is administered a short culturally sensitive battery of screening questions designed to determine which people might have a mental disorder and then the screened positives plus a representative subsample of the screened negatives are administered a rigorous clinician-administered research diagnostic interview. Two-phase screening studies of this sort, although rare, have been carried out successfully in developing countries [12]. CIDI surveys could be carried out using this same approach, with the CIDI used as the first phase and a culturally sensitive semi-structured clinical interview used as the second phase. When the CIDI symptom-level data are strongly predictive of the clinical diagnoses, predicted probabilities of these diagnoses can be made for each CIDI respondent and these predicted clinical diagnoses can be used as the outcomes in substantive analyses [13]. The use of country-specific calibration rules could allow valid cross-national comparisons to be made even when the validity of the CIDI varies across countries. This approach has not been used up to now, however, because existing CIDI surveys have not included a sufficiently large number of secondphase clinical reappraisal interviews to make it possible to implement this approach. It would be extremely valuable for future CIDI surveys to include a clinical reappraisal phase that would allow this type of calibration analysis to be carried out.

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93

PREVALENCE OF MENTAL DISORDERS

With these cautions as a backdrop, we consider the prevalence estimates of the mental disorders reported in published community epidemiological surveys. We focus on anxiety, mood and behavioural disorders, as these are the disorders that have been most commonly studied in epidemiological surveys. We also say a few words about nonaffective psychoses. Other disorders that have been the focus of epidemiological study, such as cognitive disorders, somatoform disorders, sleep disorders and personality disorders, are not discussed. Several recent literature reviews have presented detailed summary tables of prevalence estimates for individual disorders in the domains we review across a number of epidemiological surveys [14 16]. A number of patterns are consistent in these reviews. One is that anxiety disorders have consistently been found to be the most prevalent class of mental disorders in the general population. The estimated lifetime prevalence of any anxiety disorder averages approximately 16% and the estimated 12-month prevalence of any anxiety disorder approximately 11% in the surveys carried out in developed countries. The estimated lifetime and 12-month prevalence of any mood disorder, in comparison, average approximately 12 and 6%, respectively. A smaller number of surveys also study behavioural disorders, such as attention deficit/hyperactivity disorder (ADHD), conduct disorder (CD), oppositional-defiant disorder (ODD) and intermittent explosive disorder (IED) [17,18]. The estimated lifetime and 12-month prevalence of these disorders range approximately between 5 and 10%. There is wide variation around these averages. This can be seen clearly by considering, as an example, the range of lifetime and 12-month prevalence estimates of anxiety disorders in the WMH surveys. The median lifetime prevalence estimate is somewhat higher for anxiety disorders than in the larger literature 14.3% but the interquartile range (QR; 25th 75th percentiles) is very wide, between 9.9 and 16.7%. One-fourth of estimates are below 9.9%, almost all of them in developing countries,

including implausibly low estimates like 4.8% in the People’s Republic of China and 5.2% in Israel. Another one-fourth of estimates are higher than 16.7%, most of them in developed countries like France, New Zealand and the US. It is possible that this crossnational variation is real. Another possibility, though, is that this variation reflects differences in the accuracy of diagnostic assessments in the surveys carried out in the different countries. Even when the same interview schedule and field procedures are used across countries, as in the WMH surveys, differences remain in the severity implied by purportedly similar words translated into different languages, in the rigour with which the surveys were implemented and in the willingness of community residents to give honest reports about their emotions to interviewers. Although some community epidemiological surveys attempt to estimate the prevalence of schizophrenia and other nonaffective psychoses (NAPs), these estimates are generally recognized as inaccurate due to the high false positive rate of screening questions concerning delusions and the low response rate in such surveys of people with a known history of NAP [19]. Clinical reappraisal studies show that only a minority of the respondents classified by fully structured interviews as having NAP are confirmed by blinded clinician-administered assessments [20]. The CIDI’s more comprehensive approach is needed to estimate the prevalence of NAP, as illustrated in a recent national survey in Finland that began with the CIDI as a first-phase screen for psychosis, but also used a number of other first-phase screens that included self-reports, medical examinations and national registers [21]. A second-phase clinicianadministered interview was then used to make diagnoses. The lifetime prevalence of schizophrenia was estimated to be 0.9%. This estimate is consistent with the 0.7% estimate obtained in a meta-analysis that knit together data from surveys and registries throughout the world to estimate the lifetime prevalence of schizophrenia [22]. The lifetime prevalence of any NAP, in comparison, was estimated to be 2.9%. These estimates include survey nonrespondents who were

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known from registry data to have a history of NAP. Roughly 15% of the detected cases were survey nonrespondents of this sort. In addition, consistent with previous research, the CIDI failed to detect the majority of the clinician-diagnosed cases who completed both interviews, confirming the low validity of the CIDI in assessing NAP. Focusing on individual disorders, specific phobia is generally found to be the most prevalent disorder in community epidemiological surveys in developed countries, with lifetime prevalence estimates usually in the 6 12% range and 12-month prevalence estimates in the 4 8% range [23]. Major depressive disorder (MDD) is generally found to be the next most prevalent lifetime mood disorder, with lifetime prevalence estimates usually in the 4 10% range and 12-month prevalence estimates in the 3 6% range [24]. Social phobia is generally found to be the next most prevalent anxiety or mood disorder, with prevalence estimates sometimes approaching those of MDD [25]. At the other extreme, bipolar I disorder (BPD-I) is usually found to be the least common anxiety or mood disorder, with lifetime prevalence estimates averaging approximately 1% and 12-month prevalence averaging 0.6% [26]. Obsessive compulsive disorder (OCD) is usually found to be the least common anxiety disorder, with lifetime prevalence typically less than 2% and 12-month prevalence of approximately 1% [27]. Controversy exists regarding the appropriate diagnostic thresholds for some mental disorders, such as post-traumatic stress disorder (PTSD) [28] and generalized anxiety disorder (GAD) [29]. In both these cases, good evidence exists from epidemiological surveys that one or more particular diagnostic criteria define a much more restrictive set of cases than the other criteria, calling into question the wisdom of including the restrictive criteria. In the case of GAD, for example, the original diagnostic criteria in DSMIII, which required a minimum duration of one month, was changed in the DSM-III-R and DSM-IV to six months in an effort to reduce the high comorbidity found in clinical samples (but not, as it was subsequently discovered, in community samples) between GAD and MDD. The ICD-10 criteria split this difference by requiring a minimum duration of ‘several’ months. Considerable epidemiological research has

now shown, however, that the original one-month requirement makes more sense from an epidemiological perspective than the more strict duration requirements in that the predictors of lifetime GAD (e.g. childhood adversity, family history of anxiety disorder, primary comorbid disorders) and the clinical correlates of GAD (e.g. age of onset, course, role impairment, suicidality) are all very similar for cases with one-month durations versus six-month durations. Many of the people with episodes of GAD that do not last as long as six months report having many episodes in their lifetimes, suggesting that this is a chronic recurrent episodic disorder characterized by extreme stress reactivity that triggers episodes of excessive worry that remit (in less than six months) and then recur repeatedly over time. The six-month duration requirement results in these people failing to be defined as clinically meaningful cases. If these diagnostic controversies were resolved in the direction of broadening the criteria for PTSD and GAD, prevalence estimates would increase substantially: as much as 50% in the case of PTSD and as much as 150% in the case of GAD. A related issue is that considerable evidence exists for clinically significant sub threshold manifestations of many mental disorders that are much more prevalent than the disorders themselves. Unlike the situations with PTSD and GAD, the more general issue is that many mental disorders appear to be extremes on underlying dimensions rather than categorical manifestations that are qualitatively distinct from these distributions [30]. For example, even though OCD is almost always estimated to be fairly rare in general population surveys, subthreshold manifestations of OCD, some of them appearing to be clinically significant, are fairly common [31]. The same is true for bipolar spectrum disorder, where even though the lifetime prevalence of BP-I is estimated to be only about 0.8 1.5%, the combined prevalence of BP-I, BP-II and clinically significant subthreshold BPD is likely in the range 4 6% [32]. However, as community epidemiological surveys have for the most part not explored these subthreshold manifestations systematically, we do not currently have good estimates of the proportion of the population that would meet criteria for one or more anxiety and mood spectrum disorders.

THE SOCIAL EPIDEMIOLOGY OF MENTAL DISORDER

8.3

95

AGE-OF-ONSET DISTRIBUTIONS

While the results reviewed in the last section document that mental disorders are highly prevalent, it is also important to examine age-of-onset (AOO) distributions (the distribution, across people with a lifetime history of a disorder, of when the disorder first occurred) for three reasons. The first reason is that commonly occurring lifetime disorders might have much less effect on the overall lives of the people who experience them if they only occur late in life. All else equal, earlier-onset disorders are more burdensome unless they not only begin but also remit early in life. Second, and related, AOO information allows us to distinguish between lifetime prevalence (the proportion of the population who had a disorder at some time in their life up to their age at interview) and projected lifetime risk (the estimated proportion of the population who will have the disorder by the end of their life). The estimates reported above were for lifetime prevalence rather than for lifetime risk. Lifetime risk cannot be estimated directly from community surveys because respondents differ in age and, therefore, number of years at risk. Projections of estimated future risk can be made from AOO distributions, however, using standard statistical methods. Third, an understanding of AOO is important for targeting research on prevention of mental disorders, early intervention with prodromal or incipient mental disorders, and primary prevention of secondary disorders. In the absence of AOO information, we would have no way of knowing the appropriate age groups to target in these interventions. Although AOO is routinely assessed retrospectively in community surveys, only a few reports have been published over the years that describe AOO distributions based on these data. These studies are reviewed elsewhere [33]. Recently, though, comprehensive AOO data were published from the WMH surveys [17]. These data are remarkably consistent across countries as well as consistent with the AOO data reported in previous studies in showing distinct AOO patterns for the different mental disorders. Some anxiety disorders, most notably the phobias and

separation anxiety disorder (SAD) have very early AOO distributions. In the WMH data, these disorders had a median AOO in the range 7 14 and an IQR between 4 and 20 years. Country-specific AOO curves are strikingly consistent. No significant associations were observed between the position of the curve and either prevalence of the disorders in the country or the county’s level of economic development. Behavioural disorders also have early AOO distributions, with the vast majority of onsets in childhood or adolescence. The other common anxiety disorders (panic disorder, generalized anxiety disorder, and post-traumatic stress disorder) have considerably later AOO distributions, with medians in the range 25 53. As with earlier-onset anxiety disorders, no significant associations were observed between the position of the curve and either prevalence of the disorders in the country or the country’s level of economic development. The mood disorder AOO distributions in the WMH surveys are quite similar to those for the later-onset anxiety disorders, with consistently low prevalence until the early teens, followed by a roughly linear increase through late middle age and a declining increase thereafter. The median AOO of mood disorders has a very wide range across countries (ages 25 45), but again without any consistent association between the shape of the curve and either prevalence of the disorders in the country or the country’s level of economic development. Although less data are available on the AOO distributions of NAP, available evidence suggests that median AOO is in the range between the late teens and mid-twenties. A note of caution is needed in interpreting all these AOO data, as they are largely based on retrospective lifetime recall and thus are subject to recall bias as well as to selection bias. Indeed, somewhat earlier AOO estimates are generally found in prospective longitudinal studies rather than in the analysis of retrospective AOO reports [34]. Nonetheless, these prospective data are for the most part consistent with the AOO distributions seen in the retrospective WMH data.

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We noted above that AOO distributions can be used to generate projections of lifetime risk: the proportion of the population that will experience a given disorder at some time in their lives. These estimates will necessarily be higher than estimates of lifetime prevalence, as they include not only all lifetime-to-date cases but also some number of anticipated future onsets. The issue of interest is the size of this projected number of future onsets. Estimates of projected lifetime risk of any DSM-IV disorder in the WMH data are roughly one-third higher than the estimates of lifetime prevalence-to-date [17]. This means that 3 4 people in the populations of these countries are likely to develop a first mental disorder at some time in the future for every ten people who already had a disorder. The highest risk-to-prevalence ratios (57 69%) were found in countries exposed to sectarian violence, such as Israel, Nigeria and South Africa. Excluding these three, no strong difference in risk-to-prevalence ratios was found for less developed countries versus developed countries. Not surprisingly, the highest

8.4

class-specific proportional increase in projected lifetime risk versus prevalence was associated with mood disorders. This is because of the comparatively late onset of mood disorders compared with most other mental disorders. The proportional increases were comparable for GAD and PTSD, but very low for other anxiety disorders, again reflecting the typically later ages of onset of the former than the latter. It is noteworthy that most fear-related anxiety disorders and most impulsive behavioural disorders have considerably earlier AOO distributions than mood disorders or NAP. This early onset, coupled with the fact that significant associations exist between these early-onset disorders and the subsequent first onset of other mental and substance use disorders, has led some commentators to suggest that aggressive treatment of child adolescent anxiety and behavioural disorders might be effective in preventing the onset of the secondary mental and substance disorders that are associated with the vast majority of serious mental illness [35].

COURSE OF ILLNESS

The course of illness, like AOO, has been much less well studied in epidemiological surveys than has prevalence. Indeed, few direct questions about the course of illness were included in most community epidemiological surveys of mental disorders prior to the WMH surveys. However, the fact that mental disorders are seen as often being quite persistent adds to the judgement that they have such adverse effects. Objective assessment of this persistence can be obtained by comparing estimates of recent prevalence (variously reported for the year, six months or one month before interview) with estimates of lifetime prevalence. The 12-month to lifetime prevalence ratios for anxiety and mood disorders are typically in the range 0.4 0.6, with the ratio always somewhat higher for anxiety disorders than mood disorders. These ratios are lower for behavioural disorders and NAP. In the case of behavioural disorders, this is because these disorders often remit in adolescence or early adulthood. In the case of NAP, it

is because as many as one-third of lifetime cases have only a single episode and another one-third have episodes that recur only rarely. More detailed analyses of these ratios could be carried out by breaking them down separately for subsamples defined by age at interview or by time since first onset, but we are unaware of any published research that has reported such analyses. Our own preliminary analyses of this sort in the WMH data suggest, however, that although 12-month to lifetime prevalence ratios for most mental disorders decline with increasing age, this decline is fairly modest after mid-life, suggesting that mental disorders are often quite persistent over the entire life course. The few long-term longitudinal studies that exist in representative samples yield results consistent with this conclusion and suggest that this persistence is due to a recurrent intermittent course that often features waxing and waning of episodes of different comorbid disorders [36,37].

THE SOCIAL EPIDEMIOLOGY OF MENTAL DISORDER

8.5

COMORBIDITY

Comorbidity among mental disorders is quite common, with up to half of people with any lifetime disorder meeting criteria for two or more such disorders [38]. Factor analytic studies of diagnostic comorbidity consistently document separate internalizing and externalizing factors in which anxiety and mood disorders have high factor loadings on the internalizing dimension and behavioural and substance disorders have high loadings on the externalizing factor [39]. The internalizing dimension, furthermore, sometimes is found to have secondary dimensions that distinguish between fear disorders (panic, phobia) and distress disorders (depression, dysthymia, GAD) [40]. These results have recently been used to call into question the codification of anxiety disorders as a

8.6

97

distinct class of disorders in the DSM and ICD systems and to suggest that a more useful organizing scheme in the upcoming DSM-V and ICD-11 revisions would be one that distinguished between fear disorders and distress disorders, with the latter including not only GAD and possibly PTSD but also unipolar depression and dysthymia [40]. The argument for a class of fear disorders has some support in neurobiological research based on investigation of fear brain circuitry [41]. The possibility also exists that future research might lead to OCD being distinguished from either fear disorders or distress disorders as part of a spectrum of impulse-control disorders based both on evidence of differential comorbidity and differences in brain circuitry [42].

THE SOCIETAL COSTS OF MENTAL DISORDERS

Early-onset mental disorders are significant predictors of the subsequent onset and persistence of other mental and substance use disorders as well as of a wide range of physical disorders [43,44]. It is important to note that these predictive associations are part of a larger pattern of associations that has been documented between early-onset mental disorders and a much wider array of adverse life course outcomes that might be conceptualized as societal costs of these disorders, including reduced educational attainment, early marriage, marital instability, and low occupational and financial status [45 47]. It is unclear if these associations are causal, i.e. if interventions to treat early-onset mental disorders would prevent the subsequent onset of the adverse outcomes with which they are associated. As a result, it is not possible to state unequivocally that these outcomes are consequences of mental disorders. It would be very valuable, however, from a public health perspective to have long-term evidence to evaluate this issue based on experimental treatment effectiveness studies. A considerable amount of research has been carried out to quantify the magnitude of the short-term societal costs of mental disorders in terms of health-care

expenditures, impaired functioning and reduced longevity, but most of this work has been done in the US [48,49]. The magnitude of the cost estimates in these studies is staggering. For example, Greenberg et al. [49] estimated that the annual total societal costs of active anxiety disorders in the US over the decade of the 1990s exceeded $42 billion. This estimate excludes the indirect costs of early-onset anxiety disorders through adverse life course outcomes (e.g. the documented effects of child adolescent anxiety disorders in predicting low educational attainment and consequent long-term effects on lower income) and through increased risk of other disorders (e.g. anxiety disorders predicting the subsequent onset of cardiovascular disorder). Although comparable studies of the societal costs of mental disorders have been carried out in few other countries, a recent study of the comparative impairments in role functioning caused by mental disorders and commonly occurring chronic physical disorders in the WMH surveys documented that common mental disorders have substantial adverse effects on functioning in many countries around the world [9]. This analysis made use of the fact that a set of

98

COMPONENTS OF THE SOCIAL WORLD

commonly occurring physical disorders were assessed in the WMH surveys with a standard chronic disorders checklist. Respondents with the ten most commonly reported such disorders were asked to report the extent to which each such disorder interfered with their ability to carry out their daily activities in both productive roles (i.e. job, school, housework) and social roles (i.e. social and personal life). The same questions about disorder-specific role impairments were also asked of respondents with each of the mental disorders assessed in the surveys, the ten most commonly occurring of which were compared to the ten most common physical disorders. Of the 100 logically possible pairwise disorderspecific mental physical comparisons, mean impairment ratings were higher for the mental than physical disorder in 91 comparisons in developed and also for

8.7

91 comparisons in developing countries. Nearly all of these higher mental-than-physical impairment ratings were statistically significant at the 0.05 level and held in within-person comparisons (i.e. comparing the reported impairments associated with a particular mental physical disorder pair in the subsample of respondents who had both disorders). Comparable results were obtained for severe disability ratings. Furthermore, a similar pattern held when treated physical disorders were compared with all (i.e. treated or not) mental disorders to address the concern that the more superficial assessment of physical than mental disorders might have led to the inclusion of subthreshold cases of physical disorders that might have low disability. Mental disorders were found in the same analyses to be associated with more days out of role than physical disorders.

TREATMENT OF MENTAL DISORDERS

Although a detailed analysis of epidemiological data on the treatment of mental disorders is beyond the scope of this chapter, we briefly note that epidemiological studies consistently find that only a minority of people with 12-month mental disorders received treatment for these disorders within the year of interview, even in developed countries [10]. The situation is, as one might guess, dramatically worse in developing countries, where only a small minority of people with serious mental disorders receive treatment [50]. Rationality in the allocation of treatment resources is indicated by the fact that both the probability of receiving treatment and, among patients, the intensity of treatment are strongly related to seriousness of illness. However, adequacy of treatment, as indicated by concordance of treatment (in terms of number of visits and types of medication used) with published treatment guidelines, is low even for serious cases in treatment in developed countries [51]. Given the enormous societal costs of mental disorders, a question can be raised whether expansion of detection, treatment and treatment quality improvement initiatives might be able to reduce the adverse societal effects of mental disorders to an extent that

makes treatment cost-effective. Experimental epidemiological studies are needed to answer this question. A study of this sort focused on screening and treating depression among working people was carried out in the US in conjunction with the US WMH survey [52]. The intervention group was found to have significantly higher job retention and hours worked than controls at both six and twelve months after the intervention. The financial benefits of these intervention effects (in terms of hiring and training costs, disability payment and salaries paid for sickness absence days) were substantially higher than the costs of treatment, documenting that the intervention was a human capital investment for employers. Replications of this intervention experiment are currently underway in other WMH countries, including Australia and Japan. Extensions of the intervention guided by WMH results documenting significant workplace effects of bipolar depression and adult ADHD are also underway. Ongoing analyses of the WMH data are also being used to search for other intervention targets that can be used to evaluate the effects of treatment in reducing the burdens associated with mental disorders.

THE SOCIAL EPIDEMIOLOGY OF MENTAL DISORDER

8.8

99

CONCLUSIONS

The epidemiological results reviewed here document that mental disorders are commonly occurring, often have an early age of onset and often are associated with significant adverse societal costs. The important public health question raised by these results is whether these societal costs can be reversed with best-practices treatment. The preliminary results reported in the last paragraph argue much more persuasively than the naturalistic survey findings that mental disorders are actual causes rather than merely correlates of impaired role functioning. Based on these results, it appears that mental disorders are not only common but also consequential from a societal perspective throughout the world. Yet, as noted in the last section, only a minority of people with mental

disorders receives treatment in most countries and even fewer receive high-quality treatment. This situation has to change. A good argument could be made based on data from controlled studies of treatment effectiveness that an expansion of treatment would be a human capital investment opportunity from a societal perspective as well as from an employer perspective. Further epidemiological studies are needed to refine naturalistic analyses of the adverse effects of mental disorders in an effort to target experimental interventions that can demonstrate the value of expanded treatment to address the enormous global burden of mental disorders, with a special emphasis aimed at increasing the scant data that exist on this issue in the developing world.

ACKNOWLEDGEMENTS Preparation of this chapter was supported, in part, by the following grants from the US Public Health Service: U01MH060220, R01DA012058, R01MH070884 and R01DA016558; and by Robert Wood Johnson Foundation Grant 044780. Portions of the chapter appeared previously in Kessler, R. C., Aguilar-Gaxiola, S., Alonso, J., Chatterji, S., Lee, ¨ st€ S. and U un, T. B. (2009) The WHO World Mental Health (WMH) surveys, Die Psychiatrie, 6, 5 9. Permission to use the material has been given by Schattauer GmbH, Stuttgart, Germany. The views and opinions expressed in this report are those of the authors and should not be construed to represent the views of any of the sponsoring organizations, agencies or US Government.

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5.

6.

REFERENCES 7. ¨ st€un, T. B. (eds) (2008) The WHO 1. Kessler, R. C. and U World Mental Health Surveys: Global Perspectives on the Epidemiology of Mental Disorders, Cambridge University Press, New York. 2. Robins, L. N., Helzer, J. E., Croughan, J. L. et al. (1981) National Institute of Mental Health Diagnostic

8.

Interview Schedule: its history, characteristics and validity. Archives of General Psychiatry, 38, 381 389. Robins, L. N. and Regier, D. A. (eds) (1991) Psychiatric Disorders in America: The Epidemiologic Catchment Area Study, The Free Press, New York. Horwath, E. and Weissman, M. M. (2000) The epidemiology and cross national presentation of obsessive compulsive disorder. Psychiatric Clinics of North America, 23, 493 507. Robins, L. N., Wing, J., Wittchen, H. U. et al. (1988) The composite international diagnostic interview. An epidemiologic instrument suitable for use in conjunction with different diagnostic systems and in different cultures. Archives of General Psychiatry, 45, 1069 1077. Wittchen, H. U. (1994) Reliability and validity studies of the WHO Composite International Diagnostic Interview (CIDI): a critical review. Journal of Psychiatric Research, 28, 57 84. WHO International Consortium in Psychiatric Epidemiology (2000) Cross national comparisons of the prevalences and correlates of mental disorders. Bulletin of the World Health Organization, 78, 413 426. Nock, M. K., Borges, G., Bromet, E. J. et al. (2008) Cross national prevalence and risk factors for suicidal

100

9.

10.

11.

12.

13.

14.

15.

16.

17.

18.

COMPONENTS OF THE SOCIAL WORLD

ideation, plans and attempts. British Journal of Psychiatry, 192, 98 105. Ormel, J., Petukhova, M., Chatterji, S. et al. (2008) Disability and treatment of specific mental and physical disorders across the world. British Journal of Psychiatry, 192, 368 375. Wang, P. S., Aguilar Gaxiola, S., Alonso, J. et al. (2007) Use of mental health services for anxiety, mood, and substance disorders in 17 countries in the WHO World Mental Health surveys. Lancet, 370, 841 850. Haro, J. M., Arbabzadeh Bouchez, S., Brugha, T. S. et al. (2006) Concordance of the Composite International Diagnostic Interview version 3.0 (CIDI 3.0) with standardised clinical assessments in the WHO World Mental Health surveys. International Journal of Methods in Psychiatric Research, 15, 167 180. Silove, D., Bateman, C. R., Brooks, R. T. et al. (2008) Estimating clinically relevant mental disorders in a rural and an urban setting in postconflict Timor Leste. Archives of General Psychiatry, 65, 1205 1212. Kessler, R. C., Abelson, J., Demler, O. et al. (2004) Clinical calibration of DSM IV diagnoses in the World Mental Health (WMH) version of the World Health Organization (WHO) Composite International Diagnostic Interview (WMHCIDI). International Journal of Methods in Psychiatric Research, 13, 122 139. Somers, J. M., Goldner, E. M., Waraich, P. et al. (2006) Prevalence and incidence studies of anxiety disorders: a systematic review of the literature. Canadian Journal of Psychiatry, 51, 100 113. Waraich, P., Goldner, E. M., Somers, J. M. et al. (2004) Prevalence and incidence studies of mood disorders: a systematic review of the literature. Canadian Journal of Psychiatry, 49, 124 138. Wittchen, H. U. and Jacobi, F. (2005) Size and burden of mental disorders in Europe a critical review and appraisal of 27 studies. European Neuropsychopharmacology, 15, 357 376. Kessler, R. C., Aguilar Gaxiola, S., Alonso, J. et al. (2008) Lifetime prevalence and age of onset distributions of mental disorders in the World Mental Health Survey Initiative, in The WHO World Mental Health Surveys: Global Perspectives on the Epidemiology of Mental Disorders (eds R. C. Kessler ¨ st€un), Cambridge University Press, New and T. B. U York, pp. 511 521. Kessler, R. C., Aguilar Gaxiola, S., Alonso, J. et al. (2008) Prevalence and severity of mental disorders in

the WMH Surveys, in The WHO World Mental Health Surveys: Global Perspectives on the Epidemiology of ¨ st€ Mental Disorders (eds R. C. Kessler and T. B. U un), Cambridge University Press, New York. 19. Saha, S., Chant, D. and McGrath, J. (2008) Meta analyses of the incidence and prevalence of schizophrenia: conceptual and methodological issues. International Journal of Methods in Psychiatric Research, 17, 55 61. 20. Kessler, R. C., Birnbaum, H., Demler, O. et al. (2005) The prevalence and correlates of nonaffective psychosis in the National Comorbidity Survey Replication (NCS R). Biological Psychiatry, 58, 668 676. 21. Perala, J., Suvisaari, J., Saarni, S. I. et al. (2007) Lifetime prevalence of psychotic and bipolar I disorders in a general population. Archives of General Psychiatry, 64, 19 28. 22. Saha, S., Chant, D., Welham, J. et al. (2005) A systematic review of the prevalence of schizophrenia. PLoS Medicine, 2, e141. 23. Silverman, W. K. and Moreno, J. (2005) Specific phobia. Child and Adolescent Psychiatric Clinics of North America, 14, 819 843, ix x. 24. Judd, L. L. and Akiskal, H. S. (2000) Delineating the longitudinal structure of depressive illness: beyond clinical subtypes and duration thresholds. Pharmacopsychiatry, 33, 3 7. 25. Furmark, T. (2002) Social phobia: overview of community surveys. Acta Psychiatrica Scandinavica, 105, 84 93. 26. Benazzi, F. (2007) Bipolar II disorder: epidemiology, diagnosis and management. CNS Drugs, 21, 727 740. 27. Fontenelle, L. F., Mendlowicz, M. V. and Versiani, M. (2006) The descriptive epidemiology of obsessive compulsive disorder. Progress in Neuropsychophar macology and Biological Psychiatry, 30, 327 337. 28. Mylle, J. and Maes, M. (2004) Partial posttraumatic stress disorder revisited. Journal of Affective Disorders, 78, 37 48. 29. Ruscio, A. M., Chiu, W. T., Roy Byrne, P. et al. (2007) Broadening the definition of generalised anxiety disorder: effects on prevalence and associations with other disorders in the National Comorbidity Survey Replication. Journal of Anxiety Disorders, 21, 662 676. 30. Brown, T. A. and Barlow, D. H. (2005) Dimensional versus categorical classification of mental disorders in the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders and beyond: comment

THE SOCIAL EPIDEMIOLOGY OF MENTAL DISORDER

31.

32.

33.

34.

35.

36.

37.

38.

39.

40.

41.

on the special section. Journal of Abnormal Psychology, 114, 551 556. Matsunaga, H. and Seedat, S. (2007) Obsessive compulsive spectrum disorders: cross national and ethnic issues. CNS Spectrums, 12, 392 400. Skeppar, P. and Adolfsson, R. (2006) Bipolar II and the bipolar spectrum. Nordic Journal of Psychiatry, 60, 7 26. Kessler, R. C., Amminger, G. P., Aguilar Gaxiola, S. et al. (2007) Age of onset of mental disorders: a review of recent literature. Current Opinion in Psychiatry, 20, 359 364. Wittchen, H. U., Lieb, R., Schuster, P. et al. (1999) When is onset? Investigations into early developmental stages of anxiety and depressive disorders, in Childhood Onset of ‘Adult’ Psychopathology: Clinical and Research Advances (ed. J. L. Rapoport), American Psychiatric Press, Washington, DC, pp. 259 302. Kendall, P. C. and Kessler, R. C. (2002) The impact of childhood psychopathology interventions on subsequent substance abuse: policy implications, comments, and recommendations. Journal of Consulting and Clinical Psychology, 70, 1303 1306. Angst, J. and Vollrath, M. (1991) The natural history of anxiety disorders. Acta Psychiatrica Scandinavica, 84, 446 452. Bruce, S. E., Yonkers, K. A., Otto, M. W. et al. (2005) Influence of psychiatric comorbidity on recovery and recurrence in generalised anxiety disorder, social phobia, and panic disorder: a 12 year prospective study. American Journal of Psychiatry, 162, 1179 1187. Kessler, R. C. (1995) Epidemiology of psychiatric comorbidity, in Textbook in Psychiatric Epidemiology (eds M. T. Tsuang, M. Tohen and G. E. P. Zahner), John Wiley & Sons, Inc., New York, pp. 179 197. Kendler, K. S., Prescott, C. A., Myers, J. et al. (2003) The structure of genetic and environmental risk factors for common psychiatric and substance use disorders in men and women. Archives of General Psychiatry, 60, 929 937. Watson, D. (2005) Rethinking the mood and anxiety disorders: a quantitative hierarchical model for DSM V. Journal of Abnormal Psychology, 114, 522 536. Knight, D. C., Nguyen, H. T. and Bandettini, P. A. (2005) The role of the human amygdala in the production of conditioned fear responses. Neuroimage, 26, 1193 1200.

101

42. Whiteside, S. P., Port, J. D. and Abramowitz, J. S. (2004) A meta analysis of functional neuroimaging in obsessive compulsive disorder. Psychiatry Research, 132, 69 79. 43. He, Y., Zhang, M., Lin, E. H. et al. (2008) Mental disorders among persons with arthritis: results from the World Mental Health surveys. Psychological Medicine, 38, 1639 1650. 44. Ormel, J., Von Korff, M., Burger, H. et al. (2007) Mental disorders among persons with heart disease results from World Mental Health surveys. General Hospital Psychiatry, 29, 325 334. 45. Kessler, R. C., Berglund, P. A., Foster, C. L. et al. (1997) Social consequences of psychiatric disorders, II: teenage parenthood. American Journal of Psychiatry, 154, 1405 1411. 46. Kessler, R. C., Foster, C. L., Saunders, W. B. et al. (1995) Social consequences of psychiatric disorders, I: educational attainment. American Journal of Psychiatry, 152, 1026 1032. 47. Kessler, R. C., Walters, E. E. and Forthofer, M. S. (1998) The social consequences of psychiatric disorders, III: probability of marital stability. American Journal of Psychiatry, 155, 1092 1096. 48. Greenberg, P. E. and Birnbaum, H. G. (2005) The economic burden of depression in the US: societal and patient perspectives. Expert Opinion in Pharmacotherapy, 6, 369 376. 49. Greenberg, P. E., Sisitsky, T., Kessler, R. C. et al. (1999) The economic burden of anxiety disorders in the 1990s. Journal of Clinical Psychiatry, 60, 427 435. 50. Wang, P. S., Aguilar Gaxiola, S., Alonso, J. et al. (2008) Recent treatment of mental disorders in the World Mental Health Survey Initiative, in The WHO World Mental Health Surveys: Global Perspectives on the Epidemiology of Mental Disorders, Cambridge University Press, New York, pp. 541 554. 51. Wang, P. S., Lane, M., Olfson, M. et al. (2005) Twelve month use of mental health services in the United States: results from the National Comorbidity Survey Replication. Archives of General Psychiatry, 62, 629 640. 52. Wang, P. S., Simon, G. E., Avorn, J. et al. (2007) Telephone screening, outreach, and care management for depressed workers and impact on clinical and work productivity outcomes: a randomised controlled trial. Journal of the American Medical Association, 298, 1401 1411.

9 Families and psychosis Juliana Onwumere, Ben Smith and Elizabeth Kuipers Institute of Psychiatry, King' s College London, London, UK

9.1

INTRODUCTION

Significantchangestotheprovisionofcareandtreatment forpeoplewith long-term mentalhealth problemshasled to a much greater focus on families. Among working age adults (i.e. 18 65 years), the literature on mental health problems and families has tended to concentrate on psychosis and this will be reflected in the current chapter. However, it is also the case that there is increasing evidence that issues related to mental health problems within families can extend across different diagnostic groups including dementias, affective and eating disorders [1 4] and severe physical health conditions [5]. For decades, the ‘family’ has remained at the heart of discussions on schizophrenia spectrum disorders.

9.2

These discussions have tended to shift between examining the impact of mental health problems on carers (e.g. carer burden) or the impact of carers on illness course and patient outcomes (e.g. expressed emotion). This chapter reviews evidence across both areas and examines the efficacy of family work. In line with recent neurobiological models of psychosis (e.g. see Reference [6]), we continue to hold the view that families do not cause schizophrenia. Families, however, do play an instrumental role in improving our understanding of psychosis and can facilitate optimal outcomes, for patients and carers themselves.

FAMILIES AS A RESOURCE

High levels of social disadvantage are found in individuals with psychosis [7]. Moreover, social dysfunction is a key characteristic of psychosis that is present during the early phases of the illness [8]. Many patients tend to have smaller social networks [9,10]; relatively few will have partnerships or become parents [11]. However, a large majority live with and/or maintain close contact with informal carers [12], particularly

during the early phases of the illness [13,14] and among minority ethnic groups [15]. The large numbers of individuals living with residual symptoms coupled with high rates of relapse and problematic recovery means that the role of an informal carer can often represent a long-term commitment [16]. Following the onset of psychosis, which typically occurs during late adolescence, carers can encounter

Principles of Social Psychiatry, second edition Edited by Craig Morgan and Dinesh Bhugra Ó 2010 John Wiley & Sons, Ltd.

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significant role changes that they often feel illequipped to manage [17]. The evidence suggests that carers tend to be first-degree relatives (e.g. parents) or the partner of the identified patient [18]. They are also likely to be middle aged (i.e. over 50 years old) [19,20]. Since caregiving is usually a female-dominated activity [21], and patients are more frequently male, carers of individuals with psychosis in clinical services and research studies are usually mothers, who are providing care for their adult male sons [22,23]. Although historically family carers were incorrectly identified as having a causal role in psychosis, more recently the role of a carer is recognized as being critical in maintaining the well-being of patients living in the community [24,25]. Carers can play a significant role in improving a patient’s treatment adherence [26], monitoring their mental state and identifying incipient signs of deterioration, and accessing appropriate services, particularly during the early

9.3

phases of the illness [27,28]. Carers can provide different types of support, serve as advocates and respond to areas of unmet need. Across the mental and physical health literature, the evidence also suggests that patients tend to obtain better outcomes (e.g. improved quality of life, decreased symptoms and length of inpatient days) when they have carers [11,29]. For example, Schofield et al. [25] observed that patients with schizophrenia and substance misuse problems, who also had carers, spent significantly fewer days as an inpatient compared with matched patient groups without carer contact. Recent findings from a study of individuals with first-episode psychosis suggested that lower levels of positive symptoms were linked to supportive social environments. The support received specifically from family members was related to reduced hospital admissions in the three years following the initial episode [30].

THE IMPACT OF CAREGIVING

Research evidence spanning five decades attests to the negative impact of caring for an individual with psychosis on a carer’s physical and emotional health [31 33]. As a group, carers tend to report poor physical health and they are more likely to experience sleep disturbances [34]. Like patient groups, carers also have an increased risk of mortality and medical hospitalizations [35,36]. Treudley [37] provided some of the earliest data documenting the negative impact of caregiving on carer mental health and quality of life. The negative impact was commonly described as carer or family ‘burden’. Carer burden was measured along two dimensions: objective and subjective burdens. Objective burden related to the tangible and observable effects of the patient’s mental health problems on the family, such as disrupted domestic routines, and constraints on carers’ social and leisure activities [38]. In contrast, subjective burden was related to a carer’s negative appraisal of their circumstances. It reflected the negative psychological sequelae of the illness on the carer, such as feelings of loss, guilt, shame and anger [39,40]. Data drawn from more recent investigations of carers suggest as many as 80% of carers

experience burden in their caregiving role [41]. Carer burden is universal and has been observed in diverse ethnic and cultural groups drawn from Europe, Africa, America, the Middle East and Asia [22,23,42 44]. It has been recorded in different carer subgroups including spouses and siblings [45,46]. Evidence of carer burden has also been confirmed in a broad range of mental health disorders including bipolar affective disorder [47], depression [48] and obsessive-compulsive disorders [49]. The negative impact of psychosis on carer wellbeing is also commonly measured and described in terms of stress levels and mood disturbance. There are robust contemporary findings that confirm significantly higher rates of depression, anxiety and general distress in carers [50]. Moreover, levels of burn-out among carers are usually high (e.g. emotional exhaustion) and not dissimilar to levels reported by professional psychiatric personnel [51]. Carer distress and burden can vary during different illness phases but can be enduring and continue beyond the end of the caregiving relationship [52]. Higher levels of distress have also been observed among carers of patients who have recently become unwell and those who have

FAMILIES AND PSYCHOSIS

recently been admitted to hospital [17,53]. Similar to patient groups, carers of patients with psychosis are often very socially isolated and stigmatized [54,55]. Many carers have been subject to episodes of verbal and physical violence from the individuals they care for [56,57], and recent evidence suggests that as many as one-third of carers of patients with psychosis meet ‘caseness’ criteria for post-traumatic stress disorder [58]. The incidence and prevalence rates of psychosis and other mental health problems mean that it is not uncommon for more than one member of a family to

9.4

be affected by mental health problems. Therefore, carers may be fulfilling a caring role for more than one family member and/or may have mental health problems of their own. It seems important to recognize that most carers will usually take on their new role in the absence of specialist knowledge and training or additional resources. The role and its demands are often subsumed within their regular duties, which can take their toll on carers’ emotional and physical wellbeing. It is therefore not uncommon for carers to express ambivalence in their feelings towards the patient, their illness and their carer role.

CARER BURDEN AND PATIENT SYMPTOMS

There have been many empirical investigations of patients’ clinical characteristics to determine whether specific symptoms are linked to carer burden and distress; thus far, findings remain equivocal. Difficulties in the measures employed and samples tapped have contributed to the inconsistency [59]. Thus, positive symptoms (e.g. auditory verbal hallucinations) have been linked with significantly higher levels of carer distress and burden [60]. Likewise, negative symptoms (e.g. underactivity, social withdrawal) have also been associated with carer burden and distress [43,61]. Some

9.5

105

studies have identified links with both positive and negative symptoms [13,62]. Overall, however, carers tendtoreportgreaterdistressandburdenwhencaringfor individuals with poorer social and role functioning and sometimes embarrassing and disruptive behaviours. These are often areas of difficulty that are not perceived as directly linked to symptoms or illness. In a recent study that involved a two-year follow-up of patients admitted for their first time, reductions in carer burden were associated with improvements with a patient’s psychosocial functioning [63].

CARER COPING STYLES AND CAREGIVING

Levels of carer burden and stress have also been linked to coping styles. Carers of patients with psychosis tend to use different coping strategies (e.g. ignoring, avoidance) that are often employed through a process of trial and error [33,64,65]. Historically, the coping literature has made distinctions between ‘emotion’ and ‘problem’ focused coping [66]. The former reflects coping designed to diminish the negative emotional impact of the stressor using strategies such as avoidance and denial. In contrast, problem focused coping describes the direct action an individual adopts to change the situation, such as seeking social support and problem solving. There is growing evidence of links between carer burden, distress and emotion focused coping. Magliano et al. [67] studied 159 caregivers of patients with

psychosis recruited from five European countries. During a 12-month follow-up, levels of objective and subjective burden decreased in carers who employed fewer emotion focused coping strategies (e.g. avoidance of the patient) and had higher levels of practical support from their social network. Scazufca and Kuipers [68] reported that higher rates of carer burden were observed in the period prior to and after inpatient admission for carers who used more avoidant styles of coping. Coping research also suggests that carers report lower burden when they employ coping styles characterized by ignoring and acceptance (e.g. indifference) [64]. Recent evidence from an exploratory study suggests that parents with a stronger history of psychosis in the family, defined in terms of having more than one first-degree relative with psychosis,

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also tended to display less effective coping styles [69]. It is also of note that carers’ positive evaluations about their coping efficacy, independent of patient symp-

9.6

EXPRESSED EMOTION AND FAMILIES

The relationship between psychosis and carers has been studied extensively through the concept of expressed emotion (EE). EE is said to represent a carer’s evaluation of their relationship quality with the patient [71]. The study of EE has a long history in adult mental health and commenced with the work of George Brown and colleagues in the 1950s and 1960s (e.g. see References [72] to [74]). Their investigations of patient outcomes following community discharge showed that patients experienced more relapses and readmissions when they returned to live in large hostels or with parents and spouses [72,73]. Moreover, higher levels of relapse were observed for patients who returned to households with carers with ‘high emotional involvement’ rather than ‘low emotional involvement’. Patient relapse was independently predicted by high levels of carer emotional involvement. The term EE and the individual components of EE were developed in one of their later studies [75]. Brown and colleagues also developed the Camberwell Family Interview (CFI), a semi-structured audiotaped interview, to evaluate the patient caregiver relationship and derive EE ratings [76,77]. EE comprises five different subscales: criticism, hostility, emotional overinvolvement, warmth and positive comments. Criticism reflects an unfavourable remark and/or expression about the patients’ behaviour or personality. Hostility refers to extreme aspects of criticism and is most commonly voiced as a rejecting remark or negative expression about the patient in general rather than a specific behaviour. Emotional overinvolvement (EOI) reflects various

9.7

toms and levels of burden, have been linked to reduced distress levels and positive attitudes towards patients [70].

carer behaviours, which include self-sacrifice, preoccupation with the patient’s illness and overprotection. Positive remarks are unambiguous positive statements about the patient’s personality, skills and attributes. Warmth reflects carer expressions of empathy, sympathy, concern and understanding towards the patient. EE ratings are based on content and prosodic aspects of speech, including emphasis and tone. Therefore, ratings are derived from what is said and the way it is said [78]. The computation of high and low EE is based on scores from the criticism, hostility and EOI subscales only, since these scales have historically proved to be the most predictive of patient outcomes [79,80]. High EE ratings are assigned when carers score above-threshold levels of criticism, hostility and EOI on the CFI. While EE ratings are based on one person (the person who spends the most time with the patient), the final ratings are thought to reflect the emotional climate of the whole household. High EE is common among carers [81] and observable during the early stages of the illness [54,82,83]. There is evidence to suggest that cultural membership can influence carers’ emotional reactions and understanding of patients’ symptoms [84,85]. Although rates do vary across studies, high EE has been observed in carers from diverse racial and cultural groups, including those drawn from Asia and the Middle East [86 88]. EE levels are not stable and changes can usually be observed over a nine to 12 month period, particularly reductions from original high EE levels [82,89].

EXPRESSED EMOTION AND PATIENT OUTCOMES

EE remains an important concept in mental health due to its ability to predict patient outcomes. Although relapse definitions have varied between studies there are significant and robust findings in support of a

predictive relationship between high carer EE and patient relapse [79,80]. Bebbington and Kuipers [79] analysed 25 worldwide EE outcome studies and revealed a 50% relapse rate for patients living in high

FAMILIES AND PSYCHOSIS

EE households compared with 21% for patients in low EE households. Overall, the risk of relapse for patients in high EE households was 2.5 times higher than risk levels observed for patients from low EE households. The association between high EE and relapse was similar for patients receiving regular medication and for those who did not. While high levels of face-toface contact between patients and high EE caregivers increased the risk of relapse, high levels of contact with a low EE relative served as a protective factor. Similar results were reported by Butzlaff and Hooley [80], who conducted a meta-analysis of 27 EEoutcome studies. They observed an effect size of 0.31, which was equivalent to a relapse rate of 65% in high EE households and 35% in the low EE group. The negative consequences of high EE on patient outcomes are not limited to the short term (e.g. 12 months). For example, Marom et al. [90] conducted a seven-year follow-up of carers of 108 patients with psychosis living in Israel; higher rates of readmissions, earlier first and second readmissions, and longer inpatient stays were associated with carers reporting higher levels of criticism compared with low criticism carers. Likewise, Huguelet et al. [91] reported higher levels of relapse and readmissions in patients from high EE compared with low EE households as part of a five-year follow-up. The association between EE and patient relapse is also evident during the early phases of psychosis, although results thus far have been equivocal. Some studies have reported a significant association [92,93], while others have failed to do so [94]. Thus far, the predictive power of EE ratings appears stronger for patients with a longer duration of illness [80]. The predictive link between high EE and poorer patient outcomes has also been demonstrated in diverse cultural groups [84,95]. However, recent evidence from a small handful of

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studies, predominately from America, suggests that the links between carer EE and poor patient outcomes may not be uniform across all cultural groups [96,97]. For instance, Rosenfarb et al. [85] found that higher levels of carer criticism and intrusive behaviours were in fact associated with improved patient outcomes in African American families compared with their white participants. In terms of specifying the exact mechanisms, it has been argued that high EE leads to adverse patient outcomes via increased patient arousal and affective disturbances [98]. Kuipers et al. [18] observed, as hypothesized, that patients with carers with high EE also tended to have higher levels of anxiety and depression. Moreover, carers’ critical comments were predictive of patient anxiety. Likewise, low carer selfesteem and poorer coping were associated with critical comments. Barrowclough et al. [81] have also found carer critical comments to be associated with negative self-evaluations in patients. In addition to predictive links with relapse, EE attitudes remain of clinical interest as they provide an important pathway to understanding how carers make sense of the patient’s illness. There are many studies that confirm the importance of these carer attributions. For instance, carer criticism and hostility tends to be associated with a carer’s perception that a patient is able to control their symptoms and problems. In contrast, carers with high levels of emotional overinvolvement are more inclined to perceive patients as having little or no control over their symptoms and problems (see Reference [99] for a review). Overall, these results have led some researchers to suggest that high EE behaviours are probably best conceptualized as strategies employed by carers to cope with and influence behavioural change among patients.

POSITIVE FAMILY RELATIONSHIPS

Data from a Finnish adoptee study confirmed that family environments defined as positive and healthy conferred protection against developing schizophrenia spectrum disorders in children with high genetic risk [100]. Similar findings have been reported by Schiffman et al. [101]. We also know that mental

health carers who express positivity towards patients are more likely to assist patients in their recovery [102]. However, the positive dimensions of EE (i.e. warmth and positive remarks) and positive family environments and relationships have received much less attention from researchers so far.

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From their review of EE studies, Bebbington and Kuipers [79] confirmed that good patient outcomes were predicted by carer warmth and positive comments. Carer warmth has been associated with improved outcomes for patients with long-established illness courses [79,103,104] and more recently for patients in the prodromal and at-risk phases [105 107]. The evidence suggests that warmth also provides protection against relapse particularly in some cultural groups [97,108] and is linked to fewer symptoms and improved social functioning in patients at risk of developing psychosis [105]. For example, Bertrando et al. [103] conducted a nine-month follow-up of 42 Italian inpatients and their caregivers. Significantly fewer readmissions were reported among patients from ‘high warmth’ compared with ‘low warmth’ households. Carer warmth was significantly associated with lower rates of relapse in both low and high EE households. In a recent study that examined EE and relapse in Mexican American and Anglo American samples,

9.9

PATIENT PERCEPTIONS OF CAREGIVING RELATIONSHIPS

Historically, EE studies have been limited to examining carer attitudes and their links to patient outcomes. In the last decade, however, there have been a growing number of studies that have sought to explore how patients perceive carers’ attitude towards them and the degree of overlap between the two [109,110]. These studies have also been driven by more recent cognitive models of psychosis, which posit that appraisals are important aspects of patient reactions to unusual experiences and stress [6,111]. In an investigation of recently relapsed patients, results indicated that patient perceptions of carer criticism were positively linked with carer ratings of criticism, hostility and high EE. Moreover, high EE

9.10

carer warmth was associated with illness course, but only in the Mexican American sample. Thus, following admission, Mexican American patients with psychosis who returned to households that were high in warmth were less likely to relapse, whereas warmth had no significant impact on illness course for the Anglo American patients. The authors conclude that warmth appeared to serve as a protective factor for the Mexican American sample, while high levels of criticism continued to serve as a risk factor for Anglo Americans [97]. Recent findings from a study of patients at ultra high risk for psychosis and with recent onset symptoms revealed that carers’ positive remarks and warmth towards patients were positively linked with their own improved problem-solving skills. Carers with good problem-solving skills were also likely to have patients with similar skills. Patients with good problem-solving skills at baseline were more likely to show improved social functioning and fewer positive symptoms at six-month follow-up [106].

was a significant predictor of a patient’s negative perceptions. The significant associations were not accounted for by the patient’s mood or psychotic symptoms [112]. Similar findings were reported by Scazufca et al. [113], who observed that patients from high EE households perceived higher levels of carer criticism than patients with low EE carers at the point of admission. Patient perceptions of carer attitudes have also been linked to patient outcomes [114]. Among patients with psychosis, Tompson et al. [110] observed that perceived carer criticism, rather than observed carer EE, predicted patient relapse at twelve-month follow-up. This finding was particularly evident for black and minority ethnic groups.

WORKING WITH INDIVIDUALS WITH PSYCHOSIS AND THEIR FAMILIES

It is well documented that carers want to have more information about psychosis including management of specific problem behaviours, and to be more involved in treatment decisions [115,116]. Patients would also welcome greater opportunities for carers

to be involved in their care [117]. Moreover, staff recognize the importance of working with families where an individual has psychosis [118]. The importance of supporting individuals with psychosis and their families is reflected by the inclusion of family

FAMILIES AND PSYCHOSIS

(carer) interventions in the UK evidence-based treatment guidelines for schizophrenia [119]. Similar treatment recommendations have been made in the US [120,121]. Over the last thirty years, a number of studies have documented the benefits of family work for patients and carers. Family interventions have proven efficacy in significantly reducing patient relapse rates and the negative impact of psychosis on carers [122,123]. They can reduce carers’ negative attitudes and positively influence their willingness to continue providing patient care [124,125]. The effectiveness of family interventions in routine services has also been confirmed [126 128]. The updated NICE Schizophrenia Guidelines propose that family interventions should be on offer to all individuals with psychosis in regular family contact and at least 10 therapy sessions should be offered over a period of at least three months and up to one year [119]. In addition to having a positive and nonblaming stance towards families, the evidence-based family intervention manuals comprise key therapeutic activities such as problem solving, communication skills, relapse prevention and psychoeducation (e.g. see References [129] to [132]). The different

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manuals have been developed to meet the varied clinical needs of carer and patient groups. Thus, family interventions can be delivered in settings designed for individual families [131] or large multiple family groups [133]. Families can be seen at home or within treatment clinics and sessions may not always routinely include the patient [134], although the evidence is stronger when they are included. Some manuals have been specifically developed for families during the early phases [135]. However, despite the strong evidence base [136] and national treatment recommendations [119], the provision of family interventions within routine clinical services is extremely low [137]. Moreover, the evidence suggests that independent of formal interventions, any contact between professionals and families is usually limited and in the form of telephone calls during times of crises [137]. These circumstances are disappointing, particularly given the role played by carers in patient functioning. Difficulties with provision of family interventions have been linked to issues related to staff training and their attitudes towards families [137], organizational barriers (e.g. heavy workload of staff) [138] and reluctance expressed by carers and/or patients.

SUMMARY AND CONCLUSION

Schizophrenia spectrum disorders can be severe and long term, and have an adverse impact on an individual’s social network. Many patients, however, do remain in contact with families, particularly during the early phases of the illness. Carers provide an invaluable source of community support and social contact. However, caregiving can negatively affect the health and well-being of carers; a majority report stress and burden within their role. In addition to coping with problematic patient behaviours, carers must grapple with a broad range of issues, including those related to diminished finances, restrictions on their freedom and leisure time, and emotional issues such as loss and grief. Like patients, carers are often socially isolated, have difficulties coping and may be stressed and depressed themselves. These problems can then manifest themselves in carers’ negative and critical attitudes towards patients. However, negative

attitudes are strongly linked to poorer patient outcomes, including elevated rates of relapse. Moreover, carers with critical patient attitudes tend to believe patients can control their symptoms and are less likely to attribute patient difficulties to an illness. Patients can accurately perceive carer attitudes, particularly those that are negative. These perceptions have also been associated with poorer outcomes. More recent research has looked at positive family reactions and confirmed, in contrast, that these can be helpful in maintaining recovery. Evidence-based family interventions have been developed to alleviate some of the strains and difficulties found within such families. These focus on developing more positive coping, support, communication patterns, problem solving and cognitive reappraisals when someone in the family has psychosis. Despite having a well-developed evidence base [119] showing that such family

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intervention can prevent relapse, access to such therapies remains limited currently by a lack of trained staff and adequate infrastructure. The only exceptions to this are in some early intervention services (e.g. see References [10], [139] and [140]). Mental healthcare systems have limited resources. As a consequence, informal carers will continue to be major partners in the care and support of people with long-term mental health problems, particularly in the initial stages. Moreover, carers often want to be more involved and to establish better communication pathways with service providers. However, long-term mental health problems such as schizophrenia or depression can have a negative effect on families and relationships. If carers are negatively affected by their role and lack support from services, they are less likely to maintain their caregiving role. In turn, patient outcomes will be adversely affected and additional professional support is likely to be required. It follows that family interventions, determined by level of need and embedded within a social cultural context, should remain a priority for all services. These should be offered not just as early interventions, but also for the middle and later phases of problems [141]. REFERENCES 1. Coen, R. F., O’Boyle, C. A., Coakley, D. and Lawlor, B. A. (2002) Individual quality of life factors distin guishing low burden and high burden caregivers of dementia patients. Dementia and Geriatric Cognitive Disorders, 13 (3), 164 170. 2. Whitney, J., Haigh, R., Weinman, J. and Treasure, J. (2007) Caring for people with eating disorders: factors associated with psychological distress and negative caregiving appraisals in carers of people with eating disorders. British Journal of Clinical Psychology, 46, 413 428. 3. Perlick, D., Clarkin, J. F., Sirey, J. et al. (1999) Burden experienced by care givers of persons with bipolar affective disorder. British Journal of Psychiatry, 175, 56 62. 4. Tolin, D. F., Frost, R. O., Steketee, G. and Fitch, K. E. (2008) Family burden of compulsive hoarding: results of an internet survey. Behaviour Research and Ther apy, 46 (3), 334 344.

5. Magliano, L., Fiorillo, A., De Rosa, C. et al. (2005) Family burden in long term diseases: a comparative study in schizophrenia vs physical disorders. Social Science and Medicine, 61 (2), 313 322. 6. Garety, P. A., Bebbington, P., Fowler, D. et al. (2007) Implications for neurobiological research of cognitive models of psychosis: a theoretical paper. Psychologi cal Medicine, 37, 1377 1391. 7. Morgan, C., Kirkbride, J., Hutchinson, G. et al. (2008) Cumulative social disadvantage, ethnicity and first episode psychosis: a case control study. Psychological Medicine, 38 (12), 1701 1715. 8. Addington, J., Penn, D., Woods, S. W. et al. (2008) Social functioning in individuals at clinical high risk for psychosis. Schizophrenia Research, 99 (1 3), 119 124. 9. Berry, K., Wearden, A. and Barrowclough, C. (2007) Adult attachment styles and psychosis: an investiga tion of associations between general attachment styles and attachment relationships with specific others. So cial Psychiatry and Psychiatric Epidemiology, 42, 972 976. 10. Stanghellini, G. and Ballerini, M. (2007) Criterion B (social dysfunction) in persons with schizophrenia: the puzzle. Current Opinion in Psychiatry, 20, 582 587. 11. Fleury, M. J., Grenier, G., Caron, J. and Lesage, A. (2008) Patients’ report of help provided by relatives and services to meet their needs. Community Mental Health Journal, 44 (4), 271 281. 12. Parabiaghi, A., Lasalvia, A., Bonetto, C. et al. (2007) Predictors of changes in caregiving burden in people with schizophrenia: a 3 year follow up study in a community mental health service. Acta Psychiatrica Scandinavica, 116 (s437), 66 76. 13. Addington, J., Coldham, E. L., Jones, B. et al. (2003) The first episode of psychosis: the experience of relatives. Acta Psychiatrica Scandinavica, 108 (4), 285 289. 14. Fisher, H., Theodore, K., Power, P. et al. (2008) Routine evaluation in first episode psychosis services: feasibility and results from the MiData project. Social Psychiatry and Psychiatric Epidemiology, 43 (12), 960 967. 15. Guada, J., Brekke, J. S., Floyd, R. and Barbour, J. (2009) The relationships among perceived criticism, family contact, and consumer clinical and psychosocial functioning for African American consumers with schizophrenia. Community Mental Health Journal, 45 (2), 106 116.

FAMILIES AND PSYCHOSIS

16. Harrow, M., Grossman, L. S., Jobe, T. H. and Herbener, E. S. (2005) Do patients with schizophrenia ever show periods of recovery? A 15 year multi follow up study. Schizophrenia Bulletin, 31 (3), 723 734. 17. Martens, L. and Addington, J. (2001) The psycholo gical well being of family members of individuals with schizophrenia. Social Psychiatry and Psychiatric Epidemiology, 36 (3), 128 133. 18. Kuipers, E., Bebbington, P., Dunn, G. et al. (2006) Influence of carer expressed emotion and affect on relapse in non affective psychoses. British Journal of Psychiatry, 188, 173 179. 19. Hirst, M. (2005) Carer distress: a prospective, popula tion based study. Social Science and Medicine, 61 (3), 697 708. 20. Lelliott, P., Beevor, A., Hogman, G. et al. (2003) Carers’ and users’ expectations of services carer version (CUES C): a new instrument to support the assessment of carers of people with a severe mental illness. Journal of Mental Health, 12 (2), 143 152. 21. Hooyman, N. R. and Gonyea, J. G. (1995) Family caregiving, in Encyclopedia of Social Work, 19th edn (ed. R. L. Edwards), National Association of Social Workers, Washington, DC, pp. 951 959. 22. Grandon, P., Jenaro, C. and Lemos, S. (2008) Primary caregivers of schizophrenia outpatients: burden and predictor variables. Psychiatry Research, 158 (3), 335 343. 23. Tang, V. W. K., Leung, S. K. and Lam, L. C. W. (2008) Clinical correlates of the caregiving experience for Chinese caregivers of patients with schizophrenia. Social Psychiatry and Psychiatric Epidemiology, 43 (9), 720 726. 24. Czuchta, D. M. and McCay, E. (2001) Help seeking for parents of individuals experiencing a first episode of schizophrenia. Archives of Psychiatric Nursing, 15 (4), 159 170. 25. Schofield, N., Quinn, J., Haddock, G. and Barrow clough, C. (2001) Schizophrenia and substance misuse problems: a comparison between patients with and without significant carer contact. Social Psychiatry and Psychiatric Epidemiology, 36 (11), 523 528. 26. Garcia, J. I. R., Chang, C. L., Young, J. S. et al. (2006) Family support predicts psychiatric medication usage among Mexican American individuals with schizo phrenia. Social Psychiatry and Psychiatric Epidemiol ogy, 41 (8), 624 631. 27. Bergner, E., Leiner, A. S., Carter, T. et al. (2008) The period of untreated psychosis before treatment

28.

29.

30.

31.

32.

33.

34.

35.

36.

37. 38.

39.

111

initiation: a qualitative study of family members’ per spectives. Comprehensive Psychiatry, 49, 530 536. Morgan, C., Abdul al, R., Lappin, J. M. et al. (2006) Clinical and social determinants of duration of untreated psychosis in the AESOP first episode psychosis study. British Journal of Psychiatry, 189 (5), 446 452. Garety, P. A., Fowler, D. G., Freeman, D. et al. (2008) Cognitive behavioural therapy and family intervention for relapse prevention and symptom reduction in psychosis: randomised controlled trial. British Journal of Psychiatry, 192, 412 423. Norman, R. M. G., Malla, A. K., Manchanda, R. et al. (2005) Social support and three year symptom and admission outcomes for first episode psychosis. Schizophrenia Research, 80 (2 3), 227 234. Da Roza Davis, J. M. and Cowen, P. J. (2001) Bio chemical stress of caring. Psychological Medicine, 31, 1475 1478. Kuipers, E. and Bebbington, P. (2005) Research on burden and coping strategies in families of people with mental disorders: problems and perspectives, in Families and Mental Disorder: From Burden to Empowerment (eds N. Sartorious, J. Leff and J. J. Lopez), John Wiley & Sons, Ltd, Chichester, pp. 217 234. Wynaden, D. (2007) The experience of caring for a person with mental illness: a grounded theory study. International Journal of Mental Health Nursing, 16, 381 389. Wilcox, S. and King, A. C. (1999) Sleep complaints in older women who are family caregivers. Journal of Gerontology: Psychological Sciences, 54B, 189 198. Gallagher, S. K. and Mechanic, D. (1996) Living with the mentally ill: effects on the health and functioning of other household members. Social Science and Med icine, 42, 1691 1701. Schulz, R. and Beach, S. R. (1999) Caregiving as a risk factor for mortality: the caregiver health effects study. Journal of American Medical Association, 282, 2215 2219. Treudley, M. B. (1946) Mental illness and family routines. Mental Hygiene, 15, 407 418. Thompson, J. E. H. and Doll, W. (1982) The burden of families coping with the mentally ill: an invisible crisis. Family Relations, 31, 379 388. Jungbauer, J., Wittmund, B., Dietrich, S. and Anger meyer, M. C. (2003) Subjective burden over 12 months in parents of patients with schizophrenia. Archives of Psychiatric Nursing, 17 (3), 126 134.

112

COMPONENTS OF THE SOCIAL WORLD

40. Lauber, C., Eichenberger, A., Luginbuhl, P. et al. (2003) Determinants of burden in caregivers of pa tients with exacerbating schizophrenia. European Psy chiatry, 18 (6), 285 289. 41. Magliano, L., Marasco, C., Fiorillo, A. et al. (2002) The impact of professional and social network support on the burden of families of patients with schizophre nia in Italy. Acta Psychiatrica Scandinavica, 106 (4), 291 298. 42. Ostman, M. and Hansson, L. (2004) Appraisal of caregiving, burden and psychological distress in re latives of psychiatric inpatients. European Psychiatry, 19 (7), 402 407. 43. Ukpong, D. I. (2006) Demographic factors and clinical correlates of burden and distress in relatives of services users experiencing schizophrenia: a study from south western Nigeria. International Journal of Mental Health Nursing, 15, 54 59. 44. Karanci, A. N. and Inandilar, H. (2002) Predictors of components of expressed emotion in major caregivers of Turkish patients with schizophrenia. Social Psy chiatry and Psychiatric Epidemiology, 37 (2), 80 88. 45. Friedrich, R. M., Lively, S. and Rubenstein, L. M. (2008) Siblings’ coping strategies and mental health services: a national study of siblings of persons with schizophrenia. Psychiatric Services, 59 (3), 261 267. 46. Jungbauer, J. and Angermeyer, M. C. (2002) Living with a schizophrenic patient: a comparative study of burden as it affects parents and spouses. Psychiatry Interpersonal and Biological Processes, 65 (2), 110 123. 47. Chadda, R. K., Singh, T. B. and Ganguly, K. K. (2007) Caregiver burden and coping: a prospective study of relationship between burden and coping in caregivers of patients with schizophrenia and bipolar affective disorder. Social Psychiatry and Psychiatric Epide miology, 42 (11), 923 930. 48. Jenkins, J. H. and Schumacher, J. G. (1999) Family burden of schizophrenia and depressive illness specifying the effects of ethnicity, gender and social ecology. British Journal of Psychiatry, 174, 31 38. 49. Wilbram, M., Kellett, S. and Beail, N. (2008) Com pulsive hoarding: a qualitative investigation of partner and carer perspectives. British Journal of Clinical Psychology, 47, 59 73. 50. Singleton, N., Maung, N., Cowie, A. et al. (2002) Mental Health of Carers, Office for National Statistics, London.

51. Angermeyer, M. C., Bull, N., Bernert, S. et al. (2006) Burnout of caregivers: a comparison between partners of psychiatric patients and nurses. Archives of Psy chiatric Nursing, 20 (4), 158 165. 52. Brown, S. and Birtwistle, J. (1998) People with schi zophrenia and their families fifteen year outcome. British Journal of Psychiatry, 173, 139 144. 53. Boye, B. and Malt, U. F. (2002) Stress response symptoms in relatives of acutely admitted psychotic patients: a pilot study. Nordic Journal of Psychiatry, 56 (4), 253 260. 54. Kuipers, E. and Raune, D. (2000) The early devel opment of expressed emotion and burden in the families of first onset psychosis, in Early Interven tion in Psychosis (eds M. Birchwood, D. Fowler and C. Jackson), John Wiley & Sons, Ltd, Chichester, pp. 128 140. 55. Lee, C. and Gramotnev, H. (2007) Transitions into and out of caregiving: health and social characteristics of mid age Australian women. Psychology and Health, 22, 193 209. 56. Kjellin, L. and Ostman, M. (2005) Relatives of psy chiatric inpatients do physical violence and suicide attempts of patients influence family burden and par ticipation in care? Nordic Journal of Psychiatry, 59 (1), 7 11. 57. Vaddadi, K. S., Gilleard, C. and Fryer, H. (2002) Abuse of carers by relatives with severe mental illness. Inter national Journal of Social Psychiatry, 48 (2), 149 155. 58. Barton, K. and Jackson, C. (2008) Reducing symptoms of trauma among carers of people with psychosis: pilot study examining the impact of writing about caregiv ing experiences. Australian and New Zealand Journal of Psychiatry, 42 (8), 693 701. 59. Perlick, D. A., Rosenheck, R. A., Kaczynski, R. et al. (2006) Components and correlates of family burden in schizophrenia. Psychiatric Services, 57 (8), 1117 1125. 60. Wolthaus, J. E. D., Dingemans, P. M. A. J., Schene, A. H. et al. (2002) Caregiver burden in recent onset schizophrenia and spectrum disorders: the influence of symptoms and personality traits. Journal of Nervous and Mental Disease, 190 (4), 241 247. 61. Dyck, D. G., Short, R. and Vitaliano, P. P. (1999) Predictors of burden and infectious illness in schizo phrenia caregivers. Psychosomatic Medicine, 61, 411 419. 62. Roick, C., Heider, D., Toumi, M. and Angermeyer, M. C. (2006) The impact of caregivers’ characteristics, patients’ conditions and regional differences on family

FAMILIES AND PSYCHOSIS

63.

64.

65.

66.

67.

68.

69.

70.

71.

72.

73.

74.

burden in schizophrenia: a longitudinal analysis. Acta Psychiatrica Scandinavica, 114 (5), 363 374. Moller Leimkuhler, A. M. and Obermeier, M. (2008) Predicting caregiver burden in first admission psychia tric patients 2 year follow up results. European Archives of Psychiatry and Clinical Neuroscience, 258 (7), 406 413. Birchwood, M. and Cochrane, R. (1990) Families cop ing with schizophrenia coping styles, their origins and correlates. Psychological Medicine, 20 (4), 857 865. Huang, X. Y., Sun, F. K. and Fu, Yen (2008) The coping experiences of carers who live with someone who has schizophrenia. Journal of Clinical Nursing, 17, 817 826. Folkman, S. and Lazarus, R. S. (1980) An analysis of coping in a middle aged community sample. Journal of Health and Social Behavior, 21 (3), 219 239. Magliano, L., Fadden, G., Economou, M. et al. (2000) Family burden and coping strategies in schizophrenia: 1 year follow up data from the BIOMED I study. Social Psychiatry and Psychiatric Epidemiology, 35 (3), 109 115. Scazufca, M. and Kuipers, E. (1999) Coping strategies in relatives of people with schizophrenia before and after psychiatric admission. British Journal of Psy chiatry, 174 (2), 154 158. St Hilaire, A., Hill, C. L. and Docherty, N. M. (2007) Coping in parents of schizophrenia patients with differing degrees of familial exposure to psychosis. Journal of Nervous and Mental Disease, 195 (7), 596 600. Garcia, J. I. R., Hernandez, B. and Dorian, M. (2009) Mexican American caregivers’ coping efficacy asso ciations with caregivers’ distress and positivity to their relatives with schizophrenia. Social Psychiatry and Psychiatric Epidemiology, 44 (2), 162 170. Scazufca, M. and Kuipers, E. (1996) Links between expressed emotion and burden of care in relatives of patients with schizophrenia. British Journal of Psychiatry, 168 (5), 580 587. Brown, G. W. (1959) Experiences of discharged chronic schizophrenic mental hospital patients in var ious types of living group. Milbank Quarterly, 37, 105 131. Brown, G. W., Carstairs, G. M. and Topping, G. (1958) Post hospital adjustment of chronic mental patients. The Lancet, 272 (7048), 685 689. Brown, G. W., Monck, E. M., Carstairs, G. M. and Wing, J. K. (1962) The influence of family life on the

75.

76.

77.

78.

79.

80.

81.

82.

83.

84.

85.

86.

113

course of schizophrenic illness. British Journal of Preventive Social Medicine, 16 (2), 55 68. Brown, G. W., Birley, J. L. T. and Wing, J. K. (1972) Influence of family life on the course of schizophrenic disorders: a replication. British Journal of Psychiatry, 121 (3), 241 258. Brown, G. W. and Rutter, M. (1966) The measurement of family activities and relationships: a methodologi cal study. Human Relations, 19, 241 263. Rutter, M. and Brown, G. W. (1966) The reliability and validity of measures of family life and relationships in families containing a psychiatric patient. Social Psychiatry, 1, 38 53. Kuipers, L. (1979) Expressed emotion: a review. British Journal of Social and Clinical Psychology, 18, 237 243. Bebbington, P. and Kuipers, L. (1994) The predictive utility of expressed emotion in schizophrenia an aggregate analysis. Psychological Medicine, 24 (3), 707 718. Butzlaff, R. L. and Hooley, J. M. (1998) Expressed emotion and psychiatric relapse a meta analysis. Archives of General Psychiatry, 55 (6), 547 552. Barrowclough, C., Tarrier, N., Humphreys, L. et al. (2003) Self esteem in schizophrenia: relationships between self evaluation, family attitudes, and symp tomatology. Journal of Abnormal Psychology, 112 (1), 92 99. Patterson, P., Birchwood, M. and Cochrane, R. (2005) Expressed emotion as an adaptation to loss prospec tive study in first episode psychosis. British Journal of Psychiatry, 187, S59 S64. Raune, D., Kuipers, E. and Bebbington, P. (2004) EE at first episode psychosis: investigating a carer appraisal model. British Journal of Psychiatry, 184, 321 326. Kopelowicz, A., Lopez, S. R., Zarate, R. et al. (2006) Expressed emotion and family interactions in Mexican Americans with schizophrenia. Journal of Nervous and Mental Disease, 194 (5), 330 334. Rosenfarb, I. S., Bellack, A. S. and Aziz, N. (2006) Family interactions and the course of schizophrenia in African American and white patients. Journal of Abnormal Psychology, 115 (1), 112 120. Dorian, M., Ramirez Garcia, J. I., Lopez, S. R. and Hernandez, B. (2008) Acceptance and expressed emo tion in Mexican American caregivers of relatives with schizophrenia. Family Process, 47 (2), 215 228.

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87. Li, Z. and Arthur, D. (2005) A study of three measures of expressed emotion in a sample of Chinese families of a person with schizophrenia. Journal of Psychiatric and Mental Health Nursing, 12 (4), 431 438. 88. Mottaghipour, Y., Pourmand, D., Maleki, H. and Davidian, L. (2001) Expressed emotion and the course of schizophrenia in Iran. Social Psychiatry and Psychiatric Epidemiology, 36 (4), 195 199. 89. Scazufca, M. and Kuipers, E. (1998) Stability of expressed emotion in relatives of those with schizo phrenia and its relationship with burden of care and perception of patients’ social functioning. Psycholo gical Medicine, 28 (2), 453 461. 90. Marom, S., Munitz, H., Jones, P. B. et al. (2005) Expressed emotion: relevance to rehospitalization in schizophrenia over 7 years. Schizophrenia Bulletin, 31 (3), 751 758. 91. Huguelet, P., Favre, S., Binyet, S. et al. (1995) The use of expressed emotion index as a predictor of outcome in first admitted schizophrenic patients in French speaking area of Switzerland. Acta Psychiatrica Scan dinavica, 92, 447 452. 92. Barrelet, L., Ferrero, F., Szigethy, L. et al. (1990) Expressed emotion and first admission schizophrenia nine month follow up in a French cultural environ ment. British Journal of Psychiatry, 156 (3), 357 362. 93. Stirling, J., Tantam, D., Thomas, P. et al. (1991) Expressed emotion and early onset schizophrenia: a one year follow up. Psychological Medicine, 21, 675 685. 94. Jarbin, H., Grawe, R. W. and Hansson, K. (2000) Expressed emotion and prediction of relapse in ado lescents with psychotic disorders. Nordic Journal of Psychiatry, 54, 201 205. 95. Marom, S., Munitz, H., Jones, P. B. et al. (2002) Familial expressed emotion: outcome and course of Israeli patients with schizophrenia. Schizophrenia Bulletin, 28 (4), 731 743. 96. Kopelowicz, A., Zarate, R., Gonzalez, V. et al. (2002) Evaluation of expressed emotion in schizophrenia: a comparison of Caucasians and Mexican Americans. Schizophrenia Research, 55 (1 2), 179 186. 97. Lopez, S. R., Hipke, K. N., Polo, A. J. et al. (2004) Ethnicity, expressed emotion, attributions, and course of schizophrenia: family warmth matters. Journal of Abnormal Psychology, 113 (3), 428 439. 98. Kuipers, E. (2006) Family interventions in schizophre nia: evidence for efficacy and proposed mechanisms of change. Journal of Family Therapy, 28 (1), 73 80.

99. Barrowclough, C. and Hooley, J. M. (2003) Attribu tions and expressed emotion: a review. Clinical Psy chology Review, 23 (6), 849 880. 100. Tienari, P., Wynne, L. C., Sorri, A. et al. (2004) Genotype environment interaction in schizophrenia spectrum disorder long term follow up study of Finnish adoptees. British Journal of Psychiatry, 184, 216 222. 101. Schiffman, J., LaBrie, J., Carter, J. et al. (2002) Perception of parent child relationships in high risk families, and adult schizophrenia outcome of off spring. Journal of Psychiatric Research, 36 (1), 41 47. 102. Weisman, A. G., Gomes, L. G. and Lopez, S. R. (2003) Shifting blame away from ill relatives Latino famil ies’ reactions to schizophrenia. Journal of Nervous and Mental Disease, 191 (9), 574 581. 103. Bertrando, P., Beltz, J., Bressi, C. et al. (1992) Expressed emotion and schizophrenia in Italy a study of an urban population. British Journal of Psy chiatry, 161, 223 229. 104. Ivanovic, M., Vuletic, Z. and Bebbington, P. (1994) Expressed emotion in the families of patients with schizophrenia and its influence on the course of illness. Social Psychiatry and Psychiatric Epidemiology, 29 (2), 61 65. 105. O’Brien, M. P., Gordon, J. L., Bearden, C. E. et al. (2006) Positive family environment predicts improve ment in symptoms and social functioning among adolescents at imminent risk for onset of psychosis. Schizophrenia Research, 81, 269 275. 106. O’Brien, M. P., Zingberg, J. L., Ho, L. et al. (2009) Family problem solving interactions and 6 month symptomatic and functional outcomes in youth at ul tra high risk for psychosis and with recent onset psy chotic symptoms: a longitudinal study. Schizophrenia Research, 107, 198 205. 107. McFarlane, W. R. and Cook, W. L. (2007) Family expressed emotion prior to onset of psychosis. Family Process, 46 (2), 185 197. 108. Breitborde, N. J. K., Lopez, S. R., Wickens, T. D. et al. (2007) Toward specifying the nature of the relation ship between expressed emotion and schizophrenia relapse: the utility of curvilinear models. International Journal of Methods in Psychiatric Research, 16 (1), 1 10. 109. Cutting, L. P., Aakre, J. M. and Docherty, N. M. (2006) Schizophrenic patients’ perceptions of stress, ex pressed emotion, and sensitivity to criticism. Schizo phrenia Bulletin, 32 (4), 743 750.

FAMILIES AND PSYCHOSIS

110. Tompson, M. C., Goldstein, M. J., Lebell, M. B. et al. (1995) Schizophrenic patients’ perceptions of their relatives’ attitudes. Psychiatry Research, 57 (2), 155 167. 111. Garety, P. A., Kuipers, E., Fowler, D. et al. (2001) A cognitive model of the positive symptoms of psycho sis. Psychological Medicine, 31 (2), 189 195. 112. Onwumere, J., Kuipers, E., Bebbington, P. et al. (2009) Patient perceptions of caregiver criticism in psychosis: links with patient and caregiver functioning. Journal of Nervous and Mental Disease, 197 (2), 85 91. 113. Scazufca, M., Kuipers, E. and Menezes, P. R. (2001) Perception of negative emotions in close relatives by patients with schizophrenia. British Journal of Clin ical Psychology, 40, 167 175. 114. Lebell, M. B., Marder, S. R., Mintz, J. et al. (1993) Patients’ perceptions of family emotional climate and outcome in schizophrenia. British Journal of Psychia try, 162, 751 754. 115. Simpson, A. (1999) Creating alliances: the views of users and carers on the education and training needs of community mental health nurses. Journal of Psychia tric and Mental Health Nursing, 6 (5), 347 356. 116. Biegel, D. E., Song, L. Y. and Milligan, S. E. (1995) A comparative analysis of family caregivers perceived relationships with mental health professionals. Psychia tric Services, 46 (5), 477 482. 117. Walsh, J. and Boyle, J. (2009) Improving acute psychiatric hospital services according to inpatient experiences. A user led piece of research as a means to empowerment. Issues of Mental Health Nursing, 30 (1). 118. Slade, M., Holloway, F. and Kuipers, E. (2003) Skills development and family interventions in an early psychosis service. Journal of Mental Health, 12 (4), 405 415. 119. NICE (2009) Schizophrenia Guideline (Update, 2009) www.nice.org.uk/guidance/index.jsp?action¼byId&o¼ 11786. 120. American Psychiatric Association (2004) Practice guide line for the treatment of patients with schizophrenia. American Journal of Psychiatry, 161 (2 suppl.), 1 56. 121. Lehman, A. F., Lieberman, J. A., Dixon, L. B. et al. (2004) Practice guideline for the treatment of patients with schizophrenia, second edition. American Journal of Psychiatry, 161 (2), 1 56. 122. Pharoah, F., Mari, J., Rathbone, J. and Wong, W. (2006) Family Intervention for Schizophrenia, Cochrane

123.

124.

125.

126.

127.

128.

129.

130. 131.

132.

133.

134.

115

Database of Systematic Reviews, Issue 4, Art. No.: CD000088, DOI: 10.1002/14651858.CD000088.pub2. Pfammatter, M., Junghan, U. M. and Brenner, H. D. (2006) Efficacy of psychological therapy in schizo phrenia: conclusions from meta analyses. Schizophre nia Bulletin, 32, S64 S70. Berglund, N., Vahlne, J. O. and Edman, A. (2003) Family intervention in schizophrenia impact on family burden and attitude. Social Psychiatry and Psychiatric Epidemiology, 38 (3), 116 121. Mueser, K. T., Sengupta, A., Schooler, N. R. et al. (2001) Family treatment and medication dosage reduction in schizophrenia: effects on patient so cial functioning, family attitudes, and burden. Journal of Consulting and Clinical Psychology, 69 (1), 3 12. Barrowclough, C., Tarrier, N., Lewis, S. et al. (1999) Randomised controlled effectiveness trial of a needs based psychosocial intervention service for carers of people with schizophrenia. British Journal of Psychia try, 174, 505 511. Kelly, M. and Newstead, L. (2004) Family intervention in routine practice: it is possible! Journal of Psychia tric and Mental Health Nursing, 11, 64 72. Magliano, L., Fiorillo, A., Malangone, C. et al. (2006) Patient functioning and family burden in a controlled, real world trial of family psychoeduca tion for schizophrenia. Psychiatric Services, 57 (12), 1784 1791. Barrowclough, C. and Tarrier, N. (1992) Families of Schizophrenic Patients: Cognitive Behavioural Intervention, Chapman & Hall, London. Falloon, I. R. H., Boyd, J. L. and McGill, C. W. (1984) Family Care of Schizophrenia, Guildford, London. Kuipers, E., Lam, D. and Leff, J. (2002) Family Work for Schizophrenia: A Practical Guide, Gaskell Press, London. McFarlane, W. R., Lukens, E., Link, B. et al. (1995) Multiple family groups and psychoeducation in the treatment of schizophrenia. Archives of General Psy chiatry, 52 (8), 679 687. McFarlane, W. R. (2002) Multifamily Groups in the Treatment of Severe Psychiatric Disorders, Guildford Press, New York and London. Barrowclough, C., Haddock, G., Tarrier, N. et al. (2001) Randomized controlled trial of motivational interviewing, cognitive behavior therapy, and family intervention for patients with comorbid schizophrenia

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COMPONENTS OF THE SOCIAL WORLD

and substance use disorders. American Journal of Psychiatry, 158 (10), 1706 1713. 135. Addington, J. and Burnett, P. (2004) Working with families in the early stages of psychosis, in Psycholo gical Interventions for Early Psychosis (eds J. F. M. Gleeson and P. D. McGorry), John Wiley & Sons, Ltd, Chichester, pp. 99 116. 136. Pfammatter, M., Junghan, U. M. and Brenner, H. D. (2006) Efficacy of psychological therapy in schizo phrenia: conclusions from meta analyses. Schizophre nia Bulletin, 32 (S1), S64 S80. 137. Kim, H. W. and Salyers, M. (2008) Attitudes and perceived barriers to working with families of persons with severe mental illness: mental health professionals’ perspectives. Community Mental Health Journal, 44 (5), 337 345.

138. Fadden, G. (2006) Training and disseminating family interventions for schizophrenia: developing family intervention skills with multi disciplinary groups. Journal of Family Therapy, 28 (1), 23 38. 139. Kuipers, E., Holloway, F., Rabe Hesketh, S. and Ten nakoon, L. (2004) An RCT of early intervention in psychosis: Croydon Outreach and Assertive Support Team (COAST). Social Psychiatry and Psychiatric Epidemiology, 39, 358 363. 140. Gleeson, F. M., Cotton, S. M., Alvarez Jimenez, M. et al. (2009) A randomised controlled trial of relapse preven tion therapy for first episode psychosis patients. Journal Clinical Psychiatry, 24, el el10 (pii:ej08,04407). 141. Kuipers, E. (2008) The case for early, middle and late intervention for psychosis. Invited commentary. World Psychiatry, 7, 158 159.

10 Culture and its influence on diagnosis and management Dinesh Bhugra1 and Susham Gupta2 1 2

NIH Biomedical Research Centre and Institute of Psychiatry, King' s College London, London, UK East NHS Foundation Trust, London, UK

10.1

INTRODUCTION

We are all born into a culture, absorb its premises as we grow up, and consciously or unconsciously use cultural norms and parameters throughout our lives. The relationship between clinician and patient lies at the heart of any health care delivery system. Both clinician and patient are influenced by culture in presenting and understanding the diverse experiences of distress. Culture influences not only models of illness, i.e. how people make sense of and frame their experiences, but also help-seeking behaviour and how health care systems (broadly defined) are funded and accessed. Furthermore, for clinicians, an understanding of the cultural values, norms and taboos held by patients and their carers may improve the therapeutic alliance and subsequent engagement. Consequently, the concept of culture, and its constituent components, help us considerably in understanding how individuals understand and cope with distress, and their interactions with health care systems. The way culture is constituted and constructed is multifaceted and complex. In any given culture

not all of its components will carry the same emphasis. The constituents of culture include language, folk tales, arts, morals, religious values, taboos, diet and so on. In effect, culture programmes societies by framing the ways in which shared life experiences are interpreted and what they mean both at the microlevel of the individual and family and at the macrolevel of the wider society. In some respects, cultures can be said to have ‘personalities’, and both changes in and movement between cultures can lead to conflict and distress. This chapter provides an overview of the role of culture in the clinical encounter. Relevant epidemiological data will be referred to but will not be analysed. Furthermore, the prevalence and variation of mental disorders by cultural groups will not be discussed here the focus will be on broad cultural factors and their influence on diagnosis and management. Broad issues related to the role of culture and help-seeking behaviour and some principles of managing patients across cultures will be explored.

Principles of Social Psychiatry, second edition Edited by Craig Morgan and Dinesh Bhugra Ó 2010 John Wiley & Sons, Ltd.

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The clinician patient interaction and factors influencing such interactions will be discussed in detail,

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and some general guidelines for practice will be offered.

DEFINITIONS

Kirmayer [1] suggests that the construction of culture offers one way of conceptualizing differences between people, bringing together race, ethnicity and ways of life under a broad rubric to examine the impact of social knowledge, institutions and practices on health, health care and healing. There are well over a hundred definitions of culture [2]. Tylor [3] offered the definition of culture as ‘that complex whole which includes knowledge, belief, art, law, morals, customs and any other capabilities and habits acquired by man as a member of society’. The implication is that culture is acquired and that there is a totality of culture [4]. It is this totality that anthropology has often sought to understand, reflecting an appreciation that culture is more complex than simple behavioural outputs. There is no doubt that the development and progression of anthropology in the UK and the US has taken different paths. In the nineteenth century, British anthropologists followed the Empire across the globe and studied ‘natives’, whereas American anthropologists tended to focus on Amerindian cultures and tribes. Kirmayer [1] points out that the roots of cultural psychiatry can be traced to the very beginnings of modern psychiatry. From travellers’ impressions to participation as observerparticipants, the focus remained on attempts to understand the ‘other’. It is no surprise, given this, that psychiatry and anthropology often intersected, for example, in the work of W. H. R. Rivers. Broad uses of the term ‘culture’ include cultivation (cultivating crops and friendships, and in medicine the striking example is that of bacterial culture), collective identity and the anthropological meaning as described above [5,6]. Professions have cultures (a collective identity, shared practices and norms) as do organizations (whether these are institutions such as clubs or health care organizations). Psychiatry itself has been a product of a specific culture and carries its own cultural meanings within itself. An admirable historical account of the development of culture has been provided by Kirmayer [1].

He offers a perspective that takes into account the impact of colonization, by noting that so-called primitive ways of life may well have been protective against mental disorder on the basis that insanity was apparently rare in such societies. Comparative psychiatry came into its own in the middle of the twentieth century. Boas [7] saw culture as an entity that embraces the social habits of a community; individual behaviours and practices are shaped by the habits and activities of the group or wider community. On the other hand, in contrast to Tylor, culture is defined by Kroeber and Kluckholn as consisting of patterns (both explicit and implicit) of behaviour (acquired and transmitted by symbols), traditional (historically derived and selected) ideas, and especially their attached values. They indicate that culture may both be a product of action as well as conditioning elements of further action. Thus external factors and behaviours become internalized and, as Kroeber and Kluckholn suggest, culture sets standards for behaviour and ideologies. Others have also argued that these standards can be taken as a guide for acting and interpreting the acts of others [8]. The transmissibility of culture and its values lies at the heart of other definitions, such as the one provided by Hughes [9]. Cultural processes transmit across generations and produce behaviours that may be normal for a particular culture but abnormal for others. There is a social component to culture that is determined by social transmission of values that in turn influence social behaviours. DSM-IV [10] defines culture as meanings, values, systems and behavioural norms that are learned and transmitted in the dominant society and within its social groups. Furthermore, culture powerfully influences cognitions, feelings and concepts of self, along with diagnostic processes and treatment. More recent definitions [11] also see culture in broad terms, as a common heritage, learned set of beliefs, norms and values. Culture is thus a spiritual, physical and

CULTURE AND ITS INFLUENCE ON DIAGNOSIS AND MANAGEMENT

behavioural system that refers to what individuals learn, retain and utilize on a regular basis. Material

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.

.

aspects of culture may be easier to define and specify than spiritual aspects.

CULTURE AND ITS ROLE IN THE GENESIS OF DISTRESS

Tseng [12] notes that several hypotheses have been proposed, from a social psychiatric perspective, to explain observed variations in rates of mental disorder by social and cultural groups, from theories of social drift to theories of social cohesion. Tseng very cogently argues that there is little doubt that social and cultural factors influence psychopathology in an individual, but notes that the exact underlying processes remain unclear, and outlines six different possibilities through which culture can contribute to psychopathology: .

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Cultures can be directly pathogenic and cause psychiatric disorders. For example, cultural ideas and beliefs can contribute to stress, which in turn produces psychopathology. By contributing to an individual’s stress, culture can add a further layer of anxiety and depression. Such a contribution is seen, for instance, in patients with loss anxiety.

religious delusions may be influenced not only by one’s own religious world view but also by the majority religions around the individual. As Tseng [12] points out, the intensity and the degree of modification of symptomatology will be influenced to the degree that these disorders are seen as atypical, subtypes or variations of disorders officially recognized in Western classificatory systems. .

Some behaviours are universal across cultures whereas others may become exaggerated due to specific cultural influences. Tseng [12] suggests that such examples are where in Malaysia individuals provide social entertainment through being provoked on social occasions and acting as clowns and in Japan warrior suicide (hara-kiri).

.

Culture influences the frequency of occurrence of certain mental disorders in a population. These occurrences may change in response to changing factors in the culture. Tseng [12] goes on to illustrate this pathofacilitative effect of culture in cases of obsession with body weight and body shape, leading to dieting patterns and pathological eating patterns. Increased or binge drinking is another example.

.

Culture influences beliefs and understandings of disorders and moulds individuals’ reactions to disorder. Culture dictates how individuals perceive and understand pathology and how they react to it. Tseng [12] uses post-traumatic stress disorder as an example. He argues that here society perceives the disorder and reacts to its consequences with either sympathy or ignorance of the problem.

Culture can influence some individuals, who may have a pre-existing vulnerability, in such a way that their reactions to stress are pathological. This is seen, for example, in the Malaysian notion of amok, where a vulnerable individual is ‘expected’ to attack others to demonstrate his masculinity. Culture can modify symptoms. The contents of delusions, hallucinations, obsessions and phobias are all influenced by cultural and social factors. In the 1950s and 1960s delusions related to being poisoned by mustard gas were not uncommon and these were replaced by those to do with space and NASA, and then with those related to computers. The contents of

10.4

CULTURE AND MENTAL DISORDERS

It is apparent that not all mental disorders are influenced by culture to the same degree. The pathogenic effects of culture may be somewhat limited in organic mental

disorders but pathoplastic effects may be stronger. Similarly, in culturally influenced syndromes, pathogenic, pathoplastic and pathoreactive factors may play

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an important role [12,13]. In some cultures rates of suicide are high whereas in others these are low. Some of the discrepancy can be explained by religious factors and proscription of self-harm. However, it is also likely that some cultures have legal proscriptions

10.5

CULTURE AND ETHNICITY

Ethnicity is a narrower concept than culture. Ethnicity is often self-ascribed and refers to a sense of individual identity and belonging based on common origins and shared symbols and standards for behaviour [14]. Ethnicity, ethnic identity and ethnic groups are often used to describe assumed characteristics that may ‘identify’ the individual to others [15]. Thernstrom et al. [16] see ethnicity as both an internal sense of distinctiveness and an external perception of distinctiveness. These authors point out that the features of common geographic origin, language or dialect, and religion that transcend community boundaries are characteristics of ethnic groups. However, as Bhugra and Bahl [15] suggest, this definition lacks rigour.

10.6

against self-harm so it is very difficult to be absolutely certain of the exact rates. Similarly, in Mediterranean cultures, alcohol consumption may be high but rates of binge drinking and alcohol dependence may not, because culture normalizes such consumption.

Isawij [17] identified twelve characteristics of ethnicity of which the top five are: common ancestral origin; same culture or customs; religion; race or physical characteristics; and language. There may be an element of objectivity to this. However, the use of ethnic categories in epidemiological studies is often not uniform. The UK Office of Population Consensus and Surveys (OPCS now called the Office of National Statistics or ONS) introduced ethnic categories for the first time in the 1991 UK census. In subsequent censuses, the number of categories has increased and perhaps become more sophisticated. The Social Sciences Research Council [18] defined ethnic groups as past-oriented group identification, based on conceptions of cultural and social distinctiveness.

RACE, RACISM AND ITS EFFECTS

Race emerged as a concept in the nineteenth century to refer to certain assumed physical characteristics of groups [4]. Gaw [4] notes commonalities and overlaps between concepts of race, ethnicity and culture. Racism (i.e. discrimination of one group against another on the basis of perceived physical differences) is related to one group holding and exercising power through control of resources, including economic and educational. Racism is not a new phenomenon. The creation of the ‘other’ is crucial in coming to terms with one’s own identity. Bhugra and Bhui [19] argue that blunt applications of the word ‘racism’ perpetuate conceptual confusion. Racism may operate through overt beliefs and actions of the individual (active racism) or through less conscious attitudes in society as a whole (not offering housing, education, etc.) aversive racism [20]. As this suggests, there

are several types of racism dominative, aversive, cultural, pre- and post-reflecting gut racism, missionary racism, paternalistic or colour blind racism. Racism in clinical situations may lead to underdiagnosis, missed diagnosis or misdiagnosis, undertreatment or overtreatment. Race is both a biological and a social label. Clinicians from a minority group may experience racism from patients and staff who may belong to the majority group, thereby creating further tensions and strains in the therapeutic relationship and the power within such a relationship. Institutional racism has been defined as the systematic enforcement of discrimination and maintenance of the status quo by legal, cultural, religious, educational, economic, political, environmental and military institutions of society racism thus becoming an institutionalized form of personal attitudes [19]. Any attempt to understand and eradicate racism must

CULTURE AND ITS INFLUENCE ON DIAGNOSIS AND MANAGEMENT

focus on three levels: individual, intragroup and intergroup. Patients’ clinical experience has to be seen not only in the socioeconomic context but also in the political context. The debate about whether psychiatry and psychiatric services are institutionally racist is by no means over. In the UK at least this remains a

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controversial area (see Reference [21 25]). To blame every misfortune experienced by black and minority ethnic communities on institutional racism is as facile as to say that institutional racism is an exaggerated response to everything. Bhugra and Bhui [19] recommend steps for change.

MIGRATION

Migration is a universal phenomenon and has occurred throughout human history. A migrant is defined as someone who changes their place of residence for any purpose and for any period of time [26]. The duration of ‘migration’ becomes a problem in this definition. If someone goes away for a month’s holiday in another country, would that count as migration? Migrants are classified according to a number of potential factors, e.g. characteristics of migrants, motivation for migration and duration of migration. Certain occupations are inextricably linked with migration, such as military personnel, anthropologists, diplomats and students. It is inevitable that the impact of migration will differ across each occupational group, as will reasons and exact duration of migration. Another factor that is often not studied is the likelihood of return and circumstances of such an event. Demographic characteristics (e.g. age, gender, being primary migrant) and reasons for migration will all play a role in experiencing and in dealing with stresses related to migration. The individual’s response to stress will depend on the reason for migration and whether the migration was voluntary or involuntary. Whether the individual migrates alone or with others may well add to the stress. Those who are forced to migrate or who are extruded from one culture may find that adjustment to the new culture is essential for survival. Those who migrate for economic reasons may well face different stressors. Time taken to migrate may also affect adjustment. For example, those migrating as refugees and asylum seekers may be held in a suspended state for months before being given leave to remain, thereby adding to the stress being experienced. Some relocations are likely to involve extensive linguistic, ecological, political, technological, social and family changes, whereas with others

(e.g. migration within the same country) such changes may well be limited. Westermeyer [26] goes on to note that geographical distance can also affect the migrant’s ability to satisfy emotional needs by returning home at intervals. However, with recent changes in communication and social support styles (see Chapter 36) the sense of alienation and isolation may shift. When large differences exist between the new and the old residence, ecological changes related to unfamiliar systems, climate, modes of transportation, housing style and neighbourhood will all influence response to migration [26]. Communication and linguistic styles may add to the stress, and vocational changes may add to the frustration as well-educated and trained migrants may not find jobs in the field they want to, thereby causing a discrepancy in aspiration and achievement and producing a lowering of self-esteem. Understanding the new structures and learning about new social roles will take time and may also be influenced by generational differences. Legal status and challenges may need to be overcome. Culture conflict may occur in terms of one’s own cultural values coming into conflict with others, and also within one’s own culture, as some individuals may move faster in the process of acculturation. The differences between a primary migrant (one who is the ‘pioneer’ and migrates first) and those who follow will be multifaceted. As Westermeyer [26] points out, the reasons for moving to a new place are not necessarily the same reasons for staying in the same place. Rationales (and related stress) will change over time. Meszaros [27] suggested that migrants may respond to the act of migration by being overenthusiastic, inhibited, critical, perplexed or hyperactive. Berry [28] suggests that migrant adjustment styles may be to do with adjustment (movement towards), reaction (movement against) and withdrawal (movement

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away). Westermeyer [26] proposes that for a migrant’s adjustment four factors should be considered: the migrant’s personality, degree of difference or similarity, attitude of the new community and age of the migrant. Bhugra [29,30] suggests that at different stages of migration, coping strategies will include different strands and varying stressors. Therefore assessment at different stages of migration will need to be modified accordingly. After migration, settling down with others from the same culture may have its additional stressors. For sociocentric individuals from sociocentric countries, settling down in an egocentric country (if not surrounded by sociocentric individuals) may be more stressful. Communities may feel stress both at individual and group levels. Post-migration, there may be two peaks related to an increase in psychopathology. First, immediately after arrival, when the individual may be finding it difficult to adjust and, second, 10 12 years later when the individual has settled down but may not have achieved as much as he/she expected to. Again, this discrepancy in achievement and aspiration may lower self-esteem and lead to depression or other mental disorders [31]. Preparation for migration may alleviate some potential stressors. Learning about the new country and its customs, languages and weather may help the individual to adjust and also allow them to engage and teach others to cope. Migration is not a unitary experience and migrants are not a homogeneous group. However, they can suffer any or all of the mental disorders that nonmigrants may do. The role of culture becomes much more significant in migrants, especially if their acculturative processes are still in the process of transition. Various terms such as ‘culture shock’, ‘culture conflict’ and ‘cultural bereavement’ have been used in the migrant groups to understand their experiences of

10.8

Table 10.1 Possible questions for migrants’ migration experiences How long ago did the subject migrate? At what age did the subject migrate? Motives for migration? Difficulties in migration and its perceived reversibility? Preparedness? How great was the difference between the two cultures? Experience before and during the journey? Migrated alone or in a group? Intentions at the beginning about duration of stay? Attitude to culture of new country? The role of the new society in helping the subject to adjust? Previous life experiences?

migration and its sequalae. Clinical assessment of migrants is no different from that of other ethnic groups, but in addition a clear assessment of migration and its process may provide additional dividends in planning any intervention. Some questions on how to address migration are provided in Table 10.1. The attitude of the clinician, their awareness of their own prejudices and a nonjudgemental approach can provide the basis for a good rapport. The mistrust and feelings of alienation that migrants may be carrying with them must be dealt with before any shift can occur in treatment or the therapeutic alliance. From observation of migrants’ clothes and behaviour, which are likely to be influenced strongly by their culture, to linguistic differences and affect, the clinician must not take anything for granted. Social support systems may influence the process of acculturation, which in turn will affect the clinical encounter. Loss of control as an explanation of distress may enable some individuals to cope better if they see it is an external cause (i.e. it is in the stars or their fate) rather than an internalized one.

RACIAL LIFE EVENTS AND PSYCHIATRIC MORBIDITY

Life events are universal and their association with onset of certain psychiatric disorders and relapse of others is well known. However, interest in racial life events (life events that the patient or their carers attribute to their race or ethnicity) is relatively

recent [32]. These authors suggest that there seems to be an increasingly robust body of evidence highlighting the role of chronic stress and difficulty in the aetiology of common mental disorders across different cultural and ethnic groups. It is difficult to

CULTURE AND ITS INFLUENCE ON DIAGNOSIS AND MANAGEMENT

find the exact rates of race-related crimes, but as racial discrimination is not randomly distributed in society these events can add to chronic difficulties. There are several scales that measure experiences related to race

10.9

and racism (see Reference [32]). The relationship between race, racism and related life events and their impact on the mental health of individuals is complex and deserves to be explored further.

ACCULTURATION

Acculturation is the process of cultural and psychological change that takes place as a result of contact between cultural groups and their individual members [33]. This contact initially was a result of colonization, military invasions, migration and sojourning [34]. However, in the last decade or so, with increased access to international media and globalization, the process has become not only more evident but increasingly more rapid. The changes in both cultures coming into contact mean that both psychological and cultural shifts occur at individual, group and institutional levels. At an individual level, behavioural changes may well be associated with cognitive changes such that either immediately or in the long run attitudes and even the identity of individuals will shift. Berry [34] provides a helpful framework for understanding the processes and consequences of acculturation. Two cultures coming into contact are unlikely to be of the same level. Invariably one is going to be a dominant culture and the other one nondominant. At a cultural level the nondominant culture may therefore be decultured or it may be assimilated. Furthermore, depending upon a number of factors, the nondominant culture may become acculturated and its members may become bicultural. Linton [35] argues that change occurs both at covert and overt levels. The covert aspects focus on knowledge, psychological states, attitudes and values, and the overt aspects

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include behaviour. The levels of acculturation will rely on the degree of exposure, distance between the two cultures and the degree of willingness on the part of the individual to change [36]. Although acculturation occurs when two cultures come together and both will change to some degree, it is inevitable that the nondominant culture is likely to change more. It is helpful, therefore, for the clinician to be aware of acculturation and cultural identity so that the individual patient’s symptoms and distress can be understood in the context of their culture and suitable interventions set in place. Bhugra [37] suggests that cultural identity is also very closely linked with the concepts of the self, which are very clearly influenced by cultures and cultural values. The single most important question asked of an individual in order to understand their identity is ‘Who am I?’ [38]. The perception of the individual is linked with what they see as the context in which the question is being asked, and yet the identity can be psychological and fluid. The independent and interdependent construal can thus be measured through cognitive schemas (which may be more difficult to measure) and behavioural and motivational schemes (which may be easier to measure). The concept of the self is at the core of an individual’s being and its assessment, in line with changes related to acculturation, is helpful in understanding what is abnormal and what may well be pathological.

CULTURAL IDENTITY

Cultural identity is multilayered and is shaped by, among others, race, ethnicity, culture, language, gender, age, sexual orientation, religious values, socioeconomic status, migration and acculturation [39]. The language the patient chooses to communicate in is a significant part of the individual’s cultural identity. In bilingual

patients, psychopathology related to thought disorder may not be easily clarified if the patient’s primary language is not used in assessment. This also allows an understanding of the level of acculturation. The clinician must explore the degree of comfort the patient feels with any language, their knowledge of both written

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and spoken language and their preferred choice. However, the patient may feel embarrassed by the fact that they are not able to speak the language of the new society; hence the clinician must be sensitive to their needs. Levels of acculturation can be explored by asking about what they feel about their culture of origin, their attitudes and beliefs, their response to the values of the new culture, interactions with their own community and also with others from other communities. Experiences of discrimination must also be explored. Although every

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effort must be made to ask about discriminatory actions, perceptions of such discrimination must also be discussed. Cultural explanations of the individual’s illness must be discussed with the patient and their families (see Reference [40]). Cultural identity also includes religious beliefs and attitudes, which may change after the individual has come into contact with a new culture. Explanatory models (as discussed below) and their assessment may also enable the clinician to get an overview of cultural identity.

CULTURE AND CLINICIAN–PATIENT INTERACTIONS: EXPLANATORY MODELS

Weiss and Somma [41] point out that the idea of explanatory models of illness is often interpreted differently by various professions and professionals. The first notions of explanatory models appeared in the 1970s but the most influential proponent is Kleinman [42], who defined explanatory models as notions about an episode of sickness and its treatment that are employed by all those engaged in the clinical process. Explanatory models of patients, their carers and those of professional carers need to be studied and understood so that patients and their carers are engaged in the therapeutic process and the therapeutic alliance improved. Explanatory models are used to explain not only perceived causes or aetiology but also understandings of symptoms, pathophysiology, course of sickness and treatment. Explanatory models differ from general beliefs about sickness and are marshalled in response to a particular illness (see Reference [42]) and will therefore vary. Eliciting explanatory models provides an understanding of patients’ and their carers’ models about what they call the problem, what they see as its cause, why it appeared when it did, how the symptoms affect the individual and those around them, an understanding of the severity of the problems, foreboding about the symptoms, problems as a result of the symptoms, whether treatment is needed and if so what treatment, and what results are expected from the treatment. Weiss and Somma [31] examined 677 Medline references with the term ‘explanatory model’ or ‘explanatory models’ in their titles in 2006 and noted that explanatory models were usually described with reference ‘to a set of cognitive explanations, symptomatic, emotional and social experiences and

to prototypic personal history and associations that collectively characterized the illness at a particular point of enquiry’. Bhui and Bhugra [43,44] argue that there is a need for understanding explanatory models so that adherence to treatment can be strengthened, especially if the patient’s and family’s explanatory models are at variance with those of the clinicians. The understanding of the patient’s explanatory models does not need to be complicated. Bhui and Bhugra [44] suggest that even if explanatory models differ markedly between the clinicians and the patient, compromise is possible. Through understanding and making the patient feel listened to and allowing the patient to hang on to their views dialogue is made easier. If an impasse is reached, other strategies such as involving the family or community leaders may be used. Through such an exploration, permission is granted, which encourages and reassures the patient that it is possible to hold on to cultural values and views. Explanatory models have been assessed in epidemiological studies using qualitative instruments such as the EMIC [45] and the shorter SEMI [46]. Frameworks of explanatory models have been applied across ethnic groups [47] and cultural groups [48], in child psychiatry [49] and among the elderly [50], thus indicating that it is possible to use this model across conditions and age groups. As Weiss and Somma [41] emphasize, although illness explanatory models have developed in different ways with different formulations and concepts, they remain an important area of interest in cultural psychiatry. Bhugra and Cochrane [51] caution that heterogeneity of migrant groups and their models of perceived ill health are all important factors in

CULTURE AND ITS INFLUENCE ON DIAGNOSIS AND MANAGEMENT

help-seeking, as is their world view. Tseng [13] proposes that explanatory models change with industrialization. More traditional societies have supranatural or natural models whereas more ‘modern’ or industrialized societies may have mixed biological, psychological and social models. Thus it is inevitable that

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10.13.1

after all, abnormalities in the structure and functioning of body organs and systems. Thus illness is the shaping of biological and psychological symptoms into behavioural and social responses that affect not only the patient but also those around the individual. Societies and cultures have set standards for what is normal and abnormal and this is where the role of the psychiatrist in understanding and remaining within the social norms is a significant one. Cultural factors contribute differentially to the causation, formation and interpretation of abnormal behaviours. For a clinician to engage a patient effectively and form a therapeutic alliance, a knowledge of differentiations between disease and illness and an exploration of explanatory models to understand this distinction is crucial.

CULTURE, DIAGNOSIS AND CLINICAL CARE

Culture of the individual

In the therapeutic encounter between the patient and the clinician, their respective cultures and world views play a key role in therapeutic engagement and improving the therapeutic alliance. The idioms of distress employed by the individual are sanctioned by their culture. The patient’s expectations of the therapeutic encounter will dictate what information is handed to the clinician and what information is held back. Patients are interested in getting better quicker and thus carry models that may not match those of the clinician.

10.13.2

in some cases, following acculturation, attitudes, beliefs and explanations will change. Sociocentric beliefs, with an external locus of control, may lead to some protection against distress [36]. Patients will seek help from whichever source maps on to their understandings of the episode of illness.

DISEASE VERSUS ILLNESS

Eisenberg [52] differentiated between disease and illness. This distinction highlights not only the problems of the patient’s perceptions and expectations but also those of the clinician. Kleinman [42] suggests that disease (literally dis-ease) refers to a malfunctioning of biological and/or psychological processes whereas illness includes secondary personal and social responses to a primary malfunctioning (consequence of disease). Illness thus involves processes of attention, perception, affective responses, cognition and valuation (of symptoms and role impairment) directed at the disease and its malfunction. Eisenberg [52] points out that patients suffer from illnesses and seek treatment for these whereas doctors (by virtue of their training and experience) diagnose and treat diseases that are,

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Culture of the organization

The setting where therapeutic encounters take place is also important. However, often not much attention is paid to this. The purpose of the therapeutic encounter may be to offer a diagnosis, commence investigations

or initiate management. It may be that the clinician is carrying out an assessment of compulsory detention and the culture of the organization may dictate how, where and when such encounters take place. In addition, the notion of the culture of the organization allows both the patient and the clinician to explore and mould their own responses in a way that enhances joint working. Along with geographical accessibility to the organization, emotional accessibility by the patient is a useful concept that clinicians and service providers need to be aware of. This in turn indicates an openness on the part of the organization and a willingness to be culturally sympathetic to patients and their carers.

10.13.3

Culture of the clinician

Not only do the cultural values and cultural prejudices of the clinician influence the interaction, other factors such as age, previous experience and gender,

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Patient (symptoms)

Doctor (signs)

Class Race Gender Culture

Training

Concepts of disease

Expectations

Age Training

Experience

Social status

Figure 10.1 Therapist client interaction and influencing factors

Cultural affilliation

Verbal Non-verbal

along with explanatory models, may play a role (see Figure 10.1). Although the figure shows an equal and balanced interaction, in reality it is not. The power lies with the clinician who can deprive the patient of their liberty, thereby creating an underlying and unstated tension. An awareness of both verbal and nonverbal communications in a specific culture will go a long way towards establishing a therapeutic alliance. The patient’s physical placement and activity during the interview, i.e. nonverbal communication along with facial expressions and gesticulations, reflect the influence of culture [26]. Hall [53] described the diverse means by which members of different cultures communicate with one another nonverbally (a field termed kinesics) and use space (a field called proxemics). There are often similarities in the way these two fields are used by members of the same culture and how these differ from other cultures. It is likely that one or both of these fields may change for individuals who come into contact with other cultures, as a result of the process of acculturation. Westermeyer [26] also notes that kinesic and proxemic behaviours do vary between American psychiatric patients in comparison with American nonpsychiatric subjects, and thus if other cultures are added to this, interactions clearly become much more complex and multifaceted. Some cultures will see direct eye contact as demonstrating honesty and openness, but the same eye contact can indicate anger or disrespect in other

Concepts of illness

Expectations

Social status

Communication

Folk culture Knowledge Education Race Class Gender

Verbal Non-verbal

Experience

Cultural affilliation

cultures. Similarly, in some cultures, being in close physical proximity indicates closeness, whereas in others it may be seen as invading one’s personal space. In initial clinical contact, Westermeyer’s [26] advice is worth remembering he suggested that clinicians should ignore their initial clinical instincts regarding the patient’s gesticulations, affect, dress and mannerisms so that no mistakes are made in reaching assumptions. Mental state examination and its interpretation depends on the knowledge of the patient’s early socialization, culture of origin, patient’s educational level and literacy, and the acculturation process [26]. For something simple like assessing orientation, not only calendars vary but seasons and time of the day may not always be clear. It has been shown that in many rural areas time is measured by which programme is on television. Similarly, proverbs used to evaluate abstract thinking will be very heavily influenced by the culture and language. Education and life experiences will play a significant role in communication across cultural boundaries. Educated patients, irrespective of their culture, may well have more in common with clinicians than those who are illiterate. While reaching a clinical diagnosis of mental illness in a patient from a different culture, the clinician must take into account not only the culture of the patient and that of the organization but also their own prejudices and world view. They must recognize whether a specific cluster of symptoms,

CULTURE AND ITS INFLUENCE ON DIAGNOSIS AND MANAGEMENT

signs and resulting behavioural changes are interpreted by the patients, their families and community as pathological or not. Cultures are never static and the dynamic process of acculturation at both individual and community levels means that the patient’s world view may well

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keep changing, and the clinician needs to be aware of this possibility. Furthermore, patients and their families may still be using folk remedies that may interact with Western allopathic treatments. In addition, even among dominant communities, folk models of care may exist and need to be explored.

CULTURE AND PSYCHOTHERAPY

Psychotherapy across cultures brings with it challenges of its own. Embedded within such a challenge are the role of gender and age. Deeply held beliefs, values and concepts of the therapist and the patient are very strongly influenced by a number of factors. Depending upon the type of psychotherapy, the interaction between the therapist and the patient will vary. For example, in some cultures, due to strong notions of shame, sitting in a group situation and talking of family problems may prove anathema to the patient, whereas in others, letting it all ‘hang out’ will not only be acceptable but highly valued. Social activities such as going on dates or preparing for such an eventuality may be problematic for some cultures where, for example, restrictions in social interactions may apply. Psychotherapy itself is a cultural construct. Combining this with social constructs of race, ethnicity and culture adds several dimensions, which may make it difficult for the therapist to carry out assessment and therapy. When the patient and the therapist are from two different cultures whether one belongs to the majority culture or whether both belong to minority cultures this will determine perceptions and engagement from both sides. Moodley and Palmer [54] point out that even though sociocultural and political ideas of race, culture and ethnicity have been considerations in counselling psychotherapy they have also often been marginalized or ignored. Bhugra and Bhui [55] suggest that although psychotherapies are based on differing theoretical standpoints, the majority relieve distress using models of therapy developed in the West using Western perspectives of the mind, illness, emotions and healing. These authors argue that ethnocentrism on the part of the therapist may well lead to disengagement on the part of the patient. Embedded in such a dialectic is the imbalance of power, which is on

the side of the therapist. The type of communication and interpretation will be influenced by this power disparity. In settings where family work is being carried out and families have different cultures, the relationship will become different. The therapeutic alliance needs to be understood in a number of dimensions in psychotherapeutic settings. As the therapist contributes to this alliance by virtue of their age, experience, training, gender and culture, the patient brings material to the sessions that is equally affected by these factors. The patient’s capacity to form a therapeutic alliance will be influenced by their cultural alliances and acceptance of different schools of thought. Some Western egocentric therapies may be anathema to some patients and appropriate adjustments may need to be made. With cognitive or behavioural therapies, the essential homework that is often part of these may carry connotations of control that some patients may find difficult to deal with. The three components of this alliance are the therapist, the patient and the disorder itself [56]. In the patient’s case a process of organizing information and reflecting on it along with negotiations of conflict are important factors. As the therapeutic relationship progresses, the initial directiveness may give way to joint involvement and working, which may be less acceptable to the patient. In particular, specific techniques used in each therapy may have to be modified. Behavioural tasks may be seen as intrusive or pushy, producing feelings of frustration. On the other hand, total flexibility and passivity on the part of the therapist may be interpreted by the patient as incompetence, since the patient may be looking for clearer direction. Psychotherapy in many forms is a Western invention, especially in its egocentric form. In other

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cultures, using religious discourses and scriptures, suggestions can be made to change lifestyles and deal with stress. Whatever the model of therapy, Bhugra and Bhui [55] assert that the patient’s motivation and expectations are important. The patient’s image of the therapist may deploy that of a master, and each encounter is seen through this prism. Both patient and therapist have to agree on the rationale for therapy that can be converted into a therapeutic plan. Ethnic matching of the therapist and the patient is not as important as is their shared world view. As it is, psychotherapies are not easily available to patients from minority cultures, at least in the UK; if we were

10.15

to look for ethnic matching it would make this slim possibility even rarer. The relationship process between the therapist and the patient needs to be explored further, especially if they are from different cultures; not only the outcomes but also the process of therapy needs to be investigated. Psychotherapists are similar to anthropologists in that their work often leads to the same insights at a personal level [57]. All effective treatments, whether these are Western style psychotherapies or traditional healing, must be based on the right kind of relationship between the patient and the therapist with the right kind of ambience.

CULTURE AND PHARMACOTHERAPY

It is not proposed to discuss details of ethnopsychopharmacology or pharmacodynamics and pharmacokinetics of drugs in this chapter (for details see References [58] and [59]). Only a few principles will be highlighted here, especially those that are going to be useful in understanding social psychiatry. Lin et al. [60] suggest that treatment decisions are often not individualized but the choice of medication and dosages are largely based on ‘trial and error’ practice. There is no doubt that ethnicity and culture powerfully determine the individual’s pharmacological response [61]. These responses are a result of both environmental and genetic factors and perhaps an interaction between the two. Lin et al. [60] note that, of even greater importance, the success of any therapy (including pharamacotherapy) depends upon the relationship between the patient and the therapist. Significant variations in drug response across ethnic groups exist. Dietary habits affect pharmacokinetics as these change the body’s ability to absorb, distribute and metabolize medication. After migration, with resulting changes in diet as part of the acculturation process, rates of metabolism of different compounds also change. Smoking also influences absorption and metabolism of some drugs. In addition, drug drug interaction may lead to interference with absorption, synergy of therapeutic pharmacological effects (or that of side effects) and interactions with drug metabolism [62].

Amongnonbiologicalfactorsthatmayplayarole,Lin et al. [60] point out that the expectation effect (including the placebo effect, clinician ideology, past experiences, religioustaboos,etc.)powerfullydeterminesthesuccess or failure of any pharmacological treatment. Use of complementary medicine in some cultures is more prominent, especially if such systems of medicine emerged from these countries. For example, the Ayurvedic system of medicine in India and the system of traditional medicine in China are used extensively, both in those countries and among the diaspora. Patients may also believe that medicines from natural sources are nontoxic and nonaddictive or noninvasive [62] and perhaps safer. Thus these medications are used commonly in less severe and chronic mental disorders such as sleep, anxiety or neurasthenia. Sociocultural, illness and biological factors all affect an individual’s attitudes towards medication [63]. Health explanatory models can play a subtle role in engaging the patient with the clinician. These authors suggest that stigma, attitudes of significant others and individual preferences all play a role [64]. Cognitive and behavioural effects of medication across cultural groups have not been studied and deserve to be. The occurrence of placebo response, as well as demand for pills from certain cultural groups, indicates that different individualized pathways into care deserve to be explored so that any care provided will be culturally accepted.

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CONCLUSION

The impact of culture on the mental health of individuals, their idioms of distress and help-seeking cannot be underestimated. When both the patient and the clinician come from different cultures, their interaction depends upon a number of factors. Equally, the process of interaction plays a significant role in the therapeutic alliance and the success of the therapy, whether it is psychotherapy or pharmacotherapy. Patients’ experiences and perceptions play a significant role in the therapeutic engagement. Cultural psychiatry, although existing for several decades, is only now coming together as a discipline that fits into and sits alongside the study of the social aspects of aetiology and management of mental disorders.

REFERENCES 1. Kirmayer, L. (2007) Cultural psychiatry in historical perspective, in Textbook of Cultural Psychiatry (eds D. Bhugra and K. S. Bhui), Cambridge University Press, Cambridge. 2. Kroeber, A. and Kluckholm, C. (1952) Culture: a critical review of concepts and definitions, Papers of the Peabody Museum (cited in A. C. Gaw, 2001), in Concise Guide to Cross Cultural Psychiatry, Ame rican Psychiatric Publishing, Washington, DC. 3. Tylor, E. (1871) Primitive Culture, Estes and Lauriat, Boston, Massachusetts. 4. Gaw, A. C. (2001) Concise Guide to Cross Cultural Psy chiatry, American Psychiatric Publishing, Washington, DC. 5. Eagleton, T. (2000) The Idea of Culture, Blackwell, Oxford. 6. Kuper, A. (1999) Culture: The Anthropologist’s Account, Harvard University Press, Cambridge, Massachusetts. 7. Boas, F. (1982) Summary of the work of the committee in British Columbia, in A Franz Boas Reader: The Shaping of American Anthropology (ed. G. Stocking Jr), University of Chicago Press, Chicago, Illinois, pp. 1883 1911. 8. Goodenough, W. H. (1961) Comments on a cultural revolution. Daedalus, 90, 521 528.

9. Hughes, C. C. (1992) Culture in clinical psychiatry, in Culture, Ethinicity and Mental Illness (ed. A. C. Gaw), APA Press, Washington, DC, pp. 1 41. 10. APA (1994) DSM IV, American Psychiatric Associa tion, Washington, DC. 11. DHSS (2001) Mental health, culture, in Race and Ethnicity A Report of the Surgeon General, US DHSS, Rockville, Maryland. 12. Tseng, W. S. (2007) Culture and psychopathology, in Textbook of Cultural Psychiatry (eds D. Bhugra and K. S. Bhui), Cambridge University Press, Cambridge. 13. Tseng, W. S. (2001) Handbook of Cultural Psychiatry, Academic Press, San Diego, California. 14. Harwood, A. (ed.) (1981) Ethnicity and Medical Care, Harvard University Press, Cambridge, Massachusetts. 15. Bhugra, D. and Bahl, V. (1999) Ethnicity issues of definition, in Ethnicity: An Agenda for Mental Health (eds D. Bhugra and V. Bahl), Gaskell, London, pp. 1 6. 16. Thernstrom, S., Orlov, A. and Handlin, O. (eds) (1980) The Harvard Encyclopaedia of American Ethnic Groups, Harvard University Press, Cambridge, Massachusetts. 17. Isawij, W. (1974) Definitions of ethnicity. Ethnicity, 1, 111 124. 18. SSRC (1974) Comparative Research on Ethnicity, Social Sciences Research Council, New York. 19. Bhugra, D. and Bhui, K. S. (1999) Racism in psychia try: paradigm lost and paradigm regained. Interna tional Review of Psychiatry, 11, 236 243. 20. Dolan, B., Polley, K., Allen, R. and Norton, K. C. (1991) Addressing racism in psychiatry. International Journal of Social Psychiatry, 37, 71 79. 21. Singh, S. P. (2007) Institutional racism in psychiatry: lessons from inquiries. Psychiatric Bulletin, 31, 363 365. 22. Murray, R. M. and Fearon, P. (2007) Searching for racists under the psychiatric bed: Commentary on. . . Institutional racism in psychiatry. Psychiatric Bulletin, 31, 365 366. 23. Patel, K. and Heginbotham, C. (2007) Institutional racism in mental health services does not imply racism in individual psychiatrists: Commentary on. . . Institu tional racism in psychiatry. Psychiatric Bulletin, 31, 367 368. 24. McKenzie, K. and Bhui, K. (2007) Better mental healthcare for minority ethnic groups moving away

130

25. 26.

27.

28. 29. 30. 31.

32.

33.

34.

35. 36.

37.

38.

39.

40.

COMPONENTS OF THE SOCIAL WORLD

from the blame game and putting patients first: Com mentary on. . . Institutional racism in psychiatry. Psy chiatric Bulletin, 31, 368 369. Singh, S. P. (2007) Institutional racism in psychiatry: author’s response. Psychiatric Bulletin, 31, 370. Westermeyer, J. (1989) Psychiatric Care of Migrants: A Clinical Guide, American Psychiatric Press, Washington, DC. Meszaros, A. F. (1961) Types of displacement reactions among the post revolution Hungarian immigrants. Canadian Psychiatric Association Journal, 6, 9 19. Berry, J. (1976) Human Ecology and Cognitive Styles, Sage Halstead, New York. Bhugra, D. (2000) Migration and cchizophrenia. Acta Psychiatrica Scandinavica, (suppl. 407), 68 73. Bhugra, D. (2004) Migration and mental health. Acta Psychiatrica Scandinavica, 109 (4), 243 258. Bhugra, D., Bhui, K., Mallett, R. et al. (1999) Cultural identity and its measurement. International Review of Psychiatry, 11, 244 249. Bhugra, D. and Ayonrinde, D. (2001) Racial life events and psychiatric morbidity, in Psychiatry in Multicul tural Britain (eds D. Bhugra and R. Cochrane), Gaskell, London, pp. 91 111. Redfield, R., Linton, R. and Herskovits, M. J. (1936) Memorandum on the study of acculturation. American Anthropologist, 38, 149 152. Berry, J. (2007) Acculturation and identity, in Textbook of Cultural Psychiatry (eds D. Bhugra and K. S. Bhui), Cambridge University Press, Cambridge. Linton, R. (1945) The Cultural Background of Person ality, Appleton Century Croft, New York. Bhugra, D. (2005) Cultural identities and cultural con gruency: a new model for evaluating mental distress in immigrants. Acta Psychiatrica Scandinavica, 111 (2), 84 93. Bhugra, D. (2001) Acculturation, cultural identity and mental health, in Psychiatry in Multi Cultural Britain (eds D. Bhugra and R. Cochrane), Gaskell, London. Cousins, S. D. (1989) Culture and self perception in Japan and the United States. Journal of Personality and Social Psychology, 56, 124 131. Ton, H. and Lim, R. F. (2006) The assessment of culturally diverse individuals, in Clinical Manual of Cultural Psychiatry (ed. R. F. Lim), APPJ, Washington, DC. Lim, R. F. (2006) Clinical Manual of Cultural Psy chiatry, APPJ, Washington, DC.

41. Weiss, M. and Somma, D. (2007) Explanatory models in psychiatry, in Textbook of Cultural Psychiatry (eds D. Bhugra and K. S. Bhui), Cambridge University Press, Cambridge. 42. Kleinman, A. (1980) Patients and Healers in the Context of Culture, University of California Press, Berkeley, California. 43. Bhui, K. S. and Bhugra, D. (2002) Explanatory models for mental distress: implications for clinical practice and research. British Journal of Psychiatry, 181, 6 7. 44. Bhui, K. S. and Bhugra, D. (2004) Communication with patients from other cultures: the place of explanatory models. Advances in Psychiatric Treatment, 10, 474 478. 45. Weiss, M. G., Doongaji, D., Sidhartha, S. et al. (1992) The explanatory model interview catalogue (EMIC). British Journal of Psychiatry, 160, 819 830. 46. Lloyd, K. R., Jacob, K. S., Patel, V. et al. (1998) The development of the Short Explanatory Model Interview (SEMI) and its use among primary care attenders with common mental disorders. Psychological Medicine, 28 (5), 1231 1237. 47. Sheikh, S. and Furnham, S. (2000) A cross cultural study of mental health beliefs and attitudes towards seeking professional help. SPPE, 35, 326 334. 48. McCabe, R. and Priebe, S. (2004) Explanatory models of illness in schizophrenia: comparison of four ethnic groups. British Journal of Psychiatry, 185, 25 30. 49. Ho, T. P. and Luk, C. (1997) Comparison of child psychiatric patients in hospital and community clinics in Hong Kong. General Hospital Psychiatry, 19, 362 369. 50. Pang, K. Y. (1998) Symptoms of depression in elderly Korean immigrants: narration and the healing process. Culture Medicine and Psychiatry, 22, 93 122. 51. Bhugra, D. and Cochrane, R. (2001) Psychiatry in a multi ethnic context, in Psychiatry in Multicultural Britain (eds D. Bhugra and R. Cochrane), Gaskell, London. 52. Eisenberg, L. (1977) Disease and illness: distinction between professional and popular ideas of sickness. Culture Medicine and Psychiatry, 1, 9 23. 53. Hall, E. T. (1959) The Silent Language, Doubleday, Garden City, New York. 54. Moodley, R. and Palmer, S. (2006) Race culture and other multiple constructions: an absent presence in psychotherapy, in Race Culture and Psychotherapy (eds R. Moodley and S. Palmer), Routledge, London.

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55. Bhugra, D. and Bhui, K. S. (2006) Psychotherapy across the cultural divide, in Race Culture and Psy chotherapy (eds R. Moodley and S. Palmer), Routle dge, London. 56. Rush, L. (1985) The therapeutic alliance in short term directive therapies, in APA Annual Review 4 (eds R. E. Hales and A. Frances), APA, Washington, DC, pp. 562 572. 57. Bhugra, D. and Tantam, D. (1998) Psychotherapy, cul ture and ethnicity, in Clinical Topics in Psychotherapy (ed. D. Tantam), Gaskell, London, pp. 241 255. 58. Lin, K. M., Poland, R., Nagasaki, G.et al. (eds) (1993) Psychopharmacology and Psychobiology of Ethnicity, APA Press, Washington, DC. 59. Ng, C. H., Lin, K. M., Singh, B. S. and Shiu, E. (eds) (2008) Ethnopsychopharamacology, Cambridge Uni versity Press, Cambridge.

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60. Lin, K. M., Chen, C. H., Yu, S. H. and Wang, S. C. (2008) Culture and Ethnicity in Psychopharmacology (eds C. H. Ng et al.), Cambridge University Press, Cambridge. 61. Lin, K. M. and Poland, R. E. (1995) Ethnicity culture and psychopharamacology, in Psychopharmacology: Fourth Generation of Progress (eds F. E. Bloom and D. J. Kupfer), Raven Press, New York. 62. Yu, X. (2008) Complementary medicine in mental disorders, in Ethno Psychopharamacology (eds C. H. Ng, K. M. Lin, B. S. Singh and E. Chiu), Cambridge University Press, Cambridge. 63. Ng, C. H. and Klimidis, S. (2008) Cultural Factors and the Use of Psychotropic Medication (eds C. H. Ng et al.), Cambridge University Press, Cambridge. 64. Bhugra, D. (2002) Migration and depression. Acta Psychiatrica Scandinavica, (suppl. 418), 67 72.

11 Culture and identity Julian Leff Institute of Psychiatry, King' s College London, London, UK

In the image of a pebble thrown into a pond, invoked in Chapter 1, culture occupies the outermost circle of influences from the social environment. This does not signify that culture is peripheral to the individual, nor that it is weaker than more proximal influences. On the contrary, culture pervades every aspect of a person’s life and social relationships, from the food they eat and the utensils they eat with, to the deity they worship. Investigating the nature of culture is then a mammoth undertaking, which would be beyond the means of a single researcher if the intention were to be compre-

11.1

hensive. Identity is another multifaceted concept. A person’s sense of being a unique individual is a composite derived from the various roles he/she occupies: woman, man, child; mother, daughter, grandfather, aunt; doctor, undertaker, plumber, and so on. However, culture is a major determinant of identity and throughout history has been responsible for wars, civil and international, slavery, persecution and genocide. In this chapter we will focus on a person’s cultural identity and its relationship to the development of psychotic illnesses.

THE MEASUREMENT OF CULTURAL IDENTITY

Before reviewing the instruments developed to measure cultural identity, it is necessary to define the key terms used by researchers in this area. Research has been spurred by the mass migration of peoples during the twentieth century as a result of world wars, civil strife (‘push factors’) and of seeking a better life by those in conditions of hardship in their country of origin (‘pull factors’). In 2003 the Office of the United Nations High Commissioner for Refugees estimated that 38 million people were displaced worldwide. Migrant groups find themselves brought into close proximity with the people forming the host culture.

Influences flow in both directions, although the stronger flow is usually from the established culture to the newcomers. However, it is evident in the UK that the eating habits and musical taste of the British have been strongly influenced by migrant groups. Curry has displaced fish and chips as the most popular food, while African-Caribbean music has become a dominant idiom in popular music. Migrants can respond in various ways to the pervasive influence of the host culture. They may strive to maintain their own traditional culture and distance themselves from their hosts (separation) [1], they can

Principles of Social Psychiatry, second edition Edited by Craig Morgan and Dinesh Bhugra Ó 2010 John Wiley & Sons, Ltd.

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attempt to acquire the characteristics of the host culture or they may make an effort to straddle both cultures. These possibilities were formulated by Szapocznik and Kurtines [2] in terms of acculturation occurring along two independent dimensions: an accommodation to the host culture and a complex process of retaining or relinquishing the characteristics of the culture of origin. Whichever strategy members of the minority culture adopt, the outcome cannot be independent of the response of the majority culture to them. Members of minority ethnic groups can be either accepted (mainstreamed) or rejected (alienated/marginalized) by the majority indigenous cultural group [3]. The position of the minority ethnic group in the structures of the host society is determined by the level of acceptance by the majority culture. How far a migrant is included or excluded is based on a set of criteria used by this core group in a multifaceted way. These include a range of socioeconomic factors, but in most societies those farthest from the colour and/or culture of the majority group are often the most marginalized [4,5]. In ‘Mister Pip’, a novel about the only white man on an island populated by black people [6], in teaching the island’s children about colours, Mr Watts announces that ‘Above all. . .white is a feeling.’ After reflecting on this for a while, he adds, ‘This is true. We feel white around black people.’ One of the children pipes up, ‘We feel the same. . .We feel black around white people.’ Individuals who choose to reject completely the values and customs of their culture of origin and aspire to assimilate into the majority culture, but are rejected by its representatives, become marginalized. Goldberg [7] defined a marginal individual as one who is on the margin of two cultures that are in permanent contact, but who belongs to neither. It can be argued that marginality itself constitutes a culture. Green [8] concurred in considering that there are advantages to marginality, and proposed that it only has adverse effects on the individual if he/she internalizes the conflict between the cultures. Park [9], one of the earliest commentators on acculturation, suggested that marginality led to psychological conflict, a divided self, and a disjointed person. Szapocznik and Kurtines [2] introduced the term ‘biculturalism’ to designate the position of individuals

who feel comfortable in both cultures. La Fromboise and colleagues [10] point out that while minority groups usually become assimilated into the majority group at the price of their ethnic identity, biculturalism grows out of an ability to alternate between two cultures. They argue that greater control over relationships with the majority culture reduces the likelihood of experiencing the negative effects of acculturation stress. Conversely, if the attempt to assimilate is vigorously resisted by the dominant group, then the individual is constrained to occupy a marginal position, unless he/she re-establishes a connection with their original cultural group. It follows from this discussion that in order to identify biculturalism an instrument designed for the study of ethnic minority groups must be able to identify the individual’s strength of adherence to their culture of origin and also their facility in operating in the majority cultural group. Many research groups have developed their own instruments, usually targeted at particular minority ethnic groups, and most of the work has been conducted in the multicultural societies of the US, Canada or Australia New Zealand. Rogler [11] points out that acculturation scales are often based on bipolar models, which force respondents to choose between more of one culture and less of the other. As a consequence, ‘increments in the acquisition of host society cultural elements are taken to signify proportionate decrements of cultural elements brought from the society of origin, a zero-sum process’. This format of a scale makes it impossible to detect biculturalism. To measure biculturalism Szapocznik and Kurtines [2] modified their original 1978 acculturation scale by separating it into two independent scales, one for each culture (Cuban/white American). Thus a bipolar scale was replaced by two parallel scales, one measuring the degree of involvement in the host culture, the other in the culture of origin. This approach was also promoted by Burnam et al. [12] who suggested that individuals who were high on both scales could be considered truly bicultural, while those who scored low on both scales would be marginal. The scale they developed consisted of 26 items, half of which concerned language, a characteristic of many of the existing scales. Factor analysis suggested a unidimensional scaling of the 26 items,

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indicating that this instrument cannot be used to assess biculturalism. Some researchers have made the questionable assumption that mastery of the hosts’ language is the key indicator of acculturation. However, there are many aspects of life that can be affected by or untouched by contact with the host culture. Fluency in the host language will undoubtedly increase the likelihood of employment in a host enterprise, and hence increase contact with the ethnic majority, but can have opposite effects on well-being. A study of Southeast Asian refugees to Canada [13] found that after ten years in the country, English language fluency was a significant predictor, not only of employment but also of depression, particularly for women. Job security and an increased income are conducive to peace of mind, but increased exposure to the hosts can entail risks of adopting injurious behaviours. Substance abuse was much more common among Mexican Americans born in the US than in Mexican American immigrants, and this was particularly dramatic for women [14]. Oetting and Beauvais [15] argue against scales that are focused on one area of interaction between two cultural groups in contact. They criticize two-dimensional research models of acculturation for shaping the way most data are gathered and the results achieved, and instead propose a multidimensional model of acculturation, which emphasizes that there is no limit to the combinations of cultural identification or changes. Any study that involves more than a single ethnic group requires a measure of acculturation, which inquires into a comprehensive range of attitudes, preferences, activities and behaviours and is applicable

11.2 11.2.1

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across several ethnic groups. There have been several attempts to measure acculturation in two or more different ethnic minorities simultaneously. Clark et al. [16] used an innovative approach of including a picture identification test to supplement questions on attitudes and participation in cultural activities. The pictures represented the cultures of white Americans, Japanese and Mexicans, and included images of traditional cultural artefacts, well-known locations, typical foods, popular figures and historical personages. These researchers used the measure to assess Japanese Americans and Mexican Americans. They identified six different profiles, which they interpreted as representing different styles of bicultural life. Since each type of profile contained members of both ethnic groups, the researchers argued that the types are generalizable beyond a single ethnic group. Their approach to data analysis and interpretation is relatively unsophisticated, which is a pity given their unique pictorial test. It is clear that some of the emic pictures would have been unrecognizable to members of the other ethnic group. This is an unavoidable feature of a ‘universal’ acculturation scale. Berry [17] considers that there is limited possibility of creating a ‘standard’ acculturation measure that can be used with every acculturating group, because there are many unique features to each acculturation situation, including the differing nature of the domains that are issues between them. While this is undoubtedly correct, it may still be possible to identify sufficient commonality between the main concerns of two or more minority ethnic groups in contact with the same majority culture to develop a ‘standard’ schedule applicable across the groups, albeit with some group-specific sections.

DEVELOPMENT OF THE CULTURE AND IDENTITY SCHEDULE (CANDID 1) Background to the study

Reviews of the literature on migrants and their offspring have shown that almost all ethnic minority groups living in a host society have elevated incidence rates of schizophrenia [18]. However, the excess of psychoses, both schizophrenia and mania, among African-Caribbeans in the United Kingdom (UK) is remarkable. The largest epidemiological study to date,

Aetiology and Ethnicity in Schizophrenia and other Psychoses (AESOP), has produced incidence rates nine times that of whites for schizophrenia and eight times for mania [19]. An earlier study [20] found that the incidence of schizophrenia in South Asians in the UK (3.7 per 1000, CI 2.6 4.3) was only slightly elevated compared to that of whites (3.0 per 1000, CI 2.1 4.0). The disparity in incidence rates between South Asians and African-Caribbeans, both ethnic

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minority groups living in a predominantly white country, demanded an explanation. The Culture and Identity Schedule was developed specifically to test the hypothesis that African-Caribbean patients with schizophrenia would prove to be marginalized, whereas South Asian patients would be deeply rooted in their traditional culture. This hypothesis required the development of a schedule that could be used in both cultures, allowing direct comparison of the patients and a group of matched, mentally healthy controls. The structure of the schedule was sketched out initially before being tested in field studies. An extensive range of areas of life was included [21]: selfascription of ethnicity, religious practices, language usage, attitudes to marriage and relationships, decisions about family matters, responsibility for children, education, employment, housing, leisure and social interaction, links with the country of origin or descent, food and role models in public life. The completed schedule contains 15 sections. It was necessary to add a domain to the Asian version that was not relevant to the African-Caribbean culture, namely attitudes to arranged marriages. Two versions of the schedule were prepared, one in English for African-Caribbeans and the second for the South Asians, all of whom were from India, in Hindi and Punjabi. Bhugra, from north India himself, translated and tested the South Asian version, while Mallett, from Barbados, tested the African-Caribbean version. Each schedule was discussed with community and religious leaders and was piloted on a number of individuals and modified accordingly. The two ethnic versions were then employed in the Ethnicity and Psychosis Study (EPS) [22]. The design of this case-control study was epidemiological, cases being ascertained when they made a first contact with the psychiatric services. Two catchment areas were screened for potential cases, one in south-east London with a large AfricanCaribbean population, the other in west London with a predominance of South Asians. Over the course of the study 100 patients were collected with a research diagnosis of schizophrenia, who were making contact with the psychiatric services in the two catchment areas for the first time. Of these, 38 were white, 38 African-Caribbean and 24 Asian, according to their

self-ascribed ethnicity. Two patients of mixed ancestry were excluded from the study. Each patient was matched with a healthy control subject on age, sex and ethnicity, providing a total of 200 subjects. Control subjects were selected using a multistage quasi-random sample design with clustering and stratification, which included the nonprobability modified random walk method developed by Brown and Ritchie [23]. The controls were selected from the general population living in the same areas as the patients. The CANDID 1 schedule was administered to each case and control belonging to the two minority ethnic groups, yielding 76 AfricanCaribbean subjects and 48 South Asians. A principal components analysis was conducted on the African-Caribbean and South Asian data sets. The two versions of the CANDID 1 schedule proved to have similar factor structures and a considerable congruence of items with high loadings on the factors [24]. This indicates the possibility of using the same instrument, albeit with the additional section on arranged marriage, to compare cultural attitudes and behaviour across these two ethnic groups.

11.2.2

Comparison of control subjects across ethnic groups

Direct comparison of the African-Caribbean and South Asian control subjects was possible on 11 sections of the CANDID 1 schedule, there being insufficient data on the other four sections; for example, the section on marriage could only be completed for the four African-Caribbean controls who were married. In each section two scores were obtained by summation, generating a traditional score and a nontraditional score. The expectation was that the South Asian controls would score more highly on traditional scores than the African-Caribbeans, and this proved partly to be the case. The comparison of traditional scores showed that South Asian controls were considerably more traditional than African-Caribbean controls in their practice of religion, their use of language and their leisure activities. However, the African-Caribbeans were more traditional than South Asians in their attitudes to relationships with white

CULTURE AND IDENTITY

people, their food-shopping and eating habits and their wish to retire to their lands of origin. The comparison of nontraditional scores showed that South Asians were more nontraditional than African-Caribbeans in their attitudes to relationships with white people and in their use of language, while African-Caribbeans were more nontraditional in their practice of religion. The most surprising finding was that the AfricanCaribbeans were more reluctant to form relationships with white people than South Asians. In view of the enduring custom of arranged marriages among the UK South Asian community, it was anticipated that they would not favour relationships with white people. The explanation may lie in the commercial relationships between South Indian shopkeepers, who often run convenience stores in British towns, and their white customers. In addition, the unprovoked murder of the African-Caribbean student Stephen Lawrence by a group of white racist youths has had a profound alienating effect on the UK African-Caribbean community. The findings concerning food-shopping and cuisine may be related to white eating habits, as curries are the most popular dish for British whites and are readily available in every town in the UK, through Indian restaurants and a large variety of precooked curries in supermarkets. By contrast, Caribbean foodstuffs and restaurants are restricted to a few centres in the larger cities and are rarely used by whites. The assimilation of Asian food into white eating habits is a prime example of the reverse flow of culture from a minority to a majority ethnic group. To assess the ability of the schedule to discriminate between traditional and nontraditional attitudes and customs, the scores on these two scales were compared. In two sections, the practice of religion and relationships with white people, the nontraditional scores were the mirror image of the traditional scores. However, for three of the sections that showed a significant difference between the two ethnic groups on traditional scores, there was no mirroring in the nontraditional scores. This demonstrates that the two sets of scores are not invariably the inverse of each other, but tap into unrelated areas of attitude and behaviour. This appears most convincingly in the section on language, where the South Asians scored

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significantly higher than the African-Caribbeans, both on traditional and nontraditional scales. In addition to demonstrating the independence of the two scales, this indicates that the South Asians possess a bicultural facility with language, being equally conversant with their mother tongue and with English. Hence this comparison of the two ethnic population groups has validated the ability of CANDID 1 to detect traditional and nontraditional attitudes and behaviours as distinct entities, and to demonstrate biculturalism.

11.2.3

Comparison of cases and controls within each ethnic group

The next step was to compare healthy controls and their matched patients with schizophrenia within each of the two ethnic groups. The hypothesis being tested was that the African-Caribbean patients would be significantly less traditional and more nontraditional than their controls compared with the South Asian patients and their controls. The original pairwise matching of cases and controls was retained and the analysis was carried out on the differences in scores between each pair. The traditional scores of the controls were subtracted from the traditional scores of the patients, so that a positive difference means that the patients are more traditional, while a negative difference means that the controls are more traditional. The same procedure was followed for the nontraditional scores. The significance of the differences between patients and controls was evaluated with t tests, with a probability level of 0.02 in view of the fact that 44 comparisons were made for the two ethnic groups. South Asian patients scored on the borderline of significance (p < 0.021) for being less traditional than controls on a single section only religion and this was mirrored in the nontraditional scores. Patients were more traditional than controls on sex roles only (p < 0.011). We can conclude from these findings that the South Asian patients were firmly rooted in their culture of origin and showed little or no evidence of a drift towards marginalization. By contrast, AfricanCaribbean patients were significantly less traditional than their controls in five domains, their use of language (p < 0.018), sex roles (p < 0.019), desire to live

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among and work with whites (p < 0.0001) and to spend their leisure time with whites (p < 0.0001). They were also less traditional than controls in their wish for little contact with their relatives (p < 0.0002). They were more traditional than the controls in only a single area, reluctance to form relationships with whites (p < 0.0001). The nontraditional scores of patients and controls mirrored these findings with the exception of sex roles, where the patients showed no difference from controls. The most striking findings for the African-Caribbean patients relate to their attitudes to whites. Compared with their healthy controls, they have a strong desire to live in white areas, to work with white people and to spend their leisure time with them. Paradoxically, they are much less willing than their controls to forge relationships with whites. At the same time they show considerably less interest in being in contact with their relatives. These patients’ ambivalence towards whites reflects an aspiration to enjoy the same life-style as they do, with all the associated benefits, but still to maintain a social distance from them. This reluctance to attempt to form friendships may stem from two sources, an awareness of the strength of racial intolerance, both individual and institutional, in the white community, and its manifestation in the murder of Stephen Lawrence and the indictment of the police investigation as revealing institutional racism. Taken together with the reduced contact with relatives, a clear picture of marginalization emerges. The African-Caribbean patients have moved away physically and emotionally from their own community, losing its support, and have gravitated towards the White majority, among whom they do not wish to seek friends. There is evidence that these expressed attitudes do indeed reflect a reality. Research in the 1930s in the city of Chicago [25] revealed that black people who lived in predominantly white areas had a higher first admission rate for schizophrenia than black people who lived surrounded by members of their own ethnic group. This observation became known as the ethnic density phenomenon and has recently been replicated for African-Caribbeans living in London [26]. The incidence of schizophrenia for African-Caribbeans living in areas with a high density of their own ethnic group was 2.4 times the white rate, while for AfricanCaribbeans living in predominantly white areas it was

4.4 times the white rate. For ethnic densities between these two extremes, the rate for African-Caribbeans was 3.6 times the white rate. These observations are subject to two alternative explanations: a migration of African-Caribbeans predisposed to schizophrenia into areas largely inhabited by white people and a possible pathogenic effect of marginalization, echoing the long-standing debate between social drift and social breeder hypotheses [27]. However, the linear increase in risk with decreasing density of African-Caribbeans favours the second hypothesis. A more direct test is feasible now that samples of patients with schizophrenia include third-generation African-Caribbeans, since it would be possible to link these data with place of birth, hence identifying the stability of residence. If it was found that geographical drift could not explain the ethnic density phenomenon, it would support the causal influence of marginalization on the development of schizophrenia.

11.2.4

Testing the cross-cultural validity of CANDID 1

Data have now been collected as part of the AESOP study that will allow this test to be conducted [19]. In some respects AESOP is a development of the EPS, but with much larger numbers of cases and controls, and including psychological and biological measures as well as psychosocial enquiries. It was conducted in three British cities, London, Nottingham and Bristol, and collected all patients with a first contact with mental health services for a psychotic illness. It was thus also more inclusive than the EPS in its diagnostic categories. Furthermore, whereas the EPS had a specific focus on African-Caribbean and Asian subjects, the AESOP study included subjects of any ethnicity. The case-collection strategy was the same in both studies, but there was less of an attempt to match cases and controls on age, sex and ethnicity in the AESOP study. Over 500 patients were accumulated and over 300 controls, making the subject base more than four times as large as the EPS. The main ethnic minority groups represented in the AESOP data base are whites, African-Caribbeans and Africans. There is a relatively small group of Asians, 26 in all. The size of the sample and the inclusion of

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these four ethnic groups provided an opportunity to test more rigorously the validity of using CANDID 1 across widely differing cultures. The total number of subjects from these groups who completed this schedule was 605: 258 cases and 347 controls. Their data were pooled and analysed. Cases predominantly had a diagnosis of nonaffective psychosis. Exploratory factor analysis was conducted and indicated both a one-factor and an eight-factor solution. Most of the CANDID items loaded highly on the first factor in the one-factor solution, suggesting that a strong single dimension may be an adequate representation of the CANDID item response structure. However, this solution was not adequately supported by the sample data compared with the baseline data. The eight-factor solution displayed a good model fit and corresponded reasonably well with the a priori CANDID domains. Items of six out of eight domains loaded strongly to seven distinct factors, representing the domains of ‘religion’ (factor 1), ‘relationship with other ethnic groups’ (factor 6), ‘sex roles’ (factor 2), ‘work/live with other group’ (factor 5), ‘satisfaction with media representation of own ethnic group’ (factor 7) and ‘preferred food’ (factor 8). Only

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items from the ‘language’ and ‘responsibilities in the family’ domains loaded highly on one factor (factor 3). Overall, findings from exploratory analyses pointed to the presence of both a strong general dimension and several domain-specific latent variables representing the dimensional structure of CANDID item responses. A confirmatory factor analysis was largely in accord with these findings, identifying a general factor with high item discrimination shown by ‘language’, ‘responsibilities in the family’, ‘sex roles’, ‘work/live with other ethnic group’ and ‘media’ domains. For the specific factors uncorrelated with the general factor, moderate to high item discriminations were found for the ‘relationship with other ethnic group’, ‘sex roles’, ‘work/live with other ethnic group’ and ‘media’ domains. Our conclusions are that CANDID 1 identifies a single general factor that encompasses all four ethnic groups included in this analysis. In addition there are item-specific factors with contributions from particular domains. These findings endorse the use of CANDID 1 across widely differing cultural groups, and also affirm our initial concept of covering a wide range of domains including both attitudes and reported behaviours.

CONCLUSION

The data from the EPS and AESOP studies underline the importance of using an instrument that is based on bipolar scales, as argued by Burnam et al. [12] and operationalized by Szapocznik and Kurtines [2]. It is also clear that scales dominated by an emphasis on facility in the host language will fail to identify important aspects of behaviour, attitudes and aspirations in which biculturalism and marginalization may be manifested. The study of marginalization has an important implication for prevention of the development of schizophrenia in minority ethnic groups. One can conceive of actions that would focus on strengthening the ties of young people with their community of origin, particularly their families. There are precedents in Black Pride movements that aim to elevate the self-esteem of members of that ethnic group. It would also be necessary to take measures to equalize the opportunities for higher education and employment for young people genuinely and to combat institu-

tional racism wherever it is detected. These endeavours would necessarily require strong governmental support. This may sound utopian at present, but the stakes are high. If these proposed actions stemmed the alarming increase in schizophrenia for African-Caribbeans and Africans in the UK it would constitute evidence for marginalization as a cause of schizophrenia and would be applicable to the many immigrant groups at risk globally [28].

REFERENCES 1. Berry, J. W. (1980) Acculturation as varieties of adap tation, in Psychological Dimensions on the Accultura tion Process: Theory, Models and Some New Findings (ed. A. M. Padilla), Westview Press, Boulder, Colorado. 2. Szapocznic, J. and Kurtines, W. (1980) Acculturation, biculturalism and adjustment among Cuban Americans,

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3.

4. 5.

6. 7. 8. 9. 10.

11.

12.

13.

14.

15.

16.

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in Psychological Dimensions on the Acculturation Process: Theory, Models and Some New Findings (ed. A. M. Padilla), Westview Press, Boulder, Colorado, pp. 139 159. Mavreas, V., Bebbington, P. and Der, G. (1989) The structure and validity of acculturation: analysis of an acculturation scale. Social Psychiatry and Psychiatric Epidemiology, 24, 233 260. Patterson, S. (1965) Dark Strangers: A Study of West Indians in London, Penguin, London. Estes, Y., Farr, A. L., Smith, P. and Smith, C. (eds) (2000) Marginal Groups and Mainstream American Culture, University Press of Kansas, Kansas. Jones, L. (2008) Mister Pip, John Murray, London. Goldberg, M. M. (1941) A qualification of the marginal man theory. American Sociological Review, 6, 52 58. Green, A. W. (1947) A re examination of the marginal man concept. Social Forces, 26, 167 171. Park, R. E. (1928) Human migration and the marginal man. American Journal of Sociology, 5, 881 893. La Fromboise, T., Coleman, H. L. K. and Gerton, J. (1993) Psychological impact of biculturalism: evidence and theory. Psychological Bulletin, 114, 395 412. Rogler, L. H. (1994) International migrations: a frame work for directing research. American Psychologist, 49, 701 708. Burnam, M. A., Hough, R. I., Telles, C. A. et al. (1987) Measurement of acculturation in a community popula tion of Mexican Americans. Hispanic Journal of Be havioral Sciences, 9, 105 130. Beiser, M. and Hou, F. (2001) Language acquisition, unemployment and depressive disorder among South east Asian refugees: a 10 year study. Social Science and Medicine, 53, 1321 1334. Vega, W. A., Kolody, B., Aguilar Gaxiola, S. et al. (1998) Lifetime prevalence of DSM III R psychiatric disorders among urban and rural Mexican Americans in California. Archives of General Psychiatry, 55, 771 780. Oetting, E. R. and Beauvais, F. (1991) Orthogonal culture identification theory: the cultural identification of minority adolescents. International Journal of the Addictions, 25, 655 685. Clark, M., Kaufman, S. and Pierce, R. (1976) Explora tion of acculturation: toward a model of ethnic identity. Human Organisation, 35, 231 238.

17. Berry, J. W. (2003) Conceptual approaches to accul turation, in Acculturation: Advances in Theory, Mea surement, and Applied Research (eds K. M. Chun, P. Balls Organista and G. Marin), American Psychologi cal Association, Washington, DC. 18. Cantor Graae, E. and Selten, J. P. (2005) Schizophrenia and migration: a meta analysis and review. American Journal of Psychiatry, 162, 12 24. 19. Fearon, P., Kirkbride, J. B., Morgan, C. et al. (2006) Incidence of schizophrenia and other psychoses in ethnic minority groups: results from the MRC AESOP Study. Psychological Medicine, 36, 1541 1550. 20. Bhugra, D., Leff, J., Mallett, R. et al. (1997) Incidence and outcome of schizophrenia in white people, African Caribbeans and Asians in London. Psychological Med icine, 27, 791 798. 21. Bhugra, D., Bhui, K., Mallett, R. et al. (1999) Cultural identity and its measurement: a questionnaire for Asians. International Review of Psychiatry, 11, 244 249. 22. Mallett, R., Leff, J., Bhugra, D. et al. (2002) Social environment, ethnicity and schizophrenia. Social Psychiatry and Psychiatric Epidemiology, 37, 329 335. 23. Brown, C. and Ritchie, J. (1981) Focused Enumera tion: Development of a Method for Sampling Ethnic Minority Groups, Policy Studies Institute: Social and Community Planning, Research, London. 24. Bhugra, D., Leff, J., Mallett, R. et al. (submitted) The Culture and Identity Schedule: a measure of cultural affiliation: acculturation, marginalisation and schizo phrenia. The Journal of Culture and Mental Health. 25. Faris, R. E. and Dunham, H. W. (1939) Mental Dis orders in Urban Areas, University of Chicago Press, Chicago, Illinois. 26. Boydell, J., van Os, J., McKenzie, K. et al. (2001) Incidence of schizophrenia in ethnic minorities in London: ecological study into interactions with envir onment. British Medical Journal, 323, 1336. 27. Hare, E. H. (1956) Mental illness and social conditions in Bristol. Journal of Mental Science, 102, 349 357. 28. Cantor Graae, E. and Pedersen, P. (2007) Schizophre nia in second generation immigrants: a Danish study. Psychological Medicine, 37, 485 494.

12 Globalization and psychiatry Rahul Bhattacharya,1 Susham Gupta2 and Dinesh Bhugra3 1 2 3

East London NHS Foundation Trust, London, UK East London NHS Foundation Trust, London, UK NIH Biomedical Research Centre and Institute of Psychiatry, King' s College London, London, UK

12.1

INTRODUCTION

Globalization means different things to different people from simply an economic shift of resources to a much more far-reaching transformation in cultural, social and economic structures as a consequence of revolutions in transport and communications. These changes impact on societies at large and on individuals, and cast complex and subtle influences on the incidence and prevalence of mental disorders in populations. In addition, the ways in which mental disorder is understood and managed will be shaped by these ongoing global shifts, as individuals are exposed to ideas and information from a vast array of sources. These sources most obviously include the Internet. It is inevitable that such ready access to information will affect philosophical, ideological and political world views, which explains why some countries will not allow access to certain websites. These changes will affect the mental health of families and individuals at a number of levels and in a number of ways. Jones [1] observes that the term ‘globalization’ has both been overused and abused. The process of globalization changes the technological, economic and

emotional boundaries of the nation state. It also changes the way individuals perceive time and space [2,3]. It is inevitable that the process of globalization works both in positive and negative ways. Societies have always evolved and changed as a result of invasions, migration and natural forces such as famine and floods. Globalization, however, produces a level of change that is faster and equally unpredictable. The resulting social and economic disintegration, the unequal distribution of wealth, the limited opportunities for many individuals and changing social or political norms will no doubt influence attitudes and responses to the process of globalization. Global economic forces have weakened poor countries and communities, on the one hand, and reinforced the economic status of wealthy countries, on the other [4]. However, there have been changes in countries such as Brazil, Russia, India and China where economic growth by and large has been impressive. Within these countries, this has come at a price, with evidence of resulting social fragmentation and greater inequalities. Thus, links between globalization and the health

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of the societies and individuals are complex and have only recently been explored. Lee [3] suggests that a clearly defined research and policy agenda needs to be developed. Globalization has also been defined by Tomlinson [5] as ‘the continuation of a long historical process of Western ‘imperialist’ expansions . . . representing an historical pattern of global cultural hegemony’. Such a definition suggests that people are still being manipulated and are not really able to make choices. The use of time and space has certainly altered as a result of globalization (see below). Personal space has given way to economic space where survival activities are marginalized by the activities of the rising global business class [6]. The communal place also takes

12.2

over the personal space. This kind of shift in a sociocentric or kinship-based society will create new ways of producing and relating to others. Cities tend to improve their economic efficiency by marginalizing and excluding marginal areas and segments of the population [7]. Consequently, more space is allocated to commercial activities, thereby reducing personal or public green space further, which may produce further overcrowding and stress. Using Ahmedabad in Gujarat, India, as an example, Mahadeivia [7] notes that, post-globalization and economic liberalization, the debt burden on the city has increased eightfold, leading to the city withdrawing from its nonobligatory functions.

IMPACT OF GLOBALIZATION

The term globalization has become emotionally charged. It is often alternately seen as a further extension of US hegemony or as a promise of international civil society [8]. There is indeed an emerging global culture heavily influenced by the US. However, the extent and reach of this homogenization of culture is questionable. For example, McDonald’s in India provides no beefburgers but instead offers only vegetarian options. This modification may seem superficial, but it indicates that the hard core of American values may not necessarily take root in other cultures. The emergent global culture then becomes dissipated through popular movements of one kind or another [8]. Interestingly, Berger [8] also suggests that the dissemination of the Protestant work ethic through ‘missionaries’ may have influenced globalization. Thus, aspirations, expectations and reality may clash with each other, adding to the stress of globalization. Following from this, Bhavsar and Bhugra [9] note that economic inequalities are already associated with higher rates of mental disorders, and if globalization increases economic inequalities then it is likely that

12.3 However, is globalization really that recent? People have since time immemorial crossed borders and

these rates will increase further. This will be complicated by poor physical health that may occur as a result of overwork, poor health and safety conditions and other factors. Berger ([8], p. 10) suggests that impinging globalization can paradoxically also lead to a revitalization of indigenous cultural forms. The response in return may lead to the development of new religions, to becoming more extreme (as in the case of the Hindu fundamentalist party in India) and to influences on the media (which again in India have become more sensationalist than before). These cultural conflicts, argues Berger [8], lead to a turbulent situation that is very hard to control. Cultural globalization is closely interlinked with economic and social globalization. There is also a broader view of the term globalization, where it is seen as a multifaceted phenomenon and appraised in a social context: ‘as the intensification of worldwide social relations which link distant localities in such a way that local happenings are shaped by events occurring many miles away and vice versa’ [10].

HISTORY expanded their boundaries. They have interacted, settled in new lands or travelled back home, bringing

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in elements from which both parties learn and change their manners, knowledge and other aspects of social functioning. Migration has been driven by aspirations for a better future or in order to flee persecution, and therefore is similar to the modern day asylum seeker or the economic immigrant. Migration has been influenced by political and military endeavours, religious missions or by ideas of sheer exploration. From the Silk route to the ancient colonies, from the Spanish and Portuguese conquistadores to the Dutch and British East India Companies, interaction across the borders has always been there. The era of incorporating much of the world through trade and colonization (fifteenth to nineteenth centuries) is now often (retrospectively) referred to as the ‘First Era of Globalization’. Globalization suffered a setback with the gold crisis and the Great Depression of the 1920s and 1930s. However, it is arguable that the only significant recent departure is that boundaries are becoming more permeable. After the World Wars the term globalization entered our vocabulary and the modern era of globalization started. World economies wanted to ensure and safeguard against another future decline in international interactions (or trade). Their works led to the Brent Woods Conference, and this was followed by several agreements to reduce barriers to ensure free(er) trade, e.g. the General Agreement on Tariffs and Trade (GATT). Organizations such as the International Monetary Fund (IMF), the World Bank and the World Trade Organization (WTO), which has its roots in GATT, were not only driven by reducing trade barriers, but also wanted protection against free movement of intellectual property, and therefore were keen to enforce supranational patency. Supranational governmental or political organizations such as the United Nations and the European Union added another dimension to this. There were also social and professional organizations that went international, e.g. Amnesty International, Medecins Sans Frontieres and Doctors Without Borders. Some of these organizations had been formed earlier but have benefited from the process of globalization. Through the 1970s and 1980s, many of the commercial enterprises themselves had spread across borders and had become mammoth global players, e.g. General Motors, McDonalds and, more recently, Microsoft. Hence one

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of the features of modern globalization is the creation of networks that overcome traditional political, cultural or social boundaries. This has happened within psychiatry with, for example, the formation of the World Psychiatric Association. The interactions and interdependencies fostered and nurtured by globalization have stretched the boundaries of social relations, activities and, potentially, people’s aspirations and identities. The thing that has made some of these changes possible is an unprecedented rate of development in the fields of communications and travel. These tools of globalization seem to have qualitatively transformed the concept of boundaries by allowing interactions across the borders in real time, essentially transforming our concept of time and space. Hence we are in an age of globalization like never before. In this chapter, the term ‘globalization’ refers to this modern era of globalization. Globalization is then simply the intensification of global interconnectedness [11]. Inda and Rosaldo [11] note that this interconnectedness works at different levels, including processes that operate on a global scale and ceaselessly cut across national geographical boundaries, connecting and integrating cultures and communities in new space time combinations. Thus, the world as a result of globalization has a rapid flow of capital, people, goods, images and ideologies, making closer connections and compressing the time and space across the countries. The world may be connected through better and faster means of communication but the overall impact and influence of globalization remains uneven. Partly it is related to language and partly to cultures themselves (whether they are inward looking or outward looking). The ‘intensification of circuits of economic, political, cultural and ecological interdependence’ [11] can lead both to advantages and disadvantages. Inda and Rosaldo [11] suggest that a fundamental reordering of time and space is occurring. The speeding up of economic and social processes have shrunk the globe; distance and time no longer appear to be major constraints on the organization of human activity [12]. News around the world can be accessed in real time the most striking recent example being the use of ‘Twitter’, a kind of instant messaging service, in the Mumbai bombings in November 2008. With limited effort hundreds of thousands of

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people around the globe can be kept informed as events unfold. Harvey [12] notes that the process of globalization is neither sudden nor continual but occurs in short spurts, and once one technology has settled down, its variants or replacements emerge. The centralized mass production in one site has given way to multiple production sites around the globe where components are made and then brought together somewhere else for assembly. Thus the social factors leading to stress have a domino effect directly or through repeated visualization, as was seen in repeated viewing of images of the 9/11 attacks. As noted earlier, Inda and Rosaldo [11] indicate that (global) space is shrinking and time is speeding up. Thus the system relies on people who may be far away from each other. These authors suggest that the cultural dynamics of globalization have produced de/territorialization of culture (p. 10) by pulling culture away from its particular locales. People and cultures move across previously rigid geographical boundaries and cultural values have unhinged from geographically located cultural groups. Inda and Rosaldo (p. 11) note that this cultural de/territorialization is invariably the occasion for reinsertion of culture into new time space contexts. Does this process lead to homogenization of cultures or does it produce more rigid nationalist extremism? Both results are possible and it really depends on how the cultures see themselves, whether they are able to absorb the impact of newer factors and whether the contact is friendly, or social, economic or political. Inda and Rosaldo (pp. 13 14) have talked about cultural imperialism as part of the globalization process. Contemporary migrants will bring with them different values but also similar ones as a result of a shrinking world. These authors also raise the question of whether the flow is all one way from the West to the East, which is obviously not the case. Migrants carry their cultures with them wherever they go, but they also develop coping and managing strategies in new cultures. The disjointed connections between them and those who have been left behind raise further questions about managing stress and distress. There will undoubtedly be people who are multilingual, have multiple identities, multiple residences and move effortlessly between cultures [13], whereas others will

struggle. The distancing between those who ‘have’ it (status, skills or choices) and those who do not becomes significant in understanding the development and the management of mental distress. Stiglitz [14] cautions that globalization will result in increasing inequality among the world’s population: ‘Market deregulation favours the dominant, strong economies of the West and fails to offer developing countries an opportunity to strengthen their infrastructure sufficiently to compete in a global economy. Globalization, by this logic, will lead to further poverty, inequality and social injustice.’ Exacerbation of wealth inequalities between and within societies is a possible outcome of this process. This could lead to social inequalities, which will in turn increase rates of certain mental disorders. Is it this simple? Probably not, as lots of other factors will need to be taken into account. To view globalization as a process that only benefits the developed world at the expense of the poorer regions is inaccurate, even though it may be perceived as such. The need for cheaper labour has led to shifting of both manufacturing and service-based industries to the developing world, thereby generating local jobs and wealth even though their spread may be inequitable. Also, economic gains from one region can benefit another. Remittance from external migrants back to their families is an important source of income for some countries. Technological advances have led to a diminution in absolute poverty in Western countries but without stricter state controls inequality has increased dramatically. Although benefits are assumed to ‘trickle down’ to the least well off in society, the technological nature of these gains favours those at the top of the food chain. The UN Human Development Report [15] indicates that progress has been made worldwide to lift millions of people from poverty, especially in places like China, parts of Asia, Africa and the Americas. For the first time in history, more people live in urban and developed areas than not, primarily due to massive and unprecedented internal economic migration, rather than to economic development in the developing world. Both internal and external migration thus produce changes in stressors and social support networks, making individuals more vulnerable to psychological factors.

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12.4

SOCIAL INEQUALITIES AND MENTAL ILLNESS

A positive linear relationship between income inequality (measured by the ratio of the income share of the richest 20% of the population to the poorest 20 %) and the prevalence of any mental disorder in developed countries exists [16]. With increased availability of data looking at the relationship between psychological functioning and social inequalities across the globe, it should be possible to delineate more precisely the relationship between income inequality, mental disorder and deprivation in the high and low and middle income countries. Changes may be related to changes in social cohesion and inclusion, negative perceptions of the self and real or perceived loss of control over work and life. Wilkinson and Pickett [17] observe in a systematic review that studies finding no association between inequality of income and health tend to be smaller in geographical and

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population coverage and hence less reflective of social stratification, for which income inequality is a marker. Eibner, Sturn and Gresenz [18] found a correlation between an index of relative deprivation and higher risks of developing depression and anxiety. However, an association between living in an income unequal area and depression in women shows variable results [19]. The relationship between gender itself, gender role expectations and income inequality means the inability of women to reach their full potential could lead to a further sense of poorer aspiration, achievement incongruence and powerlessness. As depression is more common in women and in certain settings rates of deliberate self-harm are higher in women, changes related to globalization and migration may affect women more, and this deserves to be studied further.

CHANGES IN PERCEPTIONS OF MENTAL DISORDERS

Globalization will influence individual perceptions both of the understanding of mental disorders as well as of the way mental health services are accessed. Although the numbers of trained mental health professionals are low in many regions of the world, quite often the training is more likely to follow a Westernized concept of mental illness. Culture-specific as well as transculturally sensitive training of mental health workers is needed to comprehend the true prevalence of psychological problems and deliver appropriate treatment. It is also highly likely that with increased industrialization and urbanization, access to Western systems of medicine will be more common and may be seen as more sophisticated, and cultural shifts as a result of media exposure may lead to altered explanatory models of health. In addition, traditional idioms of distress may change with exposure to other cultural norms. It has been argued that with changes in society there may well be an alteration in the locus of control in health care beliefs from external (e.g. supernatural) to internal (e.g. psychological factors) (see

Reference [20]). These factors also lead to a shift in identity development and response to stressors that may well put the individual in direct conflict with the culture or with those members of a culture who may not have changed or acculturated at the same level or same speed. For example, parents may hold on to more traditional views and their children may develop more modern views, thereby causing a culture clash. On the other hand, it is equally likely that children may not necessarily hold modern attitudes but show these in order to fit in with their peers, thereby causing even more internalized conflict. With inequitable economic changes within societies, the chances of divergence in the mode of delivery of care are quite high, especially in areas where public health services are inadequate. Unregulated growth of private health providers may exploit high (and often unrealistic) expectations of those who are to afford such care. There are more direct effects of globalization. One anecdotal example is that the explosion in call-centre employment in India has increased presentations of substance abuse, domestic problems, depression and

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anxiety to local psychiatrists though the employers have often not taken this seriously [21]. Walker [22] argues that in the globalized world, income and educational disparities, as well as financial and job insecurity, have grown in parallel with increasing feelings of hopelessness and isolation. He goes on to emphasize that sociopolitical stressors will add to the prevalence of depressive disorders and also influence their conceptualization and treatment. This is further compounded by the waning of protection of rights of individual workers and trade union power in many parts of the world [23]. With increasing economic freedom, individuals are less dependent on social and family units and sociocentric societies are likely to become more individualistic or egocentric. Social psychologists like Maercker [24] have shown that the prevalence of psychiatric disorders varies according to the type of society; e.g. sociocentric societies have lower rates of common mental disorders. Social isolation can be both a factor and a product of mental disorders. This is particularly true for older people, who are often dependent on their families for support in the absence of adequate social benefits and pension schemes. With the increasing breakdown of the family unit and the migration of the younger population, in many parts of the world the elderly are more likely to be left to fend for themselves. This can add to the worsening of morbidity in the absence of well-developed mental health systems. With increased competition from agrarian to industrialized societies, rising expectations for academic achievement, peer pressure and cultural dissonance may lead to children and adolescents becoming susceptible to emotional problems. With increasing proximity, political and cultural clashes

12.6

between nations may lead to direct and indirect conflict. The feeling of being exploited and of powerlessness towards a process beyond the control of individual countries can generate anger, frustration and mental disorder. This could be channelled through violent responses. However, globalization also plays a protective role with greater international consensus and better cultural awareness among nations, as exemplified through the development of various global economic and political forums. Bauman [25] illustrates how the role of the media in the portrayal of poverty, famine and natural disasters in faraway lands makes individuals in developed countries desensitized to the impact of these tragedies As noted above, culture influences the idioms of distress, sources of help, pathways into care and both the patient’s and the clinician’s explanatory models as well as the social response to distress and to disability [26]. Globalization will change an individual’s ethnic identity and will affect the multiplicity of identities and responses an individual will carry in a clinical encounter. Combined with a sense of alienation (when individuals in their culture are left behind while some are getting ahead) and marginalization, individuals can react in a number of ways, but most of these are likely to bring more stress on the individual. Mental disorder by itself cannot be isolated from the processes of globalization. Kirmayer and Minas [27] argue that globalization affects psychiatry through its effect on the forms of individual and collective identity, through the impact of economic inequalities on mental health and through the shaping and dissemination of psychiatric knowledge itself. On the one hand the culture may assert its identity by maximizing its characteristics good and bad or it may ‘creolize’ the identity and cultural idioms.

GLOBALIZATION, IDENTITY AND CULTURAL PSYCHIATRY

One’s identity of self is the core to one’s sense of being, and a source of vulnerability or resilience as an individual. Awareness and migration exposes people to multiple social orders and hierarchies, local and global. Living at the interface of the local and the global necessitates a pluralistic frame of reference. Bibeau [28] calls this a ‘creolizing world’ where global ideas are

reconstructed and reshaped to local levels. Ethnic identity remains a fluid concept in migrant populations. People may have an identity that retains elements of their culture of origin, but might also involve deconstruction and loss of other elements of their root culture, over successive generations. This process may be understood as a stage in the migration life cycle, a stage

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characterized by constant shifting and assembling of new hybridized identities [29]. The process of developing the reconstructed identity is associated with acculturation. It is important that social strategies avoid marginalization or segregation. In fact, developing a

12.7

bicultural identity in the process of managing multiple cultural environments and group loyalties and bilingual competence, and perceiving one’s two cultural identities as integrated, appears to be an important antecedents of beneficial psychological outcomes [30].

HEALTH AS A COMMODITY

Globalization has been driven by the market economy and deregulation. As it promotes consumerism, it has ‘commodified’ everything that has come its way and health is no exception [31]. While technological advances bring in a light of optimism, consumerism in medicine undermines society’s contract with the doctor. Psychiatry is no exception. In the US, specialist interventional medicine has boomed, administrative overheads swollen and litigation is rampant. This has come at a cost to the patient and the doctor [31]. Patient (consumer) satisfaction is low with the generalist forming only 30% of the medical workforce in the US [31]. Doctors face the risk of being de-skilled in bedside procedures with excessive dependence on technology and new-found interventions. If health care is a product that can be bought, then if you are unhappy with the local service, why not get it somewhere else, maybe cheaper. Historically people (who could afford it) came from the developing world to seek health care in the West. As dissatisfaction has

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grown, 750 000 Americans travelled abroad to seek health care in 2007 [32]. Health tourism had traditionally been the remit of interventional medicine, but we do get psychiatric patients who request medicine not yet licensed or marketed in the UK. This is either driven by information or prescription while travelling abroad. We also come across patients who travel abroad to seek spiritual or alternative healing for their psychic distress. This can be looked on as another form of health tourism. Health tourism to the developing countries is a relatively new phenomenon. Does this mean a move towards an equitable access to health care technology across the globe? It does offer an opportunity for certain fractions of people from developing economies. It also offers facilities to people from wealthier nations who lack the resources to avail care in their local setting [33]. However, it does not necessarily ensure distribution of the benefits of transfer of such technology in an equitable manner and therein lies the challenge that society faces today.

GLOBALIZATION OF DRUGS: THE PRESCRIBED AND THE NOT PRESCRIBED

While most of our patients still do not travel abroad to obtain treatment, most of the medications are now manufactured abroad. Though most patents are held with the West, an increasing proportion of the manufacturing has moved to the developing economies, particularly in recent years. Manufacturing sites in India and China now comprise 40% of the FDA registered foreign sites, and there were 145 000 ‘line entries’ of foreign drugs from more than 160 countries [34]. This also raises anxieties over standardization of the drugs being manufactured and dispensed [34]. Cheap production in countries with cheap labour and cheap and efficient transport to connect the producer with the consumer is not limited to prescribed

drugs. In a study looking into the relative cost of the illicit drugs heroin and cocaine, Costa Storti and De Grauwe [35] found a decline in the retail prices of drugs, related to the strong decline in the intermediation margin in the drug business, and concluded that globalization was the main driving force behind this phenomenon. The drug costs have come down with increased efficiency of the distribution of drugs, reduced risk premium involved in dealing with drugs and increased competition in the drug markets. This poses a challenge for psychiatry. Illicit drugs are associated with predisposing, precipitating and perpetuating psychiatric morbidity. Globalization has increased exposure to these risks.

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One rather unique challenge of globalization is seen in the increased use of khat in the West. Import is driven by demand, often from migrant populations, particularly from East Africa. There is a lack of political as well as professional consensus on this issue. Legally, while some countries ban khat, others

12.9

consider it as just another exotic vegetable. Some professionals panic with the amphetamine derivative in khat and the risk of mental illness associated it, while anthropologists see this ‘moral panic’ as arising from a failure to appreciate the use of khat within its social and ethnological context [36].

REVOLUTION IN INFORMATION SHARING AND MENTAL HEALTH

Expertise is no longer the sole domain of the ‘specialist’: it can be available across the globe and is often shared or marketed freely through the World Wide Web. One can order ‘newer’ pharmaceutical products over the Internet, as governmental regulations struggle to enforce standardizations and restrictions. In mental health this is relevant in people ordering sleeping tablets, pills that make them happy or aphrodisiacs, and slimming tablets, which are often worryingly unsafe or unknown quantities. Recent examples include sildenefil, fluoxetine and dihydroxy epiandrosterone. Rather paradoxically, though globalization was promoted to protect intellectual property, it has ended up deregulating certain products like never before. While this is a debate on its own, this also highlights the fact that nobody is actually ‘in charge’ of

12.10

globalization. Today technology is shared over the World Wide Web; and a lot of it offers immense benefit to us through the sharing of relevant evidence and literature. It has also helped in the formation of support groups for conditions that are sometimes rare or stigmatized. However, as with most things, so with globalization, there are negatives information sharing on how to home-grow cannabis, for example. This leaves many vulnerable populations exposed to another risk (with the known adverse effects of cannabis on mental health). As a profession we are also continuously challenged by ‘alternative medicine’, which can range from the evidence based to the obscure and unknown, from the culturally diverse and traditional to popular science or pseudo-science.

MIGRATION AND MENTAL HEALTH

Globalization has been facilitated by cheaper and more accessible travel and this has led to migration around the world on an unprecedented scale. Figures from the UK show a huge flux of migration reaching a peak in 2005: ‘The highest net inflow (204 000) was in 2005 when 563 000 people moved into the UK and 359 000 left’ [37]. However, we often forget migration is rampant across the globe and not an exclusive phenomenon faced by the West, though there is little literature in migrant populations in non-Western countries, e.g. Afghans in Iran, Sudanese in Egypt and so on. Migration is uprooting and displacing, especially if it is driven by persecution or natural disasters, as this form of migration allows less scope for planning. Migration often comes with loss of social support, poverty and potentially deprivation

and discrimination. Depending on the level of individual and collective strength in the person’s identity and their experience of response from the host community, the individual can be integrated, assimilated, segregated or marginalized [38]. Individuals who have been persecuted, who have been tortured or who have not received a privileged upbringing or education are less likely to be equipped with the skills that are valued, and are therefore potentially less likely to be aware of what to expect in their host country and are more likely to be sensitive to perceived discrimination and face real discrimination or racism. On the other hand, the sudden arrival of a large number of people who are perceived as competing for limited resources can be worrying to the host community, and it would be unfair to label this anxiety as racism [39].

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These dynamics can potentially have a long-lasting effect and can leave generations to come with poor self-esteem. A reflection of this can be found in the increased prevalence of bulimia, a behaviour associated with poor self-esteem in children of Asian background coming from a more traditional background in Bradford [40]. Because immigrants often come from a traumatic past, it is not surprising that there is a relatively high incidence of PTSD in this

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population. A study in Oslo found that PTSD affected 46.6% of all the refugees [41]. While some of these associations are easily understandable, some associations are difficult to explain. Schizophrenia has been consistently found to be increased among Black Caribbeans in the UK and the Netherlands, without a corresponding increase in the original sending populations [42,43]. Migration and psychosis is discussed in Chapter 15 (see also Reference [44]).

GLOBALIZATION AS A CAUSE OF MENTAL DISORDER

An elegant study that came up with rather worrying results was one carried out in the islands of Fiji by Becker et al. [45]. There was an association between increased exposure to television and symptoms of vomiting to control weight (though the authors did not formally diagnose bulimia). Like the Mumford study, one can argue that the ‘global’ notion of what is aesthetic and acceptable by society in terms of one’s physical appearance has led to an undermining of selfconfidence in the local population. One might ask whether the rates of morbidity are going up or are we ‘medicalizing’ behaviour? Attention deficit/hyperactivity disorder (ADHD) can be taken as another example. It is a condition often diagnosed using questionnaires, e.g. Connor’s Questionnaire. Though the assessments for ADHD have been standardized, raters’ perceptions and interpretations of behaviours may vary across cultures (Mann et al. 1992 [46]). This can affect cross-cultural reliability and validity of ADHD as a diagnosis [46]. These findings were similar to another study that compared Hispanic and white American raters. They concluded: ‘Overall, the present investigation suggests that teachers’ reports of ADHD behaviour will need to be viewed with caution since the use of the published cutoffs to determine the level of pathology appears questionable with Hispanic groups.’ However, teacher or rater ethnicity is rarely considered in real life. The diagnosis of ADHD has risen to epidemic proportions in recent years. Timimi has tried to explain this phenomenon from a cultural perspective [47]. The immaturity of children is a biological fact, but the ways in which this immaturity is understood and made meaningful is a fact of culture. In modern Western

culture many factors adversely affect the mental health of children and their families. These include loss of extended family support, maternal blame, pressure in schools, a breakdown in the moral authority of adults, family life being busy and ‘hyperactive’, and a market economy value system that emphasizes individuality, competitiveness and independence [48]. Diagnostic manuals in psychiatry ensure a degree of reliability, but the validity of conditions remains exposed to challenges. As with inattention, hyperactivity and impulsivity in ADHD, personality disorders pose a similar challenge, as boundaries between normality and psychiatric conditions are inevitably arbitrary [49]. The challenge that globalization adds to this debate is that globalization tries to impose global norms insensitive to the cultural context. Therefore the diagnosis of personality disorders is highly dependent on how a society views certain behaviour. Self-concept, adaptation and social context are important aspects of the cultural dimensions of personality disorders. Due to globalization and migration processes, clinicians and therapists are increasingly called upon to assess the level of personality functioning, not only in patients from different ethnic backgrounds but also in traumatized refugees and migrants. Multiple social and cultural factors have an influence on each level of the diagnostic and therapeutic process. At one level this demands a new level of cultural competency and sensitivity [50]; at another level it poses a fundamental challenge regarding the cross-cultural validity of these diagnoses. There is a debate to be had on whether the diagnosis of conditions such as antisocial personality disorder in the DSM-IV represents undue medicalization of societal challenge.

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12.12

DISCONTENT, DISPARITY AND INCREASED RISK

Proponents of globalization believe the market is a self-regulating system, a sort of natural selection where the ‘fittest’ will end up at the top and the benefits trickle down to the society. Advocates of globalization, such as Jeffrey Sachs, point to the above-average drop in poverty rates in countries, such as China, where globalization has taken a strong foothold, compared to areas less affected by globalization, such as Sub-Saharan Africa, where poverty rates have remained stagnant [51]. There is a flip side to this. The gross produce of the world has increased and the rich have become richer; multinationals are often worth more than the gross domestic product of some nations. The divide between the rich and the poor therefore has increased [14]. While one can argue disparity is perhaps not new to human history, the situation today is different due to ‘knowledge’ of the inequalities made available by the information revolution through globalization. It is possible that the psychological impact of this painful information on an individual who is often powerless to make a difference in their lives will in some cases be so severe as to lead to a breakdown in functioning. As already noted, psychiatric disorders are more common in lower socioeconomic groups [52,53]

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and possibly the relationship is bidirectional, with low socioeconomic status affecting health [54]. There is a fear that globalization has increased poverty, and this can potentially increase psychological morbidity. It is also hypothesized that women might be at increased risk, with deprivation affecting women more with their domestic and childcare responsibilities [55]. With increasing economic freedom and Western individualistic values, social psychologists have shown that the prevalence of mental disorders varies according to type of society; e.g. individualistic societies have a higher incidence of common mental disorder [24]. To members of nonegocentric cultures, autonomous thinking with a free range of choices is alien. With globalization and the fragmentation of society, and with increasing alienation from society, one can understand why time and again globalization has been seen as promoting ‘anomie’ by social scientists. Emile Durkheim described anomie as a state in which norms are unclear or confusing or even absent in the face of large-scale social changes beyond the control of the individual [56]. Though traditionally related to the phenomenon of suicide, anomie has been invoked to explain increased incidence of schizophrenia in progressively smaller migrant groups [57].

TRAINING AND RESEARCH AND PSYCHIATRY AND GLOBALIZATION

It is not only patients who have travelled, psychiatrists themselves have travelled in many directions. There have been people who have come to the West to train, settled or returned and trainees who have travelled within the West or have gone for ‘elective’ training away from their home. All this has not only exposed the psychiatrist to a rich and diverse clinical experience but also has led to them being trained in different countries and styles. To ensure standardization, examinations such as the Professional Linguistics and Board for entry into the UK were set up. Globalization has also brought into our awareness the recruitment difficulty that psychiatry as a discipline faces in coun-

tries as diverse as the US, Denmark and Nigeria [58]. While Coverdale et al. recently commented on the globalization of psychiatric research [59], there has also been increased concern over the methodology and ethics of research from lower and middle income countries (with respect to Western standards). Whether these studies are deemed methodologically poor due to the limited representation of psychiatry in their workplace, to the author’s inexperience in research or to a Western selection bias remains unanswered. However, it does bring forward one of the fundamental paradoxes of globalization: that it promotes cultural plurality, yet wants to ensure standardization.

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CONCLUSION

One aspect of the modern phenomenon of globalization is awareness of the impact of the process on subjectivity [60]. One can argue that cultural psychiatry as a discipline is a result of this subjective awareness of the pluralistic society we live in, and deals with the social, cultural or individual processes that are threatened by globalization [61]. The main challenge of cultural psychiatry is to balance cultural sensitivity with avoidance of stereotyping. Diversity, heterogeneity and pluralism lead us to question the heuristic distinctions traditionally made by social sciences between cultures and social orders [62,63].

The melting of geographical, emotional, economic, social and cultural boundaries as a result of globalization will contribute to stress on individuals and their families, as will how individuals manage in changing environs. The question that needs to be asked is whether these boundaries were permeable enough already in order to allow globalization to take place. Whatever the answer, the impact of globalization in terms of economic factors that affect mental health that in turn influences the economy, thus setting up a vicious cycle cannot be ignored.

ACKNOWLEDGEMENTS The authors wish to acknowledge that sections of this chapter have appeared previously in S. Gupta and D. Bhugra (2009) Globalization, economic factors and prevalence of psychiatric disorders, published in International Journal of Mental Health 38(3), 53 65. Published here with kind permission of M.E. Sharp Inc. with thanks from the authors. REFERENCES 1. Jones, R. J. B. (1995) Globalization and Interdepen dence in the International Political Economy, Polity Press, London. 2. Kunitz, S. J. (2000) Globalization, states and the health of indigenous people. American Journal of Public Health, 90, 1531 1539. 3. Lee, K. (2000) The impact of globalization on public health: implications for the UK Faculty of Public Health Medicine. Journal of Public Health Medicine, 22, 253 262. 4. Bhugra, D. and Mastrogianni, A. (2004) Globalization and mental disorders: Overview with relation to depression. British Journal of Psychiatry, 184 (1), 10 20. 5. Tomlinson, J. (1997) Internationalism, globalization and cultural imperialism, in Media and Cultural Regulation (ed. K. Thompson), Sage, London, pp. 117 162.

6. Friedman, J. (2002) Globalization and localization, in The Anthropology of Globalization: A Reader (eds J. X. Inda and R. Rosaldo), Blackwell, Oxford, pp. 233 246. 7. Mahadeivia, D. (2002) Communal space over life space: saga of increasing vulnerability in Ahmedadbad. Economic and Political Weekly, 37 (48), 4850 4858. 8. Berger, P. L. (2002) The cultural dynamics of globali zation, in Many Globalizations: Cultural Diversity in the Contemporary World (eds P. L. Berger and S.P. Huntington), Oxford University Press, New York, pp. 1 16. 9. Bhavsar, V. and Bhugra, D. (2008) Globalization: mental health and social economic factors. Global Social Policy, 8 (3), 378 396. 10. Giddens, A. (1990) The Consequences of Modernity, Polity Press, London. 11. Inda, J. X. and Rosaldo, R. (2002) Introduction: a world in motion, in The Anthropology of Globalization (eds J. X. Inda and R. Rosaldo), Blackwell, Oxford, pp. 1 36. 12. Harvey, D. (1989) The Condition of Post Modernity, Blackwell, Oxford. 13. Hall, S. (1995) New cultures for the old, in A Place in the World? Places, Cultures and Globalization (eds D. Massey and P. Jess), Oxford University Press, New York, pp. 175 213. 14. Stiglitz, J. (2002) Globalization and Its Discontents, Penguin, London.

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15. The United Nations (2001) The UN Human Develop ment Report, United Nations, New York. 16. Pickett, K.E., James, O. W. and Wilkinson, R. G. (2006) Income inequality and the prevalence of mental illness: a preliminary international analysis. Journal of Epide miological Community Health, 60 (7), 646 647. 17. Wilkinson, R. G. and Pickett, K. E. (2006) Income inequality and population health: a review and expla nation of the evidence. Social Science and Medicine, 62 (7), 1768 1784. 18. Eibner, C., Sturn, R. and Gresenz, C. R. (2004) Does relative deprivation predict the need for mental health services? Journal of Mental Health Policy and Economics, 7 (4), 167 175. 19. Kahn, R. S., Wise, P. H., Kenned, B. P. and Kawachi, I. (2000) State income inequality, household income, and maternal mental and physical health: cross sectional national survey. British Medical Journal, 321, 1311 1315. 20. Tseng, W. S. (2004) Handbook of Cultural Psychiatry, Academic Press, San Diego, California. 21. Basu, I. (2004) The faces of globalization: a dilemma for India http://www.spacedaily.com/news/India 04e. html. 22. Walker, C. (2008) Depression and Globalization: The Politics of Mental Health in the 21st Century, Springer. 23. Rahim, S. I. A. and Cederblad, M. (1989) Epidemiol ogy of mental disorders in young adults of a newly urbanized area in Khartoum, Sudan. British Journal of Pyschiatry, 155, 44 47. 24. Maercker, A. (2001) Association of cross cultural dif ferences in psychiatric morbidity with cultural values: a secondary analysis. German Journal of Psychiatry, 4 (1), 17 23. 25. Bauman, Z. (1998) Globalization: The Human Con sequences, Polity Press, Cambridge. 26. Kirmayer, L. J. (2001) Cultural variations in the clinical presentation of depression and anxiety: implications for diagnosis and management. Journal of Clinical Psychiatry, 62 (suppl. 13), 22 28. 27. Kirmayer, L. J. and Minas, H. (2000) The future of cultural psychiatry: an international perspective. Canadian Journal of Psychiatry Revue Canadienne De Psychiatrie, 45, 438 446. 28. Bibeau, G. (1997) Cultural psychiatry in a creolizing world: questions for a new research agenda. Transcul tural Psychiatry, 34 (1), 9 41.

29. Plaza, D. (2006) The construction of a segmented hybrid identity among one and a half generation and second generation Indo Caribbean and African Carib bean Canadians. Identity, 6 (3), 207 229. 30. Chen, S. X., Benet Martınez, V. and Harris Bond, M. (2008) Bicultural identity, bilingualism, and psycholo gical adjustment in multicultural societies: immigra tion based and globalization based acculturation. Journal of Personality, 76, 4. 31. Lown, B. (2007) Commodification of health care. PNHP. Newsletter, 40 44. 32. Horowitz, M. D., Rosensweig, J. A. and Jones, C. A. (2007) Medical tourism: globalization of the healthcare marketplace. Medscape General Medicine, 9 (4), 1531 1532. 33. Crone, R. K. (2008) Flat medicine? Exploring trends in the globalization of health care. Academic Medicine/ Journal of the Association of American Medical Colleges, 83 (2), 117 121. 34. Woo, J., Wolfgang, S. and Batista, H. (2008) The effect of globalization of drug manufacturing, production, and sourcing and challenges for American drug safety. Clinical Pharmacology and Therapeutics, 83 (3), 494 497. 35. Costa Storti, C. and De Grauwe, P. (2007) Globalization and the price decline of illicit drugs. International Journal of Drug [Online]. Available at URL http:// www.econ.kuleuven.be/ew/academic/intecon/Degrauwe/ PDGpapers/. 36. Wanigaratne, S., Salas, S. and Strang, J. (2007) Sub stance misuse, in Textbook of Cultural Psychiatry (eds D. Bhugra and K. S. Bhui), Cambridge University Press, Cambridge. 37. Lynch, J., Smith, G. D., Harper, S. et al. (2004) Is income inequality a determinant of population health? Part 1 A systematic review. Millbank Quarterly, 82 (1), 5 99. 38. Berry, J. W., Phinney, J. S., Sam, D. L. and Vedder, P. (eds) (2006) Immigrant Youth in Cultural Transition: Acculturation, Identity and Adaptation across Na tional Contexts, Erlbaul, Mahwah. 39. Ghodse, A. H. (2003) Invited commentary on globali zation and psychiatry. Advances in Psychiatric Treat ment, 9, 470 473. 40. Mumford, D. B., Whitehouse, A. M. and Platts, M. (1991) Sociocultural correlates of eating disorders among Asian schoolgirls in Bradford. British Journal of Psychiatry, 158, 222 228.

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41. Lavik, N. J., Hauff, E., Schrondal, A. and Solberg, O. (1996) Mental disorder among refugees and impact of persecution and exile: some findings from an out patient population. British Journal of Psychiatry, 169, 726 732. 42. Harrison, G., Amin, S., Singh, S. P. et al. (1999) Out come of psychosis in people of Afro Caribbean family origin. British Journal of Psychiatry, 175, 43 49. 43. Selten, J. P., Slaets, J. and Kahn, R. (1997) Schizo phrenia in Surinamese and Dutch Antillean immigrants to the Netherlands: evidence of increased incidence. Psychological Medicine, 27, 807 811. 44. Bhugra, D. (2004) Migration and mental health. Acta Psychiatrica Scandinavica, 109 (4), 243 258. 45. Becker, A. E., Burwell, R. A., Gilman, S. E. et al. (2002) Eating behaviours and attitudes following pro longed exposure to television among ethnic Fijian adolescent girls. British Journal of Psychiatry, 180, 509 514. 46. Mann, E. M., Ikeda, Y., Mueller, C. W., Takahashi, A., Kuo Tai Tao, Humris, E., Bao Ling Li, Chin, D. (1992) Cross cultural differences in rating hyperactive disruptive behaviors in children. American Journal of Psychiatry, 149 (11), 1539 1542. 47. Timimi, S. (2004) ADHD is best understood as a cultural construct. British Journal of Psychiatry, 184, 8 9. 48. Prout, A. and James, A. (1997) Constructing and Reconstructing Childhood: Contemporary Issues in the Sociological Study of Childhood, Falmer Press, London. 49. Kendell, R. E. (1975) The concept of disease and its implications for psychiatry. British Journal of Psychia try, 127, 305 315. 50. Calliess, I. T., Sieberer, M., Machleidt, W. and Ziegen bein, M. (2008) Personality disorders in a cross cultural perspective: impact of culture and migration on diag nosis and etiological aspects. Current Psychiatry Re views, 4 (1), 39 47. 51. Sachs, J. (2005) The End of Poverty, Penguin, New York. 52. Goldberg, E. M. and Morrison, S. L. (1963) Schizo phrenia and social class. British Journal of Psychiatry, 109, 785 802.

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53. Wiersma, D., Giel, R., De Jong, A. et al. (1983) Social class and schizophrenia in a Dutch cohort. Psycholo gical Medicine, 13, 141 150. 54. Lewis, G. and Araya, R. (2002) Globalization and mental health, in Psychiatry in Society (eds N. Sartor ius, W. Gaebel and J. J. Lopez Ibor), John Wiley & Sons, Ltd, Chichester, pp. 57 78. 55. Avotri, J. Y. and Walters, V. (1999) ‘You just look at our work and see if you have any freedom on earth’: Ghanaian women’s accounts of their work and their health. Social Science and Medicine, 48, 1123 1133. 56. Durkheim, E. (1947) The Division of Labour in Society, Free Press, New York. 57. Boydell, J., van Os, J. and McKenzie, K. (2001) Incidence of schizophrenia in ethnic minorities in London: ecological study into interactions with the environment. British Medical Journal, 323, 1336 1338. 58. Balon, R., Roberts, L. W., Coverdale, J. et al. (2008) Globalization of medical and psychiatric education and the focus of academic psychiatry on the success of international authors. Academic Psychiatry, 32 (2), 151 153. 59. Coverdale, R. L. (2007) Enhancing the international status of academic psychiatry. Academic Psychiatry, 31, 177 179. 60. Robertson, R. (1992) Globalization: Social Theory and Global Culture, Sage, London. 61. De Ramirez, Dominguez and Rosana, Romilia (2001) Effects of student ethnicity on judgments of ADHD symptoms among Hispanic and non Hispanic white teachers. Dissertation Abstracts International: Section B: The Sciences and Engineering, 62/4-B (2111), 0419 4217. 62. Jameson, F. (1998) Notes on globalization as a philo sophical issue, in The Cultures of Globalization (eds F. Jameson and M. Miyoshi), Duke University Press, Durham, North Carolina, pp. 54 77. 63. Mignolo, W. D. (1998) Globalization, civilization processes and the relocation of languages and cultures, in The Cultures of Globalization (eds F. Jameson and M. Miyoshi), Duke University Press, Durham, North Carolina, pp. 32 53.

13 Trauma and disasters in social and cultural context Laurence J. Kirmayer,1 Hanna Kienzler,2 Abdel Hamid Afana3 and Duncan Pedersen4 1

2 3 4

Division of Social and Transcultural Psychiatry, McGill University and Culture and Mental Health Research Unit, Jewish General Hospital, Montreal, Canada Department of Anthropology, McGill University, Montreal, Canada International Rehabilitation Council for Torture Survivors (IRCT), Copenhagen, Denmark Douglas Mental Health University Institute and Division of Social and Transcultural Psychiatry, McGill University, Montreal, Canada

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INTRODUCTION

Trauma and disasters are important causes of human suffering both in terms of the sheer numbers of people affected and the complexity of the mental health problems that may follow. Violence has become one of the leading causes of death worldwide for people aged 15 44 years [1]. Of the total number of global injury-related deaths, about two-thirds are of ‘nonintentional’ origin (e.g. traffic accidents) while one-third are due to intentional violence, including suicides, homicides and organized violence (terrorism, wars and armed conflict, genocide and ethnic cleansing) [2]. Both the frequency and the numbers of people affected by violence and disasters have increased markedly over the last 100 years, while the proportion of people surviving has also risen [3]. This means that there are many more survivors who may be affected psychologically by traumatic events. As the density of human habitation and the intensity of

technological development have increased, so too has the scale of disasters. Climate change, economic disparities and political conflicts all can be expected to compound the number and complexity of disasters in the years to come [4]. Social psychiatry has a long engagement with understanding the individual and collective impacts of trauma and disasters. Much of this interest has been driven by experiences of the impact of war on soldiers and civilian populations [5]. The Holocaust and other genocides have forced consideration of the effects of massive human rights violations on the survivors as well as on subsequent generations. The experience of refugees has drawn attention to the impact of displacement, forced migration and torture on mental health. Of course, trauma is not only a consequence of such large-scale events but also a common occurrence in domestic life. Early psychodynamic theory

Principles of Social Psychiatry, second edition Edited by Craig Morgan and Dinesh Bhugra Ó 2010 John Wiley & Sons, Ltd.

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recognized the importance of childhood trauma as a factor in psychopathology, although this was largely displaced by an emphasis on intrapsychic conflict [6]. From the 1970s onward, the recognition of the high prevalence of child abuse and its long-term consequences has given renewed impetus to the study of trauma in psychiatry [7]. Research on the impact of natural disasters has also influenced the development of psychiatric theory and practice. Eric Lindemann’s study of the aftermath of the fire at the Coconut Grove nightclub emphasized the processes of normal grieving and the value of crisis intervention to reduce pathological outcomes of trauma and loss [8]. His work led him

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to establish the first community mental health centre in the US in 1948 [9]. Kai Erikson’s study of the Buffalo Creek flood in 1973 drew attention to the long-term effects on wellbeing of the destruction of communal bonds and connectedness [10]. In recent years, disaster psychiatry and psychology have emerged as distinct areas of study with textbooks, journals and societies devoted to research and discussion of clinical and social issues [11]. This development of the field has brought recognition that trauma and disasters may be associated with particular types of mental health problems requiring culturally informed interventions at both individual and community levels [12].

DEFINING AND DELIMITING TRAUMA AND DISASTER

Trauma is a term originally applied to physical injury and some of its immediate effects. Since the late 1800s, trauma has increasingly come to refer to a range of psychological impacts of the experience or threat of violence, injury and loss [13]. Events that are considered traumatic include violent personal assault, rape, physical or sexual abuse, severe automobile accidents, being diagnosed with a life-threatening illness, natural or technological disasters, being kidnapped, military combat, being taken hostage, terrorist attacks, torture and incarceration as a prisoner of war or in a concentration camp. The term ‘trauma’ emphasizes what is common across these different events, but clearly each has its own particular meanings and consequences. Traumatic events vary widely in terms of the nature of the threat or injury, its frequency and duration, its personal significance (which may change over time), the relationship of the victim to the perpetrator (in the case of interpersonal violence or abuse), and the broader collective meaning and social response. What constitutes a trauma then is not entirely dependent on the nature of the event but also on the personal and social interpretation of the event and the responses of the affected person, their family and community, as well as the wider society. Culture influences the individual and collective experience of trauma at many levels: the perception and interpretation of events as threatening or traumatic; modes of expressing and

explaining distress; coping responses and adaptation; patterns of help-seeking and treatment response. Most importantly, culture gives meaning to the traumatic event itself, allowing individuals, families and communities to make sense of violence and adversity in ways that may moderate or amplify their impact. Disasters are situations or events involving ecological disruption, threat to life or injury that negatively affect large numbers of people and that overwhelm local capacity for adaptation, usually by destroying infrastructure. Disasters vary widely in their scale, scope and significance. It is useful to distinguish between natural and human-caused disasters. Natural disasters include geophysical and meteorological events like earthquakes, floods, tsunamis, tornados, volcanoes and drought. Human-caused disasters can be divided into: (i) technological accidents, such as airline or other mass transportation accidents, industrial accidents and structural collapses of bridges or buildings; and (ii) willful or intentional events such as mass murders, terrorism, war and genocide. The distinction between natural and human-caused, however, is often difficult to make and may change with new information and interpretations; for example, the destruction following an earthquake may become a human-caused disaster when it is realized that most of the deaths are due to the collapse of houses built with shoddy workmanship due to corruption in the construction industry. Many disasters span the natural and the

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human-caused because they stem from the ways humankind has modified the environment (e.g. famine due to the interaction of methods of intensive agriculture and drought). Natural and human-made disasters may co-occur and interact in ways difficult to disentangle. For example, drought or famine can be caused by warfare and warfare can be ignited by

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famine. The frequent coexistence and mutual aggravation of natural and human-instigated disasters is central to the notion of complex emergency, defined as a catastrophic situation marked by the destruction of a population’s social, economic, and political infrastructure [14,15].

UNDERSTANDING TRAUMA

From an evolutionary perspective human beings have lived with the threat of violence, injury and death throughout history. We might expect therefore that there are mechanisms available to help us adapt to threats that do not destroy us [16]. The most common response to mild or moderate levels of trauma is acute distress followed rapidly by recovery. We are biologically primed to learn to be fearful and avoidant of potentially life-threatening situations [17]. When threats are more severe and inescapable, other mechanisms come into play, including dissociation, a cognitive and attentional process of blocking out or compartmentalizing memory and experience. This too may have adaptive functions, allowing individuals to survive intolerable situations like torture or confinement, but it can also impair later adaptation. Although trauma can aggravate any psychiatric condition, certain disorders are presumed to have a direct causal link to trauma exposure. In any traumatic event, some individuals will have more severe or incapacitating acute symptoms and some will go on to have chronic distress and disability. Others may do well initially but manifest significant symptoms at a later time. These pathological outcomes reflect both individual and social vulnerabilities. Among the problems specifically linked to trauma are grief and other normal forms of reactive distress, depressive and anxiety disorders, and post-traumatic stress disorder (PTSD). Trauma exposure may result in a variety of shortand long-term adaptive and pathological responses. Common responses during or immediately after the traumatic event include intense autonomic arousal associated with fear, agitated behaviour or ‘freezing’, and dissociative symptoms with an altered sense of time speeding up or slowing down, and feelings of derealization and depersonalization [18]. About

15 20% of people exposed to such acute events have symptoms and impairment lasting for several days or weeks [19]. Acute stress disorder (ASD), introduced in DSM-IV, occurs within the first 4 weeks of trauma exposure and is similar to PTSD but with prominent dissociative symptoms [20]. A severe acute stress response is a predictor of longer term distress, including PTSD [21]. DSM-IV-TR classifies PTSD as an anxiety disorder that is characterized by the ‘re-experiencing of an extremely traumatic event accompanied by symptoms of increased arousal and by avoidance of stimuli associated with the trauma’ ([20], p. 429). The essential features of PTSD are the development of specific symptoms following exposure to an event that involved actual or threatened death, or serious injury, to which the person responded with ‘intense fear, helplessness, or horror’ (p. 463). In addition to the stressor criterion A, the criteria for PTSD include three main symptom clusters: (B) intrusive recollection intrusive thoughts, distressing dreams, reliving or dissociative ‘flashbacks’, psychological distress and physiological reactivity when exposed to reminders; (C) avoidant/ numbing efforts to avoid thoughts, feelings, conversations or activities associated with the stressor, difficulty remembering the traumatic event, social withdrawal and emotional numbing; and (D) hyperarousal sleep problems, irritability or angry outbursts, concentration problems, hypervigilance and an exaggerated startle response. The diagnostic criteria for PTSD in ICD-10 are similar but do not include numbing and do not require functional impairment; these differences result in higher prevalence rates for PTSD with ICD-10 criteria [22]. PTSD has an explicit causal mechanism built into its diagnostic criteria: exposure to an unexpected or

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unpredictable event that involves serious risk of injury or death to oneself or others and leads to appraisal of the event as threatening and so to intense fear, helplessness, horror and other negative emotions (shame, guilt, anger); these in turn influence memory and other cognitive-emotional-sensory processing of the event such that it leaves lasting traces in the brain and behaviour [23]. A major component of the syndrome of PTSD is subserved by a conditioned emotional response of fear [17]. Reminders of the context where threat originally occurred evoke anxiety and this is managed by cognitive and behavioural efforts to avoid such contextual cues, resulting in emotional numbing and withdrawal. Fear conditioning can be long lasting, but in the ordinary course of events, repeated exposure to the same cues without any fearsome outcome eventually results in a decrease in conditioned fear, hyperarousal and avoidance behaviour a process called ‘extinction’. It is now known that extinction involves a type of learning distinct from fear conditioning, involving different neural pathways. In fact, the original conditioned fear is not erased or replaced but simply suppressed by extinction learning. The two types of learning have different characteristics; fear conditioning is quicker and generalizes more easily than extinction learning. As a result, a small change in environmental cues can reinstate the originally learned fear [24,25]. This helps to account for the phenomenon of triggering or reactivation of symptoms in patients with PTSD [26]. These biological mechanisms are important for understanding the causes and chronicity of PTSD, the dynamics of triggering and re-experiencing, and the effectiveness of exposure therapy as a treatment, but PTSD involves additional cognitive and behavioural responses mediated by forms of learning and memory, as well as processes of recall and narrative elaboration that are regulated by the personal meaning of the traumatic events [27]. Both recollection and narration also involve social processes so that traumatic outcomes reflect the culturally sanctioned occasions for remembering and forgetting [28]. The prevalence of PTSD in any population depends, in part, on rates of exposure to trauma which, in turn, depend on social circumstances [29]. Traumatic events are common but unequally distributed in the

population. Surveys in the US have found 50 60% of individuals are exposed to a traumatic event at some point in their lives [30]. The likelihood of developing PTSD after a traumatic event varies with the type of event and the magnitude of the trauma, ranging from 5 to 10% of those exposed to a natural disaster, to 20% of those exposed to criminal assault, 40% of those exposed to combat and more than 50% of those exposed to rape [30,31]. Women appear to have a greater risk of developing PTSD after trauma exposure, although this may partly reflect gender differences in symptom expression [22]. PTSD was initially framed as a normal or at least inevitable response to extreme circumstances. However, longitudinal research soon clearly showed that only some individuals exposed to the same type of severely traumatic event develop PTSD and that premorbid personality and psychopathology are important determinants of vulnerability. As most people who show transient symptoms resembling PTSD (heightened arousal, anxiety, irritability, nightmares, intrusive thoughts) will recover over a period of days, weeks or months (depending on the severity of the trauma), PTSD can be viewed as a disorder of recovery [32]. Meta-analyses of risk and protective factors for PTSD show that among the strongest predictors of PTSD after trauma exposure are life stress and lack of social support [33]. Thus, social factors determine the risk of exposure to trauma and the likelihood of recovery. These risk and recovery factors are related to each other through the structures of family, community and wider social institutions. It is useful, therefore, to think of a social ecology of trauma risk and recovery [34]. Depression is also a common response in many situations involving trauma, particularly when there has been significant loss. The losses commonly associated with trauma and disasters may include loss of loved ones and possessions, but also loss of status, role, home, community and the familiar routines of everyday life. The co-occurrence of depression and PTSD complicates the course of each disorder [35]. Somatic symptoms are common consequences of trauma and may reflect physiological dysregulation as well as culturally shaped idioms of expression of distress [36,37]. For example, a study of Salvadoran women refugees in North America, who had fled El Salvador to escape large-scale political violence,

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found that the women described their suffering as ‘nervios’, a cultural idiom that covered an array of dysphoric emotions (anxiety, fear, anger) and diverse somatic complaints, including bodily pains, shaking, trembling and calor (sensations of heat). Although some of the bodily symptoms that follow trauma exposure may be related to PTSD, panic disorder,

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generalized anxiety disorder or depression, there are other processes of physiological dysregulation, increased muscle tension and bodily preoccupation mediated by cognitive and social processes that contribute to such ‘medically unexplained’ symptoms [38].

DISASTERS

Disasters have health impacts at multiple levels, individual (physiological, psychological), family, community, societal, international and global. The social impact of disasters reflects their magnitude, the level of pre-existing infrastructure, level of infrastructure preserved, the meaning of events (human-caused or not); the response of the community and local population; the response of government and larger society; and the international response. The impact of most disasters is more severe in developing countries, which lack resources and infrastructure to respond adequately. Although a whole population or community may be exposed to a disaster, people are affected differently. The psychological impact of a disaster on any given individual depends on both the personal and collective significance of and response to the catastrophic event. Groups recognized to be at particular risk for mental health consequences include women (especially pregnant women, single mothers, widows) and children. Internally displaced people, refugees and others previously exposed to trauma are also at increased risk for psychological re-traumatization. In general, people with pre-existing mental health problems, including depression and anxiety, are especially vulnerable [39]. The prevalence of psychiatric morbidity following a disaster is associated with its magnitude but also with the level of perceived threat to life and risk of recurrence, lack of predictability and controllability, loss, injury, exposure to the dead and grotesque, and the extent of destruction of community infrastructure [40]. Estimates of PTSD following a disaster range from 30 to 40% among those directly exposed to 10 20% for rescue workers and 5 10% for the general population [29]. Symptoms of depression and demoralization are strongly related to the degree of loss experienced as a result of the disaster [41].

Disasters are associated with increased levels of medically unexplained somatic symptoms both acutely and over survivors’ life spans [42]. Disasters lead to psychiatric morbidity through many pathways: physical injury, exposure to terrifying events, loss of loved ones, loss of employment, livelihood and income, loss of familiar environment, domestic and communal place. These losses and injuries interact with other social determinants of health including pre-existing social structural and political problems. For the same amount of loss and physical damage, human-made disasters may have more severe psychological consequences owing to the ways they undermine basic social emotions of trust and solidarity. There are three broad approaches to the impact of trauma and disaster on mental health outcomes. The clinical psychiatric approach focuses on the effects of trauma in causing psychopathological conditions like PTSD, depression and other potentially disabling conditions. Individual vulnerability due to pre-existing personality traits, coping styles and mental health problems help predict who will develop persistent problems after trauma exposure. A second approach focuses on individuals’ resources and resilience. For example, conservation of resources (COR) theory, developed by Hobfoll, groups resources into four broad categories: object resources (e.g. material possessions with either functional utility or symbolic value); condition resources (e.g. social roles or status like marriage, employment, membership in groups or organizations); personal characteristic resources (e.g. values, traits or attitudes like optimism, sense of meaning and purpose); and energy resources (e.g. time, money, information) [43]. Resource loss due to trauma is associated with distress [44]. Disasters produce distress and limit coping

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by reducing individuals’ resources in each of these areas. Coping and adaptation, therefore, can be improved by interventions that maximize these resources. Of course these resource domains are not independent but correlated in ways that reflect a community’s social structure and dynamics. A third approach recognizes the dynamic nature of the interaction between different resource domains and focuses on the role of social positioning in individual and group vulnerability and resilience. This more dynamic view could be termed ‘social ecological’, in that it sees each person as located within a system that has its own dynamics. Disasters differ from isolated traumatic events affecting individuals in that they affect the whole community, which ordinarily provides the secure base for each person’s adaptive responses to stress, trauma and loss. Depending on the degree to which a disaster disrupts the social fabric and weakens bonds between people, communities may respond with mobilization and increased solidarity or with demoralization, disorganization and disintegration. The level of psychiatric distress in the population plays a role in these social responses, but they have their own dynamics that reflect local histories and systemic issues of politics, identity and community. These local systemic dynamics are embedded in larger global economic and political responses that influence the mental health outcomes of disasters. In the face of a disaster that do not destroy too much infrastructure, communities may pull together and experience a high degree of solidarity. For example, in January 1998, Quebec experienced an ice storm in which the accumulation of ice brought down the main power transmission lines into the city of Montreal, leaving 3 million people without electricity in the midst of winter. Despite the challenge posed by this loss of power and cold temperatures, there was an enhanced sense of comradery among neighbours, who heated water for coffee over camping stoves and huddled around battery-operated radios waiting for news. There was no increase in use of mental health services by patients with severe mental illness [45]. However, even during this relatively limited event, with little social disruption or loss of life, many people experienced high levels of stress with potential long-term sequelae. For

example, there is evidence for an effect of maternal stress during the ice storm on the subsequent cognitive development of their infants who were exposed in utero [46]. At the other extreme in terms of the magnitude of disaster, in Sri Lanka following the tsunami of 26 December 2004 there was massive loss of life and destruction of entire settlements and villages along two-thirds of the country’s coast. This occurred against a backdrop of political violence that had affected the country for decades, eroding family stability and community solidarity [47]. A survey in one severely affected area found that 40% of the population had mild to moderate symptoms of depression, anxiety or PTSD [48]. Another survey of children living in three tsunami affected areas found rates of PTSD that were not related to the tsunami of 4.6 8.5%, while tsunami related PTSD was found in an additional 13.9 38.8% [49]. Another study of adolescents from two villages in southern Sri Lanka found that post-tsunami depressive and PTSD symptoms were associated with prolonged displacement, social losses, family losses and their mothers’ level of mental health problems [50]. A positive mother child relationship had a protective effect. Generally, human-caused disasters result in more psychiatric morbidity than those that are attributed to natural events [51]. When events can be attributed to specific individuals or groups, fear and anger may be directed towards them. When the human causes are harder to identify, emotional distress may be more diffuse and anger may be harder to resolve, with greater risk for long-term mental health consequences. Disasters due to terrorism are a dramatic illustration of these factors both because terrorist acts are directly caused by individual agency and because they deliberately aim to maximize the anxiety, insecurity, helplessness and vulnerability of a population [52]. In the wake of the attacks of 11 September 2001, high levels of symptomatology were reported not only among those directly affected at the ground zero, or living in the city of New York, but across the country. A survey immediately following the attacks found that 44% of adults had one or more ‘substantial’ symptoms of distress [53]; two months later this dropped to 16% [54]. New categories of trauma emerged, like

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vicarious PTSD incurred while watching repetitive TV images of the attacks [55]. The threat of recurrence became an ongoing preoccupation, contributing to a new sense of collective vulnerability. Of course, the distinction between ‘natural’ catastrophes like earthquakes, tsunami, hurricanes and human-caused catastrophes like industrial accidents, war or terrorism depends on specific ways of interpreting events. Some people in the US believe that government should control the forces of nature; hence natural disasters can be blamed on human error or malfeasance [56]. From some religious or cultural perspectives, all events may have moral meaning as part of causal chains that include human or spiritual agency (like karma, sin or divine judgement). Contrariwise, people may view even events caused by human agency as preordained or following an impersonal logic. Thus, in the Cambodian genocides perpetrated by the Khmer Rouge, many people interpreted the catastrophe as following from their individual kamma (karma) and so felt a measure of responsibility for their own misfortune [57]. This attribution mutes the external expression of anger and desire for revenge

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and urges the survivor to follow a morally upright path. On the other hand, karma implies an ultimate moral order that would ensure that the perpetrators of the atrocities will pay for their actions in future miserable rebirths. Political circumstances also may limit any possibilities to name perpetrators and seek justice or redress. Even events that seem to be entirely natural exert their effects unequally on a population in ways that reveal pre-existing social inequalities and injustices. In recent earthquakes, the pattern of destruction has reflected economic disparities and corruption as those with substandard housing, built by ‘cutting corners’, were most affected. The flooding of New Orleans due to hurricane Katrina had differential effects on the poor and marginalized that reflected the long history of racial discrimination [58]. Thus a natural disaster laid bare the structural violence of society. This social meaning has both material and moral consequences, influencing who finds safe haven and looks forward to rebuilding their life and who endures prolonged displacement, neglect and despair.

TECHNOLOGICAL DISASTERS

Urbanization and industrialization have brought with them many benefits but also new types of collective vulnerability. Mass transportation has created the potential for accidents that affect hundreds of people in an instant. New technologies have created new types of disaster with unique characteristics that follow from their unique physical properties. For example, the release of radioactivity from the Chernobyl disaster had long-term and long-range effects with an increase in cancer and other radiation-related diseases [39]. The petrochemical disaster in Bhopal resulted in an enormous range of respiratory, ocular, gastrointestinal and other conditions [59]. In both cases, there were also long-term psychological effects on the exposed populations, with persistent feelings of anxiety, depression and medically unexplained symptoms. Independent of actual exposure, the conviction that one has been exposed to toxic chemicals or radiation may be a risk factor for long-term psychological

distress, even among those who emigrate from the site of disaster [60]. Those who are evacuated may be at increased risk for mental health problems owing to the disruption of their lives. However, those who remain in the vicinity of an industrial accident may face the greatest challenge. In the case of the Three Mile Island nuclear reactor accident, people who continued to live near the reactor reported feeling less control over their lives and this was associated, in turn, with higher levels of somatic, anxiety and depressive symptoms even years after the event [61]. The legal and political meaning of technological disasters may bring vulnerable populations into direct conflict with powerful commercial interests. Technological disasters may be viewed as accidents due to risks inherent in a useful technology or as stemming from human errors, action or inaction. To the extent they are viewed as due to human action, there is always some person or corporate entity to blame. However, large corporations often are able to deflect the efforts of

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individuals or groups to seek redress. Ongoing litigation and struggle over restitution from those responsible for the catastrophes can greatly complicate the prospects for recovery, as illustrated by the protracted struggles over compensation following the Exxon Valdez oil spill [62]. The spill disrupted fishing activ-

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ities, creating severe economic hardship, but those who were plaintiffs in the civil suit suffered greater levels of stress over the course of the litigation. The persistent anger associated with perceived injustices that have not been acknowledged or redressed contributes to longterm distress following technological disasters [63].

WAR AND POLITICAL VIOLENCE

Ethnic conflict, organized violence and wars have been major causes of suffering, ill health and mortality throughout history [2]. In recent decades, the number of victims and survivors of traumatic events has significantly increased as war, armed conflict and political upheaval have engulfed civilian populations worldwide, contributing to additional burden of disease, death and disability. War has always exposed both combatants and civilians to trauma but, with the adoption of new methods of warfare, recent years have seen a dramatic increase in the proportion of civilian casualties. During World War II, about 50% of the direct casualties were civilians; in the 1980s this figure rose to 80% and by 1990 it was fully 90%, with the largest number being women and children [64]. War and political conflicts have structural causes and often occur in societies that are already facing economic hardship. The collapse of formal economies and the emergence of economic crises in the marginal areas of the global economy lead to further impoverishment, food insecurity and ethnic and religious tensions over diminishing resources. Consequently, predatory practices, rivalry, political violence and internal wars may erupt [65]. In the last 60 years there have been over 200 wars and armed conflicts, in which the main targets are often the poorest sectors of society and marginalized ethnic groups. Armed conflict results in significant psychiatric morbidity but the pattern varies across cultures. In a study of 3048 respondents in Algeria, Cambodia,

13.7 Refugees fleeing war or persecution are very vulnerable as they cannot count on protection from their own state, and it is often their own government that is

Eritrean refugees in Ethiopia and Gaza in Palestine, de Jong, Komproe and Van Ommeren compared rates of depression, anxiety disorders, PTSD and somatoform disorders among those exposed to armed-conflict-associated violence and those without such exposure [66]. Overall, PTSD was the most common disorder for those directly exposed to violence, while anxiety disorders were the most common disorder for those not directly exposed. There were high levels of comorbidity of PTSD with anxiety or mood disorders in Algeria and Cambodia. However, there was also substantial variation in the overall prevalence and relative rates of disorders, which was due not only to the nature or severity of the disorder but to cultural variations in modes of expression of distress. For example, in Cambodia, anxiety disorders were more common than PTSD among those exposed to violence. Somatoform disorders were more common among those exposed to violence only in the Palestine sample. The health consequences of political violence and wars extend beyond death, disease and trauma-related psychiatric illness, to include the pervasive effects of destruction of the economic and social institutions and the whole fabric of society. As such, the consequences of violent conflict can be observed not only in individuals in their biographies and life trajectories but also in collective memory and identity and communal strategies for coping with violence and adversity [65,67].

REFUGEES responsible for threatening and persecuting them. The 1951 Refugee Convention defines a refugee as someone who ‘owing to a well-founded fear of being

TRAUMA AND DISASTERS IN SOCIAL AND CULTURAL CONTEXT

persecuted for reasons of race, religion, nationality, membership of a particular social group, or political option, is outside the country of his nationality, and is unable to or, owing to such fear, is unwilling to avail himself of the protection of that country’ [68]. The Refugee Convention obligates governments to provide a safe haven for those fleeing persecution. However, many countries treat refugee claimants with suspicion and have policies aimed at discouraging others from seeking asylum [69]. These policies of deterrence, which may include detention under harsh conditions, have serious mental health effects [70]. Epidemiological studies have demonstrated both short- and long-term effects of trauma on refugee mental health and disability. For example, a survey of Vietnamese refugees who resettled in Australia found that 8% of the participants had mental disorders [71]. Trauma exposure was the strongest predictor of mental health status. Although the risk of a mental disorder decreased over time, people who suffered more than three traumatic events had a higher risk of mental illness after 10 years compared with people with no traumatic exposure. A longitudinal study of Bosnian refugees found that fully 45% met DSM-IV criteria for depression, PTSD or both [72]. A meta-analysis of 56 reports published from 1959 to 2002, representing 22 221 refugees, found that mental health status was worse among those living in institutional accommodation, with restricted economic opportunity, internally displaced, repatriated to a country they had fled or with unresolved conflicts in their country of origin [73]. A study of 1348 refugees from

13.8 Torture constitutes an extreme form of trauma in which the perpetrator actively seeks not only to threaten the victim with pain, injury or death but also to dehumanize, control, humiliate and oppress the victim, and through them, a whole community [79]. Despite international efforts to prevent torture as a human rights violation, it continues to be practised by many countries [80]. The attack on the World Trade Centre on 11 September 2001 led to an increase in torture practices when many countries joined the so-called ‘war on terror’, using the slogan of ‘protecting public security’ to justify the use of

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Vietnam and Laos who were resettled in Canada after having lived in refugee camps for a variable period of time, found that although chronic strain (such as flight, internment and resettlement) was a major risk for mental health problems, post-migration factors, including support from the ethnic community and the prospect for integration in the receiving society, were crucial determinants of outcome [74]. For refugee children as well as for adults, the quality of their post-migration reception in the new country is a better predictor than pre-migration trauma exposure of mental health [75]. Survivors of political violence, persecution or torture, who must flee their countries of origin to survive, suffer complex losses and transitions associated with forced migration, the process of seeking asylum and the enduring dilemmas of exile [69]. The process of convincing immigration authorities that one has been tortured and so has a valid claim to refugee status may in itself become a situation of psychological retraumatization [69,76,77]. This may be exacerbated by the fact that such individuals may be reluctant to divulge experiences like torture, rape or other forms of trauma in health care settings. Refugees also may have continuing fears for the safety of family left behind and uncertainty about the possibility of reuniting with loved ones. Despite the profound impact of trauma on wellbeing, post-migration factors including social supports, employment and occupational status are among the strongest predictors of positive outcome [73,74,78]. Effective resettlement policies and programmes can therefore make a significant contribution to refugee mental health.

TORTURE torture to extract information human rights violations in which health care professionals took part [81 84]. In reality, torture yields unreliable information and is used primarilyas a tool for repressingpolitical oppositionand instilling fear in the community and society at large. The political use of torture has a corrosive effect on the moral order of a society and constitutes an important obstacle to the development of democratic institutions and universal human rights [85]. Compared to other forms of trauma or natural disasters, torture constitutes a profound violation of

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personal integrity and dignity because it undermines the moral basis of human relatedness and community. Perpetrators create a situation of extreme powerlessness, uncertainty and loss of control in their victims, but the effects of torture spread far beyond the immediate victim to include fragmentation of family and community networks through the spread of fear and mistrust, and the erosion of social and political solidarity [86 90]. Torture involves a wide range of methods of physical and psychological abuse with diverse consequences for survivors. Rape and related forms of sexual torture have especially severe effects for both men and women [91]. Survivors who had strong political convictions and were prepared for the possibility of being tortured due to their activism generally fare better than those for whom the torture was arbitrary or unrelated to their convictions [92,93]. Many forms of torture leave victims with profound feelings of shame, guilt and disgrace because of the powerlessness, degradation and humiliation they have experienced, and this may impede help-seeking [94,95]. Individuals who must continue to live in proximity to the perpetrators of violence and torture must suppress or ‘manage’ their feelings to maintain the social order [96,97]. Common sequelae of torture include symptoms of anxiety, depression and symptoms of acute stress disorder with dissociative symptoms [98]. Post-traumatic stress disorder (PTSD) is very common among survivors and its likelihood increases with the severity of the torture [83,93,99]. Other common symptoms that may occur with PTSD or independently include: chronic pain, sexual dysfunction, phobias, nightmares, memory impairment, social withdrawal, difficulty maintaining intimate or long-term relationships, and psychotic-like symptoms including ideas of re-

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GENOCIDE

The United Nations Convention on the Prevention and Punishment of the Crime of Genocide (CPPCS), defines genocide as: . . . any of the following acts committed with intent to destroy, in whole or in part, a national, ethnical, racial or religious group, as such: killing members of the

ference and superstitious thinking. Chronic pain may reflect neuropathic damage from torture, links between bodily sensations of memories of torture, processes of somatic amplification due to psychological distress and culturally shaped idioms of distress that encourage a focus on the body [100 102]. Feelings of violation, anger and injustice, while not always correlated with PTSD or another psychopathology, may constitute significant clinical problems in their own right [103]. The anger and aggression that survivors often experience as a consequence of their torture experiences may be displaced on to other people, particularly their families. Even when there is no overt conflict or abuse within the family, children may be strongly affected by the suffering of their parents and the community. For example, Punamaki, Qouta and El Sarraj found that exposure to traumatic events increased Palestinian children’s political activities and psychological adjustment problems’ both effects were independent of the quality of perceived parenting [104]. Rehabilitation interventions therefore must be extended to include the families and communities of the victims. Treatment of survivors of torture requires a broad perspective on mental health that encompasses family, community and the politics of social integration. Community-based approaches have become increasingly accepted as an integral part of treatment. This model calls for a broader role for health professionals as advocates and facilitators who work collaboratively with other nonmedical professionals from law, media, community development and human rights to promote empowerment as survivors are assisted to help themselves. The focus of rehabilitation is on strengths rather than weaknesses, resilience rather than vulnerability, health not disease.

group; causing serious bodily or mental harm to members of the group; deliberately inflicting on the group conditions of life calculated to bring about its physical destruction in whole or in part; imposing measures intended to prevent births within the group; [and] forcibly transferring children of the group to another group.

TRAUMA AND DISASTERS IN SOCIAL AND CULTURAL CONTEXT

The Holocaust and other genocides (e.g. in Rwanada, Bosnia Herzegovina, Cambodia) have starkly presented the immediate and transgenerational effects of massive human rights violations and the systematic destruction of communities [105]. Despite recognition of these catastrophes, there has been a tragic lack of political will in the international community to intervene in ways that could prevent or mitigate the loss of life. Clearly genocide, involving violence on a massive scale, can have severe effects on survivors’ mental health. A study of four communities affected by the genocide in Rwanda found the prevalence of PTSD symptoms depended on traumatic exposure and varied from 12.2 to 33.8% [106]. A study of refugee survivors of the genocide in Bosnia-Herzegovina who resettled in Australia found no differences in PTSD risk for the group most exposed to human rights violations (internment in concentration camps, torture) compared to the general war-exposed group [107]. Exposure to a threat to life predicted PTSD, while both threat to life and traumatic loss were associated with symptom severity and disability. Mass human rights violations such as those that occur in situations of political violence, ethnic cleansing or genocide have effects at many levels. At the level of the individual, Silove has described these effects in terms of different adaptive systems, including systems involved in safety, attachment, sense of justice or fairness, existential meaning and social role or identity [87,108]. Each of these biosocial systems gives rises to specific forms of distress in response to specific types of threat or loss (Table 13.1). There are a variety of psychological and social adaptive responses that aim to re-establish the normal functioning or equilibrium of the system and when those fail, particular forms of psychopathology may result. Intervention strategies can be viewed as acting to restore these adaptive functions. These same mechanisms operate in other forms of trauma and disasters to varying degrees. There has been much interest in the possibility of transgenerational transmission of trauma in the context of genocide [109,110]. Clearly, however, the experience of the second and third generation is not precisely the same as the first and the pathways of transmission point also to a transformation in the

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nature of suffering. A parent who has endured great trauma in a concentration camp may react in many ways: with irritability, distraction or overprotectiveness. Each of these will have different effects on the child, all of which might be attributed to the parent’s trauma. In most cases, these are not PTSD but problems in adjustment, anxiety, interpersonal relationships and so on. Yehuda and colleagues examined transgenerational trauma in a group of adult offspring of Holocaust survivors and a demographically similar comparison group [111]. Although adult offspring of Holocaust survivors did not experience more traumatic events, they had a greater prevalence of current and lifetime PTSD and other psychiatric diagnoses than the demographically similar comparison subjects. The findings demonstrate an increased vulnerability to PTSD and other psychiatric disorders among offspring of Holocaust survivors, thus identifying adult offspring as a possible high-risk group within which to explore the individual differences that constitute risk factors for PTSD. Other studies have little evidence of increased psychopathology in the second- and third-generation children of Holocaust survivors [112]. Individual stories of trauma serve to ground collective identity and call for a moral and political response. The appropriation of trauma to stabilize a collective identity may have benefits for the individual. There must be a public place for stories of trauma for them to be told, acknowledged and legitimated. Collective identity, history and legal mechanisms can play a role in creating this place. Transgenerational links may serve psychological and political functions, becoming a central theme in the individual’s identity and a basis for the political aspirations of a group or even a nation [113]. For example, for indigenous peoples in North America, current mental health problems prevalent in some communities have come to be seen as the consequence of historical trauma following from European colonization of the Americas and subsequent policies of forced assimilation [114,115]. The effort to survive as a people when a whole way of life has been undermined and dismantled poses special social, moral and psychological challenges that are not captured by constructs like PTSD [116,117].

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Table 13.1

Adaptive systems affected by severe trauma, torture and human rights violations Function of system

Threat

Initial response

Adaptive strategies

Safety and security

Avoidance of danger

Injury or death

Fear Hypervigilance Fight or flight

Seeking safety and reassurance Self soothing Protectiveness toward self and others Cognitive mastery of fear

Anxiety PTSD GAD

Mourning and bereavement rituals Reaffirming and establishing bonds with others

Depression

Anger

Reassertion of rights

Chronic anger and mistrust

Lack of trust Suspicion of others

Restitution and redress

Paranoia Antisocial behaviour

Loss of work and status

Confusion

Social activism

Alienation

Destruction, suppression or denigration of social and economic institutions

Aimlessness

Rebuilding community and institutions

Helplessness

Attachment

Maintenance of bonds of family and community

Loss of loved ones

Grief

Loss of place or other objects of attachment

Nostalgia

Panic disorder

Homesickness Justice, fairness, equity

Social role, identity

Maintenance of social equity, exchange and reciprocity

Maintenance of positively valued sense of self and personhood

Discrimination, injustice, human rights violations

Passivity Existential meaning

Maintenance of cognitive coherence and stability of plans

Destruction, suppression or denigration of core symbols and way of life

Confusion

Disorganization

Adapted from References [87] and [108]; modified with observations from Reference [47].

Reclamation, revitalization or reinvention of tradition

Demoralization

Isolation Withdrawal Despair

COMPONENTS OF THE SOCIAL WORLD

Pathological outcomes

Adaptive system

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INTERVENTIONS

Current clinical guidelines for the treatment of trauma emphasize cognitive behavioural therapy, exposure therapy and the treatment of comorbidity (most often depression, anxiety disorders, substance use) [118]. There is some evidence for the effectiveness of trauma-focused psychotherapeutic interventions for individuals with persistent trauma-related symptoms or PTSD [119]. Prolonged exposure therapy aims to allow extinction of conditioned emotional responses of fear. Cognitive behaviour therapy works more broadly to change modes of interpreting and responding to trauma cues, reduce catastrophizing thoughts and reinforce adaptive coping. Narrative exposure therapy involves a blend of approaches and can be used with both children and adults across cultures [120 122]. It involves constructing a life narrative than includes a review of traumatic experiences, revisiting the associated emotions and bodily feelings to allow habituation to the physiological arousal; the process of narration gives the trauma memories and experiences structure through retelling and composing a written testimony. Although antidepressants and other medications are widely used, there is little evidence for the effectiveness of pharmacotherapy in the treatment of PTSD or trauma-related disorders [123]. Treatment is usually symptomatic, to improve sleep, control pain and treat concomitant depression and anxiety. Beta-blockers have been used to reduce autonomic arousal. There is intriguing evidence that the use of propranolol during a guided process of trauma recall can diminish emotional arousal on subsequent recollection without the presence of the medication [124]. This raises the prospect that it may be possible to decouple trauma memory from some of its distressing and disabling physical effects. There is increasing recognition of the need to consider mental health issues in disaster relief. The 2004 guidelines produced by the Sphere Project, which involved a global consultation process to establish minimum standards for humanitarian response, cover mental health for the first time [125]. There is an

emerging consensus on best practices in disaster management, although the evidence base is limited [126]. The WHO Report on ‘Mental Health in Emergencies’ and the Inter-Agency Standing Committee (IASC) emphasize that it is crucial to protect and improve people’s mental health and psycho- social wellbeing in the midst of an emergency through (a) psychological first aid provided by a variety of community workers for people experiencing acute trauma-induced distress and (b) care by trained and supervised health staff for people with severe mental disorders, including severe PTSD [127,128]. The principles of psychological first aid include: maintaining a calm presence, providing a safe and comfortable setting, stabilizing emotionally overwhelmed survivors, gathering information about current needs and concerns, providing practical assistance, giving information about common psychological reactions and appropriate coping strategies, and linking the individual with local services and sources of further help. Humanitarian aid workers and community leaders need training in the basic psychological skills required to provide psychological first aid, emotional support and recognition of common mental health problems that should be referred to professionals [129]. Despite the consensus on best practices in an initial disaster response, there are still many questions about appropriate interventions. The interventions offered in disaster situations are diverse and include material support (shelter, food, clothing), psychoeducation, psychological debriefing, cognitive behavioural therapy (CBT), narrative exposure therapy, eye movement desensitization and reprocessing (EMDR) and community-based interventions. CBT and narrative exposure therapy have been shown to be helpful for individuals with trauma-related PTSD [122,130], and community-based approaches that work towards strengthening social supports and reintegration may fit better in some cultural contexts [131]. However, there is a lack of strong evidence for any specific treatment. Although exposure therapy has proven effective for isolated discrete traumas, it remains uncertain

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whether it is equally effective for those exposed to multiple, repetitive or pervasive trauma like that seen in survivors of torture or genocide [132,133]. There is little evidence that psychoeducational approaches can help prevent post-traumatic disorder or other types of psychological distress [134]. While there may be other benefits from existing interventions, and they may work for some individuals or groups, more work is needed to identify effective prevention strategies. Psychological debriefing, which until recently was a popular intervention, is no longer recommended. Debriefing is based on the assumption that retelling the trauma story provides emotional release, relearning and cognitive reorganization. One influential version was developed as a group intervention in the US, as a support method for fire fighters [135]. This was a work group of professionals who knew each other, who were exposed to similar traumatic events, were trained to respond to disasters and remained connected to a larger stable social environment. All of these contextual elements may not be present when the method is applied in other settings: the people affected may have been thrown together by the events, they may have experienced very different levels and types of threat and loss, they may face a profoundly disrupted social environment and they may come from a cultural background that does not encourage open expression of private feelings or potentially shameful events. Even in the US, there is evidence that the intense re-exposure that may occur in psychological debriefing can retraumatize some individuals. The funding and delivery of humanitarian aid is increasingly organized on an international level to facilitate faster and more effective responses to major

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emergencies affecting large numbers of people. As a result, however, disaster scenes may be inundated by mental health professionals and other disaster workers who further strain local resources and inadvertently contribute to the problems rather than to their solution. There is agreement that post-disaster strategies must address the broad impact of disasters, promoting a sense of safety, calming, self- and collective efficacy, feelings of connectedness and hope [136]. Translating these general goals into specific interventions, however, requires consideration of individual and community psychology, an ecosocial perspective and awareness of local social, economic and political constraints and cultural meaning systems. Cultural issues have been only minimally integrated into current disaster guidelines [137]. Cultural issues raise important considerations in the practical response to disaster that may have mental health consequences. Efforts to rebuild infrastructure that do not sufficiently consider the social and cultural context may have negative effects on post-disaster adaptation. Following the 2004 tsunami, large quantities of aid poured into several Asian countries (in part because foreigners saw the tsunami as a blameless misfortune) and communities pulled together to confront and cope with adversities [138]. In Sri Lanka, for example, the aid was used to reconstruct housing in ways that have proved problematic for some communities. Fishermen were moved inland and resettled in houses built without the accustomed level of privacy, organization of interior space and ability to accommodate extended family [139]. Lack of attention to cultural context undermined the effectiveness of this well-intentioned support.

CONTINUING CONTROVERSIES

In addition to the unresolved questions about treatment efficacy, there are broader controversies in the field of trauma and disaster mental health, concerning the cross-cultural applicability and utility of the diagnosis of PTSD; the value of testimony or explicit talk about trauma versus containment; and the role of Truth and Reconciliation Commissions or other forms of restorative justice in recovery.

The construct of PTSD has been valuable for focusing attention on one specific form of anxiety response, but limited in terms of the wide range of impacts and the importance of other personal and social factors in producing resilient outcomes or prolonged suffering and pathology. The field of trauma and disaster psychiatry is far wider than the compass of PTSD. Although the symptoms of PTSD can be identified across cultures, its clinical and social relevance

TRAUMA AND DISASTERS IN SOCIAL AND CULTURAL CONTEXT

remain contentious. Structured diagnostic interviews and self-report scales based on the diagnostic criteria for PTSD have been translated into local languages, permitting investigators to distinguish trauma-related disorders from similar kinds of psychological distress. Other scales are available to assess the level of trauma exposure and trauma-related symptomatology [140]. These include the Harvard Trauma Questionnaire (HTQ) and measures for assessing anxiety and depression [141]. These instruments can be adapted to new cultural groups, though problems of clinical and cultural validity remain [142]. However, symptoms tend to be nonspecific indicators of distress and, in themselves, do not demonstrate the presence of a discrete disorder of clinical significance. Measures of functional impairment are essential to define a threshold for disorder warranting clinical attention. Critics argue that mainstream approaches to diagnosis and treatment overlook the extent to which trauma experience is culture-specific. The Western discourse on trauma is embedded in a particular cultural and moral framework and becomes problematic in other cultural contexts [143]. Personal, political, social and cultural factors mediate the experience of war or other forms of violence. Practitioners unfamiliar with the local culture and situation apply generic assessment tools and interventions that force individuals into a limited repertoire of categories and responses [144]. People are encouraged to understand their suffering through the prism of individualistic psychological models that may not fit local values and concepts of the person [145]. As well, the dominance of the PTSD model tends to suppress other approaches and silence local perspectives on what is helpful and important in the wake of a disaster. The distress and suffering that accompany war or other forms of collective violence are not necessarily pathological responses to traumatic events, but may be normal responses to existential predicaments [146]. Such suffering is resolved in a social context through familial, sociocultural, religious and economic activities that make the world comprehensible for people before, during and after catastrophes [14,147]. The roots of recovery from trauma and disaster lie in the restoration of the functional social environment, i.e. through improved living conditions, activities, employment, a stable community and social order.

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On this view, instead of offering psychological counselling, humanitarian aid programmes should acknowledge resilience and retain the social rehabilitation frameworks, starting with the strengthening of damaged local capacities in line with local priorities [148]. A related controversy concerns the appropriate strategy for dealing with severe trauma of the sort found among refugees and survivors of torture. While some approaches to rehabilitation of survivors of torture, genocide or other human rights violations emphasize the importance of giving testimony, this may not fit well with all social, cultural or religious contexts. The value of testimony has been embraced in Latin America and taken up by the International Rehabilitation Council for Torture Victims in Copenhagen [149]. However, many Asian traditions emphasize the values of equanimity and containment and may view the open airing of suffering as unhealthy and disruptive to the social order. Political and mental health goals then come into conflict with social norms and cultural values and the implications of this for trauma outcomes remain uncertain. Part of the benefit in telling one’s story comes from giving it a coherent frame, part comes from having a sympathetic other person bear witness and part comes from the larger social historical process of recording a personal and collective truth. However, all of these depend to some extent on the social reception of the testimony. Further work is needed to understand the tradeoffs involved in speaking out or remaining silent in specific social, cultural and political contexts [150,151]. The functions of testimony have taken on new dimensions in the context of Truth and Reconciliation Commissions like that of South Africa, which aim to restore justice and moral order to a community rent by longstanding political violence and injustice. This, in turn, has raised questions about the social mechanisms for reconciliation and forgiveness that hope to repair both the justice and existential systems by ensuring public acknowledgement of past human rights violations and providing a healing ritual that brings some closure to otherwise unassimilable events. The metaphor of the psychological wound and the notion of healing have governed the truth and reconciliation process. However, this is an inaccurate or incomplete model of the complex psychological and social

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processes put into play; the process involves issues of justice, equity and safety as well as woundedness and wholeness [152]. The ability of victims and their families to participate in legal proceedings or other public means of holding perpetrators accountable may provide comfort for them; it may also act as an effective tool for the prevention of torture [153]. In some instances, however, the truth and reconciliation process can be harmful to participants. Individuals who already have PTSD may benefit little and may have their traumatic memories activated and experience an exacerbation of

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their condition [154]. The public, ‘quasi-legal’ context of the Truth and Reconciliation Commission may be threatening to some people and destabilizing for a community. Mental health practitioners have a role to play to ensure that the process of recounting does not cause further damage. This may involve helping to design a setting and procedure that is therapeutic (e.g. by giving control to the narrator) and supporting individuals participating in Commission hearings [155]. Other forms of restorative justice based on traditional methods of conflict resolution face similar challenges when applied to mass violence.

CONCLUSION

Trauma has become a dominant trope in discussions of the contemporary world [156]. Like any metaphor it reveals and it conceals. What the metaphor of trauma reveals is the supervenient effects of extreme violence on suffering. Even healthy people can be torn down and permanently marked by the most severe forms of violence. Yet the response of most people, even to serious trauma, is resilience and recovery. A social and cultural perspective suggests that it is crucial for clinicians to understand traumatic events and disasters in their broader social, economic and political context. These politics shape the production of psychiatric knowledge about trauma, the personal social and cultural contexts that are singled out for clinical attention, the ways that professionals and institutions apply trauma diagnoses and treatment, the dynamics of social support and the processes of conflict resolution. Although violence always has very personal impacts, it is clear that states, international organizations, global economic institutions and mass media are all involved in the creation, maintenance and resolution of the conflicts that lead to structural, interpersonal and mass violence [157]. Suffering is fundamentally a social experience in several ways: it involves an interpersonal engagement with pain and hardship lived in intimate and communal social relationships; it is framed in terms of available cultural models of the nature of adversity and corresponding appropriate moral responses; and it is part of professional discourses of medicine and the mental health pro-

fessions that organize forms of suffering as bureaucratic categories and objects of technical intervention [158]. Understanding stories of trauma requires an understanding of the collective dimensions of violence and social suffering. Trauma experience is embedded in and emerges from multiple contexts, including biological processes of learning and memory; embodied experiences of injury, pain and fear; narratives of personal biography; the knowledge and practices of cultural and social systems; and the power and positioning of political struggles enacted on individual, family, community and national levels [27]. The language of trauma, however, tends to draw a simple arc from the violent event through the psychological processes of the individual (where they may exhibit resilience or vulnerability) to bodily symptoms of affliction. In reality, the events we call trauma are part of larger configurations of suffering that have their own social ecology and political economy. Discrete trauma and disasters occur against a backdrop of structural violence that renders some groups and individuals far more vulnerable; focusing exclusively on the trauma may deflect attention from these enduring forms of disadvantage in some instance, however, a catastrophe may throw these into stark relief as was seen, for example, with hurricane Katrina. It is important for mental health practitioners and psychiatric researchers to appreciate these larger social contexts of suffering. Without such awareness,

TRAUMA AND DISASTERS IN SOCIAL AND CULTURAL CONTEXT

we risk becoming part of the machinery that deflects attention from social inequalities and structural violence on to individuals’ psychology. The war on terror, global warming and the press of humanity seeking to escape political violence and natural catastrophes all make the problems of trauma and disaster important issues in contemporary psychiatry. We need a body of research that takes social and cultural context carefully into consideration and clinical approaches that address the real concerns of individuals, families and communities responding to the range of challenges brought by trauma and disaster in all their myriad forms.

REFERENCES 1. Krug, E. G., Dahlberg, L. L., Mercy, J. A. et al. (2002) World Report on Violence and Health, World Health Organizaton, Geneva. Available from: http://www. who.int/violence injury prevention/violence/ world report/en/. 2. Murray, C. J. L., King, G., Lopez, A. D. et al. (2002) Armed conflict as a public health problem. British Medical Journal, 324 (7333), 346 349. 3. Center for Research on the Epidemiology of Disasters (2009) EM DAT: Emergency Events Database, Uni versite Catholique de Louvain Ecole de Sante, Pub lique, Louvain, Belgium [cited 16 April 2009]. Avail able from: http://www.emdat.be/Database/terms.html. 4. McMichael, A. J., Woodruff, R. E. and Hales, S. (2006) Climate change and human health: present and future risks. Lancet, 367 (9513), 859 869. 5. Young, A. (1995) The Harmony of Illusions: Inventing Posttraumatic Stress Disorder, Princeton University Press, Princeton, New Jersey. 6. van der Kolk, B. A., Herron, N. and Hostetler, A. (1994) The history of trauma in psychiatry. Pediatric Clinics of North America, 17 (3), 583 600. 7. Hacking, I. (1995) Rewriting the Soul, Princeton Uni versity Press, Princeton, New Jersey. 8. Lindemann, E. (1944) Symptomatology and manage ment of acute grief. American Journal of Psychiatry, 101, 141 148. 9. Dixon, L. and Goldman, H. (2004) Forty years of progress in community mental health: the role of evidence based practices. Administration and Policy in Mental Health, 31 (5), 381 392.

171

10. Erikson, K. T. (1976) Loss of communality at Buffalo Creek. American Journal of Psychiatry, 133 (3), 303 305. 11. Ursano, R. J. (2007) Textbook of Disaster Psychiatry, Cambridge University Press, Cambridge, New York. 12. Marsella, A. J. (2008) Ethnocultural Perspectives on Disasters and Trauma: Foundations, Issues, and Applications, Springer, New York. 13. Leys, R. (2000) Trauma: A Genealogy, University of Chicago Press, Chicago, Illinois. 14. Almedom, A. M. and Summerfield, D. (2004) Mental well being in settings of ‘complex emergency’: a re view. Journal of Biosocial Science, 36 (04), 381 388. 15. Mollica, R. F., Cardozo, B. L., Osofsky, H. J. et al. (2004) Mental health in complex emergencies. Lancet, 364 (9450), 2058 2067. 16. Konner, M. (2007) Trauma, adaptation, and resilience: a cross cultural and evolutionary perspective, in Un derstanding Trauma: Biological, Psychological and Cultural Perspectives (eds L. J. Kirmayer, R. Lemel son and M. Barad), Cambridge University Press, New York, pp. 300 338. 17. Rau, V. and Fanselow, M. S. (2007) Neurobiological and neuroethological perspectives on fear and anxiety, in Understanding Trauma: Integrating Biological, Clinical, and Cultural Perspectives (eds L. J. Kir mayer, R. Lemelson and M. Barad), Cambridge Uni versity Press, New York, pp. 27 40. 18. Carden˜a, E. and Spiegel, D. (1993) Dissociative reac tions to the San Francisco Bay earthquake of 1989. American Journal of Psychiatry, 150 (3), 474 478. 19. Brewin, C. R., Andrews, B., Rose, S. and Kirk, M. (1999) Acute stress disorder and posttraumatic stress disorder in victims of violent crime. American Journal of Psychiatry, 156 (3), 360 366. 20. American Psychiatric Association (2000) Diagnostic and Statistical Manual of Mental Disorders: DSM IV TR, 4th edn, American Psychiatric Association, Washington, DC. 21. Brewin, C. R., Andrews, B. and Rose, S. (2003) Diagnostic overlap between acute stress disorder and PTSD in victims of violent crime. American Journal of Psychiatry, 160 (4), 783 785. 22. Peters, L.,Issakidis, C., Slade,T. and Andrews, G.(2006) Gender differences in the prevalence of DSM IV and ICD 10 PTSD. Psychological Medicine, 36 (1), 81 89. 23. Brewin, C. R. and Holmes, E. A. (2003) Psychological theories of posttraumatic stress disorder. Clinical Psy chology Review, 23 (3), 339 376.

172

COMPONENTS OF THE SOCIAL WORLD

24. Quirk, G. J., Milad, M. R., Santini, E. and Lebro´n, K. (2007) Learning not to fear: a neural sustems approach, in Understanding Trauma: Integrating Biological, Clinical, and Cultural Perspectives (eds L. J. Kir mayer, R. Lemelson and M. Barad), Cambridge Uni versity Press, New York, pp. 60 77. 25. Barad, M. and Cain, C. K. (2007) Mechanisms of fear extinction: toward improved treatment for anxiety, in Understanding Trauma: Integrating Biological, Clin ical, and Cultural Perspectives (eds L. J. Kirmayer, R. Lemelson and M. Barad), Cambridge University Press, New York, pp. 78 97. 26. Bouton, M. E. and Wadell, J. (2007) Some biobeha vioral insights into persistent effects of emotional trauma, in Understanding Trauma: Integrating Bio logical, Clinical, and Cultural Perspectives (eds L. J. Kirmayer, R. Lemelson and M. Barad), Cambridge University Press, New York, pp. 41 59. 27. Lemelson, R., Kirmayer, L. and Barad, M. (2007) Trauma in context: integrating cultural, clinical and biological perspectives, in Understanding Trauma: Integrating Biological, Clinical, and Cultural Per spectives (eds L. J. Kirmayer, R. Lemelson and M. Barad), Cambridge University Press, New York, pp. 451 474. 28. Kirmayer, L. J. (1996) Landscapes of memory: trau ma, narrative and dissociation, in Tense Past: Cultural Essays on Memory and Trauma (eds P. Antze and M. Lambek), Routledge, London, pp. 173 198. 29. Galea, S., Nandi, A. and Vlahov, D. (2005) The epidemiology of post traumatic stress disorder after disasters. Epidemiologic Reviews, 27, 78 91. 30. Kessler, R. C., Sonnega, A., Bromet, E. et al. (1995) Posttraumatic stress disorder in the National Comor bidity Survey. Archives of General Psychiatry, 52 (12), 1048 1060. 31. Breslau, N., Kessler, R. C., Chilcoat, H. D. et al. (1998) Trauma and posttraumatic stress disorder in the com munity: the 1996 Detroit Area Survey of Trauma. Archives of General Psychiatry, 55 (7), 626 632. 32. Shalev, A. (2007) PTSD: a disorder of recovery? in Understanding Trauma: Biological, Psychological and Cultural Perspectives (eds L. J. Kirmayer, R. Lemelson and M. Barad), Cambridge University Press, New York, pp. 207 223. 33. Brewin, C. R., Andrews, B. and Valentine, J. D. (2000) Meta analysis of risk factors for posttraumatic stress disorder in trauma exposed adults. Journal of Con sulting and Clinical Psychology, 68 (5), 748 766.

34. Charuvastra, A. and Cloitre, M. (2008) Social bonds and posttraumatic stress disorder. Annual Review of Psychology, 59, 301 328. 35. Momartin, S., Silove, D., Manicavasagar, V. and Steel, Z. (2004) Comorbidity of PTSD and depression: as sociations with trauma exposure, symptom severity and functional impairment in Bosnian refugees re settled in Australia. Journal of Affective Disorders, 80 (2 3), 231 238. 36. Kirmayer, L. J. (1996) Confusion of the senses: im plications of ethnocultural variations in somatoform and dissociative disorders for PTSD, in Ethnocultural Aspects of Post Traumatic Stress Disorders: Issues, Research and Clinical Applications (eds A. J. Marsel la, M. J. Friedman, E. T. Gerrity and R. M. Scurfield), American Psychological Association, Washington, DC, pp. 131 164. 37. Groleau, D. and Kirmayer, L. J. (2004) Sociosomatic theory in Vietnamese immigrants’ narratives of dis tress. Anthropology and Medicine, 11 (2), 117 133. 38. Kirmayer, L. J. and Young, A. (1998) Culture and somatization: clinical, epidemiological, and ethno graphic perspectives. Psychosomatic Medicine, 60 (4), 420 430. 39. Bromet, E. J. and Havenaar, J. M. (2002) Mental health consequences of disasters, in Psychiaty in Society (eds N. Sartorius, W. Gaebel, J. J. Lo´pez Ibor and M. Maj), John Wiley & Sons, Inc., New York, pp. 241 261. 40. Davidson, J. R. and McFarlane, A. C. (2006) The extent and impact of mental health problems after disaster. Journal of Clinical Psychiatry, 67 (suppl. 2), 9 14. 41. Arata, C. M., Picou, J. S., Johnson, G. D. and McNally, T. S. (2000) Coping with technological disaster: an application of the conservation of resources model to the Exxon Valdez oil spill. Journal of Traumatic Stress, 13 (1), 23 39. 42. van den Berg, B., Grievink, L., Yzermans, J. and Lebret, E. (2005) Medically unexplained physical symptoms in the aftermath of disasters. Epidemiologic Reviews, 27, 92 106. 43. Hobfoll, S. E. (1989) Conservation of resources. A new attempt at conceptualizing stress. American Psychol ogist, 44 (3), 513 524. 44. Hobfoll, S. E., Tracy, M. and Galea, S. (2006) The impact of resource loss and traumatic growth on probable PTSD and depression following terrorist attacks. Journal of Traumatic Stress, 19 (6), 867 878. 45. McMurray, L. and Steiner, W. (2000) Natural disasters and service delivery to individuals with severe mental

TRAUMA AND DISASTERS IN SOCIAL AND CULTURAL CONTEXT

46.

47.

48.

49.

50.

51.

52.

53.

54.

55.

56.

illness ice storm. Canadian Journal of Psychiatry Revue Canadienne De Psychiatrie, 45 (4), (1998) 383 385. Laplante, D. P., Brunet, A., Schmitz, N. et al. (2008) Project Ice Storm: prenatal maternal stress affects cognitive and linguistic functioning in 5 1/2 year old children. Journal of the American Academy of Child and Adolescent Psychiatry, 47 (9), 1063 1072. Somasundaram, D. (2007) Collective trauma in north ern Sri Lanka: a qualitative psychosocial ecological study. International Journal of Mental Health Sys tems, 1 (1), 5. Hollifield, M., Hewage, C., Gunawardena, C. N. et al. (2008) Symptoms and coping in Sri Lanka 20 21 months after the 2004 tsunami. British Journal of Psychiatry, 192 (1), 39 44. Neuner, F., Schauer, E., Catani, C. et al. (2006) Post tsunami stress: a study of posttraumatic stress disorder in children living in three severely affected regions in Sri Lanka. Journal of Traumatic Stress, 19 (3), 339 347. Wickrama, K. A. and Kaspar, V. (2007) Family context of mental health risk in tsunami exposed adolescents: findings from a pilot study in Sri Lanka. Social Science and Medicine, 64 (3), 713 723. Norris, F. H., Friedman, M. J., Watson, P. J. et al. (2002) 60,000 disaster victims speak: Part I. An em pirical review of the empirical literature, 1981 2001. Psychiatry, 65 (3), 207 239. Alexander, D. A. and Klein, S. (2003) Biochemical terrorism: too awful to contemplate, too serious to ignore: subjective literature review. British Journal of Psychiatry, 183, 491 497. Schuster, M. A., Stein, B. D., Jaycox, L. et al. (2001) A national survey of stress reactions after the September 11, 2001, terrorist attacks. New England Journal of Medicine, 345 (20), 1507 1512. Stein, B. D., Elliott, M. N., Jaycox, L. H. et al. (2004) A national longitudinal study of the psychological con sequences of the September 11, 2001, terrorist attacks: reactions, impairment, and help seeking. Psychiatry, 67 (2), 105 117. Blanchard, E. B., Kuhn, E., Rowell, D. L. et al. (2004) Studies of the vicarious traumatization of college students by the September 11th attacks: effects of proximity, exposure and connectedness. Behaviour Research and Therapy, 42, 191 205. Blocker, T. J. and Sherkat, D. E. (1992) In the eyes of the beholder: technological and naturalistic interpreta

57.

58.

59.

60.

61.

62.

63.

64.

65.

66.

67.

68.

69.

173

tions of a disaster. Industiral Crisis Quarterly, 6, 153 166. Hinton, A. L. (2005) Why Did They Kill?: Cambodia in the Shadow of Genocide, University of California Press, Berkeley, California. Galea, S., Brewin, C. R., Gruber, M. et al. (2007) Exposure to hurricane related stressors and mental illness after hurricane Katrina. Archives of General Psychiatry, 64 (12), 1427 1434. Pastel, R. H. (2007) What have we learned about mass chemical disasters? Psychiatric Annals, 37 (11), 754 765. Foster, R. P. and Goldstein, M. F. (2007) Chernobyl disaster sequelae in recent immigrants to the United States from the former Soviet Union (FSU). Journal of Immigrant and Minority Health, 9 (2), 115 124. Davidson, L. M., Baum, A. and Collins, D. L. (1982) Stress and control related problems at Three Mile Island. Journal of Applied Social Psychology, 12 (5), 349 359. Picou, J. S., Marshall, B. K. and Gill, D. A. (2004) Disaster, litigation, and the corrosive community. Social Forces, 82 (4), 1493 1522. Solomon, M. J. and Thompson, J. (1995) Anger and blame in three technological disasters. Stress Medi cine, 11, 199 206. Turpin, J. (1998) Many faces: women confronting war, in The Women and War Reader (eds L. A. Lorentzen and J. Turpin), New York University Press, New York and London, pp. 3 18. Pedersen, D. (2002) Political violence, ethnic conflict, and contemporary wars: broad implications for health and social well being. Social Science and Medicine, 55, 175 190. de Jong, J. T., Komproe, I. H. and Van Ommeren, M. (2003) Common mental disorders in postconflict set tings. Lancet, 361 (9375), 2128 2130. Pedersen, D. and Kienzler, H. (2008) Ethnic conflict, in Encyclopedia of Public Health (ed. K. Heggenhougen), Academic Press, San Diego, California, pp. 508 518. UNHCR (1992) Handbook on Procedures and Cri teria for Determining Refugee Status under the 1951 Convention and the 1967 Protocol Relating to the Status of Refugees, United Nations High Commission on Refugees, Geneva, Contract No.: June 23. Silove, D., Steel, Z. and Watters, C. (2000) Policies of deterrence and the mental health of asylum seekers. Journal of the American Medical Association, 284 (5), 604 611.

174

COMPONENTS OF THE SOCIAL WORLD

70. Silove, D., Austin, P. and Steel, Z. (2007) No refuge from terror: the impact of detention on the mental health of trauma affected refugees seeking asylum in Australia. Transcultural Psychiatry, 44 (3), 359 393. 71. Steel, Z., Silove, D., Phan, T. and Bauman, A. (2002) Long term effect of psychological trauma on the mental health of Vietnamese refugees resettled in Australia: a population based study. Lancet, 360 (9339), 1056 1062. 72. Mollica, R. F., Caridad, K. R. and Massagli, M. P. (2007) Longitudinal study of posttraumatic stress disorder, depression, and changes in traumatic mem ories over time in Bosnian refugees. Journal of Ner vous and Mental Disease, 195 (7), 572 579. 73. Porter, M. and Haslam, N. (2005) Predisplacement and postdisplacement factors associated with mental health of refugees and internally displaced persons: a meta analysis. Journal of the American Medical Association, 294 (5), 602 612. 74. Beiser, M. (2006) Longitudinal research to promote effective refugee resettlement. Transcultural Psychia try, 43 (1), 56 71. 75. Montgomery, E. (2008) Long term effects of organized violence on young Middle Eastern refugees’ mental health. Social Science and Medicine, 67 (10), 1596 1603. 76. Rousseau, C., Crepeau, F., Foxen, P. and Houle, F. (2002) The complexity of determining refugeehood: a multidisciplinary analysis of the decision making pro cess of the Canadian Immigration and Refugee Board. Journal of Refugee Studies, 15 (1), 43 70. 77. Kirmayer, L. J. (2007) Failures of imagination: the refugee’s predicament, in Understanding Trauma: Biological, Psychological and Cultural Perspectives (eds L. J. Kirmayer, R. Lemelson and M. Barad), Cambridge University Press, New York, pp. 363 381. 78. Carlsson, J. M., Olsen, D. R., Mortensen, E. L. and Kastrup, M. (2006) Mental health and health related quality of life: a 10 year follow up of tortured refu gees. Journal of Nervous and Mental Disease, 194 (10), 725 731. 79. United Nations (1989) United Nations Convention Against Torture and Other Cruel, Inhuman or Degrad ing Treatment or Punishment. New York: United Na tions, Contract No.: GA Res. 39/46, 39 GAOR Supple ment (No. 51) at 197, UN Document A/39/51, opened for signature 4 February 1985, entered into force 26 June 1987.

80. Stern, S. (2007) Torture debates. Global Researcher, 1 (9), 211 236. 81. Lewis, A. (2004) Making torture legal. New York Review of Books, 51 (12), 4 8. 82. Clark, P. A. (2006) Medical ethics at Guantanamo Bay and Abu Ghraib: the problem of dual loyalty. Journal of Law Medicine and Ethics, 34 (3), 570 580, 481. 83. Basoglu, M., Livanou, M. and Crnobaric, C. (2007) Torture vs other cruel, inhuman, and degrading treat ment: is the distinction real or apparent? Archives of General Psychiatry, 64 (3), 277 285. 84. Danner, M. (2009) The Red Cross torture report: what it means. New York Review of Books, 56 (7), April 30, http://www.nybooks.com/articles/22614. 85. Afana, A. H. (2007) Torture. International Review of Red Cross, 89 (867), 505 514. 86. Jaranson, J. and Popkin, M. (eds) (1998) Caring for Victims of Torture, American Psychiatric Press, Inc., Washington, DC. 87. Silove, D. (1999) The psychosocial effects of torture, mass human rights violations, and refugee trauma: toward an integrated conceptual framework. Journal of Nervous and Mental Disease, 187 (4), 200 207. 88. Kagee, A. and Naidoo, A. V. (2004) Reconceptualizing the sequelae of political torture: limitations of a psy chiatric paradigm. Transcultural Psychiatry, 41 (1), 46 61. 89. Kira, I. A., Templin, T., Lewandowski, L. et al. (2006) The effects of torture: two community studies. Peace and Conflict: Journal of Peace Psychology, 12 (3), 205 228. 90. Campbell, T. A. (2007) Psychological assessment, diagnosis, and treatment of torture survivors: a review. Clinical Psychology Review, 27 (5), 628 641. 91. Loncar, M., Medved, V., Jovanovic, N. and Hotujac, L. (2006) Psychological consequences of rape on women in 1991 1995 war in Croatia and Bosnia and Herzegovina. Croatian Medical Journal, 47 (1), 67 75. 92. Basoglu, M., Mineka, S., Paker, M. et al. (1997) Psychological preparedness for trauma as a protective factor in survivors of torture. Psychological Medicine, 27 (6), 1421 1433. 93. Johnson, H. and Thompson, A. (2008) The develop ment and maintenance of post traumatic stress disor der (PTSD) in civilian adult survivors of war trauma and torture: a review. Clinical Psychology Review, 28 (1), 36 47.

TRAUMA AND DISASTERS IN SOCIAL AND CULTURAL CONTEXT

94. Wilson, J. P. and Drozdek, B. (2004) Broken Spirits: The Treatment of Traumatized Asylum Seekers, Re fugees, War, and Torture Victims, Brunner Routledge, New York. 95. Moreno, A., Piwowarczyk, L., LaMorte, W. W. and Grodin, M. A. (2006) Characteristics and utilization of primary care services in a torture rehabilitation center. Journal of Immigrant and Minority Health, 8 (2), 163 171. 96. Bagilishya, D. (2000) Mourning and recovery from trauma: in Rwanda, tears flow within. Transcultural Psychiatry, 37 (3), 337 354. 97. Lemelson, R., Kirmayer, L. J. and Barad, M. (2007) Trauma in context: integrating cultural, clinical, and biological perspectives, in Understanding Trauma: Biological, Psychological and Cultural Perspectives (eds L. J. Kirmayer, R. Lemelson and M. Barad), Cambridge University Press, New York, pp. 451 474. 98. Turner, S. and Gorstunsworth, C. (1990) Psychological sequelae of torture. British Journal of Psychiatry, 157, 475 480. 99. Mollica, R. F., McInnes, K., Pham, T. et al. (1998) The dose effect relationships between torture and psychia tric symptoms in Vietnamese ex political detainees and a comparison group. Journal of Nervous and Mental Disease, 186 (9), 543 553. 100. Thomsen, A. B., Eriksen, J. and Smidt Nielsen, K. (2000) Chronic pain in torture survivors. Forensic Science International, 108 (3), 155 163. 101. Kirmayer, L. J. (2002) The refugee’s predicament. L’E´volution Psychiatrique, 67, 724 742. 102. Olsen, D. R., Montgomery, E., Carlsson, J. and Fold spang, A. (2006) Prevalent pain and pain level among torture survivors: a follow up study. Danish Medical Bulletin, 53 (2), 210 214. 103. Basoglu, M., Livanou, M., Crnobaric, C. et al. (2005) Psychiatric and cognitive effects of war in former Yugoslavia: association of lack of redress for trauma and posttraumatic stress reactions. Journal of the American Medical Association, 294 (5), 580 590. 104. Punamaki, R. L., Qouta, S. and El Sarraj, E. (1997) Relationships between traumatic events, children’s gender, and political activity, and perceptions of par enting styles. International Journal of Behavioral Development, 21 (1), 91 109. 105. Power, S. (2002) A Problem from Hell: America and the Age of Genocide, Basic Books, New York. 106. Pham, P. N., Weinstein, H. M. and Longman, T. (2004) Trauma and PTSD symptoms in Rwanda: implications

107.

108.

109.

110.

111.

112.

113.

114.

115.

116.

117.

175

for attitudes toward justice and reconciliation. Journal of the American Medical Association, 292 (5), 602 612. Momartin, S., Silove, D., Manicavasagar, V. and Steel, D. (2003) Dimensions of trauma associated with post traumatic stress disorder (PTSD) caseness, severity and functional impairment: a study of Bosnian refu gees resettled in Australia. Social Science and Medi cine, 57, 775 781. Silove, D. (2007) Adaptation, ecosocial safety signals, and the trajectory of PTSD, in Understanding Trauma: Biological, Psychological and Cultural Perspectives (eds L. J. Kirmayer, R. Lemelson and M. Barad), Cambridge University Press, New York, pp. 242 258. Danieli, Y. (1998) International Handbook of Multi generational Legacies of Trauma, Plenum Press, New York. Kellermann, N. P. (2001) Transmission of Holocaust trauma an integrative view. Psychiatry, 64 (3), 256 267. Yehuda, R., Schmeidler, J., Wainberg, M. et al. (1998) Vulnerability to posttraumatic stress disorder in adult offspring of Holocaust survivors. American Journal of Psychiatry, 155, 1163 1171. Sigal, J. J. (1998) Long term effects of the Holocaust: empirical evidence for resilience in the first, second, and third generations. Psychoanalytic Review, 85 (4), 579 585. Kidron, C. A. (2004) Surviving a distant past: a case study of the cultural construction of trauma descendant identity. Ethos, 31 (4), 513 544. Brave Heart, M. Y. H. (2004) The historical trauma response among Natives and its relationship with substance abuse: a Lakota illustration, in Healing and Mental Health for Native Americans (eds E. Nebelkof and B. M. Phillips), Altamira Press, Walnut Creek, California, pp. 7 18. Whitbeck, L. B., Adams, G. W., Hoyt, D. R. and Chen, X. (2004) Conceptualizing and measuring his torical trauma among American Indian people. Amer ican Journal of Community Psychology, 33 (3 4), 119 130. Lear, J. (2006) Radical Hope: Ethics in the Face of Cultural Devastation, Harvard University Press, Cam bridge, Massachusetts. Gone, J. P. and Kirmayer, L. J. (2010) On the Wisdom of Considering Culture and Context in Psychopathology, in Contemporary Directions in Psychopathology: Scientific Foundations of the

176

118.

119.

120.

121.

122.

123.

124.

125.

126.

127.

128.

COMPONENTS OF THE SOCIAL WORLD

DSM V and ICD 11 (eds T. Millon, R. F. Krueger and E. Simonsen), Guilford, New York, 72 96. National Institute for Clinical Excellence (2005) The Management of Post Traumatic Stress Disorder in Primary and Secondary Care, NICE, London. Institute of Medicine (IOM) (2008) Treatment of Posttraumatic Stress Disorder: An Assessment of the Evidence, National Academies Press, Washington, DC. Neuner, F., Schauer, M., Klaschik, C. and Elbert, T. (2004) A comparison of narrative exposure therapy, supportive counseling, and psychoeducation for treat ing posttraumatic stress disorder in an African refugee settlement. Journal of Consulting and Clinical Psy chology, 72 (4), 579 587. Schauer, M., Elbert, T. and Neuner, F. (2005) Narra tive Exposure Therapy: A Short Term Intervention for Traumatic Stress Disorders After War, Terror, or Torture, Hogrefe & Huber, Toronto. Bichescu, D., Neuner, F., Schauer, M. and Elbert, T. (2007) Narrative exposure therapy for political im prisonment related chronic posttraumatic stress dis order and depression. Behaviour Research and Therapy, 45 (9), 2212 2220. American Psychiatric Association (2004) Practice guideline for the treatment of patients with acute stress disorder and posttraumatic stress disorder. American Journal of Psychiatry, 161 (Suppl. 11), 3 31. Brunet, A., Orr, S. P., Tremblay, J. et al. (2008) Effect of post retrieval propranolol on psychophysiologic responding during subsequent script driven traumatic imagery in post traumatic stress disorder. Journal of Psychiatric Research, 42 (6), 503 506. Sphere Project (2004) Humanitarian Charter and Minimum Standards in Disaster Response, Sphere Project, Geneva. van Ommeren, M., Saxena, S. and Saraceno, B. (2005) Mental and social health during and after acute emer gencies emerging consensus? Bulletin of the World Health Organization, 83 (1), 71 77. World Health Organization (2003) Mental Health in Emergencies: Mental and Social Aspects of Health of Populations Exposed to Extreme Stressors, World Health Organization, Geneva. Inter Agency Standing Committee (2007) IASC Guidelines on Mental Health and Psychosocial Sup port in Emergency Settings, Inter Agency Standing Committee, Geneva.

129. Eisenman, D., Weine, S., Green, B. et al. (2006) The ISTSS/Rand guidelines on mental health training of primary healthcare providers for trauma exposed po pulations in conflict affected countries. Journal of Traumatic Stress, 19 (1), 5 17. 130. Schwarz Langer, G., Deighton, R. R., Jerg Bretzke, L. et al. (2006) Psychiatric treatment for extremely traumatized civil war refugees from former Yugoslavia. Possibilities and limitations of integrating psycho therapy and medication. Torture, 16 (2), 69 80. 131. Stepakoff, S., Hubbard, J., Katoh, M. et al. (2006) Trauma healing in refugee camps in Guinea: a psy chosocial program for Liberian and Sierra Leonean survivors of torture and war. American Psychologist, 61 (8), 921 932. 132. Basoglu, M. (2006) Rehabilitation of traumatised refugees and survivors of torture. British Medical Journal, 333 (7581), 1230 1231. 133. Kinzie, D. (2007) PTSD among traumatized refugees, in Understanding Trauma: Biological, Psychological and Cultural Perspectives (eds L. J. Kirmayer, R. Lemelson and M. Barad), Cambridge University Press, New York, pp. 194 206. 134. Wessely, S., Bryant, R. A., Greenberg, N. et al. (2008) Does psychoeducation help prevent post traumatic psychological distress? Psychiatry, 71 (4), 287 302. 135. Parker, I. (2004) Victims and volunteers. The New Yorker, 26, 50 61. 136. Hobfoll, S. E., Watson, P., Bell, C. C. et al. (2007) Five essential elements of immediate and mid term mass trauma intervention: empirical evidence. Psychiatry, 70 (4), 283 315, discussion 6 69. 137. Batniji, R., Van Ommeren, M. and Saraceno, B. (2006) Mental and social health in disasters: relating quali tative social science research and the Sphere Standard. Social Science and Medicine, 62 (8), 1853 1864. 138. Ghodse, H. and Galea, S. (2006) Tsunami: under standing mental health consequences and the unpre cedented response. International Review of Psychiatry (Abingdon, England), 18 (3), 289 297. 139. Peoples Rural Development Association (PRDA) (2008) Mental Health and Wellbeing of Communities Affected by Conflcit and Tsunami in Sri Lanka, PRDA, Colombo, August 23. 140. Hollifield, M., Warner, T. D., Lian, N. et al. (2002) Measuring trauma and health status in refugees: a critical review. Journal of the American Medical Association, 288 (5), 611 621.

TRAUMA AND DISASTERS IN SOCIAL AND CULTURAL CONTEXT

141. Mollica, R. F., Caspi Yavin, Y., Bollini, P. et al. (1992) The Harvard Trauma Questionnaire. Validating a cross cultural instrument for measuring torture, trau ma, and posttraumatic stress disorder in Indochinese refugees. Journal of Nervous and Mental Disease, 180 (2), 111 116. 142. Shoeb, M., Weinstein, H. and Mollica, R. (2007) The Harvard Trauma Questionnaire: adapting a cross cultural instrument for measuring torture, trauma and posttraumatic stress disorder in Iraqi refugees. Inter national Journal of Social Psychiatry, 53 (5), 447 463. 143. Kienzler, H. (2008) Debating war trauma and post traumatic stress disorder (PTSD) in an interdisciplinary arena. Social Science and Medicine, 67 (2), 218 227. 144. Atlani, L. and Rousseau, C. (2000) The politics of culture in humanitarian aid to refugees having experi enced sexual violence. Transcultural Psychiatry, 37 (3), 435 449. 145. Kirmayer, L. J. (1989) Psychotherapy and the cultural concept of the person. Sante, Culture, Health, 6 (3), 241 270. 146. Summerfield, D. (2004) Cross cultural perspectives on the medicalization of human suffering, in Posttrau matic Stress Disorder: Issues and Controversies (ed. G. Rosen), John Wiley & Sons, Ltd, Chichester, West Sussex, and Hoboken, New Jersey, pp. 233 245. 147. Jones, L. (2004) Then they started shooting, in Grow ing up in Wartime Bosnia, Harvard University Press, Cambridge, Massachusetts. 148. Summerfield, D. (2000) Conflict and health: war and mental health: a brief overview. British Medical Jour nal, 321 (7255), 232 235. 149. Cienfuegos, A. J. and Monelli, C. (1983) The testi mony of political repression as a therapeutic instru ment. American Journal of Orthopsychiatry, 53 (1), 43 51.

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150. Weine, S. M., Kulenovic, A. D., Pavkovic, I. and Gibbons, R. (1998) Testimony psychotherapy in Bosnian refugees: a pilot study. American Journal of Psychiatry, 155, 1720 1726. 151. Lustig, S. L., Weine, S. M., Saxe, G. N. and Beardslee, W. R. (2004) Testimonial psychotherapy for adoles cent refugees: a case series. Transcultural Psychiatry, 41 (1), 31 45. 152. Avruch, K. (2010) Truth and reconciliation com missions: problems in transitional justice and the reconstruction of identity. Transcultural Psychia try, 47 (1). 153. Allan, A., Allan, M. M., Kaminer, D. and Stein, D. J. (2006) Exploration of the association between apology and forgiveness amongst victims of human rights violations. Behavioral Sciences and the Law, 24 (1), 87 102. 154. Kaminer, D., Stein, D. J., Mbanga, I. and Zungu Dirwayi, N. (2001) The Truth and Reconciliation Commission in South Africa: relation to psychiatric status and forgiveness among survivors of human rights abuses. British Journal of Psychiatry, 178, 373 377. 155. Silove, D., Zwi, A. B. and le Touze, D. (2006) Do truth commissions heal? The East Timor experience. Lan cet, 367 (9518), 1222 1224. 156. Fassin, D. and Rechtman, R. (2009) The Empire of Trauma: An Inquiry into the Condition of Victimhood, Princeton University Press, Princeton, New Jersey. 157. Das, V. and Kleinman, A. (2000) Introduction, in Violence and Subjectivity (eds V. Das, A. Kleinman, M. Ramphele and P. Reynolds), University of California Press, Berkeley, California, pp. 1 18. 158. Kleinman, A., Das, V. and Lock, M. (eds) (1997) Social Suffering, University of California Press, Berkeley, California.

Part Three Social determinants

14 Fundamental social causes of health inequalities Jo C. Phelan and Bruce G. Link Mailman School of Public Health, Columbia University and New York State Psychiatric Institute, New York, USA

This chapter focuses on a theoretical framework that we developed to explain persistent and robust socioeconomic inequalities in mortality across time and place. As such, the scope of the theory goes beyond the problem of psychiatric illness. At the same time, psychiatric illness fits squarely within the theory, and the fundamental cause perspective may provide a new lens for considering the causes of socioeconomic

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inequalities in psychiatric illness and how we can expect the socioeconomic patterning of psychiatric illness to change as more effective means of preventing and treating these illnesses are developed and adopted in the population. We begin with the set of facts motivating the theory; then we will describe the theory, present some empirical data evaluating it and finally discuss the implications of the theory for psychiatric illness.

SOCIOECONOMIC AND RACIAL INEQUALITIES IN HEALTH AND MORTALITY

In the last century, humans greatly expanded their capacity to control disease and death. Any explanation of current health inequalities by factors such as socioeconomic status (SES) or race must take account of this fact. We will argue that the capacity to control disease and death creates inequalities that when we make gains in our ability to control disease, people with more knowledge, money, power, prestige and beneficial social connections are better able to harness the benefits of our new-found capacities, thereby creating inequalities. If this line of thinking is correct, it has important implications for explaining health

inequalities and for the kind of research and action that are likely to help reduce those inequalities. There is a strong, well-established and very robust association linking both morbidity and mortality to educational attainment, occupational standing, and income [1 3]. Figure 14.1 provides a recent example of this association. It shows adjusted death rates per 100 000 by educational status for people between the ages of 25 and 64 years in the United States in 2004. For both men and women, adjusted mortality rates are much higher for those with less than 12 years of education compared with those

Principles of Social Psychiatry, second edition Edited by Craig Morgan and Dinesh Bhugra Ó 2010 John Wiley & Sons, Ltd.

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Figure 14.1 All cause age adjusted death rates per 100 000 people aged 25 64 by education 2004 [4]

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with 13 or more years. Similar patterns exist for black white mortality differences in the US. Health United States reports that all-cause age-adjusted death rates per 100 000 population in 2004 were substantially higher for black (1027) than for white (786) groups [4]. These strong mortality gradients based on SES and race are not new. For SES, the association was observed in Mulhouse, France, in the early nineteenth century, in Rhode Island in 1865, in Chicago in the 1930s (see Reference [1]), and currently in the United States and Europe [2 5]. Similarly for racial differences, life expectancy has been much lower for African Americans than for white Americans as far back as such data have been available. How can we explain the persistence of these inequalities? Why should SES and race have such an enduring and widespread association with mortality? Two broad types of explanation have been offered and debated. Social causation explanations find the answer in the stress or adversity that is associated

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with lower SES or minority racial status. Genetic vulnerability explanations, by contrast, argue that vulnerability leads to illness, which in turn impairs a person’s ability to attain or maintain socioeconomic position. A slightly different genetic explanation views genes as strong influences on factors like intelligence or on personality dimensions such as conscientiousness, which in turn influence both health and SES. Each approach offers a different explanation of the processes causing socioeconomic or racial gradients and carries different implications for how we might address them. Because of the critical nature of the facts at issue, it is important to know which explanation or explanations are correct. This is a longstanding debate that we believe has been dramatically altered with regard to physical illness by changing circumstances. In order to construct an explanation that fits these circumstances we turn attention to evidence of trends in the improvement in health over the past halfcentury.

IMPROVEMENTS IN POPULATION HEALTH

Figure 14.2 shows an increase in life expectancy at birth in the US from only 47 years in 1900 to 77 years in 2000. Although much of this improvement is due to dramatic declines in infant mortality, life expectancy has also increased across the life span. For example, the average American man turning 65 years old in 2000 can expect to live almost a year longer than the average man turning 65 years old in 1990. This is a remarkable change in a very short period of time.

These improvements apply to many diverse causes of death, including some of the major killers of our time. Age-adjusted mortality rates per 100 000 people due to heart disease plummeted from 587 in 1950 to 258 in 2000. The figures are equally dramatic for stroke, where rates fell from 181 per 100 000 in 1950 to 61 per 100 000 in 2000. For all cancers combined, ageadjusted mortality rates rose through 1990 but then began to drop significantly. Turning to infectious

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diseases, age-adjusted death rates from influenza and pneumonia dropped from 48 per 100 000 in 1950 to 24 per 100 000 in 2000. What is driving these dramatic improvements in health? Clearly, some powerful processes are at work, which are having a remarkably strong impact on population health. Whatever these processes are let us call them ‘X’ should not X also have relevance for explaining inequalities in health by SES and race? Certainly, explanations of health inequalities should not ignore this factor. From this vantage point, let us return to the centrepieces of previous explanations for health inequalities and ask whether these factors might be the same ones causing the dramatic improvements in population health we have observed. Let us begin with the first social selection explanation, in which genes affect health, which in turn affects SES. Clearly, disease-related genes cannot have changed so rapidly and in such a uniformly positive direction as to have created the enormous improvements in population health documented above. Next consider the second social selection explanation, in which genes influence factors like intelligence or conscientiousness, which influence both health and SES. Again, one would have to posit enormous and implausible gains in these traits over the last 50 100 years to explain the observed improvements in health. Turning to the mainstay of social causation explanations, we encounter similar problems. One would have to posit that the prevalence of stress or adversity has declined dramatically over the last several decades and that this decline had a powerful impact on illnesses as diverse

2000

Figure 14.2 US life expectancy at birth 1900 2000 [4]

as heart disease, influenza and, since 1990, all cancers combined. It seems clear that whatever is driving improvements in population health, that factor is not coterminous with the primary factors that have been put forward to explain health inequalities by SES and race. So what is causing the dramatic improvements in population health what is X? Of course, it is not one single thing but many different things. For example, recent declines in age-adjusted rates of lung cancer are probably influenced by the lagged effects of declining smoking rates in previous decades. The rapid decline in HIV/AIDS mortality in the United States is probably related to antiretroviral drugs developed in the late 1990s. The precipitous decline in mortality due to Hodgkin disease since the 1960s is probably due to the development of chemotherapy treatments that are able to cure the disease. The list of factors that have contributed to improvements in population health is a long one, including screening for disease, public health efforts to increase the consumption of fruits and vegetables, promote exercise and eradicate smoking, pollution control, flu shots, seat belts, cholesterol drugs, angioplasty, and so on. It seems clear that improvement in population health is not due to just one thing and that it is likely to be due to different factors for different diseases. Just as clearly, the confluence of these many factors has had an enormously positive impact on population health. Over the last century, human beings have dramatically increased their capacity to control disease and death.

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14.3

THE CORE PROPOSITION: CONTROLLING DISEASE AND CREATING INEQUALITIES

We can now state our core proposition. It is our enormously expanded capacity to control disease and death in combination with existing social and economic inequalities that create health inequalities by race and SES. It does so because of a very basic principle. As we develop the ability to control disease and death, the benefits of this new-found capacity are not distributed equally throughout the population, but are instead harnessed more securely by individuals and groups who are less likely to be exposed to discrimination and who have greater access to knowledge, money, power, prestige and beneficial social

14.4

connections. According to this principle, whatever the health differences between advantaged and disadvantaged groups might have been before a healthenhancing discovery, the uneven distribution of new knowledge and technology results in a powerful social shaping of health inequalities. This explanation for health inequalities is a core component of the theory of fundamental social causes. Because our proposition derives from that theory, we briefly develop a broader rationale for the theory and then turn to evidence that bears on our core proposition.

FUNDAMENTAL SOCIAL CAUSES OF HEALTH INEQUALITIES

The theory of fundamental social causes begins with the graded relationship regularly observed between indicators of socioeconomic status, on the one hand, and health and mortality, on the other [6 9]. Clearly, biological mechanisms must be involved in this association. Just as clearly, other mechanisms involving behaviours and environmental exposures must also be present: disease does not flow directly from income, educational or occupational statuses into the body. Despite the necessary role played by these mechanisms, the effect of SES on health and mortality cannot be understood by focusing only on the mechanisms that happen to link them at any particular time. Imagine a causal model with SES as the distal factor that is linked to death by more proximal risk factors. If the proximal risk factors are eliminated, we would expect the SES mortality association to disappear. On the contrary, there have been several notable instances in which major proximal risk factors were eliminated but SES inequalities in mortality persisted. Consider Europe and the United States in the nineteenth century, when diseases such as cholera, diphtheria, measles, smallpox and tuberculosis were the major causes of death, and poor sanitation, contaminated water, and substandard and crowded

living conditions were the principal risk factors. People of lower SES were exposed to these conditions to a greater degree and had much higher mortality rates as a consequence [10,11]. Subsequently, however, sanitation was greatly improved, water systems were made safe, housing conditions dramatically improved and effective vaccines were developed, with the result that death from cholera, diphtheria, measles, smallpox or tuberculosis is now rare in the United States and Western Europe. We would have expected the association between SES and mortality to disappear, because the mechanisms linking them were virtually eliminated or blocked. But it did not disappear. Why not? New risk factors (such as chemical pollutants) arose, new knowledge about risk factors (such as smoking) emerged and new treatment technologies (such as medicines that reduce cholesterol) were developed, and those possessing the most resources were best able to avoid the new risks and take advantage of the new protective factors, resulting in the emergence of a socioeconomic gradient in these factors. The list of circumstances that are shaped by SES-related resources is very long and is not limited to the standard behavioural risk factors (e.g. smoking, exercise, diet) typically measured in risk factor epidemiology. For

FUNDAMENTAL SOCIAL CAUSES OF HEALTH INEQUALITIES

example, Lutfey and Freese [12] use an ethnographic approach to study the management of diabetes; they show how the organization of clinics (single provider versus rotating providers), physicians’ expectations of patients’ capacity to use the newest diabetescontrol techniques, access to insurance and many other circumstances result, on average, in an advantaged circumstance for those who are rich in socioeconomic resources. As Lutfey and Freese argue, it is when circumstances like these are reproduced across many situations (e.g. situations related to health behaviours, preventive health care and the full range of existing diseases) that the robust association between SES-related resources and health emerges. As new discoveries are made, our ability to control disease advances, new items will be added to the list of health-enhancing circumstances and, our theory says, those who command more resources will, on average, be better able to access and benefit from the new knowledge we gain. In this way, the association between SES and disease is reproduced dynamically through a complex and evolving set of intervening mechanisms that change over time and vary from place to place.

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According to the fundamental cause idea, this dynamic reproduction of the association between SES and disease occurs because the flexible nature of resources of knowledge, money, power, prestige and beneficial social connections allows the association to be reproduced in widely varying circumstances. Flexible resources are important in at least two ways. First, they directly shape individual health behaviours by influencing whether individuals are aware of, have access to, can afford and are supported in their efforts to engage in health-enhancing behaviours. Second, resources shape access to broad contexts such as neighbourhoods, social networks and occupations that vary in their associated profiles of risk and protective factors. For example, white-collar jobs are less dangerous and more likely to include health care benefits than blue-collar jobs. Low-income housing is more likely to be located in neighbourhoods whose limited power and political organization make them vulnerable to noise, pollution and noxious social conditions, including targeted advertising of health-harming products such as tobacco and alcohol. Thus, the processes implied by the fundamental cause perspective operate at both individual and contextual levels.

EMPIRICAL EVIDENCE BEARING ON THE THEORY

We argue that SES inequalities in mortality arise because people of higher SES use flexible resources to avoid risks and adopt protective strategies. It follows that SES mortality gradients should be diminished when people cannot use their resources in this way. Phelan et al. [9] constructed a test of the fundamental cause explanation by identifying a situation in which it is difficult to use resources to prolong life when even the richest or most powerful person on earth cannot use resources to escape death. This is the case when we consider death from diseases that we do not yet know how to prevent or treat. If the utilization of resources is critical in prolonging life, then, when resources associated with higher status are useless, high SES should confer little advantage, and the usually robust SES mortality association should be reduced. If these expectations were disconfirmed, it would pose a serious challenge to the theory.

14.5.1

SES associations with more and less preventable causes of death

Phelan et al. [9] tested this prediction using the National Longitudinal Mortality Study (NLMS) and ratings they developed of the preventability of death from specific causes. The NLMS [3,13] is a large American prospective study that uses combined samples of selected Current Population Surveys that are then linked to the National Death Index to determine occurrences and causes of death in a follow-up period of approximately nine years. Reliable ratings (intraclass correlation of 0.85) of the preventability of death were made by two physician-epidemiologists. Causes were categorized into high-preventability and lowpreventability groups. Common high-preventability causes included cerebrovascular diseases, chronic obstructive pulmonary disease, ischaemic heart

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disease, malignant neoplasm of the trachea, bronchus and lung, and pneumonia and influenza; common lowpreventability causes included arrhythmias and malignant neoplasms of the pancreas, female breast and prostate. Gradients according to SES indicators of education and income were then examined separately for high- and low-preventability causes. Consistent with predictions derived from the fundamental cause explanation, Phelan et al. found that the SES mortality association was significantly stronger for highly preventable causes of death than for less preventable causes of death. For example, for individuals between 45 and 64 years of age, the relative risk of death associated with having an eight-grade education as compared with more than a college education is 2.00 for high-preventability causes as opposed to 1.21 for low-preventability causes. Similarly, in the same age group, the relative risk of death associated with an income less than $5000 compared with more than $50 000 is 2.81 for high-preventability causes and 1.86 for low-preventability causes.

14.5.2

Time trends in socioeconomic and racial inequalities in mortality

If our core proposition is correct, inequalities by SES and race should emerge when new health-enhancing information or technology is developed. Diseases for which death has become dramatically more preven-

table include heart disease, Hodgkin disease, lung cancer and colon cancer. In contrast, if death remains difficult or impossible to prevent, as it is for brain and ovarian cancer, inequalities should not change substantially with time. The Phelan et al. [9] test did not provide evidence on changes in inequalities over time. Here we report evidence bearing on these predictions. First consider mortality trends for diseases from which death remains difficult to prevent. Figure 14.3 presents age-adjusted brain cancer mortality rates per 100 000 men in the United States between 1950 and 1999. Consistent with the idea that we have not yet learned how to prevent death from this disease, the death rates are lower for black than for white groups, and the difference between the groups remains relatively constant through time, as do the modestly lower rates for black compared with white. Consider next some diseases for which great strides in prevention and treatment have been made. A dramatic exampleisheartdisease. Asshown inFigure14.4, two patterns are obvious. First, consistent with the idea that we have made great strides in our capacity to prevent death from this disease, age-adjusted rates declined rapidly between 1950 and 2000 in the US. Second, whereas rates of death for black and white populations were quite similar in 1950, inequalities favouring white over black populations have emerged since that time. In addition, death rates from heart disease are now much higher among those with lower levels of education. Taken together, this evidence is

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consistent with the idea that when we develop the wherewithal to prevent or treat a disease, groups that are richer in resources and that are less likely to experience discrimination (such as white individuals and people with higher levels of education) benefit more fully from the new-found capacity to control disease. Monitoring mortality rates by SES in the United States is more problematic than by race, because no indicators of SES were identified on US death certificates until recently. To achieve some assessment of SES trends over time, Singh et al. [15] employed principal components analysis to develop socioeconomic scores from 1990 Census data for every county in the United States. Scores were based on 11 variables measuring county-level SES. Of all the 11 variables loaded on one component, the three variables that

Figure 14.4 Heart disease age adjusted death rates per 100 000 1950 2000 [14]

were most important in defining that component were median family income, family poverty rate and percentage of the population with more than 12 years of education. Singh, Miller and Hankey [16] examined the stability of this measure using data from the 1970 and 1980 Censuses and found it to be quite stable. Using quintiles of the socioeconomic scores, Singh et al. [16] observed dramatic evidence of changing associations between SES and two major cancer killers: lung cancer and colon cancer. Figure 14.5 shows age-adjusted lung cancer mortality rates for three quintiles (highest, middle and lowest) for men aged 25 64 years. Rates were substantially higher in the highest SES counties in 1950. However, once evidence about the harmful effects of smoking emerged in the late 1950s and early 1960s, mortality in the

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Figure 14.6 Age adjusted colon cancer mortality (men 25 64) 1950 1998 by SES of county of residence [16]

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highest-SES counties began to flatten out, while rates in the poorest counties continued to rise. By 1998, the association between county-level SES and lung cancer mortality had completely reversed, such that the highest rates are now in the lowest-SES counties. The situation for women is not as dramatic, but a more modest version of the same reversal seems to be underway: until the late 1980s, women from highSES counties had the highest rates of lung cancer mortality, but by 1998 they had the lowest rates. Figure 14.6 shows age-adjusted mortality rates from colon cancer in men (aged 25 64 years) in three quintiles of county-level SES (highest, middle and lowest). As the figure shows, men in low-SES counties had dramatically lower rates of colon cancer mortality in 1950. However, as our ability to prevent death from this disease increased in the ensuing decades, men in high-SES counties experienced a dramatic decline in mortality rates, while men in low-SES counties did not, such that, currently, overall mortality rates from colon cancer are modestly higher in low-SES counties than in high-SES counties. A similar pattern occurred for women. Two potential limitations apply to the trend data reported in Figures 14.3 to 14.6. The first is the possibility that in examining specific diseases we fail

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to take account of so-called ‘competing risks’. In this alternative explanation, inequalities emerge when black people or individuals from lower SES areas begin to die at higher rates of diseases like heart disease or colon cancer because they survive long enough to do so. However, our focus on relatively early death (before 65 years) should minimize this problem, and the effect of such competing risks would have to be extremely large to create the observed inequalities. Finally, this potential limitation does not apply to our earlier test using the NLMS, as those data were analysed using a competing risks model [9]. A second potential limitation of the time-trend data is the possibility of diagnostic change over time by race and SES. It is possible that in an earlier era black people and individuals of low SES were less likely to receive accurate cause-of-death designations, producing lower rates in these groups for diseases like heart disease and colon cancer. However, by this reasoning, we would also expect to find inequalities emerging for diseases like brain cancer and ovarian cancer, but we do not. Thus it is not evident how a diagnostic-bias explanation would account for these differences. Second, our previous test using the NLMS examines a period of just 9 years and is not nearly as subject to this form of bias.

FUNDAMENTAL CAUSES AND PSYCHIATRIC ILLNESS

As with physical illnesses, there are strong inverse gradients between SES and many psychiatric illnesses.

These patterns were brought to light in classic works in psychiatric epidemiology, such as Hollingshead and

FUNDAMENTAL SOCIAL CAUSES OF HEALTH INEQUALITIES

Redlich’s [17] Social Class and Mental Illness, Srole and colleagues’ [18] Midtown Manhattan Study and Leighton’s [19] Stirling County Study. In more recent research that employs very different methodologies and definitions of psychiatric illness, the basic patterns remain. For example, Kessler et al. [20] found monotonic associations between educational attainment and several psychiatric disorders in the US. Odds ratios for people with fewer than 12 years of education as compared with people with 16 or more years of education are 1.79 for any affective disorder, 2.10 for any substance abuse and 3.79 for having three or more disorders of any kind. Therefore, the socioeconomic distributions of physical and psychiatric disorders, broadly speaking, are similar those with lower SES have more disorder. However, when we consider historical trends in prevalence, we find a striking contrast between psychiatric and physical disorders. Although ageadjusted mortality rates have declined dramatically, and people are now experiencing many more years of life free from physical disability, the same sort of sea change has not occurred for psychiatric illness. Indeed, the best evidence from true prevalence studies finds current rates to be very high [20,21]. Moreover, evidence about secular changes, while subject to debate, finds rates of depression that are either higher in more recent cohorts or that do not differ from the older cohorts that preceded them [22,23]. Similarly, Kessler et al. [21] found that the 12-month prevalence of psychiatric disorders overall did not change significantly in the US between 1990 1992 and 2001 2003. Two general implications of these patterns are important for our purpose here. First, in the case of mortality from physical illness, we concluded that the significant improvements in population health in the last century were incompatible with both genetic selection explanations and social stress explanations, because it would be implausible to posit the kind of changes in these factors that would have been necessary to explain the reductions in mortality. However, the historical pattern for psychiatric illness is compatible with both selection and social stress explanations. These historical data cannot tell us the extent to which either of these explanations is actually valid, but it leaves them both open as viable explanations.

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There is evidence that both selection and stress play some causal role in producing the inverse association between SES and psychiatric illness. Regarding selection, in Dohrenwend et al.’s [24] large-scale epidemiological study in Israel designed to test social selection and social causation explanations for the association between SES and specific psychiatric disorders, the authors concluded that the evidence was more consistent with a social selection explanation in the case of schizophrenia. However, with the exception of schizophrenia, evidence indicates that social causation processes are of greater significance than are social selection processes in explaining the connection between SES and psychiatric illness [25]. Within the general social causation approach, the social stress explanation has been especially prominent [26]. Much of the argument for the role of stress in producing social inequalities in psychiatric illness rests on findings of differences in rates of illness between socially advantaged and disadvantaged groups, and thus does not provide direct evidence that social stress is the explanation for those differences [27]. However, there also exists direct evidence pointing to the importance of stress in elevating psychiatric problems in lower socioeconomic groups. For example, Turner, Wheaton and Lloyd [28] found that exposure to recent stressful life events, lifetime trauma and chronic stress explained about 30% of the association between occupational prestige and major depressive disorder in a representative sample of Toronto residents. What are the implications of this pattern of findings significant socioeconomic inequalities in psychiatric illness coupled with an overall rate of illness that has not declined from the perspective of fundamental cause theory? The historical data suggest that whatever is causing any SES or race inequalities that exist at the current time is something other than our capacity to decrease the prevalence of these illnesses and the maldistribution of that capacity in the population. If our capacity to prevent or treat effectively had increased, overall rates of disorder should have declined. This conclusion is not surprising if we think about the knowledge we have accrued regarding the prevention of psychiatric illness. We believe most clinicians and researchers would agree that we have garnered little specific knowledge about the measures one can

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take to avert a psychiatric illness. From this perspective, we would not expect to have found declines in the incidence or lifetime prevalence of most psychiatric illnesses. However, the persistence of high rates of psychiatric disorder is somewhat more surprising if we think about advances in the development of effective treatments. We have made tremendous strides in the treatment of psychiatric illnesses with both psychotherapy and medication. These treatments would not be expected to reduce incidence or lifetime prevalence of disorder because their benefits can only be garnered after an illness develops. However, the development of effective treatments should reduce current or short-term prevalence, such as 12-month prevalence, because effective treatment should reduce individuals’ symptoms such that they no longer meet diagnostic criteria for the disorder for which they were treated. Yet the data do not indicate a reduction in 12-month prevalence [21]. Why has the availability of effective treatments not led to a significant decline in these rates of psychiatric illness? We can only speculate on the reasons, which may include a tendency for individuals to stop psychotherapy or medication when symptoms subside or to terminate medications because of unpleasant side effects. Also undoubtedly an important factor is that only a minority of people with psychiatric disorders receive treatment in the first place. For example, in the National Comorbidity Study Replication, a large nationally representative US survey of psychiatric illness and treatment, only 41.1% of people who met criteria for a psychiatric disorder in the previous 12 months received any treatment during that period, and only 32.7% of the 41.1% received ‘minimally adequate treatment’ [29]. Many factors surely contribute to this huge discrepancy between need and treatment. We point to the stigma that still surrounds psychiatric illness as a prominent factor [30]. Receiving treatment for a psychiatric illness formalizes and solidifies a psychiatric illness label. Medication for depression, the most common psychiatric disorder, is presented quite negatively in the mass media, often as a selfindulgent crutch [31], and people who take such medication are also portrayed negatively. Nonparity between psychiatric and physical illness in terms of health insurance coverage, a state of affairs that we

view as a structural aspect of stigma, also surely decreases utilization of effective treatments. Some evidence exists that perceptions of mental illness stigma are associated with withdrawal from treatment once begun [32,33]. Whatever the reasons that rates of psychiatric illness have failed to decline, we believe it is only a matter of time before this situation changes. Unless the massive national investment in neurobiology and genetics fails, we will gain the capacity to influence the onset and course of common but serious psychiatric illnesses, and given that large inequalities in access to mental health treatment according to SES, race and ethnicity exist at the current time [17,34,35], we can almost certainly expect that any new knowledge about how to prevent or cure psychiatric illnesses will be maldistributed by these same factors in the time ahead. In this way, social inequalities will become an even more important determinant of disease distribution in an era of successful prevention and treatment. They will add to or combine with the factors that currently produce associations between SES and the psychiatric illnesses. Some readers may doubt the ultimate success of neurobiological and genetic approaches in reducing the prevalence of psychiatric illness it is possible that our enormous investment in these approaches will fail. If so, social factors will not be ascendant for the reasons we have speculated about here. Instead, the situation shall remain much as it is: robust associations between SES and many psychiatric disorders will be explained through processes of social stress or social selection across the life course. The importance of social status has been with us since the inception of psychiatric epidemiology, it is with us today and, if the reasoning represented herein is apt, it will become an even more prominent cause in the time ahead.

REFERENCES 1. Antonovsky, A. (1967) Social class, life expectancy and overall mortality. Milbank Memorial Fund Quarterly, 45, 31 73. 2. Kunst, A. E., Feikje, G., Mackenbach, J. P. and EU Working Group on Socioeconomic Inequalities in Health (1998) Occupational class and cause specific mortality in middle aged men in 11 European countries:

FUNDAMENTAL SOCIAL CAUSES OF HEALTH INEQUALITIES

3.

4.

5.

6.

7.

8.

9.

10.

11. 12.

13.

14.

comparison of population based studies. British Med ical Journal, 316, 1636 1642. Sorlie, P. D., Backlund, E. and Keller, J. (1995) US mortality by economic, demographic, and social char acteristics: The National Longitudinal Mortality Study. American Journal of Public Health, 85, 949 956. National Center for Health Statistics (2006) Health United States 2006: With Chartbook on Trends in the Health of Americans, National Center for Health Statistics, Hyattsville, Maryland. Lantz, P. M., House, J. S., Lepkowski, J. M. et al. (1998) Results from a nationally representative prospective study of US adults. Journal of the American Medical Association, 279, 1703 1708. Link, B. G. and Phelan, J. C. (1995) Social conditions as fundamental causes of disease. Journal of Health and Social Behavior, 35 (Extra Issue: Forty Years of Med ical Sociology: The State of the Art and Directions for the Future), 80 94. Link, B. G. and Phelan, J. C. (1996) Understanding sociodemographic differences in health the role of fundamental social causes. American Journal of Public Health, 86, 471 473. Link, B. G. and Phelan, J. C. (2000) Evaluating the fundamental cause explanation for social disparities in health, in The Handbook of Medical Sociology, 5th edn (eds C. E. Bird, P. Conrad and A. M. Freemont), Prentice Hall, Upper Saddle River, New Jersey, pp. 33 46. Phelan, J. C., Link, B. G., Diez Roux, A. et al. (2004) ‘Fundamental causes’ of social inequalities in mortal ity: a test of the theory. Journal of Health and Social Behavior, 45, 265 285. Chapin, C. V. (1924) Deaths among taxpayers and non taxpayers income tax, Providence, 1865. American Journal of Public Health, 4, 647 651. Villerme, L. (1840) Tableau d’Etat Physique et Moral des Ouvriers, vol. 2, Jules Renouard et Cie, Paris. Lutfey, K. and Freese, J. (2005) Toward some funda mentals of fundamental causality: socioeconomic sta tus and health in the routine clinic visit for diabetes. American Journal of Sociology, 110, 1326 1337. Rogot, E., Sorlie, P. D., Johnson, N. J. and Schmitt, C. (1992) A Mortality Study of 1.3 Million Persons by Demographic, Social, and Economic Factors: 1979 1985 Follow Up, NIH publication 92 3297, National Institutes of Health, Bethesda, Maryland. National Center for Health Statistics (2003) Health United States 2003: With Chartbook on Trends in the

15.

16.

17.

18.

19.

20.

21.

22.

23.

24.

25. 26. 27.

191

Health of Americans, National Center for Health Sta tistics, Hyattsville, Maryland. Singh, G., Miller, B., Hankey, B. et al. (2002) Changing area socioeconomic patterns in U.S. cancer mortality, 1950 1998: Part I All cancers among men. Journal of the National Cancer Institute, 94, 904 915. Singh, G., Miller, B. and Hankey, B. (2002) Changing area socioeconomic patterns in U.S. cancer mortality, 1950 1998: Part II Lung and colorectal cancers. Journal of the National Cancer Institute, 94, 916 925. Hollingshead, A. and Redlich, F. (1958) Social Class and Mental Illness, John Wiley and Sons, Inc., New York. Srole, L., Langner, T., Michael, S. et al. (1962) Mental Health in the Metropolis: The Midtown Manhattan Study, McGraw Hill, New York. Leighton, A. (1959) My Name is Legion: The Stirling County Study of Psychiatric Disorder and Social Environment, vol. 1, Basic Books, New York. Kessler, R. C., McGonagle, K., Zhao, S. et al. (1994) Lifetime and 12 month prevalence of DSM III R psy chiatric disorders in the United States: results from the National Comorbidity Study. Archives of General Psy chiatry, 51, 8 19. Kessler, R. C., Demler, O., Frank, R. G. et al. (2005) Prevalence and treatment of mental disorders, 1990 to 2003. New England Journal of Medicine, 352, 2515 2523. Klerman, G. L. (1989) The current age of youthful melancholia: evidence for increase in depression among adolescents and young adults, in Annual Progress in Child Psychiatry and Child Development (eds S. Chess and M. Hertzig), Brunner/Mazel, Philadelphia, Pennsylvania, pp. 333 335. Murphy, J., Laird, N., Monson, R. et al. (2000) A 40 year perspective on the prevalence of depression: the Stirling County Study. Archives of General Psychiatry, 57, 209 215. Dohrenwend, B. P., Levav, I., Shrout, P. et al. (1992) Socioeconomic status and psychiatric disorder: the causation selection issue. Science, 255, 946 952. Aneshensel, C.S. (1992) Social stress: theory and research. Annual Review of Sociology, 18, 15 38. Pearlin, L. I. (1989) The sociological study of stress. Journal of Health and Social Behavior, 30, 241 256. Schwartz, S. and Meyer, I. (In press) Mental health disparities research: The impact of within and between

192

28.

29.

30.

31.

SOCIAL DETERMINANTS

group analyses on tests of social stress hypotheses./ Social Science and Medicine. Turner, R. J., Wheaton, B. and Lloyd, D. A. (1995) The epidemiology of social stress. American Sociological Review, 60, 104 125. Wang, P. S., Lane, M., Olfson, M. et al. (2005) Twelve month use of mental health services in the United States. Archives of General Psychiatry, 62, 629 640. Phelan, J. C., Link, B. G., Stueve, A. and Pescosolido, B. A. (2000) Public conceptions of mental illness in 1950 and 1996: What is mental illness and is it to be feared? Journal of Health and Social Behavior, 41, 188 207. Kuppin, S. (2006) The American Public and Prozac: An In depth Analysis of the American Public’s Views on the Causes of Depression and Its Treatment with Antidepressant Medication, Unpublished doctoral dissertation.

32. Sirey, J. A., Bruce, M. L., Alexopoulos, G. S. et al. (2001) Perceived stigma as a predictor of treatment discontinuation in young and older outpatients with depression, American Journal of Psychiatry, 158 (3), 479 481. 33. Sirey, J. A., Bruce, M. L., Alexopoulos, G. S. et al. (2001) Stigma as a barrier to recovery: perceived stigma and patient rated severity of illness as predictors of antidepressant drug adherence. Psychiatric Services, 52(12), 1615 1620. 34. Alegria, M., Canino, G., Rios, R. et al. (2002) Mental health care for Latinos: inequalities in use of specialty mental health services among Latinos, African Amer icans, and non Latino whites. Psychiatric Services, 53, 1547 1555. 35. Lorant, V., Kampfl, D., Seghers, A. et al. (2003) Socio economic differences in psychiatric impatient care. Acta Psychiatrica Scandinavia, 107, 170 177.

15 The sociodevelopmental origins of psychosis Craig Morgan1 and Gerard Hutchinson2 1 2

NIH Biomedical Research Centre and Institute of Psychiatry, King' s College London, London, UK Psychiatry Unit, Department of Clinical Medical Sciences, University of the West Indies, Mount Hope, Champs Fleurs, Trinidad

In the past twenty years the dominant view, at least until recently, has been that schizophrenia (and other psychoses) is a genetic brain disease, the onset of which is the product of a neurodevelopmental process [1]. Social factors, if they have been assigned a role at all, have been relegated to the status of triggers, serving merely to hasten the onset of a largely biologically determined disease. Once disorder is established, it is generally conceded that social environments and experiences, particularly interpersonal family relationships, have a role in course and outcome. However, their role in aetiology, beyond that of precipitants, remains contested. Here, in reviewing the relevant literature, we address the question: Is there now substantive evidence that socioenvironmental factors are important in the aetiology of psychosis, beyond merely triggering onset? The proposition that socioenvironmental factors are important has, in the past, been undermined by two particular problems. First, repeated findings (discussed fully below) that those with a serious mental disorder are more likely to live in cities [2], to be of low socioeconomic status and to experience more

trauma and adversity [3,4] have been mired in seemingly irresolvable debates about whether these are causal (or index exposure to causal processes) or simply reflect an underlying genetic or biological vulnerability that compromises social development (drift versus cause). Second, the mechanisms by which social contexts and experiences impact on individuals to increase risk of schizophrenia and other psychoses have been poorly specified. Only a small proportion of those who are exposed to adverse social conditions, traumatic life events, and so on, ever develop a serious mental disorder. The types of adverse social conditions associated with psychosis are not specific; they are also associated with a range of other disorders including depression and anxiety [5]. If such experiences are relevant to the onset of psychosis, why are so few people affected? Ironically, it is advances in genetics, neuroscience and psychology that are beginning to suggest plausible mechanisms [6 10] and, in doing so, provide further impetus to research on the relationship between social factors and psychosis. More than this, such research provides the basis for more genuinely integrated models of

Principles of Social Psychiatry, second edition Edited by Craig Morgan and Dinesh Bhugra Ó 2010 John Wiley & Sons, Ltd.

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aetiology, which posit interactions between genes, biology, psychology and society over the life course [11,12]. We take this one step further and ask whether there is now evidence for a (predominantly) sociodevelopmental pathway to psychosis.

15.1

Some of the impetus for this line of thought stems from recent epidemiological research that suggest notable variations in the incidence of schizophrenia and other psychoses by place and social group.

A CHANGING EPIDEMIOLOGICAL LANDSCAPE

In the 1960s, 1970s and 1980s, the World Health Organization conducted a series of seminal studies of the epidemiology of schizophrenia [13,14]. Perhaps the most influential of these, the Determinants of Outcomes of Severe Mental Disorder (DOSMeD) [14], found that the incidence of narrowly defined schizophrenia, in the seven countries for which reliable estimates were available, ranged from 7 per 100 000 persons per year in Aarhus (Denmark) to 14 per 100 000 persons per year in Nottingham (UK), a statistically nonsignificant variation (at p < 0.05). This was widely interpreted as indicating that there is a uniform worldwide incidence of schizophrenia, an interpretation that has been taken as further evidence that the disorder is primarily genetic the usual variability that would be expected if the occurrence of schizophrenia was influenced by external environments was simply not evident [15,16]. For example, as Crow states ([16], p. 15): ‘Incidences are relatively uniform across populations, particularly when the core (nuclear) symptoms are assessed . . .. The fact that incidence is apparently unrelated to geographic or other environmental variation . . . is the key observation that has to be explained by theories of aetiology.’ However, in recent years, new research and metaanalyses have challenged the interpretation that schizophrenia, even narrowly defined, has a uniform incidence [17,18]. A comprehensive meta-analysis of 100 incidence studies by McGrath and colleagues [18], for example, found evidence of marked variations across a number of domains. Overall, even when the bottom 10% and top 10% were excluded, there was still more than a fivefold variation in reported incidence rates among the included studies (median incidence rate: 15 per 100 000 persons per year) a variation that could not be explained by methodological heterogeneity. The review further found evidence that rates are higher in men (rate

ratio median of 1.4), and confirmed the higher rates in urban (versus mixed rural urban) areas and in migrant (versus host) populations (rate ratio median of 4.6). These latter two findings have been replicated and extended in other recent and more specific reviews [2,17], and each is discussed in turn below. In fact, from the beginning, the interpretation of a uniform incidence did not go unchallenged. A number of commentators pointed out that, although statistically nonsignificant, there was a twofold difference between the highest and lowest reported incidence rates for narrow schizophrenia in the DOSMeD study, and, for broadly defined schizophrenia, there were even more marked differences among the various centres [19]. The most parsimonious explanation for the initial DOSMeD finding is that the study was underpowered to detect geographical variations in incidence (n ¼ 302 cases across 8 sites in 7 countries). As McGrath [20] has commented, ‘. . . schizophrenia is not the egalitarian disorder that we once thought it was’ (p. 14). To rephrase Crow, it seems that it is geographical and environmental variance (not invariance) that is the key observation that has to be explained by theories of aetiology. At the same time, a series of epidemiological surveys have reported surprisingly high rates of psychosis or psychosis-like experiences (e.g. auditory hallucinations, odd ideas, paranoia) in general population samples (estimates range from around 5% to around 20%) [21,22]. This has reopened the debate about whether psychotic disorders are discrete entities, marked by a clear disjunction from normal experience, or whether they lie on a continuum with normality (see also Chapter 2) [23]. Of particular relevance here is that these experiences appear to show similar (but perhaps less marked) variations by area (urban versus rural) [24] and social group (migrant versus host) [25] to those reported in studies of

THE SOCIODEVELOPMENTAL ORIGINS OF PSYCHOSIS

diagnostic groups. This has opened a particularly fruitful avenue of research that is further contributing to renewed interest in the role of the (social) environ-

15.2

ment in the onset of psychosis (see below). Here, we consider evidence concerning both psychotic disorder and psychosis-like experiences.

URBANICITY: (1) EVIDENCE

There is consistent evidence that urbanicity (variously defined) is associated with around a twofold increased risk of schizophrenia (or psychosis more broadly). In a meta-analysis of ten studies, for example, Krabbendam and van Os [2] report a pooled odds ratio of 1.72 (95% confidence interval (CI) 1.53 1.92), indicating on average a 70% higher incidence in urban compared with rural areas. Those studies that were able to adjust for potential confounders show that this association cannot be entirely explained by the effects of age, gender, ethnicity, social class or markers of genetic risk [2]. Further, there is now evidence that subclinical psychosis-like experiences are more common in urban areas, suggesting that on a population level urban environments are associated with a general increase in vulnerability for psychosis [24]. In contrast, the evidence on affective psychosis is more equivocal [26,27]. Nevertheless, with regard to schizophrenia at least, there is now compelling evidence that these findings are not simply a function of individuals predisposed to develop, or in the process of developing, schizophrenia drifting into the anonymity of cities. In a study of 1.89 million people, drawn from Danish population registers, Pedersen and Mortensen [28] investigated the relationship between place of birth, place of residence before the age of 15 years and risk of schizophrenia. Place was characterized by degree of urbanization (population density) and categorized into five levels from the most rural (reference) to the most densely populated. They found (in line with Marcelis et al. [29], in an earlier Dutch study): (1) at each age, risk of schizophrenia increased in line with degree of urbanization; (2) risk

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of schizophrenia increased in line with length of residence in increasingly urbanized areas a finding that suggests risk may accumulate over development as a consequence of continued exposure; and (3) individuals living in a higher degree of urbanization than five years earlier had an increased risk (relative risk (RR) of 1.4), while individuals living in a lower degree of urbanization than five years earlier had a decreased risk (RR 0.8). In other words, moving to a less densely populated area during upbringing reduced the risk of schizophrenia (and vice versa). If the risk factors indexed by urbanicity, and any other risks they interact with, are causal, then (based on calculations from the study by Pedersen and Mortensen [28]) these may account for around 30% of all cases of schizophrenia ‘making it potentially the most important of all environmental risk factors proposed for schizophrenia’ ([2], p. 797). However, what it is about living in cities or more densely populated areas that increases risk is unclear [30]. It is consequently perhaps most useful to consider ‘urbanicity’ as a risk indicator, indexing exposure to risk factors that coalesce in densely populated environments. These risks are not necessarily related to the social environment. However, where studies have included data on nuerodevelopmental markers (e.g. obstetric complications, neurocognition) or aspects of the physical environment (e.g. traffic pollution, household crowding), they have not found evidence that these contribute to the urban effect [2]. What limited evidence there is does tend to implicate aspects of the social environment, particularly organizational and structural aspects of city living [2].

URBANICITY: (2) SOCIAL CONTEXTS AND STRUCTURES

To begin with, some clues are offered by studies that have investigated variations in the distribution of

schizophrenia (psychosis) within urban environments. This links back to the seminal study, conducted by

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Faris and Dunham [31], of the social distribution of mental disorders in Chicago in the 1930s. In this, the addresses of all patients admitted with mental disorders to four state and eight private hospitals in Chicago over a twelve-year period were plotted on a census map of the city. Considerable variation in the rates of mental disorder according to place of residence was found, with the highest rates being in those districts characterized by social disorganization and fragmentation (i.e. areas with squalid housing, excess crime rates, a high level of social mobility, a high proportion of foreign-born residents, a large proportion of the population living in single rooms or hostels, a high proportion who were unmarried and a high proportion of people living below the official poverty line). This finding was particularly marked for schizophrenia, where the range was from 700 per 100 000 in city centre districts to 100 per 100 000 in the peripheral residential districts. In the 1950s, in a study in Bristol, Hare [32] found that rates of schizophrenia were associated with the proportion of single-person households in an area, a finding he interpreted as suggesting a role for social fragmentation and isolation. These studies link to classic sociological theories that have located the origins of intrapsychic distress in social organization and structure, notably the work of Durkheim and his theories of suicide. Here, the concept of anomie (i.e. a shorthand for contexts in which social norms have broken down) may be useful in characterizing socially fragmented areas and understanding the feelings of disaffection they engender [33 35]. This shifts attention from isolation per se (or ‘social defeat’, see below) to an altogether more fraught state of antagonism between the individual and his/her environment one in which suspiciousness and paranoia become understandable and (perhaps) even adaptive responses. In an effort to gain some traction on the urban effect, recent research has revisited these early studies and sought to investigate the impact of aspects of the wider social environment notably social fragmentation, deprivation and cohesion (albeit with limited theorizing on how such contextual factors impact on, and become manifest in, individuals). In their review, Allardyce and Boydell [36] identified 13 relevant studies. In one of the earliest, Boydell et al. [37] found that, in the most socioeconomically

deprived areas of south-east London, area-level inequality was associated with an increased incidence of psychosis. The authors speculate that the association with inequality in the most deprived areas may reflect the effects of reduced social cohesion and social support and increased mistrust and isolation. In a study of first admission rates for schizophrenia and area-level measures of social fragmentation, deprivation and urbanicity in Scotland, Allardyce et al. [38] found that the association between urbanicity and first admission rates was fully accounted for by indices of social fragmentation (based on mobility in the previous year, single-person households, number of unmarried persons) and deprivation (based on Carstairs scores). In the ÆSOP study of first-episode psychosis conducted in three UK centres, the incidence of all psychoses was highest in south-east London (54.5 per 100 000), the most urbanized centre, compared with Nottingham (25.1 per 100 000) and Bristol (25.1 per 100 000) [39]. Within south-east London, there was evidence of additional variation at the small (ward) area-level in the incidence of schizophrenia that could not be accounted for by individual-level variables, such as age, sex and ethnicity [26,40]. Further, around 20% of the neighbourhood variation in incidence was accounted for by voter turnout (a proxy measure for social capital) and ethnic fragmentation (segregation), independent of area-level deprivation [26,40]. Taking this one step further, Kirkbride et al. [41] conducted another study in the same area of southeast London to investigate more directly the relationship between low levels of ‘social capital’ (defined primarily as social cohesion and trust and measured using postal questionnaires) and rates of schizophrenia. Intriguingly, what they found was a U-shaped relationship, such that incidence rates were highest in areas with low (incidence rate ratio (IRR) of 2.0) and with high (IRR 2.5) levels of cohesion and trust, compared with areas with medium levels of cohesion and trust, independent of age, sex, ethnicity and other neighbourhood characteristics (e.g. ethnic fragmentation and deprivation). The authors concluded that areas with low social capital may compound exposure to social stress, whereas areas with high social capital may be problematic for those who are excluded, for whatever reasons, from accessing the

THE SOCIODEVELOPMENTAL ORIGINS OF PSYCHOSIS

available social capital. Tentatively, what these findings suggest is that it is not so much deprivation per se but resulting area-level fragmentation, loss of cohesion and trust, and isolation that is associated with an increased incidence of schizophrenia. This association, however, is not necessarily straightforward, and (as the findings from the latter study by Kirkbride et al. [41] suggest) may be modified by individual access to area-level social capital and support. A study conducted in the Netherlands using data from the Maastricht Mental Heath Case Register found that those who were single had a higher risk of schizophrenia if they lived in areas with fewer single people (relative to areas with more single people) [42]. The authors speculate that feelings of isolation may be exacerbated if single people live in areas where the majority live with a partner, an interpretation that again allows a role for isolation or, possibly, anomie. There remain caveats. The data are still relatively thin and largely cross-sectional, with limited account having been taken of potential confounders, notably a family history of psychosis. The speculations con-

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cerning social fragmentation and social capital need to be investigated more directly and replicated, ideally in prospective designs that can separate cause and effect (the feasibility of such studies notwithstanding). There is, moreover, some inconsistency in the literature. For example, in a study conducted in Australia, McGrath et al. [43] failed to find an association between urbanicity and schizophrenia, a finding that perhaps hints at a possible protective role for climate. Other studies have found that area-level effects (e.g. neighbourhood deprivation) are largely accounted for by individual-level risk factors [2]. This may reflect the methodological challenges inherent in disentangling effects that operate at individual and area levels. What it further reminds us is that at least some of the observed variation in incidence between urban and rural areas may be a consequence of the aggregation in cities of individual-level exposures (e.g. trauma, stressful life events, substance use). The thorny issue of quite how social contexts impact on individuals in such a way as to predispose to, or increase risk for, schizophrenia and other psychoses is discussed further below.

MIGRATION AND ETHNICITY: (1) EVIDENCE

There is now strong evidence from studies in the UK, the Netherlands, Sweden, Denmark, Australia and the US that rates of schizophrenia and other psychoses are elevated in migrant and minority ethnic populations [44]. In their recent meta-analysis of population-based incidence studies of schizophrenia, Cantor-Graae and Selten [17] found (from a total of 50 effect sizes) a mean weighted relative risk (RR) for developing schizophrenia among migrant groups of 2.9 compared with indigenous or host populations. The relative risk was particularly high in migrants from developing countries (RR 3.3), in secondgeneration migrants (RR 4.5) and in migrants from countries where the majority population is black (RR 4.8). This latter finding is intriguing, as we know that it is more visible migrant and minority groups who experience more racism and discrimination (see below). Since the publication of this review, there have been further studies in Europe and the US confirming this general pattern [44 47].

These findings have proved controversial, a key question being whether the reported rates are valid or a function of methodological artefact and misdiagnosis [48]. In response, recent studies have used more robust methodologies, with comprehensive casefinding procedures, accurate population denominator data and standardized diagnostic procedures with raters blind to the ethnicity of individuals being assessed. Such studies continue to report very high rates [48]. For example, the ÆSOP study (introduced above) found that the incidence of all psychoses was over 6 times higher in black Caribbean and over 4 times higher in black African populations in the UK, compared with white British [47]. These findings held across all three centres (south-east London, Nottingham, Bristol), for men and women, and across all age groups [47]. Studies that have attempted to assess directly the potential role of misdiagnosis have failed to find clear evidence that this is sufficient to account for the reported rates [49].

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The degree of increased risk, however, is not consistent across migrant and minority ethnic groups as hinted at in the meta-analysis conducted by CantorGraae and Selten [17]. For example, in the ÆSOP study, the incidence of psychosis was raised to a much lesser extent in Asian and other white (i.e. nonBritish) populations [47]. In a more recent study in east London, the incidence was again found to be higher in most migrant and minority ethnic groups [45]. However, in Pakistani and Bangladeshi

15.5

populations, this appeared to be evident for women only. In the Netherlands, the incidence appears to be highest in Moroccan migrants [50]. The reasons for these variations are unclear; however, speculation has focused on differential exposure to discrimination and the buffering effects of family supports and social networks. More generally, this leads to the question of why rates of schizophrenia and other psychoses are elevated (albeit to varying degrees) in migrant populations.

MIGRATION AND ETHNICITY: (2) DISCRIMINATION, DISADVANTAGE AND ANOMIE

There are a number of recent reviews that have addressed this question [44,48,51 53]. To cut a long story short, all haveconverged on the conclusion that the high rates are likely to be a consequence of exposure, broadly defined, to adverse social contexts and experiences. In part, this conclusion derives (a) from a lack of any evidence that genetic or known biological risk indicators (e.g. obstetric complications, neurological soft signs, minor physical anomalies) contribute to increased risk in these populations [48] and (b) from the observation that, as rates are even more elevated in second-generation migrants, selective migration is unlikely to play a significant role [17]. Where studies have been conducted, all show that rates of psychosis are not elevated in the countries from which these populations have migrated [54 56], which suggests population differences in genetic risk are unlikely to explain the repeated findings. More than this, there is now direct evidence implicating aspects of the social environment and experience over the life course, much of it from studies conducted in the UK and the Netherlands. Perhaps most intriguing is the now replicated finding that the relative risk of schizophrenia increases as migrant and minority ethnic groups form a decreasing proportion of local populations. In other words, the less ethnically dense an area, the higher the rates of psychosis (see Figure 15.1). This pattern was originally reported by Faris and Dunham and has now been reported for the black Caribbean population in the UK [40,57] and for migrant populations in the Netherlands [58]. This relates back to research reviewed

above linking aspects of the wider social environment with the risk of psychosis, and again hints at a possible role for isolation and discrimination in areas of low ethnic density or, alternatively, at a protective effect of living in areas of high ethnic density, which may mitigate the impact of discrimination, isolation and disadvantage. That said, the processes underpinning this repeated finding have not been directly investigated. What is perhaps most notable, however, is that such a social patterning of risk defies ready explanation, or even plausible speculation, in terms of social drift or known biological risk factors [48]. There are a small number of studies that have attempted to investigate directly the relationship between discrimination and psychosis. For example, Veling, Hoek and Mackenbach [59] used general population data on perceptions of discrimination in the Netherlands to order migrant and minority ethnic groups according to levels of exposure to discrimination. Using this index of discrimination, they found clear evidence of a linear relationship with schizophrenia, such that the incidence increased in line with level of exposure to discrimination, the highest rates being in those with highest levels of perceived discrimination (i.e. Moroccan, with IRR 4.82). More generally, an analysis of data from the Netherlands Mental Health Survey and Incidence Study found tentative evidence that experiences of discrimination at baseline predicted the occurrence of paranoid ideation at three-year follow-up in otherwise healthy individuals. This was not, however, focused specifically on racial discrimination and the number of

THE SOCIODEVELOPMENTAL ORIGINS OF PSYCHOSIS

High % minority population

Medium % minority population

Low % minority population

RR 2.4†

RR 3.6†

RR 4.4†

RR 3.8‡

RR 2.1‡

RR 6.5‡

RR 1.3*

-

RR 2.4*

199

RR, Rate ratio (Migrant or ethnic group vs. White) †Boydell et al, 2001; ‡Kirkbride et al, 2007; *Veling et al, 2008

Figure 15.1 Rate ratios for schizophrenia by ethnic density in recent studies (Reproduced from C. Morgan and G. Hutchinson (2009) The social determinants of psychosis in migrant and ethnic minority populations: a public health tragedy, Psychological Medicine, p. 2)

individuals who reported discrimination and paranoid ideation was very small (n ¼ 7). This remains an area for which there is limited direct evidence and, as a consequence, inferences drawn from indirect evidence (e.g. highest rate in black groups, ethnic density effect), while intuitively appealing, need to be considered with appropriate caution. There is some evidence that exposure to social adversity, broadly defined, over the life course may contribute to the high rates. This comes primarily from studies of the UK black Caribbean population. For example, a series of findings from the ÆSOP study link indicators of childhood and adult disadvantage with psychosis in general and with high rates in the Caribbean population in particular [25,60,61]. To take one example, this study found that long-term separation from a parent before the age of 16 (a marker of childhood disadvantage, indexing exposure to intrafamilial conflict, financial hardship and housing instability) was around three times more common in those with a first-episode of psychosis compared with

population-based controls, after taking account of possible confounders. Most importantly, while the effect of separation on the odds of psychosis was similar for white British and black Caribbean individuals, separations were much more common for black Caribbeans (e.g. 31% black Caribbean controls versus 18% white British controls, p ¼ 0.03) [60]. This pattern (i.e. a similar effect size in both groups, a higher prevalence in the black Caribbean population) was also evident for a number of indicators of adult social disadvantage and isolation (both recent and longstanding), including unemployment, housing instability and limited social networks [61]. These findings are important as they are consistent with the high rates being a function of a greater prevalence of social risk factors in the black Caribbean population [61]. Returning to the previous paragraph, high levels of social disadvantage in migrant and minority ethnic groups may reflect a subtle racism institutionalized in social structures that constrain access to opportunities and resources [48].

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There is, of course, a need for caution here. The kinds of individual-level markers of adversity that have been considered are at best crude proxies for complex social experiences that occur over time and in specific contexts. In relation to adult indicators at least, the problem of reverse causality is not overcome by consideration of linear relationships. These data are nonetheless intriguing, because they pattern in precisely the way that would be expected if these vari-

15.6

ables index exposure to contexts and experiences that contribute to higher rates in the black Caribbean group. In other words, there is a convergence of what might be termed circumstantial evidence on the interpretation that the high rates are a function of cumulative adversity over the life course, in interaction with aspects of the wider environment (e.g. ethnic density) perhaps leading, for some, to a chronic state of dissonance with the social environment (i.e. anomie).

SOCIAL ADVERSITY ACROSS THE LIFE COURSE: (1) CHILDHOOD

The model of schizophrenia (and other psychoses) as a developmental disorder suggests that environmental factors that operate early in life, from pregnancy through infancy, childhood and adolescence, may be particularly important. As already noted, the impact of the urban environment on risk appears to accumulate throughout childhood, perhaps as a consequence of repeated exposure to the unspecified ‘toxins’ (social and physical) that are encountered in cities. The negative and enduring impact of adversities experienced early in life are evident for a host of problematic outcomes (offending, substance use, all forms of mental disorder). It is no surprise, from these observations, that childhood adversity in various forms (intrafamilial problems, traumas, bullying) has attracted attention as a possible contributory factor in the aetiology of schizophrenia and other psychoses. Perhaps the most controversial area is family interactions and communication [62,63]. The idea that patterns of communication within families contribute to schizophrenia raises the spectre of the ‘schizophrenogenic mother’ [64] and of families being blamed for causing serious mental disorder in their children [65,66]. In their early review, Hirsch and Leff [67] concluded that the evidence to support such theories was weak and methodologically limited. The highly politicized nature of this topic has ensured that aspects of family life have since been largely taboo when considering the causes of schizophrenia and other psychoses, and it is mainly in relation to course and outcome that family interactions have been studied (through the concept of expressed emotion [68]). In these debates, it is all too frequently forgotten that families provide a tremendous amount of informal

care for their relatives, without which mental health services would be stretched to breaking point and the lives of many sufferers would be considerably poorer. The mistake in the early theories was to suppose that most if not all cases of schizophrenia could be traced back to poor parenting. What is lost in the understandable backlash is that unfortunate as it indeed is negative home environments can be sources of considerable stress for children; we know that various forms of childhood adversity (e.g. parental separation, intrafamilial conflict, and so on) can increase risk of negative outcomes in adulthood including depression, anxiety, self-harm, personality disorder and, possibly, psychosis. A number of recent reviews have addressed the question of whether childhood trauma (specifically, childhood sexual and physical abuse) is a causal factor in the aetiology of psychosis [3,11,69,70]. There are a large number of studies that have reported high rates of childhood abuse in samples of individuals with a serious mental disorder (e.g. in a recent review, an average of 50% for men and 50% for women) [3]. However, as these are highly select samples of prevalent cases, they do not provide evidence concerning the relationship with onset. A series of more recent population-based studies have reported marked associations between childhood abuse and trauma (variously defined and measured) and risk of psychosis or psychosis-like experiences. For example, in their analysis of data on 4045 subjects aged 18 64 drawn from the Netherlands Mental Health Survey and Incidence Study, Janssen et al. [71] found that those who had experienced emotional, physical or sexual abuse, or neglect before the age of 16 were more likely to

THE SOCIODEVELOPMENTAL ORIGINS OF PSYCHOSIS

report experiencing psychotic symptoms during a three-year follow-up period. The effect was strongest for the most severe psychosis groups, and held after adjusting for a range of potential confounding variables (e.g. need for care-level psychosis: Adj. OR 7.3). However, the number of subjects with psychotic symptoms was very small, particularly those with the most severe symptoms (n ¼ 7). Other studies have focused on specific experiences or symptoms. Whitfield et al. [72], in a large population-based crosssectional study (n ¼ 17 337), found that those who reported a history of hallucinations (assessed using a single question) were more likely to have been both physically (Adj. OR 1.7) and sexually (Adj. OR 1.7) abused during childhood. This is consistent with other studies that suggest a specific link between hallucinations and prior abuse [73,74]. The evidence for links with other symptoms (e.g. delusions) is less clear. Janssen et al. [71], for example, reported higher rates of both hallucinations and delusional ideation in those who had experienced childhood abuse, but others have found no association between early trauma and delusions [75]. It is not only abuse that has been linked with psychosis or psychosis-like experiences. In a study of adolescents (aged 12 15 years) in Ireland, Kelleher et al. [76] found that those who reported one or more psychotic symptom were more likely to report past exposure to physical abuse, domestic violence and bullying (as victim and/or perpetrator), suggesting a broader range of adverse experiences may be relevant. Once more, however, this study was relatively small, with only 14 (6.6%) of the sample reporting a psychotic symptom. Nevertheless, other studies have found associations with a wider range of traumas (not necessarily restricted to childhood). Spauwen et al. [77], using data on 2524 subjects aged 14 24 from the Early Developmental Stages of Psychopathology Study, found that the experience of any lifetime trauma (from a list of nine events) was associated with the development of three or more (but not fewer) psychotic symptoms during an average follow-up period of 42 months (Adj. OR 1.9). The trauma exerting the strongest independent effect was natural catastrophe (Adj. OR 15.1) followed by physical threat (Adj. OR 2.1). Bebbington et al. [78], using data on 8580 subjects aged 16 74 from the

201

British National Survey of Psychiatric Morbidity, found that those who met criteria for a definite or probable psychotic disorder (n ¼ 60) were over 15 times more likely to have been sexually abused at some point in their lifetime. When the interrelationship between other negative life events and level of depression were controlled, the odds ratio was markedly reduced, though still significant (Adj. OR 2.9). However, the measure of sexual abuse was crude (a single question), no account was taken of timing, duration or severity of abuse, and childhood and adult exposures were not distinguished. There is, moreover, evidence that exposure to multiple traumas is associated with a linear increase in risk for psychosis. Using data from both the National Comorbidity Survey and the British Psychiatric Morbidity Survey, Shevlin et al. [79] found that risk of psychosis increased in dose-response fashion with the number of traumas experienced. Notably, the kinds of traumatic events that were most strongly associated with psychosis were those involving violence and threat, as in the studies by Bebbington et al. [78] and Spauwen et al. [77] (e.g. molestation, physical abuse, serious injury or assault, and violence in the home) or what Tirril Harris has termed intrusive life events. The finding of an effect for cumulative trauma is particularly interesting when set alongside the only study in which the occurrence of sexual abuse has been determined using contemporaneous records. In this, Spataro et al. [80] compared rates of subsequent hospital admissions in those who had been sexually abused before the age of 16 (n ¼ 1612), according to official records, with admission rates in a large population-based control sample (n ¼ 3 139 745). They found no association between child sexual abuse and later admission to hospital with a diagnosis of schizophrenia (RR 1.2). There are of course a number of methodological problems (e.g. most cases of abuse do not come to the attention of services, so that the comparison group is likely to have included significant numbers who were exposed) and strengths (the large sample, contemporaneous records of abuse), but the most intriguing possibility is that intervention by child protection services (which all received) mitigated risk. Just as prolonged and repeated exposure to cumulative adversity over time may compound risk, so intervention may reduce risk.

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SOCIAL DETERMINANTS

This, of course, remains speculative, and recent reviews have highlighted the many methodological limitations that characterize this research (e.g. selection and information bias, uncontrolled confounding, crude measurement of abuse), all of which urges caution [3,70]. The most robust research has been on psychosis-like experiences in general population samples, which have an indeterminate relationship with psychotic disorder. It may be that many positive responses to psychosis screening questionnaires (as are used in these studies) reflect dissociative and/or post-traumatic experiences. In one of the few studies to investigate individuals meeting criteria for a firstepisode psychotic disorder, a relationship with sexual and physical abuse was found in women only, and the effect size was generally weaker than in other studies (i.e. odds ratios of around 2) [81]. There is also evidence that the risk of psychosis is associated with broader indicators of social adversity in childhood; it is in fact difficult to separate out the effects of abuse and indicators of socioeconomic disadvantage, as they are often correlated. In a study using Swedish register data on 2.1 million individuals, Wicks et al. [82] found that a range of indicators of childhood socioeconomic adversity (i.e. rented accommodation, low socioeconomic status, singleparent households, parental unemployment and households receiving social welfare benefits) were

15.7

associated with an increased risk of later psychosis. This links back to research noted above, and other studies, that have found an association with parental separation [60,83]. What has not been fully resolved is the question of whether these associations reflect gene environment correlations, in which exposure to childhood adversity is a consequence of familial liability to psychosis. These more recent studies have adjusted for markers of genetic risk [60,83], but doubts continue to be expressed. In addition, evidence on parental social class is inconsistent (e.g. see References [84] and [85]), though this may be more a reflection of the limitations of such a crude proxy variable, which has been inconsistently defined across studies. Where experiences have been more directly, though still somewhat crudely, considered, the evidence is stronger and more consistent. Intriguing additional evidence comes from the study by Pedersen and Mortensen [28], discussed above. In this, they also found that geographical mobility (i.e. movement outside the prior municipality of residence) during childhood was associated with an increased risk of schizophrenia. Such movements almost certainly involve a change of school, raising the possibility that some of the difficulties in forming relationships and a tendency to social isolation seen in those who later develop schizophrenia reflects socio- rather than neurodevelopmental processes.

SOCIAL ADVERSITY ACROSS THE LIFE COURSE: (2) ADULTHOOD

There are a reasonable number of studies that suggest significant stressful life events are associated with relapse in those with schizophrenia or other psychoses [86,87]. There is, however, uncertainty about the period over which life events are relevant [86,88,89] (i.e. proximal to relapse or through a cumulative impact over time) and, while these studies indicate a heightened sensitivity to stress for those with psychosis, they do not help clarify whether this is relevant to the onset of disorder. In the literature, in fact, there is a confusing use of terminology, with onset and relapse both being used, when what is meant is onset of relapse rather than onset of the illness (i.e. the first episode) [86]. As far as we are aware, there has not been a single study that has investigated the

relationship between life events and first-episode psychosis. There have been a small number of studies that have considered the relationship between life events and psychosis-like experiences, which show an excess of such events in the preceding six months among those who report psychosis-like experiences [90,91]. More broadly, and as noted above, there is evidence that, on a series of fairly crude indicators, social disadvantage is more pronounced in those with a first episode of psychosis compared with population-based controls [61]. The scepticism noted above is, however, more pronounced for data on adult adversity and stress. On the one hand, this is because of the apparent decline in social function that occurs for many prior

THE SOCIODEVELOPMENTAL ORIGINS OF PSYCHOSIS

to the onset of overt positive psychotic symptoms [92], which may in turn increase the risk of exposure to life events (e.g. job loss, relationship break-up) and disadvantaged social circumstances. On the other, there is evidence that likelihood of exposure to stressful events and adverse circumstances is genetically mediated [93]. This raises the possibility that associations with life events (including childhood life events) are a product, in part at least, of gene environment correlations, where genes that increase risk for exposure to stressful environments also increase risk of psychosis [93]. Consequently, the decline in social function (and indeed early markers of problematic development, such as solitary play and isolation) and increased exposure to stress and trauma is usually interpreted as the expression of underlying genetic and neurological abnormalities that predispose to schizophrenia [94]. However, it is equally plausible that these developmental precursors are a consequence of problematic social development, stemming from the kinds of early adverse experiences discussed above [28]. Of course, disentangling these alternatives is methodologically daunting, and it may be that both processes are involved to varying degrees in different individuals. For example, even if the tendency to isolation is initially driven by neurological and cognitive deficits, the exacerbation of this through exposure to familial disadvantage, frequent moves and/or abusive relationships may compound risk and push individuals along a largely sociodevelopmental pathway to psychosis sociodevelopmental in the sense that intervention to modify this social trajectory, even in the biologically vulnerable, may interrupt the pathway to psychosis. In other words, the pessimism engendered by a predominantly neurodevelopmental perspective (‘doomed from the womb’) is turned on its head; framed in terms of sociodevelopment, the trajectory can be altered psychosis, at least for some, is not inevitable. Further, this perspective fits the current evidence on migrant and minority ethnic populations, where it seems to be social contexts and experiences that make the difference, that underpin a significant increased risk of psychosis [48,95]. A series of innovative studies conducted by MyinGermeys and van Os provide some support for this

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perspective [96]. They used Experience Sampling, which assesses the occurrence of daily stresses and hassles in the flow of everyday life, to investigate the impact of daily stresses and emotional responses on the likelihood of the occurrence or exacerbation of psychosis (or psychosis-like) experiences. In one study of general practice attenders, for example, exposure to childhood trauma was found to mediate the relationship between daily stresses and emotional responses, with the greatest increases in negative affect being seen in those with a history of trauma [97]. This provides some evidence that early experiences sensitize individuals and increase negative responsivity to stress albeit not in relation to psychosis. In a further study, Myin-Germeys et al. [98] found that daily stress had a direct impact on what they term ‘moment to moment fluctuations’ in psychotic experiences, with the intensity of symptoms increasing in line with the experience of hassles and stressors. This is a particularly encouraging and innovative line of research, which (using quasiexperimental designs) overcomes many limitations of traditional observational social epidemiology. There is a need for further studies to replicate and extend these findings, but the initial results are consistent with the proposition that childhood adversity contributes to creating an enduring liability to negative emotional responses and, in some, psychosis-like experiences following exposure to daily hassles and stress. By extension, psychotic disorder may emerge in those exposed to early adversity as a consequence of ongoing exposure to problematic social contexts and experiences in adulthood. In sum, for all there are methodological limitations in the research to date (which to a degree reflect the inherent difficulties in studying social factors and the onset of psychosis), there is a growing and converging body of evidence that adverse social contexts and experiences over the life course are relevant to the aetiology of psychosis contexts and experiences, moreover, that may create a disjunction between the individual, others and the wider society (or what sociologists have conceptualized as anomie [35]). To paraphrase Jones et al. [94], early disadvantage can set in train a cascade of problematic social development, one consequence of which may be an increased risk of psychosis.

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15.8

MECHANISMS: (1) SENSITIZATION

In her poetic account of rural Irish life and the possible links between socialization processes, isolation, anomie and schizophenia, Scheper-Hughes [99] suggested that, ‘(w)rit large it [the development of schizophrenia] is the translation of social ills into private troubles’ (p. 305). In our somewhat more mechanical age, this begs the question of how, through what mechanisms, do social ills (e.g. fragmented environments, trauma, etc.) impact on individuals (or become embodied) to increase risk of such a rare set of private troubles (voices, delusions, thought disturbance, blunted affect, and so on)? Ironically, it is advances in genetics, neuroscience and psychology that suggest a number of plausible mechanisms, which (crucially) are consistent with what is known more generally about the genetic and biological basis of schizophrenia and other psychoses. One increasingly popular model of onset suggests that multiple genes of small effect create an enduring liability to psychotic disorder that becomes manifest, in the presence of further environmental insults (phy-

sical or social), perhaps through a final common pathway of dysregulation of the mesolimbic dopaminergic system [100,101]. With regard to socioenvironmental insults, much of the evidence above suggests that it is cumulative exposure to adverse social contexts and experiences over time, particularly during development, that increases risk of psychosis. This suggests that such exposures may operate through a process of sensitization, in which repeated exposure progressively increases behavioural, psychological and biological responses to further stresses (even where these are relatively mild, e.g. daily hassles), with a consequent increased risk of psychosis-like experiences and, in some, psychotic disorder [6,8]. This is also consistent with evidence that much more common psychosis-like experiences are associated with similar, but fewer and milder, social adversities [22]. In other words, exposure to cumulative adversity over time may push some individuals along a continuum, through affective responses and psychosis-like experiences, to psychotic disorder.

15.9 MECHANISMS: (2) DOPAMINE AND THE HYPOTHALAMIC–PITUITARY–ADRENAL AXIS Importantly, there is emerging (indirect) evidence that such exposures may plausibly link to psychosis through sensitization of the dopaminergic system [6,101] and dysregulation of the hypothalamic pituitary adrenal (HPA) axis [102] (both of which are implicated in psychosis [100,103]). To begin with, there is some evidence that stress is associated with dopamine release in humans and animals [8]. More specifically, there is accumulating evidence from animal studies that negative and threatening events (e.g. maternal deprivation in neonatal rats [104] and ‘social defeat’ in mice [105]) can produce dopaminergic hyperactivity in the mesocorticolimbic system, and that prolonged exposure to such aversive environments can lead to sensitization of this system. For example, rodents exposed to ‘social defeat’ or subordination show increased levels of dopamine in the nucleus acumbens and preforontal cortex [106]; subsequent

isolation of subordinated rodents is associated with persistence of changes in the dopaminergic system [107]. Similar findings have been reported in studies of macaque monkeys [108]. There is some tentative evidence of similar processes in humans from a single study that found, in a sample of 10 students, that the effect of psychosocial stress on mesolimbic dopamine release was dependent on early life maternal care [109]. Further, elevated dopamine metabolism has been found in girls who have been sexually abused compared with nonabused controls [110]. Interest in the possible role of the HPA axis is more recent, and stems from evidence of dysregulation of this system in those with psychosis [8]. In the most recent formulation of their neural-stress diathesis model of schizophrenia, Walker, Mittal and Tessner [102] speculate that dysregulation of the HPA axis may ‘trigger a cascade of events resulting in

THE SOCIODEVELOPMENTAL ORIGINS OF PSYCHOSIS

neural circuit dysfunction, including alterations in dopamine signalling’ (van Winkel and Stefanis [8], p. 1097). Of particular relevance here is further evidence that exposure to stress, particularly childhood trauma, is associated with alterations in HPA axis function [111,112]. These findings are the basis for the traumagenic model of psychosis proposed by Read and colleagues [69,113]. These mechanisms of course remain largely hypothetical, and there is a need for caution. For example, on the basis of the evidence from animal studies above, Jean-Paul Selten and Elizabeth CantorGraae [114] have hypothesized that it is exposure to chronic discrimination and ‘social defeat’ that is the unifying experience underpinning the high rates of psychosis in migrant and minority ethnic populations.

15.10

205

As appealing as this hypothesis is, it is doubtful that the range of adversities that appear relevant over the life course can be so readily collapsed into a single exposure. In humans, moreover, the kinds of experiences that might comprise social defeat (entrapment, loss, humiliation) have been more consistently linked with depression. In contrast, exposure to intrusive and anxiety-provoking events and contexts may be particularly relevant to psychosis not a state of defeat and learned helplessness, but a state of disillusion with and heightened sensitivity to the external environment and its perceived hazards. This reminds us that, while animal research can provide clues, we need to be cautious in borrowing terminology and applying findings to humans. There is much that can be lost in translation.

MECHANISMS: (3) GENE–ENVIRONMENT INTERACTION

It remains that not all individuals exposed even to prolonged and cumulative traumas and adversity develop a psychotic disorder; vulnerability varies. This susceptibility may be linked to genotype [7,8]. There has been considerable interest in potential gene environment interactions in psychosis, with some interesting initial findings [7]. Two types of gene environment interaction can be specified: (1) in which genotype moderates sensitivity to the environment, such that individuals differ in their response to environmental exposure dependent on genotype; and (2) in which the environment impacts on gene expression, through effects on DNA sequence (i.e. causing de novo mutations) and methylation (i.e. causing altered gene expression through epimutations) [7]. In relation to this latter possibility, there is no direct evidence for psychosis, but there is research to suggest this is a plausible potential mechanism that could, in part at least, account for the impact of social experience on risk of psychosis. A series of animal experiments, for example, have found that maternal behaviour in rats (pup licking and grooming; arched-back nursing) can affect stress responses in offspring through DNA methylation of relevant genes [115,116], raising the intriguing possibility that

exposure to stress in humans early in life may impact on risk for later disorder by altering gene expression. Where gene environment interactions have been investigated, these have been based on statistical models of interaction between a putative environmental factor and a proxy genetic marker or specific genotype. For example, Caspi et al. [117], in an analysis of data from the Dunedin longitudinal study of a representative birth cohort, showed that a functional polymorphism in the promoter region of the serotonin transporter (5-HT T) gene moderated the influence of stressful life events on depression. Individuals with one or two copies of the short allele of the 5-HT T promoter polymorphism exhibited more depressive symptoms, diagnosable depression and suicidality when exposed to stressful life events than individuals homozygous for the long allele. This may help explain why only some of those exposed to stressful life events develop depressive symptoms (i.e. the first type of interaction noted above, where responses to stress are moderated by genotype). There is similar evidence concerning cannabis use and the catechol-O-methyl-transferese (COMT) gene, such that risk of psychosis for those who use cannabis appears to vary as a function of COMT risk is highest

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for those with one or two copies of the Valine (Val) allele compared with those homozygous for the Methionine (Met) allele [118]. The evidence for socioenvironmental exposures is limited. In one of the few studies to investigate this, Stefanis et al. [119] found that significant life stress (in this case, induction into the Greek army) was associated with the occurrence of psychotic symptoms; this association was strongest in those with either the Val/Met or Val/Val allele, as opposed to the Met/Met allele. What is particularly noteworthy here is that COMT encodes a key enzyme that metabolizes dopamine in the frontal cortex. Additional, but less specific, evidence comes from family and adoption studies that have found adopted-away offspring of mothers with psychosis are at highest risk when brought up in home contexts that score highly on ‘critical/conflictual’, ‘constricted’ and ‘boundary problem’ scales [62,120]. Further, there is evidence from population-based research in the Netherlands that the urban effect is

15.11

dependent on pre-existing indicators of genetic risk for psychosis [121]. This line of research is not, however, without limitations. A recent meta-analysis of studies of the serotonin transporter gene (5-HT T), life events and depression failed to find evidence of gene environment interaction [122], and others have questioned whether such studies can provide additional insights (Stanley Zammit’s ‘Genes  environment’ presentation at the UK Mental Health Research Network Conference, Nottingham, 2009). A key consideration here is that statistical interaction does not necessarily equate with biological interaction, and the processes underlying the interaction effects so far observed are unclear. Evidently, the most significant advances are likely to be achieved where the underlying processes can be identified, which is what makes interactions with COMT (because of its role in dopamine metabolism) a potentially important line of investigation.

MECHANISMS: (4) COGNITION AND EMOTION

In recent years, there has been a rapid development of cognitive models of psychosis that tend to focus on specific symptoms (e.g. hallucinations, delusions) rather than diagnostic categories and which posit a key role for affective and cognitive biases in symptom formation [10,12,123,124]. In these models, initial vulnerability (which may stem from genetic, neurodevelopmental or social processes) is expressed through a number of affective and cognitive biases (e.g. a tendency to jump to conclusions, an external locus of control, deficits in source monitoring); these tendencies in turn increase the risk of symptom formation in response to subsequent stresses and troubling experiences (e.g. exposure to threat may result in tendencies to attribute misfortune to external causes and hypersensitivity to the environment, which if continued over time may increase the risk of suspiciousness, paranoia and, ultimately, delusion formation). There is now a significant body of evidence to support this broad model in relation to a number of symptoms [123]. Such models are compatible with neurobiological research [9], in that cognitive and

affective biases may develop particularly in those who are susceptible due to underlying genetic or neurodevelopmental factors. Interestingly, there is tentative evidence for such models in relation to black Caribbeans in the UK [125] and, related to this, there is some evidence that delusions of persecution and reference are more common in the black Caribbean and other minority ethnic groups [126]. In introducing cognitive schema, these models provide a meaningful account of how hostile environments and resulting anomie may link to, say, delusion formation. In short, these models are genuinely biopsychosocial, providing explanatory mechanisms at the level of symptom formation that incorporate findings from genetics, neuroscience and social epidemiology [11,12]. One such model is shown in Figure 15.2 [11]. To reiterate, on the basis of the evidence reviewed above, there is increasing evidence that exposure to adverse social contexts and experiences over the life course is crucial both in conferring vulnerability and in the transformation of vulnerability into disorder. In other words, aberrant social development arising from

THE SOCIODEVELOPMENTAL ORIGINS OF PSYCHOSIS

207

Intrusive Event Lack normalising social experiences

Self-protective social withdrawal Behavioural Cannabis & other “mind altering” exposure

Biological

Faulty Source Monitoring

External locus of control

External attribution bias

Event Salience

Psychological

Hypervigilance ‘Hostile World’

HPA axis / Dopamine Dysregulation

Symptom Formation

Figure 15.2 Childhood trauma and psychosis an integrated model (Reproduced from Fisher H, Craig T. Childhood adversity and psychosis. In: Morgan C, ed. Society and Psychosis. Cambridge: Cambridge University Press; 2008:95 111.)

cumulative adversities (that impact on brain development and cognitive and affective processes) may be

15.12

one (but by no means the only) critical pathway to the formation and expression of psychosis.

SOCIAL DISORDER

Our focus here has been on aetiology, on the emergence of psychotic disorder. However, just as social ills, to borrow Scheper-Hughes’ [99] words, find expression in the private troubles of psychosis, so this private turmoil reverberates back outwards to shape the local social and moral worlds of the sufferer both by affecting the individual’s capacity to interact with the social environment and through the negative and stigmatizing responses of others [127]. There is substantial evidence that continued exposure to social difficulties (limited social networks, unemployment, problematic family relationships, stigma and discrimination) worsens the course and outcome of disorder. This evidence is reviewed extensively elsewhere in this book (see Chapters 26 and 31). The crucial point here is that the social environment, broadly construed, is central

to the development and persistence of psychosis; in many respects it is a social (and mental) disorder, an intense form of social suffering [128], affecting the susceptible, that is felt in the challenge, both before and after onset, of navigating and engaging with a frequently hostile social world a hostility more frequently encountered as a consequence of living in urban centres, of being an outsider, of living in poverty. Such a formulation has significant implications for prevention and intervention; it focuses attention, broadly, on modifying aspects of the social environment (especially for those groups most at risk) and on intervening to promote social reintegration for those with a disorder. This is not to negate the utility of psychotropic medication and symptom reduction; it is to highlight the centrality of individuals’ social lives in recovery.

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15.13

CONCLUSION

There remain those who are sceptical that socioenvironmental factors are of any significance in the aetiology of psychosis (e.g. see References [15] and [129]). Some of the associations observed between social factors and psychosis may be a function of the fact that they increase exposure to other factors that impact directly on risk (e.g. substance use [101]). At this stage, it is reasonable to acknowledge that there is still sufficient uncertainty and ambiguity in the available evidence that any all-embracing or dogmatic claims concerning the origins of psychosis will be premature and ultimately unhelpful. The model we propose here, based on a specific reading of the literature of, among others, a sociodevelopmental trajectory is consequently tentative, involves speculation beyond the evidence and no doubt requires much further empirical testing. Herein lies the challenge. We began this chapter by noting two specific problems that have undermined efforts to investigate the relationship between aspects of the social environment and psychosis: direction of causation and mechanisms. The recent upsurge of interest in social factors has, in part, been fuelled by research that has disentangled cause and effect for some exposures (e.g. urbanicity) and by research providing plausible and, to some extent, evidenced mechanisms that link experience and psychosis. These findings need replication and extension, and exciting work is already underway (e.g. gene environment interactions; quasi-experimental designs; effects of social experiences on stress responsivity, brain structure and function). The promise is that this will generate knowledge about areas in which we can intervene to interrupt problematic social development and prevent onset and continued suffering, at least for some. After all, it is surely this that drives all research into these devastating disorders.

3.

4. 5.

6.

7.

8.

9.

10.

11.

12.

REFERENCES 1. Andreasen, N. (2000) Schizophrenia: the fundamental questions. Brain Research Reviews, 31, 106 112. 2. Krabbendam, L. and van Os, J. (2005) Schizophrenia and urbanicity: a major environmental influence

13. 14.

conditional on genetic risk. Schizophrenia Bulletin, 31 (4), 795 799. Morgan, C. and Fisher, H. (2007) Environment and schizophrenia: environmental factors in schizophre nia: childhood trauma a critical review. Schizophre nia Bulletin, 33 (1), 3 10. Morgan, C., McKenzie, K. and Fearon, P. (2008) Society and Psychosis, Cambridge University Press, Cambridge. Kendler, K. S., Neale, M. C., Kessler, R. C. et al. (1992) Childhood parental loss and adult psychopathology in women a twin study perspective. Archives of General Psychiatry, 49 (2), 109 116. Collip, D., Myin Germeys, I. and Van Os, J. (2008) Does the concept of ‘sensitization’ provide a plausible mechanism for the putative link between the environ ment and schizophrenia? Schizophrenia Bulletin, 34 (2), 220 225. van Os, J., Rutten, B. P. and Poulton, R. (2008) Gene environment interactions in schizophrenia: review of epidemiological findings and future direc tions. Schizophrenia Bulletin, 34 (6), 1066 1082. van Winkel, R. and Stefanis, N. C. (2008) Myin Germeys I. Psychosocial stress and psychosis. A re view of the neurobiological mechanisms and the evi dence for gene stress interaction. Schizophrenia Bul letin, 34 (6), 1095 1105. Garety, P. A., Bebbington, P., Fowler, D. et al. (2007) Implications for neurobiological research of cognitive models of psychosis: a theoretical paper. Psychologi cal Medicine, 37 (10), 1377 1391. Garety, P. A., Kuipers, E., Fowler, D. et al. (2001) A cognitive model of the positive symptoms of psycho sis. Psychological Medicine, 31 (2), 189 195. Fisher, H. and Craig, T. (2008) Childhood adversity and psychosis, in Society and Psychosis (eds. C. Morgan, K. McKenzie and P. Fearon), Cambridge University Press, Cambridge, pp. 95 111. Bebbington, P., Fowler, D., Garety, P. et al. (2008) Theories of cognition, emotion and the social world: missing links in psychosis, in Society and Psychosis (eds C. Morgan, K. McKenzie and P. Fearon), Cam bridge University Press, Cambridge, pp. 219 237. WHO (1974) Schizophrenia: A Multinational Study, World Health Organization, Geneva. Jablensky, A., Sartorius, N., Ernberg, G. et al. (1992) Schizophrenia: manifestations, incidence and course

THE SOCIODEVELOPMENTAL ORIGINS OF PSYCHOSIS

15.

16.

17.

18.

19.

20.

21.

22.

23.

24.

25.

26.

in different cultures: a World Health Organization ten country study. Psychological Medicine, 20 (suppl. 20), 1 97. Crow, T. (2000) Schizophrenia as the price that Homo sapiens pays for language: a resolution of the central paradox in the origin of the species. Brain Research Reviews, 31, 118 129. Crow, T. J. (2007) How and why genetic linkage has not solved the problem of psychosis: review and hypoth esis. American Journal of Psychiatry, 164 (1), 13 21. Cantor Graae, E. and Selten, J. P. (2005) Schizophre nia and migration: a meta analysis and review. Amer ican Journal of Psychiatry, 162, 12 24. McGrath, J., Saha, S., Welham, J. et al. (2004) A systematic review of the incidence of schizophrenia: the distribution of rates and the influence of sex, urbanicity, migrant status and methodology. BMC Medical, 2 (1), 13. Kleinman, A. (1991) Rethinking Psychiatry: From Cultural Category to Personal Experience, The Free Press, New York. McGrath, J. J. (2007) The surprisingly rich contours of schizophrenia epidemiology. Archives of General Psy chiatry, 64 (1), 14 16. Verdoux, H. and van Os, J. (2002) Psychotic symptoms in non clinical populations and the continuum of psychosis. Schizophrenia Research, 54 (1 2), 59 65. van Os, J., Linscott, R. J., Myin Germeys, I. et al. (2009) A systematic review and meta analysis of the psychosis continuum: evidence for a psychosis proneness persistence impairment model of psycho tic disorder. Psychological Medicine, 39 (2), 179 195. Dutta, R., Greene, T., Addington, J. et al. (2007) Biological, life course, and cross cultural studies all point toward the value of dimensional and develop mental ratings in the classification of psychosis. Schi zophrenia Bulletin, 33 (4), 868 876. Spauwen, J., Krabbendam, L., Lieb, R. et al. (2004) Does urbanicity shift the population expression of psychosis? Journal of Psychiatric Research, 38 (6), 613 618. Morgan, C., Fisher, H., Hutchinson, G. et al. (2009) Ethnicity, social disadvantage and psychotic like ex periences in a healthy population based sample. Acta Psychiatrica Scandinavica, 119 (3), 226 235. Morgan, C., Kirkbride, J., Leff, J. et al. (2007) Parental separation, loss and psychosis in different ethnic groups: a case control study. Psychological Medicine, 37 (4), 495 503.

209

27. Pedersen, C. B. and Mortensen, P. B. (2006) Urbanicity during upbringing and bipolar affective disorders in Denmark. Bipolar Disorders, 8, 242 247. 28. Pedersen, C. B. and Mortensen, P. B. (2001) Evidence of a dose response relationship between urbanicity during upbringing and schizophrenia risk. Archives of General Psychiatry, 58 (11), 1039 1046. 29. Marcelis, M., Navarro Mateu, F., Murray, R. et al. (1998) Urbanization and psychosis: a study of 1942 1978 birth cohorts in The Netherlands. Psycho logical Medicine, 28 (4), 871 879. 30. McGrath, J. and Scott, J. (2006) Urban birth and risk of schizophrenia: a worrying example of epidemiology where the data are stronger than the hypotheses. Epidemiologia e Psichiatria Sociale, 15, 243 246. 31. Faris, R. and Dunham, H. (1939) Mental Disorders in Urban Areas, University of Chicago Press, Chicago, Illinois. 32. Hare, E. (1956) Mental illness and social conditions in Bristol. Journal of Mental Science, 102, 349 357. 33. Durkheim, E. (1952) Suicide, The Free Press, Glencoe, Illinois. 34. Merton, R. K. (1938) Social structure and anomie. American Sociological Review, 3, 672 682. 35. Deflam, M. (2007) Anomie, in The Blackwell Ency clopedia of Sociology (ed. G. Ritzer), Blackwell Pub lishing, Oxford. 36. Allardyce, J. and Boydell, J. (2006) Review: the wider social environment and schizophrenia. Schizophrenia Bulletin, 32 (4), 592 598. 37. Boydell, J., van Os, J., McKenzie, K. and Murray, R. M. (2004) The association of inequality with the incidence of schizophrenia an ecological study. Social Psychiatry and Psychiatric Epidemiology, 39 (8), 597 599. 38. Allardyce, J., Gilmour, H., Atkinson, J. et al. (2005) Social fragmentation, deprivation and urbanicity: re lation to first admission rates for psychoses. British Journal of Psychiatry, 187, 401 406. 39. Kirkbride, J. B., Fearon, P., Morgan, C. et al. (2006) Heterogeneity in incidence rates of schizophrenia and other psychotic syndromes: findings from the 3 center ÆSOP study. Archives of General Psychiatry, 63 (3), 250 258. 40. Kirkbride, J. B., Morgan, C., Fearon, P. et al. (2007) Neighbourhood level effects on psychoses: re examining the role of context. Psychological Medicine, 37 (10), 1413 1425.

210

SOCIAL DETERMINANTS

41. Kirkbride, J. B., Boydell, J., Ploubidis, G. B. et al. (2008) Testing the association between the incidence of schizophrenia and social capital in an urban area. Psychological Medicine, 38 (8), 1083 1094. 42. van Os, J., Driessen, G., Gunther, N. and Delespaul, P. (2000) Neighbourhood variation in incidence of schi zophrenia. Evidence for person environment interac tion. British Journal of Psychiatry, 176, 243 248. 43. McGrath, J., El Saadi, O., Cardy, S. et al. (2001) Urban birth and migrant status as risk factors for psychosis: an Australian case control study. Social Psychiatry and Psychiatric Epidemiology, 36 (11), 533 536. 44. Fearon, P. and Morgan, C. (2006) Environmental factors in schizophrenia: the role of migrant studies. Schizophrenia Bulletin, 32 (3), 405 408. 45. Kirkbride, J. B., Barker, D., Cowden, F. et al. (2008) Psychoses, ethnicity and socio economic status. Brit ish Journal of Psychiatry, 193 (1), 18 24. 46. Bresnahan, M., Begg, M. D., Brown, A. et al. (2007) Race and risk of schizophrenia in a US birth cohort: another example of health disparity? International Journal of Epidemiology, 36 (4), 751 758. 47. Fearon, P., Kirkbride, J. B., Morgan, C. et al. (2006) Incidence of schizophrenia and other psychoses in ethnic minority groups: results from the MRC ÆSOP Study. Psychological Medicine, 36 (11), 1541 1550. 48. Morgan, C. and Hutchinson, G. (in press) The social determinants of psychosis in migrant and ethnic min ority populations: a public health tragedy. Psycholo gical Medicine, 1 5. 49. Hickling, F. W., McKenzie, K., Mullen, R. and Murray, R. (1999) A Jamaican psychiatrist evaluates diagnoses at a London psychiatric hospital. British Journal of Psychiatry, 175, 283 285. 50. Veling, W., Selten, J. P., Veen, N. et al. (2006) In cidence of schizophrenia among ethnic minorities in the Netherlands: a four year first contact study. Schi zophrenia Research, 86 (1 3), 189 193. 51. Sharpley, M., Hutchinson, G., McKenzie, K. and Murray, R. (2001) Understanding the excess of psy chosis among the African Caribbean population in England. British Journal of Psychiatry, 178 (suppl. 40), s60 s68. 52. McKenzie, K., Fearon, P. and Hutchinson, G. (2008) Migration, ethnicity and psychosis, in Society and Psychosis (eds C. M. Morgan, K. McKenzie and P. Fearon), Cambridge University Press, Cambridge.

53. Cooper, B. (2005) Immigration and schizophrenia: the social causation hypothesis revisited. British Journal of Psychiatry, 186, 361 363. 54. Bhugra, D., Hilwig, M., Hossein, B. et al. (1996) First contact incidence rates of schizophrenia in Trinidad and one year follow up. British Journal of Psychiatry, 169, 587 592. 55. Hickling, F. and Rodgers Johnson, P. (1995) The in cidence of first contact schizophrenia in Jamaica. British Journal of Psychiatry, 167, 193 196. 56. Mahy, G., Mallett, R., Leff, J. and Bhugra, D. (1999) First contact incidence of schizophrenia in Barbados. British Journal of Psychiatry, 175, 28 33. 57. Boydell, J., van Os, J., McKenzie, K. et al. (2001) Incidence of schizophrenia in ethnic minorities in London: ecological study into interactions with envir onment. British Medical Journal, 323, 1336 1338. 58. Veling, W., Susser, E., van Os, J. et al. (2008) Ethnic density of neighborhoods and incidence of psychotic disorders among immigrants. The American Journal of Psychiatry, 165 (1), 66 73. 59. Veling, W., Hoek, H. W. and Mackenbach, J. P. (2008) Perceived discrimination and the risk of schizophrenia in ethnic minorities: a case control study. Social Psy chiatry and Psychiatric Epidemiology, 43 (12), 953 959. 60. Dean, K., Dazzan, P., Lloyd, T. et al. (2007) Minor physical anomalies across ethnic groups in a first episode psychosis sample. Schizophrenia Research, 89 (1 3), 86 90. 61. Morgan, C., Kirkbride, J., Hutchinson, G. et al. (2008) Cumulative social disadvantage, ethnicity and first episode psychosis: a case control study. Psychological Medicine, 38 (12), 1701 1715. 62. Tienari, P. and Wahlberg, K. (2008) Family environ ment and psychosis, in Society and Psychosis (eds C. Morgan, K. McKenzie and P. Fearon), Cambridge University Press, Cambridge, pp. 112 126. 63. Read, J., Seymour, F. and Mosher, L. (2004) Unhappy families, in Models of Madness (eds J. Read, L. Mosher and R. Bentall), Brunner Routledge, East Sussex, pp. 253 268. 64. Fromm Reichmann, F. (1948) Notes on the develop ment of treatment of schizophrenics by psycho ana lytic psychotherapy. Psychiatry, 11, 263 273. 65. Bateson, G., Jackson, D., Haley, J. and Weakland, J. (1956) Toward a theory of schizophrenia. Behavioural Science, 1, 251 264.

THE SOCIODEVELOPMENTAL ORIGINS OF PSYCHOSIS

66. Lainge, R. D. and Esterson, D. (1964) Sanity, Madness and the Family, Basic Books, New York. 67. Hirsch, S. and Leff, J. (1975) Abnormalities in the Parents of Schizophrenics, Oxford University Press, Oxford. 68. Kavanagh, N. (1992) Recent developments in ex pressed emotion and schizophrenia. British Journal of Psychiatry, 160, 601 620. 69. Read, J., van Os, J., Morrison, A. P. and Ross, C. A. (2005) Childhood trauma, psychosis and schizophre nia: a literature review with theoretical and clinical implications. Acta Psychiatrica Scandinavica, 112 (5), 330 350. 70. Bendall, S., Jackson, H. J., Hulbert, C. A. and McGor ry, P. D. (2008) Childhood trauma and psychotic disorders: a systematic, critical review of the evidence. Schizophrenia Bulletin, 34 (3), 568 579. 71. Jannsen, I., Krabbendam, L., Bak, M. et al. (2004) Childhood abuse as a risk factor for psychosis. Acta Psychiatrica Scandinavica, 109, 38 45. 72. Whitfield, C. L., Dube, S. R., Felitti, V. J. and Anda, R. F. (2005) Adverse childhood experiences and halluci nations. Child Abuse and Neglect, 29, 797 810. 73. Read, J., Agar, K., Argyle, N. and Aderhold, V. (2003) Sexual and physical assault during childhood and adulthood as predictors of hallucinations, delusions and thought disorder. Psychology and Psychotherapy: Theory, Research and Practice, 76, 1 22. 74. Hammersley, P., Dias, A., Todd, G. et al. (2003) Child hood traumas and hallucinations in bipolar affective disorder. British Journal of Psychiatry, 182, 543 547. 75. Morrison, A. and Petersen, T. (2003) Trauma and metacognition as predictors of predisposition to hal lucinations. Behavioural and Cognitive Psychother apy, 31, 235 246. 76. Kelleher, I., Harley, M., Lynch, F. et al. (2008) Associa tions between childhood trauma, bullying and psychotic symptoms among a school based adolescent sample. British Journal of Psychiatry, 193 (5), 378 382. 77. Spauwen, J., Krabbendam, L., Lieb, R. et al. (2006) Impact of psychological trauma on the development of psychotic symptoms: relationship with psychosis proneness. British Journal of Psychiatry, 188, 527 533. 78. Bebbington, P., Bhugra, D., Singleton, N. et al. (2004) Psychosis, victimisation and childhood disadvantage: evidence from the second British National Survey of Psychiatric Morbidity. British Journal of Psychiatry, 185, 220 226.

211

79. Shevlin, M., Houston, J. E., Dorahy, M. J. and Adam son, G. (2008) Cumulative traumas and psychosis: an analysis of the national comorbidity survey and the British Psychiatric Morbidity Survey. Schizophrenia Bulletin, 34 (1), 193 199. 80. Spataro, J., Mullen, P. E., Burgess, P. M. et al. (2004) Impact of child sexual abuse on mental health: pro spective study in males and females. British Journal of Psychiatry, 184, 416 421. 81. Fisher, H., Morgan, C., Dazzan, P. et al. (2009) Gender differences in the association between childhood abuse and psychosis. British Journal of Psychiatry, 194 (4), 319 325. 82. Wicks, S., Hjern, A., Gunnell, D. et al. (2005) Social adversity in childhood and the risk of developing psychosis: a national cohort study. American Journal of Psychiatry, 162, 1652 1657. 83. Agid, O., Shapira, B., Zislin, J. et al. (1999) Environ ment and vulnerability to major psychiatric illness: a case control study of early parental loss in major depression, bipolar disorder and schizophrenia. Mo lecular Psychiatry, 4 (2), 163 172. 84. Mulvany, F., O’Callaghan, E., Takei, N. et al. (2001) Effect of social class at birth on risk and presentation of schizophrenia: case control study. British Medical Journal, 323 (7326), 1398 1401. 85. Harrison, G., Gunnell, D., Glazebrook, C. et al. (2001) Association between schizophrenia and social in equality at birth: case control study. British Journal of Psychiatry, 179, 346 350. 86. Fallon, P. (2008) Life events; their role in onset and relapse in psychosis, research utilizing semi structured interview methods: a literature review. Journal of Psychiatric and Mental Health Nursing, 15 (5), 386 392. 87. Norman, R. M. and Malla, A. K. (1993) Stressful life events and schizophrenia. I: A review of the research. British Journal of Psychiatry, 162, 161 166. 88. Bebbington, P., Wilkins, S., Jones, P. et al. (1993) Life events and psychosis. Initial results from the Camber well Collaborative Psychosis Study. British Journal of Psychiatry, 162, 72 79. 89. Malla, A. K., Cortese, L., Shaw, T. S. and Ginsberg, B. (1990) Life events and relapse in schizophrenia. A one year prospective study. Social Psychiatry and Psy chiatric Epidemiology, 25 (4), 221 224. 90. Johns, L. C., Cannon, M., Singleton, N. et al. (2004) Prevalence and correlates of self reported psychotic

212

91.

92.

93.

94.

95. 96.

97.

98.

99.

100.

101.

102.

SOCIAL DETERMINANTS

symptoms in the British population. British Journal of Psychiatry, 185, 298 305. Wiles, N. J., Zammit, S., Bebbington, P. et al. (2006) Self reported psychotic symptoms in the general po pulation: results from the longitudinal study of the British National Psychiatric Morbidity Survey. British Journal of Psychiatry, 188, 519 526. Jones, P. B., Bebbington, P., Foerster, A. et al. (1993) Premorbid social underachievement in schizophrenia. Results from the Camberwell Collaborative Psychosis Study. British Journal of Psychiatry, 162, 65 71. Kendler, K. S. and Baker, J. H. (2007) Genetic influ ences on measures of the environment: a systematic review. Psychological Medicine, 37 (5), 615 626. Jones, P., Rodgers, B., Murray, R. and Marmot, M. (1994) Child development risk factors for adult schi zophrenia in the British 1946 birth cohort. Lancet, 344 (8934), 1398 1402. Selten, J. P. and Cantor Graae, E. (in press) The denial of a psychosis epidemic. Psychological Medicine, 1 3. Myin Germeys, I. and van Os, J. (2008) Adult adver sity: do early environment and genotype create lasting vulnerability for adult social adversity in psychosis?, in Society and Psychosis (eds C. Morgan, K. McKenzie and P. Fearon), Cambridge University Press, Cam bridge, pp. 127 142. Glaser, J. P., van Os, J., Portegijs, P. J. and Myin Germeys, I. (2006) Childhood trauma and emotional reactivity to daily life stress in adult frequent attenders of general practitioners. Journal of Psychosomatic Research, 61 (2), 229 236. Myin Germeys, I., van Os, J., Schwartz, J. E. et al. (2001) Emotional reactivity to daily life stress in psychosis. Archives of General Psychiatry, 58 (12), 1137 1144. Scheper Hughes, N. (2001) Saints, Scholars and Schi zophrenics: Mental Illness in Rural Ireland, Twentieth Anniversary Edition, University of California Press, Los Angeles, California. Howes, O. D. and Kapur, S. (2009) The dopamine hypothesis of schizophrenia: version III the final com mon pathway. Schizophrenia Bulletin, 35 (3), 549 562. Di Forti, M., Lappin, J. M. and Murray, R. M. (2007) Risk factors for schizophrenia all roads lead to dopamine. European Neuropsychopharmacology, 17 (suppl. 2), S101 S107. Walker, E., Mittal, V. and Tessner, K. (2008) Stress and the hypothalamic pituitary adrenal axis in the devel

103.

104.

105.

106.

107.

108.

109.

110.

111.

112.

113.

opmental course of schizophrenia. Annual Review of Clinical Psychology, 4, 189 216. Pariante, C. M., Vassilopoulou, K., Velakoulis, D. et al. (2004) Pituitary volume in psychosis. British Journal of Psychiatry, 185, 5 10. Hall, F. S., Wilkinson, L. S., Humby, T. and Robbins, T. W. (1999) Maternal deprivation of neonatal rats pro duces enduring changes in dopamine function. Sy napse, 32 (1), 37 43. Berton, O., McClung, C. A., Dileone, R. J. et al. (2006) Essential role of BDNF in the mesolimbic dopamine pathway in social defeat stress. Science, 311 (5762), 864 868. Tidey, J. W. and Miczek, K. A. (1996) Social defeat stress selectively alters mesocorticolimbic dopamine release: an in vivo microdialysis study. Brain Re search, 721 (1 2), 140 149. Isovich, E., Engelmann, M., Landgraf, R. and Fuchs, E. (2001) Social isolation after a single defeat reduces striatal dopamine transporter binding in rats. Eur opean Journal of Neuroscience, 13 (6), 1254 1256. Morgan, D., Grant, K. A., Gage, H. D. et al. (2002) Social dominance in monkeys: dopamine D2 receptors and cocaine self administration. Nature Neu roscience, 5 (2), 169 174. Pruessner, J. C., Champagne, F., Meaney, M. J. and Dagher, A. (2004) Dopamine release in response to a psychological stress in humans and its relationship to early life maternal care: a positron emission tomogra phy study using [11C]raclopride. Journal of Neu roscience, 24 (11), 2825 2831. De Bellis, M. D., Lefter, L., Trickett, P. K. and PutnamJr, F. W. (1994) Urinary catecholamine excre tion in sexually abused girls. Journal of the American Academy of Child and Adolescent Psychiatry, 33 (3), 320 327. Heim, C., Newport, D. J., Heit, S. et al. (2000) Pituitary adrenal and autonomic responses to stress in women after sexual and physical abuse in child hood. Journal of the American Medical Association, 284 (5), 592 597. De Bellis, M. D., Chrousos, G. P., Dorn, L. D. et al. (1994) Hypothalamic pituitary adrenal axis dysregu lation in sexually abused girls. Journal of Clinical Endocrinology and Metabolism, 78 (2), 249 255. Morrison, A., Read, J. and Turkington, D. (2005) Trauma and psychosis: theoretical and clinical implications. Acta Psychiatrica Scandinavica, 112 (5), 327 329.

THE SOCIODEVELOPMENTAL ORIGINS OF PSYCHOSIS

114. Selten, J. P. and Cantor Graae, E. (2005) Social defeat: risk factor for schizophrenia? British Journal of Psy chiatry, 187, 101 102. 115. Weaver, I. C., Cervoni, N., Champagne, F. A. et al. (2004) Epigenetic programming by maternal behavior. Nature Neuroscience, 7 (8), 847 854. 116. Meaney, M. J. and Szyf, M. (2005) Environmental programming of stress responses through DNA methy lation: life at the interface between a dynamic envir onment and a fixed genome. Dialogues in Clinical NeuroSciences, 7 (2), 103 123. 117. Caspi, A., Sugden, K., Moffitt, T. E. et al. (2003) Influence of life stress on depression: moderation by a polymorphism in the 5 HTT gene. Science, 301 (5631), 386 389. 118. Caspi, A., Moffitt, T. E., Cannon, M. et al. (2005) Moderation of the effect of adolescent onset cannabis use on adult psychosis by a functional polymorphism in the catechol O methyltransferase gene: longitudi nal evidence of a gene X environment interaction. Biological Psychiatry, 57 (10), 1117 1127. 119. Stefanis, N. C., Henquet, C., Avramopoulos, D. et al. (2007) COMT Val158Met moderation of stress in duced psychosis. Psychological Medicine, 37 (11), 1651 1656. 120. Tienari, P., Wynne, L. C., Sorri, A. et al. (2004) Genotype environment interaction in schizophrenia spectrum disorder. British Journal of Psychiatry, 184, 216 222. 121. van Os, J., Hanssen, M., Bak, M. et al. (2003) Do urbanicity and familial liability coparticipate in caus

122.

123.

124.

125.

126.

127.

128.

129.

213

ing psychosis? American Journal of Psychiatry, 160 (3), 477 482. Risch, N., Herrell, R., Lehner, T. et al. (2009) Inter action between the serotonin transporter gene (5 HTTLPR), stressful life events, and risk of depression: a meta analysis. Journal of the American Medical Association, 301 (23), 2462 2471. Bentall, R. P. and Fernyhough, C. (2008) Social pre dictors of psychotic experiences: specificity and psy chological mechanisms. Schizophrenia Bulletin, 34 (6), 1012 1020. Freeman, D., Garety, P. A. and Kuipers, E. (2001) Persecutory delusions: developing the understanding of belief maintenance and emotional distress. Psycho logical Medicine, 31 (7), 1293 1306. Sharpley, M. S. and Peters, E. R. (1999) Ethnicity, class and schizotypy. Social Psychiatry and Psychia tric Epidemiology, 34 (10), 507 512. Demjaha, A., Morgan, K., Morgan, C. et al. (2006) Symptom dimensions and ethnicity in the ÆSOP first onset psychosis study. Schizophrenia Research, 81, 233 1233. Thornicroft, G. (2006) Shunned: Discrimination Against People with Mental Illness, Oxford University Press, Oxford. Kleinman, A., Das, V. and Lock, M. (eds) (1997) Social Suffering, University of California Press, Los Angeles, California. Oh, G. and Petronis, A. (2008) Environmental studies of schizophrenia through the prism of epigenetics. Schizophrenia Bulletin, 34 (6), 1122 1129.

16 Depression Tom K. J. Craig Health Services and Population Research Department, Institute of Psychiatry, King' s College London, London, UK

16.1

INTRODUCTION

There are probably few psychiatrists now who doubt the central causal role played by the social environment in the onset and course of major depression. Metaanalyses of population surveys have consistently shown higher rates among the economically disadvantaged [1], those living in low status neighbourhoods [2] and with a low standard of living [3,4]. However, this effect of poverty is largely negated once account has been taken of social network size and quality [5]. Women are twice as likely as men to develop depression in adulthood and this increased risk is largely down to social factors. Marriage is protective for men but not for women, where it may even confer a higher risk [6]. Women take the main responsibility for child-rearing and this role is associated both with

16.2

increased stress and a higher incidence of depressive symptoms [7]. Women are twice as likely to develop depression than are their male partners following crises involving children, procreation or housing, while there is no difference in risk for other crises [8]. Considerable progress has been made in terms of moving beyond these broad associations towards detailed aetiological models that specify the kinds of experience and their interactions with wider social and biological vulnerabilities that are important for depression. This chapter draws together disparate strands of research based on the strongest current aetiological model for depression in women that owes much to three decades of work by Professor George Brown and colleagues.

MEASURING STRESSFUL EXPERIENCE

Establishing a causal relationship between stressful experience and depression requires instruments that can establish time order and capture the essence of the ‘depressogenic’ experience. Without very careful attention, events that occurred shortly after an onset may be erroneously recalled as occurring before it, partly

because individuals reorder experiences in their struggle to make sense of why they became ill when they did. Similarly, events with little emotional impact when they occurred may, through the lens of a subsequent depression, be recalled as having been of far greater significance. These problems are mitigated by

Principles of Social Psychiatry, second edition Edited by Craig Morgan and Dinesh Bhugra Ó 2010 John Wiley & Sons, Ltd.

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using semi-structured interviews that pay close attention to time order and which distinguish experiences that may be the products of incipient illness, e.g. being dismissed from work because of poor time-keeping, from ‘independent’ events that are logically outside the control of the individual [9,10]. Pencil and paper questionnaires also do not deal very well with defining and assessing the different aspects of ‘stressfulness’ contained within any one type of experience. Simply asking a depressed participant to report their feelings in retrospect is clearly open to biases of recall and reappraisal. The impact of some experiences may be played down and others exaggerated and there is always the possibility that the crucial meaning of the experience is not even accessible to consciousness for example, a young woman expecting her first child but abandoned by her lover might well dwell on anxiety about her future and not report the extent to which she felt betrayed. An alternative to relying solely on self-report is to use the investigator to pass judgement on the likely meaning of the crisis, taking account of the context in which it occurred. This is possible because humans have the capacity to empathize and make reasonable

16.3 16.3.1

guesses about how others would feel in response to particular situations. The accuracy of these judgements is increased if the person doing the judging knows something of the other’s biography and the wider social context. So, for example, most people would agree that the emotional reaction to a positive pregnancy test is likely to be very different for a comfortably well-off woman in a stable partnership from that of a single mother on welfare benefits who has just been abandoned by her lover. That this contextual judgement will apply to most women in similar circumstances is sufficient for aetiological enquiry, despite the fact that a few may report a different reaction. This approach is the basis for the contextual measure of meaning used by the Life Events and Difficulties Schedule (LEDS) developed by Brown and Harris [9]. The measure distinguishes ‘events’ as discrete and datable experiences from ‘difficulties’ that can last for months or years without any discrete crisis. Ratings of a variety of qualitative dimensions of relevant experiences are made in consensus meetings by investigators who are ‘blind’ to the subject’s reported reaction (which is separately recorded but not discussed).

BUILDING AN AETIOLOGICAL MODEL

Events and difficulties

In the earlier studies [9] emphasis was placed on the importance of a broad notion of contextual ‘threat’ reflecting how unpleasant the average person in a similar context would find a particular event. Threat was rated in terms of the immediate impact (shortterm threat) and its more protracted implications some 10 14 days later (long-term threat). The first study to use this system of contextual measurement took place some 30 years ago in Camberwell, London [9]. For both patients and depressive cases in the community, the vast majority of onsets were preceded by the occurrence of experiences with long-term threat. Events with short-term threat only were of no aetiological importance. Only the most severe difficulties lasting for two or more years seemed to be important. Taken together, one or more of these severe events or difficulties had occurred prior to onset in more than

80% of the depressed women but only 30% of the healthy women in the general population. Since this study there have been numerous replications of the basic result [11 16]. A very important aspect of the rating of contextual threat is the assumption that the experiences most relevant for depression are those that disrupt relationships and goals to which the individual is committed. This was confirmed in a longitudinal study of working class women with at least one child at home living in Islington (a London borough). At baseline, measures were taken of the woman’s commitment to six key domains of her life including motherhood, employment and very close relationships. At follow-up a year later all severe events were rated according to whether they ‘matched’ one of the domains in which women had demonstrated high commitment at baseline. Women who experienced such a ‘matching’ severe event were three times more likely to develop depression

DEPRESSION

than women with nonmatching but equally severe events [15]. Cooper and Paykel [17], in the earlier edition of this book, point out that there is no evidence to suggest that life event stress as a causal agent is specific to depression but note that there may be some qualities of events that are more likely to lead to depression than others. Robert Finlay-Jones and Brown [18] refined the concept of threat to distinguish severe events characterized by ‘loss’ and ‘danger’. Loss was defined to include deaths, financial and material losses, and the loss of a ‘cherished idea’ (e.g. the loss of belief that one’s spouse is faithful following the discovery of his extramarital affair). Danger was defined as the threat of a future loss, which might occur as the result of the present event but was not inevitable (e.g. a professional dancer who following an injury is told by her doctor that it is possible that she may never dance again). Loss events were causally linked to the occurrence of depression and danger to anxiety with events characterized by both qualities more frequently reported by subjects who had symptoms of both conditions [18]. These findings have been replicated in subsequent studies [15,19]. Further results from the Islington study suggest that loss itself may not be the most important characteristic of stress involved in depression. Close attention to the qualitative descriptions of severe events suggested that many of those that preceded depression were characterized by humiliation or defeat and the sheer lack of any prospect that things might get better in the future. This observation chimes with speculations of some evolutionary theorists that depression has its origins in the experience of defeat, loss of rank and value, and submission, such as is seen in many groupliving species after being outranked by a rival or losing a battle to defend territorial boundaries [20 22]. This led to a refinement of the contextual rating system to classify severely threatening events further in terms of the experience of loss, humiliation and entrapment [16]. The category of humiliation involves the likelihood that the event would provoke a sense of being put down or lead to a marked loss of face or selfesteem and that of entrapment the extent to which the event emphasized the fact of being trapped in a punishing situation. Using these classifications, events involving humiliation or entrapment preceded the bulk of onsets of depression. Women experiencing

217

one of these events were three times more likely to develop depression than were women who experienced events characterized by loss alone. Furthermore, only losses involving death of a loved one really contributed, while events that did not involve humiliation, entrapment or loss were not significantly associated with onset. These observations were replicated by Kendler and colleagues [23] in a study of 7322 male and female twins recruited from a community case register in Virginia, USA. Semi-structured interviews were used to establish the presence of major depression and generalized anxiety and the occurrence of ‘personal’ stressful events (i.e. events directly affecting the participant, such as divorce or separation, job loss, legal problems) and ‘network’ events (i.e. thoseaffecting othersclose to the respondent, such as the death or serious illness of a parent). For each of the events that met criteria for ‘high threat’, additional ratings were made of loss, humiliation, entrapment and danger using an adaptation of the LEDS definitions. In bothmenandwomen,onsetsofdepressionwerestrongly associated with loss and humiliation events while onsets of anxiety were predicted by higher ratings of danger. Mixed states of both major depression and generalized anxiety were associated with events that shared characteristics of loss, humiliation and danger. Events that contained elements of both loss and humiliation were particularly strongly associated with depression. Most of the research reviewed to this point concerns major depression as encountered in the general population and in outpatient samples within which studies suggest that 66 90% of episodes can be traced to a severe event within the prior 6 months. However, this still leaves some onsets of depression without a precipitating stressor, particularly among severe cases in treatment settings. At one time this was taken as indicating that there were two types of depression, some of which were less reactive to the environment and so had a more biological basis. While a simplistic dichotomy is now thought to be incorrect, it has been found that there may be a difference between first and subsequent episodes of depression, with first episodes being more strongly associated with life stress than subsequent recurrences; the fact that more hospitalized cases are of recurrent disorders probably explains the weaker association with events in these populations [24 28].

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16.3.2

Amplifying the impact of events: psychosocial vulnerability

While the majority of onsets of depression are preceded by severe events or difficulties, only about a fifth of those experiencing these stressors go on to develop depression. In the original Camberwell study, having three or more children, lack of paid employment and the lack of a close confiding relationship all increased the likelihood of depression in the face of a severely threatening event [9]. Subsequent studies have unpacked more precisely what these broad vulnerability indicators were picking up. Thus, for example, in the Islington study referred to earlier, two indices assessed at the first interview together predicted the majority of onsets of depression following a severe event in the follow-up year. These were negative psychological factors such as negative evaluation of self (i.e. low self-esteem) and negative environmental factors comprising negative interactions in the home (particularly involving a core sexual relationship) or, for single parents, the absence of a close confiding relationship. On their own these factors were not associated with the onset of depression but, in the presence of an appropriate severe event, both indices related to onset and were additive in effect [29]. These findings were replicated in a further longitudinal study by the same research team [30]. The vulnerability factors not only reduce a woman’s capacity to survive a crisis but also actually increase the risk of a crisis occurring. Given some thought, this is hardly surprising. For example, the likelihood of an infidelity or separation event is greater in disharmonious relationships even where the degree of marital tension is not sufficient to cross the threshold for rating a marital difficulty. These vulnerability factors are stable over quite long periods of time and interrelated. For example, the experience of childhood maltreatment, defined by the presence of parental rejection, neglect, severe physical abuse or the experience of sexual abuse increases the likelihood of both negative psychological and environmental vulnerabilities in adulthood and is associated through these to a significantly increased risk of exposure to severe events, all together accounting for a doubling of the risk of depression in those with childhood maltreatment [31,32]. The pathway from

childhood maltreatment to the adult vulnerability factors is illustrated by the observation that poor-quality parental care in childhood is associated with early cohabitation and premarital pregnancy that can trap young women in unsatisfactory relationships and can become a source of other chronic financial and interpersonal difficulties [33]. The majority of episodes of depression in the community resolve without treatment [34] but a significant minority of people with major depression are still depressed a year or two later [35]. Clinical factors such as the severity of symptoms and the duration of previous episodes are important [36], but so are broad social conditions such as low socioeconomic status [1,4,37]. In the general population studies carried out by George Brown and colleagues, the likelihood of a depression taking a chronic course (i.e. lasting at least a year) was strongly associated with the presence of an interpersonal difficulty at onset, again particularly where these involved a core sexual relationship [38,39]. As discussed earlier, these difficulties were more likely in women who had experienced childhood maltreatment, but the latter also had a substantial direct effect on whether an onset took a chronic course [32].

16.3.3

Biological vulnerability and gene–environment interaction

Genetic factors probably account for around 37% of the variance of depression [40], though this is significantly higher in women than men [41]. There is a significant gene by environment (GxE) interaction, such that genetic factors influence the onset of depression by affecting the sensitivity of the individual to severe events [42]. Genes may contribute indirectly to the occurrence of stressful events through their influence on temperament and through behaviours that make the occurrence of stressful events more likely [43,44]. Early studies explored the contribution of temperament to the occurrence and response to adversity through the concept of neuroticism, but the results of these studies are somewhat inconsistent and it has been suggested that the neuroticism measure reflects current mood state rather than a stable temperamental characteristic [45]. On the

DEPRESSION

other hand, in a study of twins Kendler, Gardner and Prescott [46] found that the highly inherited trait of neuroticism in one twin predicted not only the occurrence of life events in the other twin but also the quality of interpersonal relationships. In another study, childhood sexual abuse was predictive of adult major depression, the relationship being clearest in those with low to average levels of neuroticism [47]. A way forward in disentangling the genetic and environmental contributions to aetiology has been provided by studies based on samples from the Virginia Twin Registry in North America. In one of these studies, Kendler and Gardner [48] identified female monozygous (MZ) twins who were discordant for a lifetime history of major depression. As MZ twins are genetically identical, the study of discordant pairs who grew up in the same household allows the investigator to tease out environmental variables that characterize the affected sibling. Among the environmental variables identified in this way were a history of much lower levels of parental warmth, higher levels of overprotectiveness and greater maternal authoritarianism. The affected twin was more likely to be single or divorced and far more likely than their nonaffected sister to report stressful life events, particularly those involving romantic problems and job loss, higher rates of problems with relatives and poorer social support. The analysis, in a nutshell, replicates many of the linkages illustrated in the childhood to adulthood pathway discussed earlier (Figure 16.1). A possible biological mechanism that is partially genetically determined but which has a powerful environmental pathway through which the impact of

stressful events may operate is the response of the hypothalamic pituitary adrenal (HPA) axis and the secretion of cortisol. Cortisol has profound effects on the brain, including on memory and the emotional appraisal of events. Hyperactivity of the HPA axis is the most consistent biological finding in major depression. The basic sensitivity of this axis is determined genetically and is present from birth, but subsequent experiences have profound effects [49]. Studies of rats and nonhuman primates show that separating neonates from their mothers produces long-lasting changes in the HPA axis that resemble those seen in depressed patients. Emotional deprivation and maltreatment in childhood have a profound impact on the axis [50] and these effects persist into adulthood. Women with histories of sexual or severe physical abuse in childhood show increased HPA activation, reflected in an enhanced heart rate response and ACTH release when stressed. If they are currently depressed, they also show a very large increase in cortisol secretion [51]. Early life experiences sensitize the parts of the central nervous system related to the emotional response to stress and produce hyper-reactivity of a variety of neurotransmitter systems [52]. These and related observations are taken to indicate that a disturbed HPA axis is not just a response to depression but an underlying neurobiological abnormality that predisposes to the condition. In healthy individuals, there is a peak of circulating cortisol about half an hour after waking that gradually returns to awakening levels over the next 60 minutes. In depressed people the response is markedly increased [53]. Both cortisol and another corticosteroid, Severe Event

Negative childhood experiences e.g. Abuse/neglect

BIOLOGICAL VULNERABILITY

Risky (sexual) behaviours (e.g. PMP) and aversive partnerships

219

Interpersonal difficulty

Low self – esteem

Figure 16.1 Theoretical causal model

onset

Chronic Course

220

SOCIAL DETERMINANTS

dehydroepiandrosterone(DHEA), have been foundto be elevated on awakening among adolescents who subsequently develop major depression following a stressful experience [54]. Extending this work to an adult population, Tirril Harris and colleagues [55] carried out a prospective study of 116 women of whom 83 were thought to be vulnerable to depression on the basis of negative aspects of core relationships or negative evaluations of self (see above). Salivary cortisol and DHEA were collected at 0800 and 2000 hours. Participants were followed at 3 monthly intervals for 12 months to monitor the onset of depression and, if onset occurred, were interviewed soon afterwards in order to obtain information about life events as close in time as possible to the onset date. If there was no onset, follow-up took place at the 12 month point. The onset of depression was associated with severe events and with morning cortisol but, contrary to expectations, these appeared to be independent effects. Although much research has concentrated on the HPA axis, there are several closely related systems that are under genetic and environmental control. For example, the 5-hydroxytryptamine (5-HT, serotonin) neurotransmitter system is also modified by early life experience [56]. Perhaps the most exciting development in understanding the mechanism through which genetic susceptibility and the environment interact is in the observation that the short allele of the serotonin transporter protein (5-HTT) on chromosome 17 is associated with susceptibility to stressful events (or, conversely, that people with the long allele may be resilient to stress for genetic reasons). This was first shown by data from the Dunedin Longitudinal Birth Cohort Study, in which the rate of depression was markedly increased in subjects with the short allele who had also been exposed to stressful life events compared to those who had the long allele form. The life event measure was an index of stressful events occurring over a

16.4

5-year period. This effect was also seen for early childhood maltreatment, which was most strongly associated with later depression in people with the short allele [57]. The publication of these findings led to a flurry of replications with mixed results (see Reference [58] for a detailed review). Two studies have used a similar five-year index of life events: one, based on a sample of school teachers in Sydney, replicated the results for first-ever episodes of depression [59]; the second, based on a large population survey with a questionnaire-based measure of stress, failed to replicate [60]. By far the majority of studies have examined events occurring in the 12 months before onset, using a host of different ways of measuring and dating stress. Not surprisingly perhaps, the results are very mixed from studies showing no evidence for GxE at all (e.g. see References [60] and [61]) through others showing a weak effect (e.g. see Reference [62]). In one of the more careful studies, Kendler et al. [63] studied participants taken from their earlier Virginia Twin Register studies with careful dating of both the onset of depression and of events, excluding those who were already depressed at the start of the 12-month study period and events that occurred after onset. Although the GxE interaction was replicated, the effect was considerably smaller than that reported by earlier studies. In addition to the association with recent life events, the observation of GxE involving early childhood has also been replicated in four studies, two of which specifically deal with maltreatment one a study of young adults [64] and the other with children [65]. All four studies show strong effects and, of the studies to date, only one has failed to replicate [60]. Figure 16.1 pulls together these strands to provide a general model of the link between childhood and adult vulnerability and their relationship to the onset of depression.

SOCIAL CAPITAL, SOCIAL SUPPORT AND SUPPORTIVE INTERVENTIONS: PREVENTION AND RECOVERY FROM DEPRESSION

Social capital can be conceptualized as the ‘features of social life networks, norms and trust that enable

participants to act together more effectively to pursue shared objectives’ [66]. It encompasses social

DEPRESSION

structures and networks and the resources embedded within them [67,68]. Social network relationships are sometimes referred to in terms of ‘bonding’ and ‘bridging’ ties between people. Bonding ties are those that strengthen the cohesion of a social group, typified by high levels of mutual trust, loyalty and shared responsibility. The benefits include caring for vulnerable members of the group, but the other side of the coin are more negative characteristics of intolerance of people who do not ‘fit in’ to the structures and rules of the group. Bridging capital, on the other hand, describes the wider links between diverse groups, including broad networks of friends, acquaintances, business partners, clubs and so forth. It is thought to promote social inclusion and is generally viewed as positive. Communities with high levels of social capital, as measured by trust and civic participation, have lower death rates [69] and better self-rated health [70]. McCulloch [71] analysed data from the British Household Survey and found that people with low social capital (measured as perceived characteristics of neighbourhoods) had higher rates of common mental disorders but, being a cross-sectional study, it is not possible to infer causality from this data. Correlations have also been shown between low levels of trust in people in general and perceptions of community problems and common mental disorders [72,73]. Although social capital is usually conceptualized at an ecological level (i.e. the total amount of resources in a society potentially available to an individual), the evidence for an association between social capital measured at this ecological level and mental health is inconsistent and weak at best [74]. Webber [75] points out that, at any absolute level of social capital within a community, individuals may have unequal access to the constituent resources because of their location in the social hierarchy or the strength of their interpersonal ties, so that an individual-level measure of social capital might be a better way of appraising social capital in relation to health. He gives as an example the inability of a single mother to obtain child care from friends and family that may contribute to her risk of depression or of gaining employment through informal social contacts that could provide a positive life change and promote the recovery from depression. This leads to a consideration of social ties and the ways in which personal

221

support can protect a person’s mental health or help them recover from depression. The strands of evidence linking social support to depression are complex, not least because the term itself conceals many overlapping components. Support may be classified in terms of actual resources provided (e.g. see Reference [76]), which may be in terms of practical resources (e.g. a loan or the provision of direct assistance) or expressions of care and concern. Such objective support may be distinguished from perceived support (e.g. see Reference [77]). It may refer to a ‘background’ state such as the presence of a close confidant or loving partnership or to what was actually provided at the time of a crisis. Background objective support is only weakly correlated with perceived support [78], while it is this subjective perception that has the stronger association with mental health (e.g. see References [79] and [80]). Women appear to provide more support than men [81] and benefit more from perceived support than men, having larger and more varied social networks [82,83]. There is a broad consensus that positive social support is both protective of mental health [84,85] and capable of promoting recovery [86,87]. Perceived lack of support is associated with an increased incidence of common mental disorders [72,79]. Support measured at one point in time is no guarantee of its availability in a crisis. In fact, not receiving support that one might have expected seems particularly depressogenic [84,88]. This is the converse of the stress-buffering hypothesis where social support acts as a protection against the impact of a crisis [89,90]. Not all studies provide support for the stress-buffer hypothesis (e.g. see References [91] and [92]) and the evidence is probably stronger for the negative effect of the absence of support at times of crisis than for its buffering capacity. Recovery from depression may involve the reversal of the factors that are implicated in onset, such as a reduction in the severity of an ongoing difficulty or the occurrence of a ‘fresh-start’ event that gives renewed hope for the future. Such ‘fresh starts’ might involve, for example, a new job or the separation from an abusive spouse. In the follow-up of depressed women in the Islington studies described above, such events and difficulty reductions occurred in more than half of the remissions in both community and patient

222

SOCIAL DETERMINANTS

samples, and contributed to recovery in patients taking antidepressant medication [93,94]. Interventions for depression based on social support have been described they are, however, methodologically very challenging to undertake. One such intervention involved training female volunteers recruited through local press advertisements to provide a befriending service to 86 women suffering from chronic depression. The volunteers were asked to meet with the depressed woman for a minimum of an hour each week, acting as a friend, providing practical support with ongoing difficulties and working to create fresh-start experiences. A randomized controlled trial with a waiting list control design was employed with half of the depressed women being allocated a volunteer befriender immediately and half being placed on a waiting list and offered the service at follow-up a year later. Remission was attained by 65% of the women allocated to befriending and 39% of the waiting list controls a statistically significant difference of modest effect size [95]. Fresh-start events and standard attachment style were found to increase

16.5

the chances of remission while new severe stressors were found to inhibit remission [96]. It is perhaps surprising given the extent of our understanding of how the social environment affects both the onset and course of depression that there have not been more attempts to explore how the social factors described in this chapter might influence response to common pharmacological and psychological treatments. Nemeroff and colleagues [97] report an analysis of a large multicentre study of chronic depression in which 681 patients were randomized to 12 weeks of treatment with an antidepressant or psychotherapy or a combination of the two. The combination therapy was more effective than either alone, but among patients with a history of childhood trauma, psychotherapy alone was superior to pharmacotherapy and the combined treatment was only marginally superior to psychotherapy alone. This suggests that psychotherapy is an essential element in treating patients with chronic depression who have histories of childhood trauma [97].

CONCLUSIONS

The studies described in this chapter converge on a plausible biopsychosocial model for the aetiology of depression. The vast majority of the research behind this model comes from observational studies, yet many of the elements of the various pathways are open to testing through experimental studies, of which there are only a handful of examples to draw upon. Studies are underway that will test the impact of ‘parenting’ programmes, of supportive interventions for young people leaving care and of social factors as mediators inthe pharmacological treatment of depression. Designing such methodologically rigorous experiments involving manipulation of the social environment is a particularly challenging task, but the essential next step. REFERENCES 1. Lorant, V. et al. (2003) Socioeconomic inequalities in depression: a meta analysis. American Journal of Epi demiology, 157 (2), 98 112.

2. Galea, S. et al. (2007) Urban neighborhood poverty and the incidence of depression in a population based co hort study. Annals of Epidemiology, 17 (3), 171 179. 3. Lewis, G. et al. (1998) Socioeconomic status, standard of living, and neurotic disorder. Lancet, 352, 605 609. 4. Ostler, K. et al. (2001) Influence of socio economic deprivation on the prevalence and outcome of depres sion in primary care: the Hampshire Depression Pro ject. British Journal of Psychiatry, 178 (1), 12 17. 5. Bruce, M. L. and Hoff, R. A. (1994) Social and physical health risk factors for first onset major depressive dis order in a community sample. Social Psychiatry and Psychiatric Epidemiology, 29 (4), 165 171. 6. Weissman, M. M. (1987) Advances in psychiatric epidemiology: rates and risks for major depression. American Journal of Public Health, 77 (4), 445 451. 7. Radloff, L. S. (1975) Sex differences in depression: the effect of occupation and marital status. Sex Roles, 1, 249 265. 8. Nazroo, J. Y., Edwards, A. C. and Brown, G. W. (1997) Gender differences in the onset of depression following

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9.

10.

11.

12.

13.

14.

15.

16.

17.

18.

19. 20.

21. 22.

23.

a shared life event: a study of couples. Psychological Medicine, 27, 9 19. Brown, G. W. and Harris, T. O. (1978) Social Origins of Depression: A Study of Psychiatric Disorder in Women, Tavistock Press, London. Paykel, E. S. (1983) Methodological aspects of life events research. Journal of Psychosomatic Research, 27 (5), 341 352. Bebbington, P. et al. (1984) Misfortune and resilience: a community study of women. Psychological Medicine, 14, 347 363. Campbell, E., Cope, S. and Teasdale, J. (1983) Social factors and affective disorder: an investigation of Brown and Harris’ model. British Journal of Psy chiatry, 143, 548 553. Costello, C. G. (1982) Social factors associated with depression: a retrospective community study. Psycho logical Medicine, 12, 329 339. Surtees, P. G. et al. (1986) Life events and the onset of affective disorder: a longitudinal general population study. Journal of Affective Disorders, 10, 37 50. Brown, G. W., Bifulco, A. and Harris, T. O. (1987) Life events, vulnerability and onset of depression: some refinements. British Journal of Psychiatry, 150, 30 42. Brown, G. W., Harris, T. O. and Hepworth, C. (1995) Loss, humiliation and entrapment among women de veloping depression: a patient and non patient compar ison. Psychological Medicine, 25, 7 21. Cooper, Z. and Paykel, E. S. (2003) Social factors in the onset and maintenance of depression, in Principles of Social Psychiatry (eds D. Bhugra and J. Leff), Blackwell, Oxford, pp. 99 121. Finlay Jones, R. and Brown, G. W. (1981) Types of stressful life events and the onset of anxiety and depres sive disorders. Psychological Medicine, 11, 803 815. Miller, P. M. and Ingham, J. G. (1983) Dimensions of experience. Psychological Medicine, 13, 417 429. Abramson, L. Y., Seligman, M. E. and Teasdale, J. D. (1978) Learned helplessness in humans: critique and reformulation. Journal of Abnormal Psychology, 87 (1), 49 74. Gilbert, P. (1992) Depression: The Evolution of Power lessness, Lawrence Erlbaum, Hillside, New Jersey. Price, J. et al. (1994) The social competition hypothesis of depression. British Journal of Psychiatry, 164, 309 315. Kendler, K. S. et al. (2003) Life event dimensions of loss, humiliation, entrapment and danger in the predic

223

tion of onsets of major depression and generalised anxiety. Archives of General Psychiatry, 60, 789 796. 24. Farmer, A. et al. (2000) Cardiff depression study. A sib pair study of life events and familiality in major depres sion. British Journal of Psychiatry, 176, 150 155. 25. Ormel, J., Oldehinkel, A. J. and Brilman, E. I. (2001) The interplay and etiological continuity of neuroticism, difficulties, and life events in the etiology of major and subsyndromal, first and recurrent depressive episodes in later life. American Journal of Psychiatry, 158 (6), 885 891. 26. Frank, E. et al. (1994) Life events and the research diagnostic criteria endogenous subtype. A confirmation of the distinction using the Bedford College methods. Archives of General Psychiatry, 51 (7), 519 524. 27. Brown, G. W., Harris, T. O. and Hepworth, C. (1994) Life events and endogenous depression: a puzzle reex amined. Archives of General Psychiatry, 51, 525 534. 28. Mitchell, P. B. et al. (2003) Severity of stressful life events in first and subsequent episodes of depression: the relevance of depressive subtype. Journal of Affec tive Disorders, 73 (3), 245 252. 29. Brown, G. W., Bifulco, A. and Andrews, B. (1990) Self esteem and depression: 3. Aetiological issues. Social Psychiatry and Psychiatric Epidemiology, 25, 235 243. 30. Bifulco, A. et al. (1998) Predicting depression in women: the role of past and present vulnerability. Psychological Medicine, 28 (1), 39 50. 31. Bifulco, A., Brown, G. W. and Harris, T. O. (1994) Childhood experience of care and abuse (CECA): a retrospective interview measure. Child Psychology and Psychiatry, 35, 1419 1435. 32. Brown, G. W. et al. (2008) Parental maltreatment and adulthood cohabiting partnerships: a life course study of adult chronic depression 4. Journal of Affective Disorders, 110 (1 2), 115 125. 33. Harris, T. O. (1988) Psycho social vulnerability to depression: the biographical perspective of the Bedford College studies, in Handbook of Social Psychiatry (eds A. S. Henderson and G. D. Burrows), Elsevier, Amsterdam, pp. 55 71. 34. Goldberg, D. and Goodyer, I. (2005) The Origin and Course of Common Mental Disorder, Routledge, London. 35. Spijker, J. et al. (2002) Duration of major depressive episodes in the general population: results from The Netherlands Mental Health Survey and Incidence

224

36.

37. 38.

39.

40.

41.

42.

43.

44.

45.

46.

47.

48.

SOCIAL DETERMINANTS

Study (NEMESIS). British Journal of Psychiatry, 181, 208 213. Spijker, J. et al. (2001) Determinants of poor 1 year outcome of DSM III R major depression in the general population: results of The Netherlands Mental Health Survey and Incidence Study (NEMESIS). Acta Psy chiatrica Scandinavica, 103 (2), 122 130. Keller, M. B. (1994) Depression: a long term illness. British Journal of Psychiatry, 165 (suppl. 26), 9 15. Brown, G. W. and Moran, P. (1994) Clinical and psychological origins of chronic depressive episodes: I. A community survey. British Journal of Psychiatry, 165, 447 456. Brown, G. W., Craig, T. K. and Harris, T. O. (2008) Parental maltreatment and proximal risk factors using the Childhood Experience of Care and Abuse (CECA) instrument: a life course study of adult chronic depression 5. Journal of Affective Disorders, 110 (3), 222 233. Sullivan, P. F., Neale, M. C. and Kendler, K. S. (2000) Genetic epidemiology of major depression: review and meta analysis. American Journal of Psychiatry, 157 (10), 1552 1562. Kendler, K. S. et al. (2006) A Swedish national twin study of lifetime major depression. American Journal of Psychiatry, 163 (1), 109 114. Kendler, K. S. et al. (1995) Stressful life events, genetic liability, and onset of an episode of major depression in women. American Journal of Psychiatry, 152 (6), 833 842. Plomin, R. et al. (1990) Genetic influence on life events during the last half of the life span. Psychology and Aging, 5 (1), 25 30. Kendler, K. S. et al. (1993) A twin study of recent life events and difficulties. Archives of General Psychiatry, 50 (10), 789 796. Farmer, A. et al. (2002) Neuroticism, extraversion, life events and depression. The Cardiff Depression Study. British Journal of Psychiatry, 181, 118 122. Kendler, K. S., Gardner, C. and Prescott, C.A. (2003) Personality and experience of psychological adversity. Psychological Medicine, 33, 1193 1202. Kendler, K. S., Kuhn, J. W. and Prescott, C. A. (2004) Childhood sexual abuse, stressful life events and risk for major depression in women. Psychological Medi cine, 34 (8), 1475 1482. Kendler, K. S. and Gardner, C. O. (2001) Monozygotic twins discordant for major depression: a preliminary

49.

50.

51.

52.

53.

54.

55.

56.

57.

58.

59.

60.

61.

exploration of the role of environmental experiences in the aetiology and course of illness. Psychological Med icine, 31 (3), 411 423. Bradley, R. G. et al. (2008) Influence of child abuse on adult depression: moderation by the corticotropin re leasing hormone receptor gene. Archives of General Psychiatry, 65 (2), 190 200. Gunnar, M. R. et al. (2001) Salivary cortisol levels in children adopted from Romanian orphanages. Devel opment and Psychopathology, 13 (3), 611 628. Heim, C. and Nemeroff, C. B. (2002) Neurobiology of early life stress: clinical studies. Seminars in Clinical Neuropsychiatry, 7 (2), 147 159. Heim, C. and Nemeroff, C. B. (2001) The role of childhood trauma in the neurobiology of mood and anxiety disorders: preclinical and clinical studies. Bio logical Psychiatry, 49 (12), 1023 1039. Bhagwagar, Z., Hafizi, S. and Cowen, P. J. (2003) Increase in concentration of waking salivary cortisol in recovered patients with depression. American Jour nal of Psychiatry, 160 (10), 1890 1891. Goodyer, I. M. et al. (2000) Recent life events, cortisol, dehydroepiandrosterone and the onset of major depres sion in high risk adolescents. British Journal of Psy chiatry, 177, 499 504. Harris, T. O. et al. (2000) Morning cortisol as a risk factor for subsequent major depressive disorder in adult women. British Journal of Psychiatry, 177, 505 510. Gardner, K. L. et al. (2005) Early life experience alters behavior during social defeat: focus on serotonergic systems. Neuroscience, 136 (1), 181 191. Caspi, A. et al. (2003) Influence of life stress on depression: moderation by a polymorphism in the 5 HTT gene. Science, 301 (5631), 386 389. Uher, R. and McGuffin, P. (2008) The moderation by the serotonin transporter gene of environmental adver sity in the aetiology of mental illness: review and methodological analysis. Molecular Psychiatry, 13 (2), 131 146. Wilhelm, K. et al. (2006) Life events, first depression onset and the serotonin transporter gene. British Jour nal of Psychiatry, 188, 210 215. Surtees, P. G. et al. (2006) Social adversity, the ser otonin transporter (5 HTTLPR) polymorphism and major depressive disorder. Biological Psychiatry, 59 (3), 224 229. Gillespie, N. A. et al. (2005) The relationship between stressful life events, the serotonin transporter

DEPRESSION

62.

63.

64.

65.

66. 67.

68.

69.

70.

71.

72.

73.

74.

(5 HTTLPR) genotype and major depression. Psycho logical Medicine, 35 (1), 101 111. Jacobs, N. et al. (2006) Stress related negative affectiv ity and genetically altered serotonin transporter func tion: evidence of synergism in shaping risk of depres sion. Archives of General Psychiatry, 63 (9), 989 996. Kendler, K. S. et al. (2005) The interaction of stressful life events and a serotonin transporter polymorphism in the prediction of episodes of major depression: a re plication. Archives of General Psychiatry, 62 (5), 529 535. Taylor, S. E. et al. (2006) Early family environment, current adversity, the serotonin transporter promoter polymorphism, and depressive symptomatology. Bio logical Psychiatry, 60 (7), 671 676. Kaufman, J. et al. (2004) Social supports and serotonin transporter gene moderate depression in maltreated children. Proceedings of the National Academy of Sciences of the United States of America, 101 (49), 17316 17321. Putnam, R. (1996) The strange disappearance of civic America. The American Prospect, 7, 34 48. Lin, N. (2001) Social Capital: A Theory of Social Structure and Action, Cambridge University Press, Cambridge. Bourdieu, P. (1986) The forms of capital, in Handbook of Theory and Research for the Sociology of Education (ed. J. Richardson), Greenwood Press, New York, pp. 241 258. Lochner, K. A. et al. (2003) Social capital and neigh borhood mortality rates in Chicago. Social Science and Medicine, 56 (8), 1797 1805. Subramanian, S. V., Kawachi, I. and Kennedy, B. P. (2001) Does the state you live in make a difference? Multilevel analysis of self rated health in the US. Social Science and Medicine, 53, 9 19. McCulloch, A. (2001) Social environments and health: cross sectional national survey. British Medical Jour nal, 323 (7306), 208 209. Boreham, R., Stafford, M. and Taylor, R. (2002) Health Survey of England 2000: Social Capital and Health, The Stationary Office, London. Hendryx, M. S. and Ahern, M. M. (1997) Mental health functioning and community problems. Journal of Com munity Psychology, 25, 147 157. De Silva, M. J. et al. (2005) Social capital and mental illness: a systematic review. Journal of Epidemiology and Community Health, 59 (8), 619 627.

225

75. Webber, M. (2005) Social capital and mental health, in Social Perspectives in Mental Health. Developing So cial Models to Understand and Work with Mental Distress (ed. J. Tew), Jessica Kingsley, London, pp. 90 111. 76. Weiss, R. S. (1974) The provision of social relation ships, in Doing Unto Others: Joining, Molding, Con forming, Helping, Loving (ed. Z. Rubin), Prentice Hall, Englewood Cliffs, New Jersey, pp. 17 26. 77. Cobb, S. (1976) Presidential Address 1976. Social support as a moderator of life stress. Psychosomatic Medicine, 38 (5), 300 314. 78. Haber, M. G. et al. (2007) The relationship between self reported received and perceived social support: a meta analytic review. American Journal of Community Psychology, 39 (1 2), 133 144. 79. Henderson, S. (1981) Social relationships, adversity and neurosis: an analysis of prospective observations. British Journal of Psychiatry, 138, 391 398. 80. Kessler, R. C. et al. (1994) Perceived support and adjustment to stress in a general population sample of female twins. Psychological Medicine, 24 (2), 317 334. 81. Kessler, R. C. and McLeod, J. D. (1984) Sex differences in vulnerability to undesirable life events. American Sociological Review, 49, 620 631. 82. Fuhrer, R. and Stansfeld, S. A. (2002) How gender affects patterns of social relations and their impact on health: a comparison of one or multiple sources of support from ‘close persons’. Social Science and Med icine, 54 (5), 811 825. 83. Antonucci, T. C. (1994) A life span view of womens social relations, in Women Growing Older (eds B. F. TurnerandL.E. Troll), Sage, Thousand Oaks, California, pp. 239 269. 84. Brown, G. W. et al. (1986) Social support, self esteem and depression. Psychological Medicine, 16, 813 831. 85. Turner, R. J. and Marino, F. (1994) Social support and social structure: a descriptive epidemiology. Journal of Health and Social Behavior, 35 (3), 193 212. 86. Leenstra, A. S., Ormel, J. and Giel, R. (1995) Positive life change and recovery from depression and anxiety. A three stage longitudinal study of primary care atten ders. British Journal of Psychiatry, 166 (3), 333 343. 87. Pevalin,D.J.and Goldberg,D.P.(2003)Socialprecursors to onset and recovery from episodes of common mental illness. Psychological Medicine, 33 (2), 299 306. 88. Pagel, M. D., Erdly, W. W. and Becker, J. (1987) Social networks: we get by with (and in spite of) a little help

226

89.

90.

91.

92.

93.

SOCIAL DETERMINANTS

from our friends. Journal of Personality and Social Psychology, 53 (4), 793 804. Broadhead, J. et al. (2001) Social support and life events as risk factors for depression amongst women in an urban setting in Zimbabwe. Social Psychiatry and Psychiatric Epidemiology, 36 (3), 115 122. Lin, N., Woelfel, M. W. and Light, S. C. (1985) The buffering effect of social support subsequent to an important life event. Journal of Health and Social Behavior, 26 (3), 247 263. Brugha, T. S. et al. (1997) Predicting the short term outcome of first episodes and recurrences of clinical depression: a prospective study of life events, difficul ties, and social support networks. Journal of Clinical Psychiatry, 58 (7), 298 306. Wade, T. D. and Kendler, K. S. (2000) Absence of interactions between social support and stressful life events in the prediction of major depression and de pressive symptomatology in women. Psychological Medicine, 30 (4), 965 974. Brown, G. W., Lemyre, L. and Bifulco, A. (1992) Social factors and recovery from anxiety and depressive

94.

95.

96.

97.

disorders. A test of specificity. British Journal of Psy chiatry, 161, 44 54. Brown, G. W. (1993) Life events and affective disorder: replications and limitations. Psychosomatic Medicine, 55 (3), 248 259. Harris, T., Brown, G. W. and Robinson, R. (1999) Befriending as an intervention for chronic depression among women in an inner city. 1: randomised con trolled trial. British Journal of Psychiatry, 174, 219 224. Harris, T., Brown, G. W. and Robinson, R. (1999) Befriending as an intervention for chronic depression among women in an inner city. 2: role of fresh start experiences and baseline psychosocial factors in remis sion from depression. British Journal of Psychiatry, 174, 225 232. Nemeroff, C. B. et al. (2003) Differential responses to psychotherapy versus pharmacotherapy in patients with chronic forms of major depression and childhood trauma. Proceedings of the National Academy of Sciences of the United States of America, 100 (24), 14293 14296.

17 Common mental disorders Christoph Lauber Department of Population and Behavioural Sciences, University of Liverpool, Liverpool, UK

17.1

DEFINITION: WHAT ARE COMMON MENTAL DISORDERS?

Over time, the language used to describe depression, anxiety and related common psychiatric disorders has changed, especially in English-speaking countries. Increasingly, the term ‘common mental disorders’ (CMDs) has come into general use and includes depressive disorders, anxiety disorders, obsessivecompulsive disorders and phobias [1]. CMDs are commonly encountered in community settings, and their occurrence signals a breakdown in normal functioning. Also referred to as nonpsychotic or neurotic disorders they often manifest with a mixture of somatic, anxiety and depressive symptoms. This implies the exclusion of organic disorders like dementia, confusional states and delirium, schizophrenia and other psychotic disorders, and substance abuse [2]. Following from this, it is a widely held belief that CMDs are minor problems of general mental health

17.2

such as anxiety and affective well-being [3]. When compared to disorders usually referred to as ‘severe mental illness’, it may be interpreted that CMDs cannot reach a serious illness level. Although severe mental illnesses are often highly disabling and therefore cause a huge personal and societal burden, CMDs can be as disabling and handicapping as severe mental illness. The significance of CMDs for public health stems primarily from the recognition that they are much more prevalent and, thus, are responsible for the majority of illness burden worldwide. Global estimates for developed and developing countries suggest that the burden caused by CMDs is similar to, and in many cases greater than, that of many physical health disorders [4]. CMDs are, hence, one important cause of ill-health, social disability and health service use and, thus, pose a significant public health problem [5].

EPIDEMIOLOGICAL FINDINGS

The WHO multinational study of the prevalence, nature and determinants of CMDs in general medical care settings was conducted in 14 countries [6]. Despite enormous differences in most variables, simila-

rities across centres included general consensus on the ubiquity of CMDs, the comorbidity of anxiety and depression, and the association of CMDs with disability. These results are supported by different surveys

Principles of Social Psychiatry, second edition Edited by Craig Morgan and Dinesh Bhugra Ó 2010 John Wiley & Sons, Ltd.

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in Western countries. For instance, the National Comorbidity Survey (NCS) Replication Study from the US reported that 28.8% of people have had some kind of CMD during their lifetime (‘any anxiety disorder’ according to DSM-III-R) and, of these, 18.1% had experienced a CMD in the last 12 months [7]. The Psychiatric Morbidity Survey (PMS) of 2000 [8] found that about one in six adults (16.4%) in the UK were assessed as having a CMD in the week before the interview. The most prevalent CMD among the population as a whole was mixed anxiety and depressive disorder (8.8%). Generalized anxiety disorder was next most commonly found (4.4%). The remaining disorders were less prevalent, ranging from 0.7% (panic disorder) to 1.8% (phobias). The overall prevalence for any CMD for all adults in the UK remained stable between 1993 and 2000 (the years when the PMSs were conducted): in 1993 the

17.3

RISK FACTORS FOR COMMON MENTAL DISORDERS

Sociodemographic variables are consistently reported to be associated with CMD. In brief, people with CMDs are more likely to be female, aged between 35 and 54 years old, separated or divorced, and of ‘lower social position’ ([10]; [11], p. 14), including living as a one-person family or as a lone parent, being unemployed or economically inactive, living in an economically deprived area, and having poor material circumstances and lower education [8,12,13].

17.3.1

proportion of adults with at least one CMD was 14%, while in 2000 the proportion was 14.5%. However, there was a slight but significant increase in the prevalence of any CMD among men, from 10.7% in 1993 to 11.8% in 2000 [8], with an increase mostly in mixed anxiety and depressive disorders in those aged 35 to 54. In contrast, the NCS Replication Study found an increase of the lifetime prevalence of CMDs by nearly 4% over one decade [7,9]. Although the diagnostic (American surveys usually use the Structured Clinical Interview for DSM-IV (SCID), the PMS used the Clinical Interview Schedule revised) and the time criteria (the PMS used a time frame of 1 week prior to the interview while the NCS asked for a 12-month and lifetime prevalence) used in these surveys may differ and, thus, the data are not easily comparable, the numbers of people affected gives a clear indication of the size of the problem.

Gender

The PMS (2000) showed that prevalence rates were higher among women than men for all CMDs except panic disorders, where there was no gender difference. The disparity between the rates for women and men was significant for phobias and mixed anxiety and depressive disorders. Similar patterns have also been found in non-Western cultures [14,15]. Explanations for this frequently invoke social position and processes. For example, an explanation for the high prevalence of CMDs in women may be the difficulties they encounter in a number of different areas, such as their social position, aspirations and

domestic problems [12]. Their multiple roles include child-bearing, child-rearing and running the family home, and in an increasing proportion of families earning income is likely to lead to considerable stress. The reproductive roles of women, the consequences of infertility, postnatal depression and in some cultures the failure to produce a male child are examples of mechanisms that make women vulnerable to CMDs. Moreover, violence against women is emerging as a pervasive global issue and contributes significantly to preventable morbidity and mortality for women across cultures.

17.3.2

Age

In the absence of cohort effects, differential mortality and age-related differences in the willingness to report symptoms, one would expect to find increasing lifetime prevalence of all disorders with age [9]. However, the NCS and the Epidemiologic Catchment Area (ECA) Study showed the group aged 25 to 34 years as having the highest prevalence with declining figures at later ages, while the highest prevalence in the PMS (2000) was in the group aged 40 54 years (16%). The lowest prevalence rates of any CMD were found among older

COMMON MENTAL DISORDERS

people. The prevalence among those aged 65 69 was 9.6% and among those aged 70 74 was 8.3%. In line with this, Melzer et al. [10,11] found that the prevalence rates for having any CMD in men aged 65 69 years (5%) were dramatically lower than in the age group 60 64 years (14.5%). Prevalence rates in women peaked at age 50 to 54 years (21.3%) and declined thereafter, but no large changes in prevalence are evident around age 60 or 65 years. In men leaving work early (before the age of 65 years) the prevalence of CMDs remains high until the conventional retirement age. The authors concluded that in the general population aged 50 74 years, there is a dramatic improvement in mental health in men after the conventional retirement age, but not in women.

17.3.3

Living circumstances

People with CMDs are more likely to be separated or divorced and to live as a one-person family or as a lone parent. In the PMS (2000), lone mothers were twice as likely to have a CMD as other women. This was not significant after controlling for financial strain or social support. Lone fathers were nearly four times more likely to have a CMD than other men, and this risk remained undiminished by controlling for age, income, debt and levels of social support [13]. Thus, debt management would be a rational strategy to reduce psychiatric morbidity in lone parents.

17.3.4

Ethnicity

The PMS (2000) reports clear ethnic differences in the prevalence of CMDs in the UK. While the overall prevalence was 16.4%, South Asians (Indian, Pakistani and Bangladeshi) were reported to have a prevalence of 19.2% and whites one of 16.3%. Black people (black Caribbean, black African and other black groups) have the lowest prevalence with 14.1%. All other ethnicities have a prevalence of 20.4%. This partly contradicts results from the US where neither the NCS nor the ECA found any black white or Hispanic white differences for panic disorders [16], but an increased prevalence for simple phobia and agoraphobia in black people [9].

17.3.5

229

Socioeconomic factors

There are some results that describe a relationship between CMD and socioenvironmental factors. The NCA reported that respondents living in rural areas had a 40% lower risk of 12-month comorbidity than their urban counterparts [9]. The PMS (2000) confirmed this finding for the UK and additionally showed some geographical variability, with the Northwest of England (200 per 1000) and London (182 per 1000) having the highest prevalence of CMDs. Regions with prevalence rates lower than the UK average were the West Midlands, Scotland and parts of the South. Rates of all CMDs are declining with the increase of employment, income and education. This holds true for the UK, the US, the Netherlands and Australia ([8 10]; [11], p. S7). The association between CMD and economic deprivation is supported by another result from the PMS (2000) in that people with a CMD, when compared with those who have no such disorder, are more likely to be tenants of local authorities and housing associations and have moved three or more times in the last two years. Finally, a study from Chile found a negative association between the quality of the built environment of small geographical sectors and the presence of CMDs among its residents [17].

17.3.6

Comorbidity

The Epidemiologic Catchment Area (ECA) Study, conducted in the US in the 1990s, showed that comorbidity among mental disorders is high. More than 60% of the ECA respondents with at least one lifetime disorder had two or more disorders [9]. Similar results are reported from the NCS Replication Study [7]. The same holds true for the comorbidity of CMDs with physical illnesses. In the PMS (2000), 42% reported a physical complaint (all the following data referring to CMDs include people with a depressive episode!), with women being slightly more likely than men to report a longstanding illness (43% versus 40%). There is a clear relationship between the number of CMDs and the reporting of a physical complaint. Just under two-fifths of

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adults with no CMD (38%) report having a physical complaint. This rises to over half of those with one CMD (57%), while among those with two or more CMDs, two-thirds (67%) report at least one physical complaint. The prevalence of musculoskeletal or skin complaints, complaints of the digestive system, the nervous system and the genitourinary system is almost twice as high in people with CMDs when compared to those without.

17.4

Haynes et al. [18] examined whether excessive alcohol consumption is a risk factor for anxiety and depression in the general population, and whether anxiety and depression are risk factors for excessive alcohol consumption. They found that excessive alcohol consumption was not associated with the onset of anxiety and depression, but abstinence was associated with a lower risk. Subthreshold symptoms wereweakly associated with new-onset alcohol dependence.

MENTAL HEALTH SERVICE USE

The majority of people with CMDs do not receive any professional treatment at all. This has been found in both the NCS and PMS. The PMS (2000) showed that just 24% of people with a CMD (data including depressive episodes) were receiving treatment of some kind for mental or emotional problems at the time of interview, with 20% taking psychoactive medication, while 9% were receiving counselling or therapy. A small proportion (4%) was receiving both forms of treatment. The proportion receiving treatment rose with the number of CMDs present. The PMS (2000) showed that the group most likely to be receiving treatment were those with phobias. Over half of this group (54%) were receiving treatment in some form, with 27% receiving medication only, 9% receiving therapy or counselling alone and 18% receiving both forms of treatment. Least likely to be receiving any treatment were those with mixed anxiety and depressive disorder (16%). Antidepressants were the most common psychoactive medication being used (PMS, 2000), being prescribed to 16% of people with a current CMD, mostly to those with phobias (40%) and obsessive compulsive disorder (30%). Again, there was an increase in the proportion of people being prescribed antidepressants relating to the number of disorders present. Overall, 6% of respondents with CMD were taking hypnotics or anxiolytics. These were most commonly prescribed to those with phobias (17%) and generalized anxiety disorder (14%). Just under a tenth (9%) of people with CMDs were receiving counselling or therapy, compared with 1% of those with no CMD. Most likely to be treated by this method were those with phobias (27%) and obsessive compulsive disorder (20%), while those with mixed

anxiety and depressive disorder were least likely to be receiving counselling or therapy (5%). The most common types of therapy were counselling (4%) and psychotherapy (3%). Behavioural or cognitive therapy was being given to 1% of people with CMDs. Those with obsessive-compulsive disorder (12%) and phobias (11%) were the most likely to be treated by psychotherapy. These groups were also the most likely to have behavioural or cognitive therapy, 5% of those with obsessive compulsive disorder and 3% of those with phobias. Counselling was most often prescribed for people with phobias (15%) and obsessive-compulsive disorder (10%) (PMS, 2000). In the previous year almost two-fifths of those included in the PMS (2000) sample with CMDs (39%) had spoken to their GP about a mental or emotional problem, compared with 6% of those without a CMD. There was a clear association between the number of disorders and the likelihood of having spoken to a GP. Most likely to have seen a GP in the last two weeks were those with phobias (19%), panic disorder (14%) and obsessive-compulsive disorder (13%). Those with mixed anxiety and depressive disorder were the least likely to have talked to a GP about an emotional or mental problem (3%), while 3% of those with a CMD visited an outpatient department for treatment or a checkup because of a mental or emotional problem in the last three months, compared with less than 1% of those without a disorder. Those with phobias (13%) were almost twice as likely as those with any other disorder to have visited a hospital as an outpatient for a psychiatric problem. Among those with obsessive-compulsive disorder, 7% had made an outpatient visit for their problems, while

COMMON MENTAL DISORDERS

6% of those with generalized anxiety disorder had done so. Among respondents assessed as having a CMD, 16% had used one or more of the community care services in the last year, compared with 4% of those with no CMD. The most frequently used

17.5

services were nursing services; 4% of people with a CMD had seen a social worker, compared with 1% of those with no CMD, while 3% of people with a CMD mentioned using a psychiatrist, psychologist, home help or care worker in the previous twelve months.

THE ECONOMIC IMPACT OF COMMON MENTAL DISORDERS

There are relatively few data available on the economic impact of CMDs although a considerable number of the days taken off work are related to these disorders. A recently published study by DasMunshi et al. [19] showed that a fifth of all days off work in the UK occurred in people with mixed anxiety and depressive disorder. In a report on the cost of mental health care in England [20], the total costs of CMDs (data without both post-traumatic stress disorder and mixed anxiety and depressive disorder) were approximately £8.9 billion in 2007. This includes £7.7 billion from lost employment

17.6

231

costs and £1.2 billion from service costs. As about half of the people with anxiety disorders are not in contact with services and of those who are, 46% do not receive medication or psychological therapy, these costs might grow considerably higher in the near future, if those in contact with services but who are not currently receiving treatment do receive any kind of therapy. These costs, however, will be offset by reduced lost employment costs. If combined medication and psychological therapy are used, there will be less of an offset and costs may actually exceed benefits.

AN INTERNATIONAL PERSPECTIVE ON THE RELATIONSHIP BETWEEN SOCIETY, CULTURE AND COMMON MENTAL DISORDERS

Most research on CMDs has been carried out in Western countries. However, as CMDs are a major contributor to the burden of disease in developing countries as well, some studies have emerged from outside the Western world. These results do not necessarily differ from those reported in Western countries. Even more, they might contribute to a shared worldwide and crosscultural understanding of factors associated with risk for and course of CMDs.

indicators of poverty such as poor housing or low income. Finally, Pothen et al. [23] reported from India that indicators of low socioeconomic status, i.e. poverty (e.g. being in debt or inability to buy food) and illiteracy were significantly associated with CMDs seen in primary health care settings. These findings suggest that the association between poverty and CMDs is a universal one, occurring in all societies irrespective of their levels of development.

17.6.1

17.6.2

Poverty

Different studies have found that numerous indicators of poverty are strongly associated with CMDs. For instance, Patel et al. [12] compared data from India, Zimbabwe, Chile and Brazil and found a relationship between CMDs, low education and poverty. These findings were replicated by Ludermir and Lewis [21] in a Brazilian sample. A literature review by Patel and Kleinman [22] described a relationship of CMDs with

Violence

Ludermir et al. [24] reported from Brazil that a large proportion of women are exposed to violence (50.7%). The most frequent forms were psychological violence alone (18.8%) or accompanied by physical violence (16.0%). Most forms of violence studied (physical, psychological or sexual violence alone or mixed forms) were significantly associated with mental disorders. The prevalence of CMD was 49.0% among

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SOCIAL DETERMINANTS

women who reported any type of violence and 19.6% among those who did not report violence. These findings confirmed previous results by Lopes et al. [25] from Brazil.

17.6.3

Education and employment

A study from Chile found a strong, inverse and independent association between education and CMDs [17]. The prevalence of CMDs was also higher amongst people with manual unskilled occupations, overcrowded housing and lower per capita income. Similar results have been found in other Latin American studies [26].

17.6.4

Migrants

CMDs in ethnic minorities have been the subject of very little research. In general, CMDs appear to be more prevalent in many ethnic minority groups in the UK compared with the general population, with one report suggesting mood disorders are more

17.7

common in Caribbean and African groups, anxiety more common in Irish-born populations and phobias more common in Asian and Oriental groups [27]. Different conceptualizations of health and disease may contribute to misrecognition of CMD in ethnic minorities. For instance, in a study from South London, Bhui et al. [28] found that the prevalence of CMD and somatic symptoms does not differ across cultures. Among English subjects, general practitioners were more likely to identify correctly pure psychiatric illness and mixed pathology, but Punjabi subjects with common mental disorders were more often assessed as having ‘subclinical disorders’ and ‘physical and somatic’ disorders. Punjabi cases with depressive ideas were less likely to be detected compared with English ones. English women were less well detected than English men by Asian general practitioners. Helpseeking English subjects were more likely to be correctly identified as cases. This mis- or underrecognition of CMDs in ethnic minorities may have significant health service implications. For example, it may lead to higher service use due to unexplained symptoms, but lower rates of effective treatment [27].

COMMON MENTAL DISORDERS AND THE SOCIAL ENVIRONMENT

People suffering from a CMD impact on their social environment (as well as vice versa). For example, Stewart et al. [29] found an association between maternal CMDs and infant growth impairment in rural Malawi the mean length-for-age for infants of mothers with a CMD was significantly lower than for infants of mothers without CMD. The same holds true for mean weight-for-age, but this difference was not significant. Hadley et al. [30] found that food insecurity, stressful life events and symptoms of CMD were highly prevalent in sub-Saharan Africa. Food insecurity and stressful life events were independently associated with high symptoms of CMDs. The finding that food insecurity and stressful life events are associated with

17.8

indicators of CMDs is consistent with studies from other developing countries. For instance, Harpham et al. [31] detected in their community-based crosssectional survey in Ethiopia, India, Vietnam and Peru high levels of maternal CMD and child malnutrition in each study setting. While there was a relation between high maternal CMD and poor child nutritional status in India and Vietnam, the findings from Peru and Ethiopia, however, do not provide clear evidence for a similar association being present in non-Asian countries. These findings suggest that the negative effects of food insecurity extend beyond nutritional outcomes and that interventions to promote food security may also positively influence adult mental health.

PUBLIC HEALTH IMPLICATIONS

CMDs are highly prevalent. However, this has so far not sufficiently influenced the attitudes of mental

health professionals, research studying CMDs in relation to influencing and explaining factors, and

COMMON MENTAL DISORDERS

mental health service provision for those affected. Thus, CMDs are still undervalued when compared to other mental illnesses, underrecognized and consequently undertreated. As such, CMDs are not yet considered as a ‘core business’ of social psychiatry although many patients with CMDs develop severely disabling conditions and are, thus, on the caseloads of secondary mental health services. Even worse, general practitioners are faced with ‘unexplained symptoms’ that they do not recognize as CMDs. All this leads to the fact that people with CMDs are at great risk of not being recognized to have an illness, not being appropriately treated and therefore developing a chronic and disabling condition. This might be especially true for groups with increased risk of CMDs, such as women and socially and/or economically disadvantaged people, e.g. ethnic minorities, unemployed people or those with low education. This is a finding irrespective of the overall state of development of the society these people live in. In public health terms, there are a number of implications of these findings. They might vary depending on the cultural and social background, but can be summarized in four topics.

17.8.1

Education

and professionals of secondary (mental) health care. Special emphasis should be given to the comorbidity of CMDs and physical disorders. This of course would lead to more health service use and more treatment. However, the benefits for the wider society would by far outweigh the costs, especially when taking into account the considerable economic loss due to sickness and disability caused by CMDs.

17.8.2

17.9

Poverty and food insecurity

Poverty and food insecurity is a topic that one might think is only relevant to developing countries. However, research evidence shows that the contrary is true; the relationship between CMDs and poverty particularly holds true for developed countries as well. Regardless of the direction of the relationship, programmes to tackle poverty and food insecurity should consider incorporating promotion of mental health. For instance, child nutrition programmes in Asia should promote maternal mental health, taking into consideration the fact that maternal CMDs and poor child nutrition status are closely related [30].

17.8.3

The most encouraging fact is that low education is a potentially preventable risk factor. Promotion of general education is a key factor in tackling different social and health concerns. This holds true for all societies irrespective of their levels of development. Education has different levels. School education is certainly one level. This would increase social opportunities and access to education, but also the quality and the completion rate of mandatory education. Educating and training health professionals is an intervention that could also substantially impact on the identification and the treatment of people with CMDs. This includes both primary care physicians

233

Special needs groups

Some groups that are more at risk of developing CMDs than others. Women and ethnic minorities are two paradigmatic populations. Programmes to reduce the burden of CMD in women should target, among others, poverty, women exposed to violence and those with chronic physical illness. Moreover, the clinical assessment of CMD in women must include exploration of violence and other forms of gender disadvantage. CMDs in ethnic minorities should be better understood, particularly underrecognition or misinterpretation of symptoms by health professionals.

FUTURE RESEARCH

The issues to put on the research agenda are deducible from the above. First of all, vulnerable groups and

their relationship to CMDs must be better understood. There is no clear model available on how these factors

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are related and what the importance of each of these variables is. Second, we need longitudinal studies to determine causal relationships between CMDs and factors known to be related to these disorders. These would open the field for clearly tailored interventions. Third, research should clarify how CMDs could be destigmatized. There is a stigma attached to CMDs in that they are not regarded as ‘proper illnesses’, especially among the general population. This might have an influence on the poor identification in primary care and further on the poor treatment rates seen in these disorders. A better understanding of CMDs would not only help those affected but also those around them, carers, health services, public health and the wider society, by improving physical and mental health, psychosocial well-being and social inclusion for a much marginalized group. To sum up, CMDs are highly prevalent, but underand misidentified. They are insufficiently treated and often lead to sickness and disability. This is a finding that holds true independent of the cultural background. Although there are some known potentially modifiable stressors, among them education, poverty and food insecurity, more research is needed to understand causal relationships as a basis for developing interventions.

6.

7.

8.

9.

10.

11.

REFERENCES 1. Goldberg, D. and Huxley, P. (1992) Common Mental Disorders: A Biosocial Model, Tavistock/Routledge, London, pp. 7 8. 2. Koopmans, G. T., Donker, M. C. and Rutten, F. H. (2005) Common mental disorders and use of general health disorders: a review of the literature on popula tion based studies. Acta Psychiatrica Scandinavica, 111 (5), 341 350. 3. Lahelma, E., Laaksonen, M., Martikainen, P. et al. (2006) Multiple measures of socioeconomic circum stances and common mental disorders. Social Science and Medicine, 63, 1383 1399. 4. Murray, C. J. and Lopez, A. D. (1997) Global mortality, disability, and the contribution of risk factors: Global Burden of Disease Study. Lancet, 349, 1436 1442. 5. Ormel, J., Von Korff, M., Ustun, T. B. et al. (1994) Common mental disorders and disability across cultures:

12.

13.

14.

15.

results from the WHO Collaborative Study on Psycho logical Problems in General Health Care. Journal of the American Medical Association, 272, 1741 1748. Ustun, T., Sartorius, N., Costa e Silva, J. et al. (1995) Conclusions, in Mental Illness in General Health Care: An International Study (eds T. B. Ustun and N. Sartorius), John Wiley and Sons, Ltd, Chichester, pp. 371 375. Kessler, R. C., Chiu, W. T., Demler, O. et al. (2005) Prevalence, severity, and comorbidity of 12 month DSM IV disorders in the National Comorbidity Survey Replication. Archives of General Psychiatry, 62, 617 627. Singleton, N., Bumpstead, R., O’Brien, M. et al. (2003) Psychiatric morbidity among adults living in private households 2000. Office for National Statistics. Inter national Review of Psychiatry, 15, 65 73. Kessler, R. C., McGonagle, K. A., Zhao, S. et al. (1994) Lifetime and 12 month prevalence of DSM III R psy chiatric disorders in the United States. Results from the National Comorbidity Survey. Archives of General Psychiatry, 51, 8 19. Melzer, D., Buxton, J. and Villamil, E. (2004) Decline in CMD prevalence in men during the sixth decade of life. Evidence from the National Psychiatric Morbidity Survey. Social Psychiatry and Psychiatric Epidemiol ogy, 39, 33 38. Melzer, D., Fryers, T. and Jenkins, E. (eds) (2004) Social Inequalities and the Distribution of the Common Mental Disorders: A Report to the Department of Health Policy Research Programme, Psychology Press, London. Patel, V., Todd, C., Winston, M. et al. (1998) Outcome of common mental disorders in Harare, Zimbabwe. British Journal of Psychiatry, 172, 53 57. Cooper, C., Bebbington, P. E., Meltzer, H. et al. (2008) Depression and common mental disorders in lone parents: results of the 2000 National Psychiatric Morbidity Survey. Psychological Medicine, 38, 335 342. Patel, V., Kirkwood, B. R., Pednekar, S. et al. (2006) Risk factors for common mental disorders in women. Population based longitudinal study. British Journal of Psychiatry, 189, 547 555. Patel, V., Kirkwood, B. R., Pednekar, S. et al. (2006) Gender disadvantage and reproductive health risk fac tors for common mental disorders in women: a com munity survey in India. Archives of General Psychiatry, 63, 404 413.

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16. Horwath, E., Johnson, J. and Hornig, C. D. (1993) Epidemiology of panic disorders in African Ameri cans. American Journal of Psychiatry, 150, 465 469. 17. Araya, R., Montgomery, A., Rojas, G. et al. (2007) Common mental disorders and the built environment in Santiago, Chile. British Journal of Psychiatry, 190, 394 401. 18. Haynes, J. C., Farrell, M., Singleton, N. et al. (2005) Alcohol consumption as a risk factor for anxiety and depression: results from the longitudinal follow up of the National Psychiatric Morbidity Survey. British Journal of Psychiatry, 187, 544 551. 19. Das Munshi, J., Goldberg, D., Bebbington, P. E. et al. (2008) Public health significance of mixed anxiety and depression: beyond current classification. British Jour nal of Psychiatry, 192, 171 177. 20. McCrone, P., Dhanasiri, S., Patel, A. et al. (2008) Paying the Price: The Cost of Mental Health Care in England to 2026, King’s Fund, London. 21. Ludermir, A. B. and Lewis, G. (2001) Links between social class and common mental disorders in Northeast Brazil. Social Psychiatry and Psychiatric Epidemiol ogy, 36, 101 107. 22. Patel, V. and Kleinman, A. (2003) Poverty and common mental disorders in developing countries. Bulletin of the World Health Organization, 81, 609 615. 23. Pothen, M., Kuruvilla, A., Philip, K. et al. (2003) Common mental disorders among primary care atten ders in Vellore, South India: nature, prevalence and risk factors. International Journal of Social Psychiatry, 49, 119 125. 24. Ludermir, A. B., Schraiber, L. B., D’Oliveira, A. F. et al. (2008) Violence against women by their intimate partner and common mental disorders. Social Science and Medicine, 66, 1008 1018.

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25. Lopes, C. S., Faerstein, E., Chor, D. and Werneck, G. L. (2008) Higher risk of common mental disorders after experiencing physical violence in Rio de Janeiro, Brazil: the Pro´ Sau´de Study. International Journal of Social Psychiatry, 54, 112 117. 26. Ludermir, A. B. and Lewis, G. (2005) Is there a gender difference on the association between informal work and common mental disorders? Social Psychiatry and Psychiatric Epidemiology, 40, 622 627. 27. Shah, A. (2003) Ethnicity and the Common Mental Disorder. Social Inequalities and the Distribution of the Common Mental Disorders: A Report to the De partment of Health Policy Research Programme, Psy chology Press, London. 28. Bhui, K., Bhugra, D., Goldberg, D. et al. (2001) Cul tural influences on the prevalence of common mental disorders, general practitioners’ assessments and help seeking among Punjabi and English people visiting their general practitioner. Psychological Medicine, 31, 815 825. 29. Stewart, R. C., Umar, E., Kauye, F. et al. (2008) Maternal common mental disorder and infant growth a cross sectional study from Malawi. Maternal and Child Nutrition, 4, 209 219. 30. Hadley, C., Tegegn, A., Tessema, F. et al. (2008) Food insecurity, stressful life events and symptoms of anxiety and depression in East Africa: evidence from the Gilgel Gibe growth and development study. Jour nal of Epidemiology and Community Health, 62, 980 986. 31. Harpham, T., Huttly, S., De Silva, M. J. and Abramsky, T. (2005) Maternal mental health and child nutritional status in four developing countries. Jour nal of Epidemiology and Community Health, 59, 1060 1064.

18 Suicide Gwendolyn Portzky and Kees van Heeringen Department of Psychiatry and Medical Psychology, University Hospital, Gent, Belgium

18.1

INTRODUCTION

An abundance of research has led to a greater understanding of the complex aetiology of suicidal behaviour. There is clear evidence that suicidal behaviour is caused by multiple factors such as an underlying trait vulnerability, which includes biological and psychological characteristics as well as state-dependent

factors, including social variables. Many studies have addressed the relationship between suicidal behaviour and social factors, showing that such variables influence suicide risk. In addition, suicide rates are commonly used by sociologists as indicators of social disintegration, distress and quality of life [1].

18.2 CLASSICAL SOCIOLOGICAL DETERMINANTS OF SUICIDAL BEHAVIOUR: DIVORCE, RELIGIOUS AFFILIATION AND UNEMPLOYMENT The classical sociological approach to the study of suicidal behaviour is almost synonymous with the theories of Durkheim [2]. Durkheim was the first to state that differences in suicide rates between countries indicate a considerable influence of social organization and society on individual behaviour. According to Durkheim’s vision individual suicidal behaviour is the result of individual factors and circumstances, while the variations in the prevalence of suicide are explained by the moral and psychological climate in the society, which affects the reactions to problems and pain [3]. Durkheim considered humans

as social beings who need to believe in a community, be part of it and have the norms and rules of the community for support. Low social integration (the extent to which people are joined together by social networks) and low social regulation (the influence of tradition, norms and habits on behaviour) thus have a negative impact on suicide rates. Social integration, as defined by Durkheim, was associated with marriage/ divorce, (un)employment and religious affiliation, which is possibly one of the reasons why Durkheim’s work has often been a target of criticism; aside from taking his work too literally, critics have replicated his

Principles of Social Psychiatry, second edition Edited by Craig Morgan and Dinesh Bhugra Ó 2010 John Wiley & Sons, Ltd.

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analyses using modern data, but divorce or religious affiliation are obviously not the same in modern, Western society as they were in Catholic nineteenth century France [3]. Notwithstanding the criticism, modern-day studies still often focus on divorce, religious affiliation and unemployment as indicators of social integration. Such studies have often shown ambiguous results. Using a time series analysis to examine the effect of divorce on suicide in Finland, Stack [4] found a positive correlation between divorce and suicide rates. However, a similar analysis in Japan did not confirm this relationship between divorce and suicide, although a general association with family integration was found [5]. A review by Stack [6] showed that the majority (86.4%) of 37 cross-sectional studies supported the hypothesis that the suicide rate among divorced persons is higher than the rate among married persons, with the exception of younger age groups in which both marriage and divorce are uncommon. The study of Caces and Harford [7] found no effect of the divorce rate on the frequency of suicide while Gunnell and colleagues [8] identified the increasing divorce rate as one of the explanations for the increasing suicide rate in young males in England and Wales. According to Stack [9], the association between divorce and suicide may be explained by the fact that divorced people have higher levels of suicidogenic conditions compared to the general population. These suicidogenic conditions include: an increased risk of depression, increased financial pressures, increased risk of alcohol abuse during the divorce process, and increased risk of feelings of emotional hurt, shame and guilt. The relation between religion and suicide has been a matter of debate. The classic Durkheimian premise states that religious affiliation is associated with high social integration, which protects against suicide. However, studies investigating such a positive influence on suicidal behaviour have often shown conflicting results, with several studies showing a positive influence of religion on suicidal behaviour [10 12] and other studies showing no effect [13 15]. More recently, it has become clear that the relation between religion and suicidal behaviour is complex and that other factors than mere social integration, or the sheer number of beliefs and practices, play a role in this complex association. For example, the study of Dervic

and colleagues [16], which examined the association between religious affiliation and suicide attempts in patients with depression, showed greater moral objections to suicide and lower aggression levels in religiously affiliated subjects. These may serve as protective factors against suicide attempts, whereas religious affiliation may not. Another example of the complicated role of religion in suicidal behaviour can be found in Asian and Chinese societies. These societies have important differences in suicide patterns compared to most Western countries, including a higher female suicide rate than male suicide rate and very high rural suicide rates. These differential suicide patterns have been partly linked to the complex role of religion and its effect on the traditions, norms and habits in the society. China is not a religious society and going to church is not popular, which could result in a lack of social support and contact with the community. However, traditional Chinese culture is founded by the three important Asian religions: Buddhism, Taoism and Confucianism. These religions differ strongly from Western religions with regard to the afterlife, rituals, organization and the existence of one God, and as a result have different attitudes regarding suicide. For instance, Buddhism considers self-sacrifice for religious reasons as honourable, and although Confucianism does not allow suicide because it deplores damaging physical attractiveness, it does tolerate suicide as an expression of high moral or emotional protest [17]. Buddhism and Taoism also imply the reincarnation of the soul, which results in the Chinese belief that the next life is formed by the previous life and that suicide is a possibility to receive a new, better life. In Japan suicide is generally considered as a honourable act of selfsacrifice, which originates from Confucianism, stating that being dutiful, obedient and loyal to the group is more important than the individual [18]. It is thus clear that religious beliefs are associated with norms, values and attitudes in Asian societies as these societies can be described as collectivistic societies, while Western nations are traditionally considered as individualistic cultures. Individualism has been associated with psychological disadvantages and mental health problems due to the evidence that individualistic values are related to smaller and less satisfying social support networks, less adaptive emotional coping, lower help-seeking behaviour and

SUICIDE

higher levels of hopelessness and suicidal ideation [19]. Members of individualistic societies are known to emphasize values such as self-direction, autonomy and universalism while members of collectivistic societies strongly focus on tradition and conformity. Although China has traditionally been described as collectivistic and Western societies as individualistic, research has shown that Chinese people are indeed strongly collectivistic within family relations and clans but are more individualistic on a community and society level compared to Americans [20]. It can be suggested that Chinese collectivism is primarily related to strong familial relations and marriage but not to the community, which also implies certain risk factors may have a greater impact as community networks and support are often limited. Although family and marriage are highly regarded in Chinese society, Chinese suicides may well be related to adverse familial and relational triggers [21]. The Chinese social importance of family is also related to limited social contacts outside the family. This would especially apply to young rural women who, as a result, are entirely dependent on resources provided by the family. The findings regarding the association between unemployment and suicidal behaviour are more homogeneous. The majority of these studies indicate that unemployment is associated with an increased risk of suicidal behaviour [22]. More ambiguous results are, however, found in aggregate longitudinal studies in which the effect of unemployment on suicide rates is examined. Platt and Hawton [22] found that, of the 29 studies looking at male suicide rates as the outcome variable, 22 reported positive associa-

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tions (sometimes only for specific sociodemographic subgroups), 2 reported negative findings and 15 reported nonsignificant findings (the number adds up to more than 29 because several studies reported multiple and differing associations arising from the disaggregation of the data). More nonsignificant associations were found in females. The relationship between unemployment and suicidal behaviour is thus complex as overall suicide rates are often found not to fluctuate with the unemployment rate, as would be expected. The ‘cry of pain model’ of Williams [23] may, however, explain some of the controversies regarding suicidal behaviour and unemployment. Although this model also considers psychological and biological aspects, there is a crucial combination with social aspects including social comparison. Williams states that individuals are sensitive to signals from their social environment of threats to their rank within the group and to their acceptance as part of the group. Such events are perceived as a sign that they are a loser and are defeated in an important aspect of their lives. According to Williams the effects of social comparison are strong and have an effect on psychopathology and suicidal behaviour, but it is the comparative effect that determines the amount of stress or depression and not the absolute effect. It is thus the distribution of inequality that signals a threat to a person’s rank within the group. As a result, unemployment has less capacity to cause depression and suicidal behaviour when individuals perceive everyone else to be in the same situation [24], which could explain why high unemployment rates are not always associated with high suicide rates.

18.3 MODERN-DAY SOCIAL DETERMINANTS OF SUICIDAL BEHAVIOUR: SOCIAL PERFECTIONISM, SOCIAL SUPPORT AND (IM)MIGRATION Another psychological model for suicidal behaviour that conceptualizes suicidal behaviour as driven by a need for social approval is Baumeister’s [25] ‘escape from self model’. This model states that a person’s failure to attain (either self or) socially imposed unrealistic standards induces a chainlike process including self-blame, negative self-awareness, negative affect and a desire to escape via suicidal behaviour.

Recent studies have therefore examined the association between social perfectionism and suicidal behaviour. Perfectionism has been described as having three dimensions: self-oriented perfectionism (the standards individuals set for themselves), other-oriented perfectionism (high expectations and standards for other people’s behaviour) and socially prescribed perfectionism (beliefs about the

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excessive expectations individuals perceive significant others have of them) [26]. Socially prescribed perfectionism appears to be the most robust correlate of suicidal behaviour as it has often been associated with suicidality. Donaldson, Spirito and Farnett [27] examined socially prescribed perfectionism in adolescent suicide attempters and found that this dimension of perfectionism was highly correlated with hopelessness. A study by Dean and Range [28] also showed that socially prescribed perfectionism was the only dimension of perfectionism that showed a significant association with suicidal behaviour. It is, however, important to note that the vast majority of studies examining the association between socially prescribed perfectionism and suicidal behaviour indicate that this correlation is indirect and thus mediated through other variables. The study of Rasmussen, O’Connor and Brodie [29] showed that socially prescribed perfectionism interacted with overgeneral autobiographical memory of both positive and negative memories to predict suicidal ideation and depression. The abovementioned relationship between socially prescribed perfectionism and hopelessness found by Donaldson, Spirito and Farnett et al. [27] in young suicide attempters was also attenuated after the effects of depressive cognitions were controlled for. There is also evidence indicating that there is an interactive effect of socially prescribed perfectionism and positive future thinking in relation to suicidal behaviour. O’Connor and colleagues [26] showed in repetitive suicidal self-harm patients that the interaction between socially prescribed perfectionism and positive future thinking predicted psychological well-being two months following a suicidal episode. The best outcome in terms of hopelessness and suicidal thinking was found in patients who reported low social perfectionism and high positive future thinking following a suicidal episode. Importantly, there was no such positive change in hopelessness and suicidal thinking in patients who reported high social perfectionism.

18.3.1

Social support as modern-day equation of social integration

More recent studies regarding social integration and its relation to suicidal behaviour have often used social

support to approximate social integration [1]. Social support provided by family and friends may constitute important resources for coping and may therefore be associated with suicidal behaviour. The higher suicide rates in males compared to females (which is universal, with the exception of China) have also been linked to social support issues. M€ollerLeimb€uhler [30] associates the male vulnerability for premature death by suicide with the fact that males tend to be less socially integrated, have less social support and are emotionally more isolated. It is thus not surprising that many studies regarding social support and the influence on suicidal behaviour have supported Durkheim’s social integration theory of suicide. A study examining the role of social relationships as predictors of depression and suicidal ideation in older adults indicated that lower levels of social support were associated with higher levels of depression and suicidal ideation. Interestingly, a sense of belonging to the community was not identified as a predictor of depression and suicidal ideation [31]. The results of a study examining the changing suicide rates in Norway identified the weakening of family integration as a very important factor associated with the increasing post-war suicide rates [1]. A similar study in Cyprus examining the low suicide rates in this country concluded that strong family relationships result in high social support and low social isolation, which could be associated with the low suicide rates [32]. The study of Range and colleagues [33] also found that factors associated with social support and social networks can be identified as a possible explanation for the different suicide figures among the four most important ethnic groups in the US. African Americans have a lower suicide rate, with especially African American women showing a very low suicide rate. The authors suggest that religion, extended family network and the important role of the elderly are among the possible sociocultural variables, which could be responsible for the low suicide rate in this group. Hispanic Americans also show lower suicide rates compared to non-Hispanic Americans. Possible sociocultural protective factors in Hispanic American society are the strong family networks along with the important ‘extended’ family connectedness and strong Catholic religion associated with the strong emphasis on

SUICIDE

‘fatalismo’, which implies a lack of control when facing adverse events. In contrast, the suicide rate in Native Americans is 1.6 4.2 times higher than the general suicide rate in the US. It is assumed that disruption of the tribal unity, the absence of social integration and alcohol as a primary coping response are possible sociocultural factors associated with this elevated suicide rate. Asian Americans are also found to have a lower suicide rate, which may be explained by the three important Asian religions (Confucianism, Buddhism and Taoism), de-emphasizing the individual compared to the group and the different attitudes towards suicide among Asian Americans, which have been described above. These studies thus indicate that cultural differences in mental health, well-being and suicidal behaviour are related to differences in social support and integration. Social support issues have also been identified as one of the factors distinguishing suicide attempters from suicide ideators. A study of Fairweather and colleagues [34] in an Australian community sample found that suicide ideators and attempters have comparable levels of depression and anxiety, but also showed that those who attempt suicide are more often unemployed, have more physical ill-health and experience more negative interactions with friends, resulting in less social support. This study thus shows that the differentiation between ideation and attempts is independent of mental disorders but related to physical health problems and social support issues. It is indeed important to question whether social support and social integration have an independent association with suicidal behaviour or whether they are merely related through other factors such as mental disorders. Studies on the relationship between social support or social integration and suicidal behaviour have often controlled inadequately for the effects of mental disorders, but the study of Duberstein et al. [35] showed some important results regarding this issue. Their psychological autopsy study showed that poor social integration is associated with increased suicide risk over and above the effects of mood disorder and occupational status. The authors conclude that the association between a lack of social interaction and suicide is robust and largely independent of the presence of mental disorders.

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Notwithstanding this latter finding, which points at an independent effect of social integration, it is important to also indicate that not all studies find a significant association between social support and suicidal behaviour. A study in a population sample of 2219 Chinese people in Hong Kong examined the contribution of hopelessness, depression and social factors to suicidal ideation and suicide attempts [36]. Multivariate modelling showed that about 40% of suicidal ideation and suicide attempts was attributable to depression and about 20% was attributable to hopelessness. This impact of depression and hopelessness was, however, not affected by social support. There was also a significant contribution albeit to a lesser extent of marital dissolution, along with drug abuse. The authors conclude that hopelessness and depression are important contributors to suicidality and that social support seems to have little effect as buffer. As it has been mentioned before that Asian and especially Chinese people have important differences in suicide patterns compared to Western countries, these results have to be interpreted with caution and cannot simply be adopted to Western individuals.

18.3.2

Migration

As a consequence of the still increasing migration in many countries, many individuals are faced with quickly changing social networks and the challenge to integrate in new societies. Migration can be described as an important interference in a person’s social network and integration system. It is known to disrupt important ties between the individual and his or her social network, including relationships with family, friends, colleagues and neighbours. Immigration is known to add additional challenges such as adapting to different habits, norms and values, languages, dress style and diets. According to the classic Durkheimian view, these adversities in the social integration system should have a negative effect on suicide rates and should result in increased suicide rates in migrants. There are indeed several studies pointing at an increased risk of suicide in migrants. The results of a study examining the correlation between migrant inpatients in Germany and nonfatal suicidal acts showed that Mediterranean immigrant

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inpatients had a higher prevalence of suicide attempts (15.3%) compared to German inpatients (8.9%) [37]. A highly elevated proportion of suicide by migrants is found in Saudi Arabia, with migrants comprising 77% of the suicide sample. Asian and Indian migrants represented the majority of this group [38]. The cross-cultural breakdown of Swedish suicide rates also points to an overrepresentation of migrant suicide [39]. Migrants from several countries such as Russia, Finland, Germany, Denmark and Norway showed elevated suicide rates compared with their respective country of origin. The suicide risk for immigrants appears to be 1.5 times higher compared to native Swedes. Dorling and Gunnell [40] examined social integration in Britain between 1980 and 2000 by use of three components: migration, unemployment and being single. This study identified migration as a significant and stable predictor of local suicide rates over the two decades. It can be concluded from these studies that migrants tend to have an elevated risk for suicide. However, some authors indicate that the increased

18.4

SOCIAL VARIABLES IN YOUNG PEOPLE

The section above regarding migration indicated that young males are often identified as a risk group, and are particularly likely to be affected by social change. It thus seems relevant to examine the role of social determinants of suicidal behaviour in this age group. Epidemiological and psychological autopsy studies have consistently shown that many social or environmental variables are associated with youth suicide. These variables can be divided into: familial characteristics, (mainly interpersonal) life events, social support by family and peers, and exposure to suicidal behaviour by others.

18.4.1

risk can only be found in certain demographic groups. Young males until the age of 35 have often been described as the risk group most likely to be affected by social change [9, 41]. Some of the variation in the strength of the effect of migration on suicide can also be explained by the ethnic background. Trovato and Jarvis [42] indicate that immigrant groups with Catholic backgrounds have greater abilities to integrate in new societies as they provide strong community ties for their members. Migrant studies are also an informative method for examining the genetics of suicide. Voracek and Loibl [43] recently conducted the first meta-analysis of the associations of migrant and country-of-birth suicide rates and found a strong positive association across 33 studies, containing data for nearly 50 migrant nationalities in 7 host countries located in 3 continents. This finding indicates that migrants have, in their host country, a similar risk of suicide compared to their homeland, which hints at possible underlying genetic vulnerabilities for suicide.

Familial characteristics

Several familial characteristics are associated with suicide in young people. Regarding family structure and living situation, there is evidence indicating that suicide cases come from broken families due to parental divorce more often than community con-

trols [44 47]. The review of Evans, Hawton and Rodham [48] indicated, however, that the evidence regarding the association between parents’ cohabitational status and suicidal behaviour in youngsters is inconclusive and that the possible relationship is indirect. Bridge, Goldstein and Brent [49] further elaborate the association and conclude from their review that the relationship between divorce and suicidal behaviour may be explained by the increased prevalence of parental psychopathology, which could account for the increased divorce rate. Indeed, several psychological autopsy studies of youth suicide have identified parental and familial psychopathology, in particular depression and substance abuse, as a risk factor for youth suicide [44 47]. The study of Brent, Perper and Goldstein [50] even identified parental psychopathology as an independent risk factor for suicide after controlling for psychopathology in the adolescent, but this could not be replicated by Gould et al. [45]. With regard to familial relationships, there are many reports of a higher prevalence of parent child

SUICIDE

relationship difficulties or conflicts with parents in young suicide victims [44, 45, 47, 49], not only in comparison with community controls but also when compared to suicidal psychiatric inpatient controls [49]. According to Evans, Hawton and Rodham [48], the relationship between family discord and suicidal phenomena is direct. It can be assumed that several family-related characteristics are related to suicidal behaviour in young people, but that the nature of the relationship still is a matter of debate. Marttunen, Aro and L€ onnquist [47] concluded that family-related events such as divorce or death can be considered more as general risk factors for the development of mental health problems than as specific risk factors for suicide.

18.4.2

Life events

As vulnerability and sensitivity to certain stressful life events, indicating signals of defeat, are associated with an increased risk of suicidal behaviour, it is not surprising that stressful and traumatic life events are crucial in the pathway leading to suicidal behaviour. Several controlled studies have indeed shown that suicide victims experience more stressful life events than community controls [44, 51]. Other controlled studies have provided more information regarding the type of life events and indicated that interpersonal problems are most often identified in young people. The studies of Houston, Hawton and Shepperd [52], Gould et al. [45] and Martunnen, Aro and L€ onnquist [47] indicated that relationship difficulties are a common problem in the lives of young suicide victims. However, the comparison between suicide victims and suicidal psychiatric inpatients in the study of Brent, Perper and Goldstein [50] could not find any differences regarding conflicts with partners. Legal problems and/or school-related problems have also often been related to youth suicide [45, 52] although the Brent, Perper and Goldstein study [50] identified more school problems in suicidal control patients than in suicide victims. Traumatic experiences, such as the loss of an important person and sexual or physical abuse have also been related to suicidal behaviour in young people [44, 46, 53, 54].

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Stressful life events can often be considered as precipitants of adolescent suicidal behaviour, triggering the behaviour instead of causing the suicidal act. Cooper, Appleby and Amos [55] examined the prevalence, timing and type of life events precipitating suicide in young people with and without mental disorders and found that youth suicide is associated with life events in the last 3 months before the suicide and mainly in the last week. In particular, interpersonal and forensic (arrest, conviction) life events were more often found in suicide victims. Comparison between suicide victims with and without psychiatric disorder showed that more life events within the week prior to the suicide were reported in suicide victims without a psychiatric disorder.

18.4.3

Social support by family and peers

As young people often experience negative life events, social support appears to be crucial at this young age as a buffer against stress. Social support can be provided by family or peers, but there is evidence indicating that there is a difference in the effect on suicidal behaviour according to the source of social support. In adolescents, low support from the family is found to be most detrimental as it predicts suicidality at follow-up after 6 months and even into adulthood [56, 57]. Cumsille and Epstein [58] found that low support from the family is more strongly related to depression than low support from other relationships. A study in Hong Kong adolescents confirmed this finding as it showed that suicidality, which was strongly predicted by depression, substance use and death attitude, was lowered by support from family and friends, but the effect of family support was much stronger than support from peers [59]. Similar findings were found in the study by Kidd and colleagues [60], which also identified positive parent relations as the most consistent protective factor for adolescent suicide attempts. Interestingly, for young males with a history of suicide attempts and poor peer relations, an interactive effect of family relations and school relations was found as the protective effect of parental support was augmented by positive school relations.

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There is also evidence indicating that in community samples peer support may compensate for low family support, but this is not the case in more impaired youngsters [58, 61]. The review of Evans, Hawton and Rodham [48] showed that having unsupportive parents is directly associated with suicidality in adolescents. Their findings regarding peer support suggest that negative peer relationships can be a risk factor for suicidality but that positive peer relationships are not necessarily protective. The findings of the study by Kerr, Preuss and King [62] suggest that young males and females have different associations between social support and suicidality and that these gender-specific associations have to be considered. The results showed that female adolescents’ perceptions of low family support are related to higher levels of hopelessness, depressive symptoms and suicidal ideation. It was, however, interesting that for adolescent males higher levels of peer support were associated with greater levels of hopelessness, depressive symptoms and suicidal ideation, which was independent of family support. The authors conclude that peer support is sometimes associated with more dysfunction in adolescents and that support from peers as perceived by adolescents may sometimes actually include shared antisocial behaviour and maladaptive emotional coping. The findings also showed that for both genders low family support was associated with more externalizing behaviour and substance abuse, while more support from peers was also associated with more externalizing behaviour problems.

18.4.4

Exposure to suicidal behaviour by others

The study of Houston, Hawton and Shepperd [52] identified exposure to suicidal behaviour by family members and/or friends in 41% of the young suicide victims. In particular, suicidal behaviour in family members has often been related to suicidal behaviour in young people [44, 45]. A psychological autopsy study in adolescents indicated that suicidal behaviour by family members alone could be identified in almost half of the sample [63]. According to Gould, Shaffer and Greenberg [64] this may reflect a genetic

influence rather than a general indication of family problems and psychopathology, as a family history of suicidal behaviour has been identified as an independent risk factor after controlling for adverse parent child relationships and parental psychopathology [45, 65]. Evans, Hawton and Rodham [48] differentiate between completed suicide in the family and attempted suicide by family members as only a family history of attempted suicide is directly associated with suicidal behaviour in young people, whereas completed suicide in the family is not independently associated, which may be related to its relative rarity. De Leo and Heller [66] found similar results when data from four large studies were examined. With regard to the adolescent group, they found that exposure to nonfatal suicidal behaviour in family and friends was predictive of suicidality, even after controlling for exposure to fatal suicidal behaviour. The reverse relation, in which fatal suicidal behaviour predicts suicidality when exposure to nonfatal suicidal behaviour is controlled for, could not be found. Although less commonly examined, similar results are found with regard to suicidal behaviour by friends, which has also been associated with suicidal behaviour in adolescents [52, 67]. A casecontrol comparison of young suicide victims with matched psychiatric control patients showed that suicide victims had been exposed more frequently to suicidal behaviour by friends and through media, which will be discussed below [68]. However, there have also been reports indicating that exposure to suicide in a friend is not associated with an increased incidence of suicidal behaviour among young people [69, 70]. Evans, Hawton and Rodham [48] conclude that there may be a possible direct association with attempted suicide but not with completed suicide. There is evidence indicating that exposure to suicidal behaviour through the media (newspaper, fictional and nonfictional television reports) may influence the occurrence and characteristics of suicidal behaviour. The above-mentioned psychological autopsy study in adolescents showed that 37% of the suicide victims had been exposed to suicidal behaviour through the media, which was very high compared with the 5.3% in the group of control

SUICIDE

patients [68]. Hawton and colleagues [71] examined the effect of the broadcasting of a serious paracetamol overdose in a popular fictional television drama and found an increase of 17% in the number of selfpoisoning episodes presented to the hospital in the first week after the television show and an increase of 9% in the second week. Gould and Shaffer [72] monitored the incidence of suicidal behaviour in

18.5

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adolescents two weeks before and after the broadcasting of four fictional movies regarding suicide. A significant increase in the number of both suicide attempts and completed suicides was found after the broadcasting. Young people appear to be especially vulnerable to the influence of media coverage of suicidality [73].

CONCLUSIONS

It is clear that social factors play a role in the complex aetiology of suicidal behaviour. Although divorce, religious affiliation and unemployment can be described as more classical sociological determinants of suicidal behaviour, which were already identified by Durkheim in the nineteenth century, they are still often a target in modern-day studies. The results are not always homogeneous, especially with regard to religious affiliation, but the findings do suggest an interaction, which seems to be complex and influenced by other related factors. More recently, there has been a focus on other social determinants such as social perfectionism, social support and migration, which all seem to be associated with suicidal behaviour. Social support issues even seem to be related to gender and cultural differences in the prevalence of suicide. There is further evidence indicating that young people are especially vulnerable to adverse social situations and social change. In particular, variables such as adverse familial characteristics, interpersonal life events, social support by family and peers, and exposure to suicidal behaviour by others have been identified as being related to suicidal behaviour in young people. Notwithstanding the abundance of studies pointing at an important relation between social factors and suicidal behaviour, it has to be emphasized that social factors can only explain a part of the complex aetiology. Other factors, such as biological and psychological determinants, are involved in making an individual vulnerable to handling adverse social situations and social change via suicidal behaviour.

REFERENCES 1. Barstad, A. (2008) Explaining changing suicide rates in Norway 1948 2004: the role of social integration. Social Indicators Research, 87, 47 64. 2. Durkheim, E. (1897/1951) Suicide, Free Press, New York. 3. Bille Brahe, U. (2000) Sociology and suicidal behaviour, in The International Handbook of Sui cide and Attempted Suicide (eds K. Hawton and K. van Heeringen), John Wiley & Sons, Ltd, Chichester. 4. Stack, S. (1992) The effect of divorce on suicide in Finland a time series analyses. Journal of Marriage and the Family, 54, 636 642. 5. Stack, S. (1992) The effect of divorce on suicide in Japan a time series analyses, 1950 1980. Journal of Marriage and the Family, 54, 327 334. 6. Stack, S. (1995) Divorce and suicide: a review of 132 studies, 1880 1995. Paper presented at the annual meeting of the Michigan Association of Suicidology, Holland, Michigan. 7. Caces, F. and Harford, T. (1998) Time series analysis of alcohol consumption and suicide mortality in the Uni ted States, 1934 1987. Journal of Studies on Alcohol, 59, 455 461. 8. Gunnell, D., Middleton, N., Whitley, E. et al. (2003) Why are suicide rates rising in young men but falling in the elderly? A time series analysis of trends in England and Wales 1950 1998. Social Science and Medicine, 57, 595 611. 9. Stack, S. (2000) Suicide: a 15 year review of the socio logical literature. Part II: modernization and social integration perspectives. Suicide and Life Threatening Behaviour, 30, 163 176.

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10. Clarke, C., Bannon, F. and Denihan, A. (2003) Suicide and religiosity Masaryk’s theory revisited. Social Psychiatry and Psychiatric Epidemiology, 38, 502 506. 11. Hilton, S., Fellingham, G. and Lyon, J. (2002) Suicide rates and religious commitment in young adult males in Utah. American Journal of Epidemiology, 155, 413 419. 12. Neeleman, J., Halpern, D., Leon, D. and Lewis, G. (1997) Tolerance of suicide, religion and suicide rates: an ecological and individual study in 19 Western coun tries. Psychological Medicine, 27, 1165 1171. 13. Malone, K., Oquendo, M., Haas, G. et al. (2000) Protective factors against suicidal acts in major depression: reason for living. American Journal of Psychiatry, 175, 1084 1088. 14. Kelleher, M., Chambers, D. and Corcoran, P. (1999) Suicide and religion in Ireland: an investigation of Thomas Masaryk’s theory of suicide. Archives of Suicide Research, 5, 173 180. 15. Lester, D. (1996) Religion and suicide. Psychological Reports, 78, 1090 1090. 16. Dervic, K., Oquendo, M., Grunebaum, M. et al. (2004) Religious affiliation and suicide attempt. American Journal of Psychiatry, 161, 2303 2308. 17. Zhang, J., Conwell, Y., Zhou, L. et al. (2004) Culture, risk factors and suicide in rural China: a psychological autopsy case control study. Acta Psychiatrica Scandinavica, 110, 430 437. 18. Young, J. (2002) Morals, suicide and psychiatry: a view from Japan. Bioethics, 16, 412 424. 19. Scott, G., Ciarrochi, J. and Deane, F. (2004) Disadvan tages of being an individualist in an individualistic culture: idiocentrism, emotional competence, stress and mental health. Australian Psychologist, 39, 143 153. 20. Zhang, J. (2000) Collectivism or individualism. An analysis of Chinese interactive culture. American Review of China Studies, 1, 57 65. 21. Zhang, J. (1996) Suicide in Bejing, China, 1992 1993. Suicide and Life Threatening Behaviour, 26, 175 180. 22. Platt, S. and Hawton, K. (2000) Suicidal behaviour and the labour market, in The International Handbook of Suicide and Attempted Suicide (eds K. Hawton and K. van Heeringen), John Wiley & Sons, Ltd, Chichester. 23. Williams, M. (1997) A Cry of Pain. Understanding Suicide and Self Harm, Penguin, Harmondsworth. 24. Platt, S. (1984) Unemployment and suicidal behaviour: a review of the literature. Social Science and Medicine, 19, 93 115.

25. Baumeister, R. (1990) Suicide as escape from self. Psychological Review, 97, 90 113. 26. O’Connor, R., Whyte, M., Fraser, L. et al. (2007) Predicting short term outcome in well being following suicidal behaviour: the conjoint effects of social per fectionism and positive future thinking. Behaviour Research and Therapy, 45, 1543 1555. 27. Donaldson, D., Spirito, A. and Farnett, E. (2000) The role of perfectionism and depressive cognitions in understanding the hopelessness experienced by ado lescenct suicide attempters. Child Psychiatry and Human Development, 31, 99 111. 28. Dean, P. and Range, L. (1996) The escape theory of suicide and perfectionism in college students. Death Studies, 20, 415 424. 29. Rasmussen, S., O’Connor, R. and Brodie, D. (2008) The role of perfectionism and autobiographical mem ory in a sample of parasuicide patients an exploratory study. Crisis, 29, 64 72. 30. M€ oller Leimk€ uhler, A. (2003) The gender gap in sui cide and premature death or: why are men so vulner able? European Archives of Psychiatry and Clinical Neuroscience, 253, 1 8. 31. Vanderhorst, R. and McLaren, S. (2005) Social relation ships as predictors of depression and suicidal ideation in older adults. Aging and Mental Health, 9, 517 525. 32. Zacharis, C., Hadjivassilis, V., Madianos, M. et al. (2005) Suicide in Cyprus 1988 1999. European Psychiatry, 20, 110 114. 33. Range, L., Leach, M., McIntyre, D. et al. (1999) Multi cultural perspectives on suicide. Agression and Violent Behaviour, 4, 413 430. 34. Fairweather, A., Anstey, K., Rodgers, B. and Butterworth, P. (2006) Factors distinguishing suicide attempters from suicide ideators in a community sam ple: social issues and physical health problems. Psy chological Medicine, 36, 1235 1245. 35. Duberstein, P., Conwell, Y., Connor, K. et al. (2004) Poor social integration and suicide: fact or artifact? A case control study. Psychological Medicine, 34, 1331 1337. 36. Cheung, Y., Law, C., Chan, B. et al. (2006) Suicidal ideation and suicidal attempts in a population based study of Chinese people. Risk attributable to hope lessness, depression and social factors. Journal of Affective Disorders, 90, 193 199. 37. Grube, M. (2004) Nonfatal suicidal acts in a group of psychiatric inpatients. Situation of Mediterranean immigrants. Nervenarzt, 75, 681 687.

SUICIDE

38. Elfawal, M. (1999) Cultural influence on the incidence and choice of method of suicide in Saudi Arabia. American Journal of Forensic Medicine and Pathology, 20, 163 168. 39. Ferradanoli, M. (1997) A cross cultural break down of Swedish suicide. Acta Psychiatrica Scandinavica, 96, 108 116. 40. Dorling, D. and Gunnell, D. (2003) Suicide: the spatial and social components of despair in Britain 1980 2000. Transactions of the Institute of British Geographers, 28, 442 460. 41. Trovato, F. (1986) The relationships between marital dissolution and suicide: the Canadian case. Journal of Marriage and the Family, 48, 341 348. 42. Trovato, F. and Jarvis, F. (1986) Immigrant suicide in Canada: 1971 and 1981. Social Forces, 65, 433 457. 43. Voracek, M. and Loibl, L. (2008) Consistency of immigrant and country of birth suicide rates: a meta analysis. Acta Psychiatrica Scandinavica, 118, 259 271. 44. Beautrais, A. (2000) Risk factors for suicide and attempted suicide among young people. Australian and New Zealand Journal of Psychiatry, 34, 420 433. 45. Gould, M., Fisher, P., Parides, M. et al. (1996) Psy chosocial risk factors of child and adolescent com pleted suicide. Archives of General Psychiatry, 53, 1155 1162. 46. Brent, D., Perper, J., Moritz, G. et al. (1994) Familial risk factors for adolescent suicide: a case control study. Acta Psychiatrica Scandinavia, 89, 52 58. 47. Marttunen, M., Aro, H. and L€onnqvist, J. (1993) Ado lescence and suicide: a review of psychological autopsy studies. European Child and Adolescent Psychiatry, 2, 10 18. 48. Evans, E., Hawton, K. and Rodham, K. (2004) Factors associated with suicidal phenomena in adolescents: a systematic review of population based studies. Clinical Psychology Review, 24, 957 979. 49. Bridge, J., Goldstein, T. and Brent, D. (2006) Adoles cent suicide and suicidal behaviour. Journal Child Psychology and Psychiatry, 47, 372 394. 50. Brent, D., Perper, J. and Goldstein, C. (1988) Risk factors for adolescent suicide. A comparison of ado lescent suicide victims with suicidal inpatients. Archives of General Psychiatry, 45, 581 588. 51. Cavanagh, J., Owens, D. and Johnstone, E. (1999) Life events in suicide and undetermined death in south east

52.

53.

54.

55.

56.

57.

58.

59.

60.

61.

62.

247

Scotland: a case control study using the method of psychological autopsy. Social Psychiatry and Psychia tric Epidemiology, 34, 645 650. Houston, K., Hawton, K. and Shepperd, R. (2001) Suicide in young people aged 15 24: a psychological autopsy study. Journal of Affective Disorders, 63, 159 170. De Wilde, E. J., Kienhorst, I., Diekstra, R. and Willems, W. (1992) The relationship between adolescent suicidal behavior and life events in childhood and adolescence. American Journal of Psychiatry, 149, 45 51. Shafii, M., Carrigan, S., Whittinghill, J. R. and Derrick, A. (1985) Psychological autopsy of completed suicide in children and adolescents. American Journal of Psy chiatry, 142, 1061 1064. Cooper, J., Appleby, L. and Amos, T. (2002) Life events preceding suicide by young people. Social Psychiatry and Psychiatric Epidemiology, 37, 271 275. King, C., Segal, H., Kaminski, K. et al. (1995) A prospective study of suicidal behaviour following hospitalisation. Suicide and Life Threatening Beha viour, 35, 327. Lewinsohn, P., Rohde, P., Seeley, J. and Baldwin, C. (2001) Gender differences in suicide attempts from adolescence to young adulthood. Journal of the American Academy of Child and Adolescent Psychia try, 40, 427 434. Cumsille, P. and Epstein, N. (1994) Family cohesion, family adaptability, social support, and adolescent depressive symptoms in outpatient clinic families. Journal of Family Psychology, 8, 202 214. Cheng, S. and Chan, A. (2007) Multiple pathways from stress to suicidality and the protective effect of social support in Hong Kong adolescents. Suicide and Life Threatening Behaviour, 37, 187 196. Kidd, S., Henrich, C., Brookmeyer, K. et al. (2006) The social context of adolescent suicide attempts: interac tive effects of parent, peer, and school social relations. Suicide and Life Threatening Behaviour, 34, 386 395. Gauze, C., Bukowski, W., Aquan Assee, J. and Sippola, L. (1996) Interactions between family environment and friendship and associations with self perceived well being during adolescence. Child Development, 67, 2201 2216. Kerr, D., Preuss, L. and King, C. (2006) Suicidal adolescents’ social support from family and peers: gender specific assocations with psychopathology. Journal of Abnormal Child Psychology, 34, 103 114.

248

SOCIAL DETERMINANTS

63. Portzky, G., Audenaert, K. and van Heeringen, K. (2005) Suicide among adolescents. A psychological autopsy study of psychiatric, psychosocial and person ality related risk factors. Social Psychiatry and Psychiatric Epidemiology, 40, 922 930. 64. Gould, M., Shaffer, D. and Greenberg, R. (2003) The epidemiology of youth suicide, in Suicide in Children and Adolescents (eds R. King and A. Apter), Cambridge University Press, Cambridge. 65. Brent, D., Bridge, J., Johnson, B. A. and Connolly, J. (1996) Suicidal behaviour runs in families: a controlled family study of adolescent suicide victims. Archives of General Psychiatry, 53, 1145 1152. 66. de Leo, D. and Heller, T. (2008) Social modelling in the transmission of suicidality. Crisis, 29, 11 19. 67. Rey Gex, C., Narring, F., Ferron, C. and Michaud, P. (1998) Suicide attempts among adolescents: preva lence, associated factors and comorbidity. Acta Psychiatrica Scandinavica, 98, 28 33. 68. Portzky, G., Audenaert, K. and van Heeringen, K. (2009) Psychosocial and psychiatric factors associated with adolescent suicide: a case control psychological

69.

70.

71.

72.

73.

autopsy study. Journal of Adolescence, 32, 849 862. DOI: 10.1016/j.adolescence.2008.10.007. Brent, D. A., Moritz, G., Bridge, J. et al. (1996) Long term impact of exposure to suicide: a three year controlled follow up. Journal of the American Journal of Child and Adolescent Psychiatry, 35, 646 653. Hazell, P. and Lewin, T. (1993) Friends of adolescent suicide attempters and completers. Journal of the American Journal of Child and Adolescent Psychiatry, 32, 76 81. Hawton, K., Simkin, S., Deeks, J. et al. (1999) Effects of a drug overdose in a television drama on presenta tions to hospital for self poisoning: time series and questionnaire study. British Medical Journal, 318, 972 992. Gould, M. and Shaffer, D. (1986) The impact of suicide in television movies. Evidence of imitation. New England Journal of Medicine, 315, 690 694. Gould, M., Jamieson, P. and Romer, D. (2003) Media contagion and suicide among the young. American Behavioural Scientiest, 46, 1269 1284.

19 Personality disorder Priya Bajaj and Mike Crawford Department of Psychological Medicine, Imperial College London, London, UK

People differ in the way they view themselves and others. These characteristics influence the way that people behave, including the way they interact with others. The term ‘personality disorder’ (PD) is used to describe patterns of relating to self and others that are inflexible, maladaptive and lead to significant personal and social problems [1]. Personality affects occu-

19.1

pational and social functioning. The presence of personality disorder is also an important risk factor for mental health problems such as depression, substance misuse and suicidal behaviour [2]. Many people referred to mental health services have significant personality problems and coexisting personality disorder may reduce the effectiveness of treatments [3].

A CONTROVERSIAL DIAGNOSIS

While there is widespread acceptance that personality varies between individuals and that personality has an important influence on people’s health and social functioning, the diagnosis of ‘personality disorder’ is a contentious one. Concerns have been expressed that the term is a way of labelling socially undesirable behaviour [4]. Others have highlighted how the diagnosis can be misused to try to explain a person’s failure to respond to treatment for other mental disorders [5]. Many people with a diagnosis of personality disorder are dissatisfied with the services they are offered and feel that being given this diagnosis has a detrimental effect on the care that they receive [6]. Some service users feel they were given the label as a way of trying

to justify withdrawal of treatment or exclusion from services [7]. Negative experiences of services among people with personality disorder are mirrored by those of some health care professionals who report finding it difficult to work with people with PD and are pessimistic about the chances of someone with PD achieving better mental health [8]. In a survey of 240 psychiatrists in England, respondents felt that those with a diagnosis of PD were less deserving of services than those with other mental health problems [9]. Over recent years, greater awareness of the emotional distress that many people with personality disorder experience together with evidence that the prognosis

Principles of Social Psychiatry, second edition Edited by Craig Morgan and Dinesh Bhugra Ó 2010 John Wiley & Sons, Ltd.

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of some disorders is better than previously thought, has led to a re-evaluation of the use of this diagnosis. Research demonstrating the effectiveness of psycho-

19.2

logical treatments for some forms of PD further emphasize the importance of recognition and assessment of personality in clinical practice.

CLASSIFICATION OF PERSONALITY DISORDER

Two main approaches have been used to classify personality-related problems; dimensional and categorical. The use of a dimensional approach is supported by population-based research showing that problems associated with personality can be placed on a continuum of normal to abnormal and that a discrete group of people with ‘disorder’ does not exist. Dimensional models of personality are also supported by a large body of evidence that suggests that a limited number of personality ‘traits’, such as neuroticism, extraversion and openness, provide a reliable measure of most aspects of a person’s personality [10]. However, dimensional approaches to classifying mental disorder are cumbersome and current classification systems are based on a categorical approach. This approach stems from the work of the German psychiatrist Schneider who described personality disorder as abnormal personalities where the abnormality causes suffering to an individual or the community [11]. The current DSM-IV classification system is based on the concept of personality traits, i.e. ‘enduring patterns of perceiving, relating to, and thinking about the environment and oneself’. However, traits constitute personality disorder only when they are ‘inflexible and maladaptive and cause significant functional impairment or subjective distress’ [1]. Recent editions of the DSM classify mental disorders (clinical syndromes) on Axis I and personality disorders on Axis II. Ten patterns or categories of personality disorder are identified and grouped into three clusters:

Each of the above categories is operationally defined by between seven and nine specific criteria, a set number being required for diagnosis of the disorder [1]. The ICD-10 system defines a ‘specific personality disorder’ as a ‘severe disturbance in the characterological constitution and behavioural tendencies of the individual, usually involving several areas of the personality, and nearly always associated with considerable personal and social disruption’ [12]. The general diagnostic guidelines applying to all personality disorders are:

.

Cluster A (odd/eccentric) includes paranoid, schizoid and schizotypal

f. The disorder is usually, but not invariably, associated with significant problems in occupational and social performance.

.

Cluster B (dramatic/erratic) includes antisocial, borderline, histrionic and narcissistic

.

Cluster C (anxious/fearful) includes avoidant, dependent and obsessive-compulsive.

a. Markedly disharmonious attitudes and behaviour are apparent, usually involving several areas of functioning, e.g. affectivity, arousal, style of relating to others. b. The abnormal behaviour pattern is enduring, of long standing and not limited to episodes of mental illness. c. The abnormal behaviour pattern is pervasive and clearly maladaptive to a broad range of personal and social situations. d. The above manifestations always appear during childhood or adolescence and continue into adulthood. e. The disorder leads to considerable personal distress but this may become apparent late in its course.

The subtypes include paranoid, schizoid, dissocial, emotionally unstable, histrionic, anankastic, anxious (avoidant) and dependent personality disorder. In order to qualify as a diagnosis, clear evidence of

PERSONALITY DISORDER

at least three of the traits or behaviours are required. The ‘emotionally unstable’ subtype of PD is further broken down into impulsive and ‘borderline’ PD (BPD). The latter is characterized by emotional lability, fear of abandonment, chronic sense of emptiness and recurrent suicidal ideation and behaviour. The word ‘borderline’ was used to refer to the border between psychosis and neurosis in recognition of the transient psychotic symptoms that some people with this disorder experience at times of crisis.

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Clinical practice suggests that many people with personality disorder do not fit neatly into one of these subtypes. Many people meet criteria for several personality disorders [13]. This finding has led to increasing use of the three broad clusters of personality disorder listed above. It has also given rise to the idea that those whose personality disturbance meets criteria for disorders in more than one cluster should be regarded as having ‘severe personality disorder’ [14].

PREVALENCE OF PERSONALITY DISORDER

The prevalence of personality disorder in community samples has not been investigated with the same vigour as the prevalence of other psychiatric conditions [15, 16]. The small numbers of studies that have been completed have all come from North America, Europe and Australasia. These studies suggest that the lifetime prevalence of personality disorder is between 5 and 15% [17, 18]. The prevalence of personality disorder is generally higher in urban than in rural populations [19]. Cross-sectional surveys have shown that the point prevalence of personality disorders increases from 4 to 10% in the community, to about 20% in primary care, rising to over 50% in psychiatric outpatient populations. Among psychiatric patients, the highest prevalence of personality disorders is found among those suffering from substance use disorders, eating disorders and those presenting to services following deliberate self-harming behaviour. In these populations, cluster B personality disorders predominate. Studies indicate that the highest prevalence overall of personality disorders is found among offenders; in the largest survey of psychiatric morbidity in prisoners in England and Wales, the prevalence of personality disorder among sentenced male prisoners was over 60% [20]. Differences between prevalence rates in different studies may be explained by sampling procedures, diagnostic instruments and the number of disorder categories included, rather than true differences between populations. All studies in this field are limited by the poor diagnostic reliability of person-

ality disorder, especially when it is based on a single interview [21]. Among the DSM-IV clusters, cluster C personality disorders are more prevalent than those in clusters A and B. While the overall prevalence of personality disorder is similar in men and women, there are marked differences in the prevalence of subtypes within the cluster B category. Levels of borderline personality disorder are higher in women, and men are nine times more likely to meet diagnostic criteria for antisocial PD [18]. Similarities in some characteristics of borderline and antisocial personality disorder, such as a low threshold for frustration, have led to the suggestion that these two forms of personality disorder are the same but are manifested differently in men (who may tend to externalize aggression) and women (for whom internalized aggression is manifested through acts of deliberate self-harm) [22]. Borderline personality disorder is estimated to affect 0.5 2% of the population. High levels of emotional distress and recurrent acts of deliberate selfharm mean that the prevalence of borderline personality disorder is considerably higher among those in contact with mental health services. Between 0.6 and 3% of the general population of Westernized countries meet diagnostic criteria for antisocial personality disorder. The prevalence is higher in inner-city areas and among those with substance misuse problems, and higher still among those in contact with criminal justice services [23].

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19.4

COURSE OF PERSONALITY DISORDER

Although the definition of personality disorder is an ‘enduring’ pattern of inner experience and behaviour, which is inflexible, pervasive, stable and of long duration, research increasingly reveals that these conditions show major fluctuations. Epidemiological studies have shown that personality abnormality is at its most marked in the late teens and early twenties, and even short-term follow-up studies suggest improvement in most areas of personality function within two years. Longer-term follow-up studies suggest that some, but not all, forms of personality disorder improve substantially over time. Seivewright, Tyrer and Johnson reported that among 202 people recruited into a randomized trial of treatments for common

19.5

mental disorder, personality traits in the cluster B group became significantly less pronounced over time. In contrast, those in the cluster A and C groups generally became more pronounced [24]. These findings are supported by other studies, which show that people with BPD and other cluster B personality disorders generally improve over time. Zanarini and colleagues found that among 290 people with BPD who were recruited from inpatient mental health units, over 70% no longer met criteria for this diagnosis when followed up six years later. This change was reported to be due to a reduction in impulsivity, with affective symptoms changing far less during this period [25].

IMPACT OF PERSONALITY DISORDER

Given that interpersonal problems are a central component of the definition of personality disorder, it is self-evident that people with PD will have poor social functioning [26]. People with PD are less likely to be married and more likely to be single, separated or divorced [27]. Those with cluster A PD appear to be the least likely to get married. People with PD report lower levels of contact with relatives, smaller numbers of friends and smaller social networks [28]. Levels of Axis I mental disorder are higher among people who have a personality disorder than those who do not, as are levels of deliberate self-harm. Borderline personality disorder has been reported as the most common personality disorder in several studies of deliberate self-harm (DSH) patients [29 31]. In a study by Haw and colleagues [32] patients aged 15 years and over who presented to the district general hospital in Oxford, UK, following an episode of DSH between 10 February and 1 December 1997 were screened. The definition of DSH that was used included acts of self-poisoning and self-injury, but excluded acts of self-cutting that was part of a repetitive pattern of self-mutilation. Personality disorders were present in 51 cases (45.9%): 19 patients (17.1%) met criteria for one personality disorder, 15 (13.5%) for two and 17 (15.3%) for three or more. The most

common disorders were anxious, anankastic and paranoid.

19.5.1

Premature mortality

People with personality disorder have elevated mortality resulting from poorer physical health and higher levels of suicide and accidental death. A large community-based cohort study of 12 103 cases in Sweden [33], which examined mortality among those with a range of mental disorders, showed that Standardized Mortality Ratios for those with ‘external causes’ were highest among those with a diagnosis of personality disorder (21 for men and 29 for women). Standardized Mortality Ratios for suicide among people with PD were even higher (38 among men and 42 among women). Psychological autopsy studies among people who die by suicide suggest that as many as 40% have a personality disorder, though this is generally in combination with other mental disorders, especially depression and alcohol misuse [34]. Levels of mortality are especially high among people with cluster B personality disorder. Paris and Zweig-Frank reported that, among a group of 64 people aged under 35 who

PERSONALITY DISORDER

were admitted to inpatient units with evidence of borderline PD, 18% died over the following 27 years, with over half of all deaths resulting from suicide [35].

19.5.2

Harm to others

The impact of personality disorder on the level of violence in society remains unclear. Coid and colleagues [23] have explored this topic using data from the Psychiatric Morbidity Survey of UK adults in 2000. As part of this survey, over 8000 householders were asked questions about their violent behaviour over the preceding 5 years. Over a third of all incidents were reported by respondents with no disorder. Mental disorder appeared to have an impact on reported violent behaviour, although this was overwhelmingly associated with substance use/dependence and personality disorder. This cross-sectional survey therefore provides some evidence to show that personality disordered individuals, and particularly those with antisocial personality disorder (APD), significantly contribute to the overall level of violence in the UK population. Despite a relatively low prevalence, individuals with antisocial personality disorder made substantial contributions to self-reported violence in the household population of Britain. Persons with antisocial personality disorder and substance dependence were more likely to report involvement in violent incidents and inflicting injuries

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253

on their victims, receiving injuries themselves and being involved in multiple incidents, thereby increasing the burden of care upon health care services. Individuals with antisocial personality disorder demonstrated strong associations with injuring victims, and their violence was repetitive. They victimized partners and family members as well as strangers, and were most likely to be violent towards the police. They reported violence in all locations studied, and violence was more likely when intoxicated [23]. Comorbid PD also increases risk of violence among those with other mental disorders. In a secondary analysis of data collected as part of a randomized controlled trial of intensive management compared with standard case management for people with psychosis, Moran and colleagues [36] screened participants for comorbid personality disorder. Physical assault was measured from multiple data sources over the next 2 years, and logistic regression was used to assess whether the presence of comorbid personality disorder independently predicted violence in the sample; 186 patients (28%) were rated as having a comorbid personality disorder, and they were significantly more likely to behave violently over the two-year period of the trial, even after adjusting for the effects of substance misuse, previous violence and severity of psychotic symptoms. The authors concluded that comorbid personality disorder is independently associated with an increased risk of violent behaviour in psychosis [36].

RESEARCH INTO AETIOLOGY OF PD

As with other mental disorders, research conducted to date suggests that personality disorder arises from an interplay of hereditary and environmental factors. Studies concentrating upon the heritability of personality disorder have pointed to three causal mechanisms in the development of personality disorder [37]. First, it has been found that antisocial personality disorder, borderline personality and substance abuse frequently occur together in family studies, resulting in the hypothesis that they form a group of impulsive spectrum disorders associated with a common temperament. Second, individuals with schizoid, paranoid and schizotypal personality disorders tend to

have relatives with schizophrenia or schizophrenia spectrum disorders. Third, individuals with avoidant, dependent and compulsive personality disorders tend to have relatives with anxiety disorders [5]. Torgersen and colleagues [38] published the first twin study to investigate the complete range of DSM personality disorders. The main part of their sample was ascertained by matching the Norwegian Twin Register with the National Register for Mental Disorder in Norway. Heritability for each of the three clusters was as follows: cluster A: 0.37, cluster B: 0.62, cluster C: 0.62. As the sample for this study was drawn mainly from clinical settings, the authors

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SOCIAL DETERMINANTS

acknowledge that these estimates may not be generalizable to the wider population. Other studies have suggested a greater contribution of early environmental factors, especially for cluster B personality disorder. Indeed, most studies examining links between early environments and personality disorder have been conducted among people with cluster B PD, especially those with borderline personality disorder. These are explored in greater detail below.

19.6.1

Childhood trauma

Several studies have examined the association between early childhood experiences and development of personality disorder. It has been found that many, but not all, individuals with borderline PD (BPD) report a history of abuse, neglect or separation as young children. Zanarini et al. [39] found that 40 to 71% of borderline PD patients report having been sexually abused by a noncaregiver. Using a developmental interview, among several psychological risk factors, i.e. childhood sexual abuse, childhood physical abuse, early separation or loss, and abnormal parental bonding, women with BPD have reported more severe and a greater frequency of childhood sexual abuse, as well as more physical abuse [39]. Of these factors, childhood sexual abuse emerged as the sole factor that discriminated between BPD and non-BPD patients [40]. Despite this finding, a metaanalysis of published literature from 1980 to 1995 did not support the hypothesis that childhood sexual abuse is a major psychological risk factor or a causal antecedent of BPD [41]. Apart from BPD, the risk of development of antisocial personality disorder following early childhood abuse or neglect has also been researched. A prospective study followed 699 subjects into early adulthood and found that childhood victimization was a significant predictor of the number of lifetime symptoms of antisocial personality disorder and of a diagnosis of antisocial personality disorder [42]. Long-term consequences of childhood victimization were explored in a cohort study by Widom [44]. Being abused or neglected as a child was found to increase risk for delinquency, adult criminal behaviour and violent criminal behaviour. Despite the suggestion that

violence begets violence, this study also highlighted that the majority of abused and neglected children do not become delinquent, criminal or violent. Berenbaum et al. [43] examined the relationship between schizotypal symptoms and psychological trauma (which includes childhood maltreatment and the experience of an injury or life-threatening event) and found a gender difference. Schizotypal symptoms were found to be more strongly associated with childhood maltreatment among men whereas schizotypal symptoms were more strongly associated with posttraumatic stress disorder (PTSD) criterion A among women.

19.6.2

Parenting and attachment

Retrospective studies in which people with BPD are asked to describe their early childhood experiences show that relationships with caregivers are often unstable or disordered [45, 46]. Parental neglect and overprotection have also been examined in BPD. In a cohort of borderline patients several aetiological hypotheses were tested by Soloff and Millward [47]. They found that relationship with parents was seen as conflicted and negative and mothers were seen as overinvolved while at the same time less caring and helpful. Reports of early parenting in a study by Parker et al. found that parents were rated as uncaring, overcontrolling and abusive [48]. Most consistent links between perceived dysfunctional parenting were found with the cluster C (anxious) and cluster B (dramatic) styles but were insignificant for the cluster A (eccentric) style. Meeting criteria for an increasing number of personality disorder clusters was associated with increasing levels of adverse parenting. Overall in this study, disordered functioning was most distinctly associated with paternal indifference and maternal overcontrol. However, most BPD patients do not have mothers with BPD, and the estimated 10% that do may represent a particularly high-risk subgroup in which both constitutional and environmental influences compound each other [49]. Interactional patterns of mothers with BPD and their infants as well as parenting perceptions of mothers with BPD were studied

PERSONALITY DISORDER

further by Newman et al. [50]. Mothers with BPD were found to be less sensitive and demonstrated less structuring in their interaction with their infants, and their infants were found to be less attentive, less interested and less eager to interact with their mother.

19.7

Furthermore, mothers with BPD reported being less satisfied, less competent and more distressed. These findings indicate that there is a role for early intervention to promote maternal sensitivity and maternal perceptions of competence.

EVIDENCE FROM INTERVENTION STUDIES

Retrospective studies examining the salience of social factors in the aetiology of personality disorder are susceptible to a variety of different forms of bias. As with other health-related problems, adults with personality disorder may be more likely to recall adverse events in their background than those with no personality disorder. Recently conducted experimental studies that aim to study the impact of psychosocial interventions delivered in childhood on subsequent mental health provide a means of prospectively examining the impact of improving a person’s social circumstances. Few studies have been conducted sufficiently long ago in order to study their impact on personality in adulthood. However, initial findings from some studies suggest

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255

that it may be possible to reduce the likelihood of interpersonal problems through improving the social environments of children. For instance, Raine and colleagues [51] have evaluated the impact of a twoyear programme of educational and nutritional interventions and structured physical activity for threeyear-old children on the island of Mauritius. The team were able to follow up 75 (90%) of 83 children who completed the programme and 288 (81%) of matched controls and demonstrated lower levels of personalityrelated problems and criminal behaviour twenty years later. The generalizability of such findings to resourcerich settings have not been explored, but they support the notion that improving early childhood environments can impact on adult personality status.

RELEVANCE OF AETIOLOGY FOR THE DEVELOPMENT OF TREATMENT APPROACHES

Interventions for personality disorder are considered in detail in Chapter 34. While there are many gaps in our understanding of the aetiology of personality disorder our existing knowledge base provides an indication of areas where efforts both to prevent and treat personality disorder may be most effectively targeted. The high incidences of personality disorder in those who have been in local authority or institutional care, particularly in the cluster B group, and their subsequent criminal convictions, suggest that preventive and treatment strategies in this population could have a major influence on public health [18]. Public health also has the advantage of linking the biological basis of health and disease with social and political processes of society. Rose divided preventive interventions into ‘high-risk strategies’, which are targeted at individuals identified as at high risk, and ‘population strategies’, aimed at bringing about overall population

change [52]. Current interventions for personality disorder do not extend beyond the first category, usually involving tertiary referral services. Consequently, at present tertiary services that provide access to peer support, help people with both social as well as mental health problems, and help address social skills deficits appear to offer the greatest potential to help people with PD [53].

REFERENCES 1. American Psychiatric Association (1994) Diagnostic and Statistical Manual of Mental Disorders, 4th edn, American Psychiatric Association, Washington, DC. 2. Krueger, R. F., Caspi, A., Moffit, T. E. et al. (1996) Personality traits are differentially linked to mental

256

3.

4.

5.

6.

7.

8.

9.

10.

11. 12.

13.

14.

15.

16.

SOCIAL DETERMINANTS

disorders: a mutitrait multidiagnosis study of an ado lescent birth cohort. Journal of Abnormal Psychology, 105, 299 312. Dolan Sewell, R. T., Krueger, R. F. and Shea, M. T. (2001) Co occurrence with syndrome disorders, in Handbook of Personality Disorders: Theory, Research, and Treatment (ed. W. J. Livesley), Guilford, New York, pp. 84 104. Tyrer, P., Casey, P. and Ferguson, B. (1991) Personality disorder in perspective. British Journal of Psychiatry, 159, 463 471. Alwin, N., Blackburn, R., Davidson, K. et al. (2006) Understanding Personality Disorder: A Report by the British Psychological Society, The British Psychologi cal Society, Leicester. Ramon, S., Castillo, H. and Morant, N. (2001) Experi encing personality disorder: a participative research. International Journal of Social Psychiatry, 47, 1 15. Haigh, R. (2002) Services for People with Personality Disorder: The Thoughts of Service Users, National Insti tute for Mental Health in England (NIMHE), London. Markham, D. (2005) Attitudes towards patients with a diagnosis of borderline personality disorder: social rejection and dangerousness. Journal of Mental Health, 12, 595 612. Lewis, G. and Appleby, L. (1988) Personality disorder: the patients psychiatrists dislike. British Journal of Psychiatry, 153, 44 49. CostaJr, P.T. and McCrae, R. R. (1985) The NEO Personality Inventory Manual, Psychological Assess ment Resources, Odessa, Florida. Schneider, K. (1950) Psychopathic Personalities, 9th edn, Cassell, London (English translation, 1958). World Health Organization (1992) The ICD 10 Classi fication of Mental and Behavioral Disorders, WHO, Geneva. Fyer, M. R., Frances, A. J., Sullivan, T. et al. (1988) Co morbidity of borderline personality disorder. Archives of General Psychiatry, 45, 348 352. Tyrer, P. and Johnson, T. (1996) Establishing the sever ity of personality disorder. American Journal of Psy chiatry, 153, 1593 1597. Casey, P. (2000) The epidemiology of personality dis orders, in Personality Disorders: Diagnosis, Manage ment and Course, 2nd edn (ed. P. Tyrer), Arnold, London, pp. 71 79. Mattia, J. and Zimmerman, M. (2001) Epidemiology, in Handbook of Personality Disorders: Theory, Research,

17.

18.

19.

20.

21. 22.

23.

24.

25.

26.

27.

28.

and Treatment (ed. W. Livesley), Guilford Press, New York, pp. 107 123. Casey, P. R. and Tyrer, P. J. (1986) Personality, func tioning and symptomatology. Journal of Psychiatric Research, 20, 363 374. Coid, J., Yang, M., Tyrer, P. et al. (2006) Prevalence and correlates of personality disorder in Great Britain. British Journal of Psychiatry, 188, 423 431. Keown, P., Holloway, F. and Kuipers, E. (2002) The prevalence of personality disorders, psychotic disorders and affective disorders amongst the patients seen by a community mental health team in London. Social Psychiatry and Psychiatric Epidemiology, 37, 225 229. Moran, P. (1999) The epidemiology of antisocial per sonality disorder. Social Psychiatry and Psychiatric Epidemiology, 34, 231 242. Tyrer, P. (2005) The stability of personality disorders. Psychiatry, 4 (3), 29 31. Lowenstein, L. (2007) The Link between Borderline Personality Disorder and Antisocial Personality Dis order, Southern England Psychological Services, Eastleigh. Coid, J., Yang, M., Roberst, A. et al. (2006) Violence and psychiatric morbidity in the national household population of Britain: public health implications. Brit ish Journal of Psychiatry, 189, 12 19. Seivewright, H., Tyrer, P. and Johnson, T. (2002) Change in personality status in neurotic disorders. Lancet, 359 (9325), 2253 2254. Zanarini, M. C., Frankenburg, F. R., Hennen, J. and Silk, K. R. (2003) The longitudinal course of borderline psychopathology: 6 year prospective follow up of the phenomenology of borderline personality disorder. American Journal of Psychiatry, 160, 274 283. Skodol, A. W., Johnson, J. G., Cohen, P. et al. (2007) Personality disorder and impaired functioning from adolescence to adulthood. British Journal of Psychia try, 190, 415 420. Samuels, J., Eaton, W. W., Bienvenu, O. J. et al. (2002) Prevalence and correlates of personality disorders in a community sample. British Journal of Psychiatry, 180, 536 542. Tyrer, P., Merson, S., Onyett, S. et al. (1994) The effect of personality disorder on clinical outcome, social networks and adjustment: a controlled clinical trial of psychiatric emergencies. Psychological Medicine, 24, 731 740.

PERSONALITY DISORDER

29. Ennis, J., Barnes, R. A., Kennedy, S. et al. (1989) Depression in self harm patients. British Journal of Psychiatry, 154, 41 47. 30. Suominen, K., Henriksson, M., Suokas, J. et al. (1996) Mental disorders and comorbidity in attempted suicide. Acta Psychiatrica Scandinavica, 94, 234 240. 31. Gupta, B. and Trzepacz, P. (1997) Serious overdosers admitted to a general hospital: comparison with nono verdose self injuries and medically ill patients with sui cidalideation.GeneralHospitalPsychiatry,19,209 215. 32. Haw, C., Hawton, K., Houston, K. et al. (2001) Psy chiatric and personality disorders indeliberate self harm patients. British Journal of Psychiatry, 178, 48 54. 33. Tidemalm, D., Waern, M., Stefansson, C. G. et al. (2008) Excessmortalityinpersonswithseverementaldisorderin Sweden: a cohort study of 12 103 individuals with and without contact with psychiatric services. Clinical Prac tice and Epidemiology in Mental Health, 4, 23. 34. Foster, T., Gillespie, K., McClelland, R. and Patterson, C. (1999) Risk factors for suicide independent of DSM III R axis I disorder. Case control psychological autopsy study in Northern Ireland. British Journal of Psychiatry, 175, 175 179. 35. Paris, J. and Zweig Frank, H. (2001) A 27 year follow up of patients with borderline personality disorder. Comprehensive Psychiatry, 42 (6), 482 487. 36. Moran, P., Walsh, E., Tyrer, P. et al. (2003) The impact of co morbid personality disorder on violence in psy chosis data from the UK700 trial. British Journal of Psychiatry, 182, 129 134. 37. Coid, J. W. (1999) Aetiological risk factors for person ality disorders. British Journal of Psychiatry, 174, 530 538. 38. Torgersen, S., Lygren, S., Oien, P. A. et al. (2000) A twin study of personality disorders. Comprehensive Psychiatry, 41 (6), 416 425. 39. Zanarini, M. C., Gunderson, J. G., Marino, M. F. et al. (1989) Childhood experiences of borderline patients. Comprehensive Psychiatry, 30, 18 25. 40. Paris, J., Zweig Frank, H. and Guzder, J. (1994) Psy chological risk factors for borderline personality dis order in female patients. Comprehensive Psychiatry, 35 (4), 301 305. 41. Fossati, A., Madeddu, F. and Maffei, C. (1999) Border line personality disorder and childhood sexual abuse: a

42.

43.

44. 45.

46.

47.

48.

49.

50.

51.

52. 53.

257

meta analytic study. Journal of Personality Disorder, 13, 268 280. Luntz, B. K. and Widom, C. S. (1994) Antisocial personality disorder in abused and neglected children grown up. American Journal of Psychiatry, 151, 670 674. Berenbaum, H., Thompson, R. J., Milanek, M. E. et al. (2008) Psychological trauma and schizotypal person ality disorder. Journal of Abnormal Psychology, 117 (3), 502 519. Widom, C. S. (1989) The cycle of violence. Science, 244, 160 166. Zanarini, M.C. (2000) Childhood experiences asso ciated with the development of borderline personality disorder. Psychiatric Clinics of North America, 23 (1), 89 101. Akiskal, H. S., Chen, E. S., Davis, G. C. et al. (1985) Borderline: an adjective in search of a noun. Journal of Clinical Psychiatry, 46, 41 48. Soloff, P. H. and Millward, J. W. (1983) Developmental histories of borderline patients. Comprehensive Psy chiatry, 24, 574 588. Parker, G., Roy, K., Wilhelm, K. et al. (1999) An exploration of links between early parenting experi ences and personality disorder type and disordered personality functioning. Journal of Personality Disor ders, 13 (4), 361 374. Links, P. S., Steiner, M. and Huxley, G. (1988) The occurrence of borderline personality disorder in the families of borderline patients. Journal of Personality Disorders, 2, 14 20. Newman, L. K., Stevenson, C.S., Bergman, L.R. and Boyce, P. (2007) Borderline personality disorder, mother infant interaction and parenting perceptions: preliminary findings. Australian and New Zealand Journal of Psychiatry, 41 (7), 598 605. Raine, A., Mellingen, K., Liu, J. et al. (2003) Effects of environmental enrichment at ages 3 5 years on schi zotypal personality and antisocial behavior at ages 17 and 23 years. American Journal of Psychiatry, 160, 1627 1635. Rose, G. (1992) The Strategy of Preventive Medicine, Oxford University Press, Oxford. Crawford, M. J. (2008) Services for people with per sonality disorder. Psychiatry, 7, 124 128.

20 Drug use, drug problems and drug addiction: social influences and social responses John Strang, Michael Gossop and John Witton National Addiction Centre, Institute of Psychiatry, King' s College London, London, UK

20.1

INTRODUCTION

Substance abuse contributes to many of the social problems within society today. Over recent decades there have been many changes in the prevalence of substance use disorders and in how these problems are perceived as well as changes in the nature and delivery of responses. These include an increased awareness of the interplay between genetic, developmental and

20.2

social environmental factors on the initiation of drug use, on the development of drug problems, on the course of such problems and on their short-term and long-term outcomes both with and without treatment. In this chapter an examination is undertaken of the social influences and social responses that may influence drug use, drug problems and drug addiction.

DRUG USE, DRUG PROBLEMS AND DRUG ADDICTION TERMINOLOGY

Drug addiction, sometimes also called dependence, is marked by a clustering of cognitive, behavioural and physiological phenomena:

(iii) A relatively stereotyped drug-taking habit (i.e. a narrowing of the repertoire of the drugtaking behaviour)

(i) Subjective awareness of compulsion to use a drug or drugs, usually during attempts to stop or moderate drug use

(iv) Evidence of neuroadaptation (tolerance and withdrawal symptoms)

(ii) A desire to stop drug use in the face of continued use

(v) Use of the drug to relieve or avoid withdrawal symptoms

Principles of Social Psychiatry, second edition Edited by Craig Morgan and Dinesh Bhugra Ó 2010 John Wiley & Sons, Ltd.

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(vi) The salience of drug-seeking behaviour relative to other important priorities (vii) Rapid reinstatement of the syndrome after a period of abstinence. Attempts to separate physical dependence and psychological/psychic dependence are flawed because of the interrelationship between the two. The term ‘neuroadaptation’ covers the changes associated with physical and psychological withdrawal phenomena and also with the development of tolerance. Thus neuroadaptation covers the cellular, metabolic and behavioural adaptations that occur in response to drug use, as drug users may move from occasional controlled use to the loss of control over drug seeking and drug taking. The term may also be extended to the concept of reciprocal neuroadaptation to discover the phenomenon previously described as cross-tolerance. The World Health Organization [1] recommends the use of further terms to characterize the continuum of drug-taking behaviour and effects:

20.3

(i) Unsanctioned use: use of a drug that is not approved by a society or a group within that society. When the term is used, it should be made clear who is responsible for the disapproval. The term implies that we accept disapproval as a fact in its own right without having to determine or justify the basis of that disapproval. (ii) Hazardous use: use of a drug that will probably lead to harmful consequences for the user either to dysfunction or to harm. This concept is similar to the idea of risky behaviour. For instance, smoking 20 cigarettes each day may not be accompanied by any present or actual harm but we know it to be hazardous. (iii) Dysfunctional use: use of a drug that is leading to impaired psychological or social functioning (e.g. loss of job or marital problems). (iv) Harmful use: use of a drug that is known to have caused tissue damage or mental illness in the particular person.

EPIDEMIOLOGY

The majority of the commonly abused drugs (with the striking exception of alcohol) are subject to legal restrictions on possession and use. This raises a number of difficulties in attempting to reach valid estimates of prevalence. Various measures do exist through self-report surveys or by using official notification figures. These include various morbidity and mortality data such as drug-related deaths, hepatitis B statistics, nonfatal drug emergencies and law enforcement data. In the UK the British Crime Survey (BCS) has charted the prevalence of drug use and trends among the general population in England and Wales since 1996 [2]. Use of any illicit drug during the last year declined from 12.1% of 16 to 59-year-olds in 1998 to 9.3% in 2007 2008, a decline largely due to a fall in the use of cannabis. While cannabis use accounts for most of this estimate, nearly three-quarters of a million people used cocaine powder in the last year [2].

However, there are limitations to self-report household surveys which, apart from the likelihood of deliberate withholding of information, may also miss those who are socially disadvantaged. For example, the 2007/8 BCS estimates that just 34 000 people used heroin in the last year a number incompatible with figures for those seeking treatment for their heroin use. The National Treatment Drug Monitoring System (NDTMS) figures for England show that over 120 000 people in drug treatment reported heroin as their main misused drug [3]. The Office of Population Censuses and Surveys (OPCS) with its National Psychiatric Morbidity Survey included the homeless and institutional residents with psychiatric disorders as well as a general population sample in its survey. While 5% of the household sample were classified as alcohol dependent, over 21% of the homeless sample were recorded as alcohol dependent. Similarly tobacco and drug use were notably higher in the

DRUG USE, DRUG PROBLEMS AND DRUG ADDICTION: SOCIAL INFLUENCES AND SOCIAL RESPONSES

homeless group compared to the other two samples [4]. Prison inmates are also missed in general population surveys. In a subsample of prisoners taken from a national survey, just over two-fifths (42.5%) of them were diagnosed as drug dependent using the Diagnostic Interview Schedule and 29% reached the criteria for ‘severe’ dependence for at least one drug [5]. In the US, national high school surveys on patterns of drug use have been conducted annually since 1975, as well as a national household survey of drug use since 1972. These provide estimates of drug-using trends. Based on information from these surveys, the lifetime prevalence of cannabis use among adolescents increased steadily during the 1970s, from 14% in 1972 to 31% in 1979. While this trend stabilized during the 1980s, rates rose again and peaked in the mid-1990s. Among high school students, for instance, the percentage of people smoking cannabis in the past

20.4 20.4.1

261

month declined from 37% in 1979 to 16.4% in 1991, then rose to 26.2% by 1997. Rates have declined since the 1990s peak to 21.9% of seniors reporting past month use in 2007 [6]. The use of most illicit drugs showed a similar trend during this time, though the use of stimulant drugs differed from the overall pattern by showing an increase during the 1980s, especially for the use of cocaine by adults aged 26 years or older, with monthly cocaine use among high school seniors increasing in recent years despite a decline in the use of most other illicit drugs [6]. The 1988 US national survey was the first to collect information on items that are part of the ICD-10 and DSM-III-R criteria for drug dependence and abuse. The data on each individual in the survey were classified to yield categories of clear, probable, possible and unlikely need for treatment. In 2007, 3% of the total population (7.5 million people) aged 12 or over needed treatment for an illicit drug use problem [7].

SPECIAL STUDIES

The Vietnam study

The story of heroin use by American forces in Vietnam is an extraordinary natural history experiment. Robins and her colleagues charted heroin use by US army personnel during and after the Vietnam War [8,9]. They examined two samples. One sample comprised 500 army-enlisted men drawn randomly from those returning home from Vietnam during September 1971. While in Vietnam 43% had used an opiate and nearly half of these men had used opiates on at least a weekly basis for six months or longer; a fifth of this general sample considered that they had been addicted to heroin while in Vietnam. The sample was followed up on their return home, and when interviewed eight to ten months later, only 10% had used opiates since their return to the US and only 1% had been addicted since their return. The other sample studied by Robins was a group of 500 ‘drug positive’ men (soldiers known to be or to have been drug users). Three-quarters of these men had been addicted to opiates while in Vietnam, but on interview 8 12 months after return to the US, only a third had used any opiates since Vietnam and only 7% had been addicted since their return.

A number of points are vividly demonstrated by the Robins and colleagues’ papers. If the circumstances are right (or to be more precise, if the circumstances are wrong), the extent of use of prohibited drugs such as heroin can be remarkably high. Winick [10] has described how the extent of drug use within a society may be determined by three factors: the availability of the drug, the degree of social proscription and the extent of conflict or stress. In Vietnam, heroin was not only readily available but was of high purity and at low cost relative to surplus income. As the use of heroin by smoking and injecting became more widespread among American soldiers, so the extent of moral censorship or social proscription against personal use of such drugs became much less. The findings from Vietnam also provide clear evidence of nondependent patterns of use of heroin. Many users did not become dependent during their use of heroin. A separate study of this area has been undertaken in different settings by Zinberg [11], who described the patterns of use and social structure of groups of heroin users who abide by strict internal rules (e.g. avoidance of dose escalation, avoidance of use on consecutive days, preservation of outside

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interests and friendship networks, etc.), which Zinberg put forward as factors that were protective against the development of the more typical dependent pattern of heroin use. A third area in which the Vietnam studies may provide us with insight is with regard to the reversibility of the heroin-using and heroin-addicted status. Virtually all nondependent heroin users and the vast majority of heroin addicts in Vietnam did not use heroin after they had returned to the US. While this is admittedly a profound piece of engineering of the social environment, it nevertheless stands as a clear demonstration of the evident reversibility of the heroin-using and heroin-addicted conditions.

20.4.2

The National Treatment Outcome Research Study (NTORS)

An important national development in the United Kingdom during the 1990s was the government initiative to conduct a comprehensive survey of the clinical, operational and cost effectiveness of existing services for drug misusers [12]. As a major part of its work, the Task Force set up by the Department of Health to oversee this process commissioned the National Treatment Outcome Research Study (NTORS). Because of cross-national differences, it was unclear to what extent the US findings could be generalized to different patient groups, with different treatment systems and in different countries. Largescale, prospective, multisite treatment outcome studies have played an important role in improving our understanding of treatment effectiveness. They provide valuable information about drug misusers, the separate stages of their addiction careers, their various and complicated involvements with treatment services, and, of course, the changes that occur in their drug use and other problem behaviours across extended periods of time after treatment. Such studies are rare, however, because of the high costs in money, effort and organizational commitment necessary to implement, coordinate and sustain such data collection systems over many years. The NTORS investigated a cohort of problem drug users treated in four treatment modalities provided in either residential or community treatment settings

throughout England. The modalities were selected to be representative of the main treatment modalities within the UK. Residential modalities were specialist inpatient treatment and rehabilitation programmes. The community treatments were methadone maintenance and methadone reduction programmes. The NTORS provided detailed information about the pre-treatment behaviours and problems of the cohort, the operational characteristics of treatment programmes and, particularly, the patient outcomes across a range of measures. As with the American studies, a central feature of the NTORS was its concern with the impact of existing national treatment programmes delivered under day-to-day operating conditions. Clinical improvements were found in a wide range of problem behaviours, including reductions in the use of heroin and other illicit drugs, reduced injecting and sharing of injecting equipment, improvements in psychological health and reductions in crime. Frequency of heroin use after one year, for example, was reduced to about half of the intake levels, and heroin use remained at this lower level throughout the full 4 5 year follow-up period. The sharing of injecting equipment was more than halved among patients who had been treated in both residential and community settings. Rates of abstinence from illicit drug use increased among the patients from both the residential and the methadone programmes. Among the residential patients, for instance, almost half (49%) were abstinent from heroin after 4 5 years, and the percentage of residential patients who were abstinent from all six illicit target drugs had increased from 1% at intake to 38% after 4 5 years. As in the American outcome studies, time in residential treatment was related to improved post-treatment outcomes. Many of the outcomes reported by the NTORS provided clear evidence of substantial and important reduction in illicit drug problems (reduced frequency and quantity of drug use, increased rates of abstinence) and reduced injecting risk behaviours [13]. These changes were accompanied by improved psychological and physical health, and by substantial reductions in criminal behaviour. However, not all outcomes were so positive. Even in a treatment cohort that showed such major treatment gains, in the four years after intake, there was a continuing mortality

DRUG USE, DRUG PROBLEMS AND DRUG ADDICTION: SOCIAL INFLUENCES AND SOCIAL RESPONSES

rate of about 1% per year (six times higher than for an age-matched group in the general population). In addition, many clients were drinking heavily at intake and continued to drink heavily throughout the fiveyear follow-up period. The NTORS recommended that drug treatment services should be modified to address this continuing problem of alcohol abuse. Nor can the NTORS results be seen as showing that any or every type of treatment works. There was marked variability across treatment programmes both in treatments provided and in outcomes achieved by clients. The NTORS received a generally sympathetic and interested response from policy makers, and was able to inform the development of UK treatment policy responses in several ways. The main study findings and its conclusions were also generally well received by British treatment programmes. This is not surprising since most results have been positive and have been interpreted as supporting the ‘treatment works’ message. The NTORS has also had an international influence, not least by encouraging the implementation of similar projects in Australia, Scotland and Ireland. One unforeseen side-effect of the NTORS findings was to encourage a greater focus upon reduced crime as a goal of drug misuse treatment services. The NTORS hoped that its results would contribute to the debate about how best to allocate scarce economic resources to tackle drug misuse problems, and the merits of retaining the current imbalance in resource allocation whereby the greatest economic commitment is to repression or other supply reduction measures rather than treatment. Subsequent to the NTORS, although increased resources have been directed towards treatment, there has also been a very marked change of focus whereby crime reduction has moved to the top of the list of political and social priorities for drug misuse treatment.

20.4.3

UK studies of neighbourhoods

Drug use in the Wirral was studied by Parker et al. [14,15] who described the rapid and extensive spread of heroin use over the course of a year or two in a community of variable social deprivation and in which extensive heroin use was previously unknown,

263

and identified the greater extent of penetration in wards of greater socioeconomic deprivation, while also noting the subsequent spread of heroin problems to adjacent local areas whose association with the original heroin problem was only geographical. Over a similar period, Pearson and colleagues explored the considerable variation in the extent of use in different local communities across the north of England, including variation in the distribution networks, the balance between amphetamines and heroin, and the prevailing popularities of different routes of administration [16,17]. In particular, the strong association between the extent of spread of heroin use and the existing levels of unemployment and other indices of socioeconomic disadvantage was noted [18].

20.4.4

Cities can mobilize a special response

Just as towns and cities can be special insofar as a drug problem may develop, so they can also be interesting for the response to such a problem. The advent of HIV/ AIDS and emerging awareness of a potential/real link with a growing heroin problem prompted a major review of public policy and practice, and several UK cities stand as interesting examples of innovative citywide responses. Three UK city-wide examples are provided, in each of which a major ‘outbreak’ of new heroin use was occurring at a point in time where the HIV implications were only gradually becoming clear. In the first wave of awareness, Edinburgh found that, among its young heroin-injecting population, HIV had already penetrated by the mid-1980s [19,20], and the entire orientation of the public response to the heroin problem was a police-orientated control response, with virtually no treatment facilities whatsoever. Awareness of the impending public health catastrophe prompted a major review and a consequent mobilization of provision of ready-access treatment [21], needle and syringe supply/exchange, and the introduction of a ‘harm reduction’ approach to public policy and planning and treatment provision [22]. Similarly, in Liverpool and across Merseyside, concern about HIV prompted a major review even though HIV infection had not yet occurred to any significant extent, and a major initiative was

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established to provide ready access to treatment and the widespread provision of needle and syringe exchange facilities [23]. Nevertheless, it is sobering to look back on these times to see how the best intentions can on occasions lead one down healthconferring new avenues while on other occasions lead one down distracting or even contrary directions [24]. As a final example of a UK city-wide response, the Glasgow response is striking for its high level of coordinated response to the introduction of treatment in a city that was previously, to a considerable extent, without any formal prescribing component to any preexisting treatment response. Over a short period of time, a centrally coordinated city-wide provision of methadone maintenance was established [25,26] with extensive involvement of local GPs [27,28] and with the establishment of a network of community pharmacists who participated in a new scheme of supervision of consumption as well as dispensing of prescribed methadone [29,30]. In each of these city case studies, there has been only minor further spread of HIVand the spread of the heroin problem has probably been substantially checked, although here again, concerns have been raised that the rapid expansion of provision of methadone maintenance and needle and syringe exchange has led to a perverse removal of incentives to seek total abstinence as part of recovery a debate that is active as this chapter is written.

20.4.5

Prison release as a time of special risk

The final area of special study to be considered is that of release from prison. It might be thought that this was a time when there would be celebration at release and surely an absence of problems. However, for the former heroin user, the period following release from prison is fraught with real danger former heroin users comprise approximately 40% of the UK prison population [31], among whom the vast majority are not using opiates while in prison (at least, not regularly) [32]. For these former heroin users, there is a 1 in 200 risk of dying in the first month post-release, a risk that relates almost entirely to risk of drug overdose death [33 35]. This is difficult to compare directly, but the risk among heroin addicts in

treatment is less than 1 in 2000 and, for age-matched general population, is probably about 1 in 20 000. This extreme mortality risk is probably a result of a combination of lack of realization of loss of drug tolerance, deliberate celebratory post-release excess, aggravated by co-consumption of alcohol and benzodiazepines. Studies to explore this further, and to test preventive strategies, are currently in their early stages, but the example illustrates the importance of looking at the social and temporal aspects of both the drug problem itself and also of the associated sequelae.

20.4.6

Addict doctors

Medical practitioners themselves are an interesting group since they have higher than average rates of alcohol and other drug addictions [36 38]. Certain forms of medical practice offer considerable access to drugs: the anaesthetist or terminal care physician, or GP collecting stocks of control drugs for transport during home visits [39]. Additionally the degree of social proscription may be less for doctors who have seen the extensive analgesic use of morphine and heroin without instant emergence of addiction, so that some of the protective taboos that apply to most of society may be eroded. Finally, the motivations behind the decisions to enter medicine may not sit comfortably with much of the reality of clinical practice for many practitioners so that considerable dissonance and role strain is generated. Study of the natural history of addiction in doctors also provides an opportunity to look at how outcome may be influenced. The treatment of addicted doctors is notable for the extent to which treatment is often linked to conditional possibility of return to a profession with high social standing, and conditional return to work is often preceded and coexists with intense monitoring with, for example, supervised administration of opiate antagonists, random call-up for physical examination and supervised urine specimens; compulsory attendance at support groups; alerting family and colleagues so as to identify and abort relapses at an early stage; and so on. These appear to be widely accepted by both the individual and the system and may go some way to explain the good recovery rates.

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20.5

GENDER – WOMEN AND MEN AND DIFFERENT INVOLVEMENT WITH DRUG PROBLEMS AND WITH TREATMENT

Although men outnumber women in both in-treatment and out-of-treatment samples of drug misusers [40,41], women with drug misuse problems often have serious social, psychological and health problems. Many are in a relationship with partners who are drug dependent, and not infrequently with men who are physically violent towards them [42]. Many drug-dependent women have psychological problems. In a national clinical sample, nearly half of the women had received previous treatment for a psychiatric problem; about one-third had been prescribed drugs for depression and one-fifth had suicidal thoughts [43,44]. It is uncertain how much of what we know about treatment and recovery applies equally to men and women, and the extent to which special interventions and services are needed for women. Nonetheless, treatment programmes that specifically address issues of particular relevance to women may be more effective for some women, or at least more attractive to many women. Examples of this could include treatment services that offer child care facilities, assessment (and treatment where required) for psychiatric disorder and work with partners and family. Women have similar treatment outcomes to men despite the fact that some of their pre-treatment problems may be more severe than their male counterparts [45,46]. Pregnancy among female drug misusers may present difficult clinical and other problems. Drug misuse can adversely affect the mother, the foetus and eventually the baby [47]. Obstetric and medical complica-

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tions and lack of antenatal care contribute to the health problems of infants born to drug-dependent women. Morbidity in infants born to drug-dependent women is related to the amount of prenatal care as well as to the types of drugs used, and increased prenatal care can reduce some maternal and neonatal adverse effects of illicit drug use [48]. Services concerned with the care of pregnant addicts should maintain good channels of communication to optimize care during the antenatal period, but communication and liaison between addiction services, antenatal clinics and obstetric hospitals is often unsatisfactory. Women drug misusers who are bringing up children face many special difficulties, especially when they are physically dependent on drugs. Powis et al. [42] found that almost all of the opiate-dependent mothers in her sample were living in poverty, and many in conditions of extreme poverty. Many women fear that their children will be taken into care, and often believe that social services regard them as unfit mothers purely on the basis of their drug use, regardless of their parenting capabilities [49]. Children are often present when their parents are using drugs and are able to describe their parents, drug activities in detail, may show symptoms of neglect and are often left without adult supervision, even at very young ages [50]. Women who are severely dependent on heroin may feel that if they seek treatment, this might expose their drug problems and possible failings and increase the risk of their children being taken from them.

DRUG CAREERS OR THE NATURAL HISTORY OF ADDICTION ?

These two perspectives relate to fundamentally different models of understanding the phenomenon. The concept of a drug-using career considers drug use as a ‘career’ during which the individual enters and leaves various activities. Thus prostitution or drug use may be considered as an ‘occupation’ within a deviant career. This ‘career’ model involves consideration of external influences on the drug taking (contingency)

and the position of choice over behaviour (voluntarism). Individuals may move in and out of drug use during a ‘career’. Parker et al. [15] refer to the ‘incidence’ and ‘outcidence’ of the behaviour that between them dictate the prevalence. A different perspective is obtained from study of the literature on the natural history of addiction. Workers from various backgrounds have referred to

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‘epidemics’, with the linked presumption of greater risk of ‘infection’ in the disadvantaged or vulnerable. Edwards [51] has described a tighter concept of natural history as being ‘the sequential development of designated biological processes within the individual’. This approach allows for a longer-term

20.7

TREATMENT – POLICY AND CLINICAL APPROACHES

Formal treatment procedures are only one set of variables that affect any changes that might occur. Outcome is also affected by demographic and psychological characteristics, and by a range of social and environmental factors. Treatment and prevention initiatives may be along the lines of public health initiatives, such as needle and

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perspective, for different degrees of involvement with the drug at different points in time and certainly represents a more tangible concept for consideration and debate. The two concepts (‘career’ and ‘natural history’) may not be mutually exclusive.

syringe exchange schemes or wide provision of hepatitis B vaccination, or may alternatively be at the level of individual treatment (such as management of detoxification). Often there is overlap, as in the public benefit seen with methadone and buprenorphine treatment for opiate addicts and the resulting reduced levels of acquisitive crime and much lower risk of overdose.

COMMUNITY-BASED TREATMENT AND OTHER INITIATIVES

Three major changes to the provision of treatment and other responses in the UK are described in this section the greater role of primary care, the introduction of harm reduction orientation and specific needle and syringe exchange schemes, and the deliberate roll-out of wider availability of opiate substitution treatments (methadone and buprenorphine maintenance). General practitioners (GPs) and their primary care colleagues are an increasingly important and prominent part of the contact with, and provision of treatment to, those individuals involved in drug abuse. Back in 1985, only 19% of GPs had seen a drug misuser in their practice in the preceding month, but this figure had expanded to 50% by 2001 [52,53]; furthermore, this had led to the prescribing of treatment in only 31% of occasions compared with 50% in 2001. GPs now probably treat about half of the opiate addicts in treatment in the UK. Nevertheless, alongside this enthusiasm for the greater involvement of GPs and presumed consequent greater access to treatment [54,55], a cautionary note needs to be sounded [56,57]. The integrated approach also has inherent problems, with clear evidence of continued discrimination on grounds of diagnosis 52% of GPs

report that they would not be willing to prescribe either for detoxification or maintenance reasons to an opiate user and 10% report not being willing to see the patient or treat any aspect of their condition including general medical needs or, for example, hepatitis B vaccination [53]. There are undoubtedly good aspects to this much wider primary care provision, but all is not yet clear about further progress toward proper availability at time of need. Needle and syringe exchange schemes were established across the UK in the late 1980s [58,59] some freestanding, some linked to pre-existing nonstatutory drug agencies and some linked to NHS drug treatment centres. A further variant has been the pharmacybased needle and syringe scheme, which has become increasingly widely provided [60,61]. These are an example of an approach to public health planning and individual and public health response which is often termed ‘harm reduction’. By 2005, it was estimated that there were over 1700 exchange programmes in England, with the majority (over 70%) provided by pharmacies [62]. An estimated 27 million syringes were distributed in the UK during 1997 [63]. Such schemes have been successful in making contact with

DRUG USE, DRUG PROBLEMS AND DRUG ADDICTION: SOCIAL INFLUENCES AND SOCIAL RESPONSES

drug users who were otherwise not currently in contact with drug treatment services. More recently data from schemes in the North West of England found that anabolic steroid users were the largest group of new users [64]. Needle exchange schemes are now seen as key to containing the spread of the hepatitis C virus among injecting drug users. The third major development has been the deliberate expansion of oral methadone maintenance (and more recently of similar buprenorphine maintenance). Although maintenance had always been part of the treatment system in the UK, it had become less frequently prescribed through the 1980s. With the review of the response to HIV and with the steadily

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accumulating robust evidence base for methadone maintenance [65], the potential constructive contribution of maintenance prescribing was identified [66,67], since which time the extent of provision of methadone maintenance has increased greatly, with more than a quadrupling in the number of patients in maintenance treatment through the 15 years up to the time of writing. However, despite more provision of this important treatment, there is a persistent disturbing trend for this treatment to be provided subtherapeutically (or at least suboptimally), with more than half of all maintenance doses still being prescribed at daily doses below the lower limit of the recommended therapeutic dose range despite a decade of advice to the contrary [68].

NARCOTICS ANONYMOUS AND TWELVE-STEP TREATMENTS

Since its inception in 1935, Alcoholics Anonymous (AA) has influenced the treatment of alcoholism and has gained increasing international popularity. Narcotics Anonymous (NA) is a direct descendant of Alcoholics Anonymous. Both AA and NA have flourished in many countries throughout the world and AA/ NA now probably has a larger population of drug abusers involved in its programme than any other drug recovery initiative [69]. NA/AA is a fellowship of people who want to do something about their drug/drink problems, and who meet on equal and friendly terms. The primary purpose of members is to stay sober and help others to achieve sobriety. The programme consists of studying and following the Twelve Steps. These are the essential principles and ingredients of the recovery process [70]. The Steps emphasize two general themes: belief in a ‘Higher Power’, which each individual defines for themselves and which represents faith and hope for recovery, and pragmatism doing ‘whatever works’ for the individual. Group meetings are one of the best known aspects of NA. When individuals join NA, they are usually encouraged to attend more than one meeting a week, and a target of attending 90 meetings in 90 days is often set. As members achieve sustained abstinence they may attend meetings less often, although it is recommended that they continue to attend meetings at least once a week, and more often if they feel vulnerable to relapse.

Brown et al. [69] identified several essential characteristics of initiatives such as NA that differentiate them from other interventions. First, they involve the individual acting in collaboration with others who share the same problems, to provide mutual support for each other’s recovery. NA suggested that ‘a meeting happens when two or more addicts gather to help each other stay clean’ [71]. This element of mutual support is seen as a key dynamic for change. It occurs both through the involvement of members of the Fellowship who share common problems and through the specific support that can be offered by the sponsor. The NA/AA philosophy sees addiction as an illness that permeates all aspects of the individual’s life, and which can only be controlled by life-long abstinence. This vast and daunting project is broken down into manageable parts and taken ‘one day at a time’. All of the Twelve-Step programmes see recovery from substance abuse as a continuing process, with every day involving an effort to remain free from drugs. The NA/AA disease concept is used to emphasize the need for the addict to take responsibility for their own behaviour and to participate actively in their own recovery [72]. Although the addict is not personally responsible for their illness, they are certainly seen as 100% responsible for their own recovery. Family, social and socioeconomic factors are recognized as possibly having contributed to the

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addict’s plight, but it is the individual who must take responsibility for the ways in which they respond to these conditions. NA offers a peer group that can support efforts to achieve and maintain abstinence and can be a powerful asset for anyone seeking to recover from drug addiction. The role modelling function of NA can be further assisted by the support, mentoring and policing offered by the sponsor. A further socially supportive function is that NA provides a structure for the member’s free time. Many drug addicts have difficulties in

20.10

finding new ways of using their leisure time. The NA group, with its evening meetings, provides an activity during a high-risk time of the day that helps to support continuing abstinence. The influence of Twelve-Step programmes now extends beyond the NA/AA meetings themselves, and many treatment programmes provide interventions that are substantially based upon the Twelve Steps. Many other services supplement their programmes by recommending NA/AA attendance as an aftercare resource.

REHABILITATION HOUSES/THERAPEUTIC COMMUNITIES

Residential drug-free rehabilitation houses have traditionally been described as falling into three categories concept-based therapeutic communities, Christian houses and community-based hostels. To this list needs to be added the more recently established shorter-stay Twelve-Step or AA/NA-orientated residential houses. Concept-based therapeutic communities are derived from the original Synanon in California in 1958. Typically such houses are staffed by a mixture of professionally trained personnel working alongside former addicts who have usually graduated from the treatment programme. Mahon [73] has described the structure of the Concept House as rigidly hierarchical. Initially the new resident absolves themselves of all responsibility, which is taken over by the community, but gradually the resident assumes responsibility for self, for an extended network of residents and gradually to the wider community. This is often extended to include voluntary work outside the house as well as occupying a quasi-staff position within the community. Further components include halfway houses and bridging accommodation for graduates so as to ease the passage back into the general community. Length of stay correlated positively with subsequent drug-free status. However, as with virtually all drug treatment programmes, therapeutic communities are dogged with the problem of early self-discharge: a study by Ogborne and Melotte [74] reported that a third left within the first month and only a third stayed for more than six months.

Christian houses form a smaller body within UK rehabilitation houses. Two clear subcategories appear to exist one relates to houses in which the Christian faith is part of the motivation of the staff but in which faith is not a prerequisite for entry by a resident whereas with the other group the commitment to Christianity on the part of the resident is deemed essential. Community houses represent the smallest group within this section and are the least well defined. The emphasis is placed on reintegration back into the community during this period of recovery, with early encouragement to develop links with the local community. Typically these houses contain a less rigid structure with less reliance on confrontational and group psychotherapeutic techniques. The final type of residential rehab is orientated around Twelve-Step or AA/NA work (see section above) and is based on the Minnesota Model centres in the US, such as those at Hazelden and, more recently, the Betty Ford clinics [75 77]. A distinctive characteristic of such centres is the explicit emphasis on helping the client to affiliate with the relevant Twelve-Step Fellowship (usually either AA or NA, but also Cocaine Anonymous (CA) and other fellowships). These Twelve-Step-orientated rehab houses typically involve shorter durations of stay (e.g. 4 to 8 weeks, in contrast to the several months of most other rehab houses), and this is probably more achievable precisely because of the strong aftercare structure offered through the increasingly extensive network of Twelve-Step Fellowship meetings in the wider

DRUG USE, DRUG PROBLEMS AND DRUG ADDICTION: SOCIAL INFLUENCES AND SOCIAL RESPONSES

community. This orientation is increasingly being incorporated, at least in part, in NHS inpatient addic-

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tion treatment units [78,79] and this may increase ease of flow between such agencies in future.

THE PROBLEM OF RELAPSE

Relapse is one of the most central clinical problems in the addictions. Even for the heavily dependent drug-taker it is often relatively easy to stop taking drugs, but it is then very difficult to remain drug free. The early studies of Hunt, Barnett and Branch demonstrated nearly identical patterns of relapse in groups of heroin addicts, alcoholics and cigarette smokers [80], and this finding has been repeatedly confirmed. In a prospective study of relapse among heroin addicts after treatment, Gossop et al. [81] found that the critical period for relapse was immediately after leaving treatment. A large proportion of their subjects used opiates within a matter of only days or a few weeks of leaving an intensive inpatient treatment programme: 42% of the sample had used heroin at least once within one week of leaving treatment, and at six-week follow-up 71% had lapsed. This finding would appear to confirm the most pessimistic views about the prognosis of heroin addicts. However, these apparently depressing findings must be seen in the broader context of subsequent events. It is clear from the results cited by Gossop et al. [81] that the initial lapse to opiate use did not herald a full-blown relapse to an addictive pattern of use. There was a clear ‘recovery-after-lapse’ effect during the six-month follow-up period, which showed increasing numbers of subjects moving towards abstinence. By the sixmonth point, 45% of the sample were abstinent from opiates (as confirmed by urine analysis) and were living in the community. There has been much effort to develop a model for understanding and preventing relapse. Marlatt and his colleagues have developed a self-management programme that combines behavioural skill training, cognitive interventions and life-style change procedures. It is designed to help support the maintenance stage of change, and its goal is to teach individuals who are trying to change behaviour now to anticipate and cope with the problems that will increase their risk of relapse [82].

The two central pillars of the relapse prevention approach are the identification of high-risk situations and the development and strengthening of coping strategies. In Litman’s model of survival [83], the chances of avoiding relapse are seen as depending on an interaction between: 1. Situations perceived to be dangerous for the individual in that they may precipitate relapse. 2. The coping strategies available within the individual’s repertoire to deal with these situations. 3. The perceived effectiveness of these coping behaviours. 4. The individual’s self-perception and self-esteem and the degree of learned helplessness with which they view their situation. Among the high-risk situations that are a common problem for ex-addicts attempting to maintain their abstinence from heroin are negative mood states (such as sadness, boredom and anxiety), external events and cognitive factors [84,85]. There are also strong risks attached to being exposed to drug-related cues. An important first task for the client is to develop an understanding of the way in which internal and external cues may create a high-risk situation. Structured problem-solving techniques are employed alongside rehearsal/role play. The client is warned of the dangers of the way in which covert planning may lead to relapse, and of apparently irrelevant decisions that may ‘by chance’ lead the client to happen to find himself outside his old drug dealer’s house. The client must learn to spot early warning signals for these potential relapse situations. The importance of the wider aspects of recovery and aftercare have come to the fore with the emergence of differing opinions on the appropriateness of maintenance treatments as techniques to achieve

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improvement in health and social situations. It is clearly mistaken and offensive to regard mere retention in a maintenance programme as recovery, and it is similarly flawed to regard mere achievement of abstinence as recovery. On their own, neither ‘bums on seats’ nor ‘clean piss in pots’ are valid measures of outcome, but they are legitimately part of the bigger picture that must be considered [86]. In this regard, the

20.12

UK Drug Policy Commission (UKDPC) has put forward a wider more-inclusive perspective on recovery with a proposed overarching description that: ‘The process of recovery from problematic substance use is characterised by voluntarily-sustained control over substance use which maximises health and wellbeing and participation in the rights, roles and responsibilities of society’ [87].

`SPONTANEOUS' OR `NATURAL' RECOVERY

Little attention has been paid to apparently spontaneous or natural patterns of recovery. Reference is occasionally made to Winick’s early description of the ‘maturing out’ process in which recovery was seen as a spontaneous result of age and length of addiction [88]. Subsequent analyses have considered the factors (including age and length of addiction) which might influence the timing of this seemingly spontaneous recovery. Anglin, Brecht and Woodward [89] reported on their large-scale follow-up study and noted that natural recovery appears to be influenced by addiction-related or contextual factors (e.g. property crime and drug dealing), which may retard the rate of any natural recovery. Stimson and Oppenheimer [90] reported on their London study of heroin addicts recruited from treatment centres in 1968. Over the course of a decade, 35% became stably drug-free, but had travelled down many different pathways to reach this status. Attributions from the subjects themselves included the achievement of employment, finding new friends and the giving up of former addict friends; for many a geographical move had been central. Wille [91] looked at data from the same cohort and identified two basic patterns of recovery a planned, internally motivated, voluntary way of becoming abstinent and a separate, externally enforced way (both of which had been successful with different individuals). Specific study of spontaneous recovery from heroin addiction was undertaken by Schasre [92], who reported on findings from 40 subjects who identified the following key factors negative experiences with peers, pressure from partner/ spouse, increased awareness of the stigma of addiction, geographical move and the disappearance of the

regular drug dealer. Waldolf and Biernacki undertook a series of studies of natural recovery among San Francisco heroin addicts, and in their review of the literature [93] proposed that the process of natural recovery concerns change in a person’s identity, with the replacement of the addict identity by some more ordinary identity. In this regard it is interesting to consider the intermediate state between these identities that might be achieved by successful recruitment into methadone maintenance programmes, which Preble and Miller described as the ‘interworld’ [94]. This may perhaps link with Biernacki’s later proposal [95] that for the entrenched addict it may be necessary to provide this new identity in order to facilitate natural recovery (i.e. in contrast to relying on some pre-existing perceived role set). Likewise Jorquez [96] suggests that recovery involves two concurrent processes extrication from the social ties and dependencies of the drug world, and accommodation to the new ordinary life-style. It is also important to remember that many efforts at detoxification are actually self-detox efforts, and that the short-term success of these efforts may be similar to the success rate of more formal treatment approaches [97,98]. It is probable that our perspectives on ‘treatment’ and ‘recovery’ are too strongly determined by the changes that are more easily observed in the hospital or outpatient environments and we may thus fail to give proper consideration to strategies that might support individuals implementing self-initiated change, just as might be encouraged and supported in the alcohol and smoking cessation fields.

DRUG USE, DRUG PROBLEMS AND DRUG ADDICTION: SOCIAL INFLUENCES AND SOCIAL RESPONSES

20.13

MANIPULATING THE ENVIRONMENT

The psychosocial elements of treatment provision can be every bit as influential as the medication elements that usually attract most of the media, scientific and clinical attention. The National Institute for Health and Clinical Excellence [99] has recently reviewed the area of Psychosocial Aspects of Treatment in the Drug Misuse field, and has identified the major enhanced gains that can be achieved by contingency management strategies and targeted incentives for health,

20.14

designed to reward and increase the quantity and robustness of health and social improvements in the drug user’s former circumstances [100]. Systematic reviews of the area have identified an extensive increase in health and social gains from contingency management approaches across a wide range of types of drug problem with opiates such as heroin, stimulants such as cocaine, as well as with alcohol and with smoking [101,102].

MANIPULATING THE HOME ENVIRONMENT

Azrin and colleagues [103 105] have studied various community reinforcement strategies in the treatment of recovering alcoholics (although the data have yet to be replicated with subjects dependent on other drugs). Their approach is based on principles of operant reinforcement and involves the systematic rearrangement of existing community reinforcers such as job, family, social and recreational opportunities. These are rearranged in such a way that further drinking results in time out from these reinforcers. The model is further developed by the incorporation of a buddy system, a telephone report-in system, an early warning relapse notifica-

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tion system and group counselling [104], and in a later study by an additional component built around self-administration of disulfiram (Antabuse) [105]. The authors report on the strikingly better progress of alcoholics assigned to the community reinforcement programme, with the study group spending only 2% of their time drinking compared with 55% for the control group, and with similar differences in outcome measures of employment, time with families and time out of institutions. The effects were also remarkably durable, and were in large part maintained at this level of magnitude for the twoyear follow-up period.

STUDIES OF THE NEIGHBOURHOOD AND ITS INFLUENCE

Study of the social network of drug users may be expected to be a productive line of enquiry. As yet, this area has been minimally studied as a possible area for intervention, although the current enthusiasm for detached social work and for outreach work represents possible avenues into this field of enquiry and intervention. Hawkins and Fraser [106] found strong correlations between frequency of opiate use and the degree of engagement in drug-using networks (and also the degree of disengagement from non-using networks). This included the number of contacts from work, school or other organizations, and the authors concluded that many such opiate addicts entering

treatment were now in social relationships in which the drug use and criminal behaviour were valued positively by their peers who saw little reward associated with more socially acceptable activities. In an extension of this study they looked at the post-treatment progress of former heroin addicts leaving a residential treatment programme; here again Hawkins and Fraser found that high levels of continued contact with drug users was associated with higher levels of relapse back to heroin use [106]. The evidence from these authors accords with the findings from the naturalistic studies described above (e.g. see Reference [93]) that social network support from

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key individuals appears to be influential on both drug use and subsequent recovery, and there may be con-

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siderable scope for adaptation of the immediate social environment of addicts during and after treatment.

CONCLUSION

Social and environmental factors have a major influence on the extent of drug use both within the community and within the individual. New epigenetic and epigenomic work in this area will require exploration of the interplay of these factors with genetic markers that are beginning to be identified. Furthermore, the time-course and nature of continued drug use within individuals and within groups appears susceptible to influence in ways that produce strikingly different outcome data in different studies. As yet, efforts to tease out the active factors in bringing about these different outcomes have been disappointingly imprecise: certainly one of the major areas of continued research must be in the area of factors influencing the natural history or career of drug use at the individual and group level, until such time as the essential therapeutic components can be isolated and subsequently administered in a deliberate and controlled approach. There will then exist the task of identifying different matchings of individuals and treatments so as to ensure maximum compatibility and acceptability of different approaches. The study of drug use and addiction in its social context offers a suitable laboratory for the development of tomorrow’s preventive and treatment techniques.

5.

6.

7.

8.

9.

10.

11.

REFERENCES 12. 1. World Health Organization (WHO) (1994) WHO Lexicon of Alcohol and Drug Terms, WHO, Geneva. 2. Hoare, J. and Flatley, J. (2008) Drug Misuse Declared: Findings from the 2007/08 British Crime Survey. England and Wales, Home Office, London. 3. National Treatment Agency (2008) Statistics from the National Drug Treatment Monitoring System (NDTMS), 1 April 31 March 2007, National Treat ment Agency, London. 4. Farrell, M., Howes, S., Taylor, C. et al. (2003) Sub stance misuse and psychiatric comorbidity: an over view of the OPCS National Psychiatric Morbidity

13.

14.

Survey. International Review of Psychiatry, 15 (1 2), 43 49. Farrell, M., Boys, A., Bebbington, P. et al. (2002) Psychosis and drug dependence: results from a national survey of prisoners. British Journal of Psy chiatry, 181, 393 398. Johnston, L. D., O’Malley, P. M., Bachman, J. G. and Schulenberg, J. E. (2008) Monitoring the Future. National Survey Results on Drug Use, 1975 2007. Volume I: Secondary School Students, National Insti tute on Drug Abuse, Bethesda, Maryland. Substance Abuse and Mental Health Services Admin istration (2008) Results from the 2007 National Survey on Drug Use and Health: National Findings, SAMHSA, Rockville, Maryland. Robins, L., Davis, D. H. and Goodwin, D. W. (1974) Drug users in Vietnam: a follow up on return to USA. American Journal of Epidemiology, 99 (4), 235 249. Robins, L., Helzer, J. E. and Davis, D. H. (1975) Narcotic use in South East Asia and afterwards. Archives of General Psychiatry, 32 (8), 955 961. Winick, C. (1980) A theory of drug dependence based on role, access to, and attitudes towards drugs, in Theories on Drug Abuse (eds D. J. Lettieri, M. Sayers and H. W. Pearson), National Institute on Drug Abuse, Rockville, Maryland, pp. 225 235. Zinberg, N. (1984) Drug Set and Setting, The Basis for Controlled Intoxicant Use, Yale University Press, New Haven, Connecticut. Polkinghorne, J., Gossop, M. and Strang, J. (2005) The Government Task Force and its review of drug treat ment services: the promotion of an evidence based approach, Heroin Addiction and the British system. Volume II. Treatment and Policy Responses (eds J. Strang and M. Gossop), Routledge, Abingdon, pp. 198 205. Gossop, M., Marsden, J., Stewart, D. and Kidd, T. (2003) The National Treatment Outcome Research Study (NTORS): 4 5 year follow up results. Addic tion, 98 (3), 291 303. Parker, H., Newcombe, R. and Bakx, K. (1987) The new heroin users: prevalence and characteristics in

DRUG USE, DRUG PROBLEMS AND DRUG ADDICTION: SOCIAL INFLUENCES AND SOCIAL RESPONSES

15.

16.

17. 18.

19. 20.

21. 22.

23.

24.

25.

26.

27.

Wirral, Merseyside. British Journal of Addiction, 82 (2), 147 157. Parker, H., Bakx, K. and Newcombe, R. (1988) Living with Heroin: The Impact of a Drugs ‘Epidemic’ on an English Community, Open University Press, Milton Keynes. Pearson, G., Gilman, M. and McIver, S. (1986) Heroin use in the north of England. Health Education Journal, 45 (3), 186 189. Pearson, G. (1987) The New Heroin Users, Basil Blackwell, Oxford. Pearson, G. (1987) Heroin and unemployment, in A Land Fit for Heroin: Drugs in Britain in the 1980s (eds N. Dorn and N. South), Macmillan, London. Robertson, J. R. (1985) Drug users in contact with general practice. British Medical Journal, 290, 34 35. Robertson, J. R., Bucknall, A. B. V., Welsby, P. D. et al. (1986) Epidemic of AIDS related virus (HTLV III; LAV) infection among intravenous drug abusers. Brit ish Medical Journal, 292, 527 529. Greenwood, J. (1990) Creating a new drug service in Edinburgh. British Medical Journal, 300, 587 589. Robertson, J. R. (2005) The arrival of HIV, in Heroin Addiction and the British System. Volume I. Origins and Evolution (eds J. Strang and M. Gossop), Routle dge, Abingdon. Stimson, G. V., Alldritt, L., Dolan, K. and Donoghoe, M. (1988) Syringe exchange schemes for drug users in England and Scotland. British Medical Journal, 29, 1717 1719. McDermott, P. (2005) The great Mersey experiment: the birth of harm reduction, in Heroin Addiction and the British System. Volume I. Origins and Evolution (eds J. Strang and M. Gossop), Routledge, Abingdon, pp. 139 156. Gruer, L., Wilson, P., Scott, R. et al. (1997) General practitioner centred scheme for treatment of opiate dependent drug injectors in Glasgow. British Medical Journal, 314, 1730 1735. Gruer, L. (2005) The emergence of city wide public health responses to the drugs problem, in Heroin Addiction and the British System. Volume II. Treat ment and Policy Responses (eds J. Strang and M. Gossop), Routledge, Abingdon, pp. 156 166. Wilson, P., Watson, R. and Ralston, G. E. (1994) Methadone maintenance in general practice: patients, workload, and outcomes. British Medical Journal, 309, 641 644.

273

28. Scott, R. T. A., Gruer, L. D., Wilson, P. and Hinshel wood, S. (1995) Methadone maintenance treatment Glasgow has an innovative scheme for encouraging GPs to manage drug misusers. British Medical Jour nal, 310, 464 465. 29. Roberts, K., McNulty, H., Gruer, L. et al. (1998) The role of Glasgow pharmacists in the management of drug misuse. International Journal of Drug Policy, 9 (3), 187 194. 30. Gruer, L. and Roberts, K. (2003) New approaches to dispensing controlled drugs: supervised consumption of methadone, in Drug Misuse and Community Phar macy (eds J. Sheridan and J. Strang), Taylor & Francis, London, pp. 137 148. 31. Brooke, D., Taylor, C., Gunn, J. and Maden, A. (2002) Substance misuse as a marker of vulnerability among male prisoners on remand. British Journal of Psychiatry, 177 (3), 248 251. 32. Strang, J., Gossop, M., Heuston, J. et al. (2006) Persistence of drug use during imprisonment: relation ship of drug type, recency of use and severity of dependence to use of heroin, cocaine and ampheta mine in prison. Addiction, 101, 1125 1132. 33. Seaman, S. R., Brettle, R. P. and Gore, S. M. (1998) Mortality from overdose among injecting drug users recently released from prison: database linkage study. British Medical Journal, 316, 426 428. 34. Bird, S. M. and Hutchinson, S. J. (2003) Male drugs related deaths in the fortnight after release from prison: Scotland, 1996 99. Addiction, 98 (2), 185 190. 35. Farrell, M. and Marsden, J. (2008) Acute risk of drug related death among newly released prisoners in Eng land and Wales. Addiction, 103 (2), 251 255. 36. Brooke, D. (1995) The addicted doctor caring pro fessionals? British Journal of Psychiatry, 166, 149 153. 37. Gossop, M., Stephens, S., Stewart, D. et al. (2001) Health care professionals referred for treatment of alcohol and drug problems. Alcohol and Alcoholism, 36 (2), 160 164. 38. Fowlie, D. G. (1999) The misuse of alcohol and other drugs by doctors: a UK report and one region’s response. Alcohol and Alcoholism, 34 (5), 666 671. 39. Strang, J., Wilks, M., Wells, B. and Marshall, J. (1998) Missed problems and missed opportunities for addicted doctors. British Medical Journal, 316, 405 406.

274

SOCIAL DETERMINANTS

40. Powis, B., Griffiths, P., Gossop, M. and Strang, J. (1996) The differences between male and female drug users: community samples of heroin and cocaine users compared. Substance Use and Misuse, 31 (5), 529 543. 41. Chatham, L. R., Hiller, M. L., Rowan Szal, G. A. et al. (1999) Gender differences at admission and follow up in a sample of methadone maintenance clients. Sub stance Use and Misuse, 34 (4), 1137 1165. 42. Powis, B., Gossop, M., Bury, C. et al. (2000) Drug using mothers: social, psychological and substance use problems of women opiate users with children. Drug and Alcohol Review, 19 (2), 171 180. 43. Gossop, M., Marsden, J., Steward, D. et al. (1998) Substance use, health and social problems of service users at 54 drug treatment agencies. British Journal of Psychiatry, 173, 166 171. 44. Marsden, J., Gossop, M., Stewart, D. et al. (2000) Psychiatric symptoms among clients seeking treat ment for drug dependence intake data from the National Treatment Outcome Research Study. British Journal of Psychiatry, 176, 285 289. 45. Fiorentine, R., Anglin, M. D., Gil Rivas, V. and Taylor, E. (1997) Drug treatment: explaining the gender paradox. Substance Use and Misuse, 32 (6), 653 678. 46. Stewart, D., Gossop, M., Marsden, J. et al. (2003) Similarities in outcomes for men and women after drug misuse treatment: results from the National Treatment Outcome Research Study (NTORS). Drug and Alco hol Review, 22, 35 41. 47. Johnson, K., Gerada, C. and Greenough, A. (2003) Substance misuse during pregnancy. British Journal of Psychiatry, 183, 187 189. 48. Jansson, L. M., Svikis, D., Lee, J. et al. (1996) Preg nancy and addiction. Journal of Substance Abuse Treatment, 13 (4), 321 329. 49. Taylor, A. (1993) Women Drug Users: An Ethnogra phy of a Female Injecting Community, Clarendon Press, Oxford. 50. Davis, S. K. (1990) Chemical dependency in women: a description of its effects and outcome on adequate parenting. Journal of Substance Abuse Treatment, 7 (4), 225 232. 51. Edwards, G. (1984) Addiction: A Challenge to Society. New Society, 70 (1140) pp. 133 135. 52. Glanz, A. and Taylor, C. (1986) Findings of a national survey of the role of general practitioners in the

53.

54.

55.

56.

57.

58.

59.

60.

61.

62.

63.

64.

treatment of opiate misuse. British Medical Journal, 293, 427 430. Strang, J., Sheridan, J., Hunt, C. et al. (2005) The prescribing of methadone and other opioids to addicts: national survey of GPs in England and Wales. British Journal of General Practice, 55, 444 451. Gerada, C. (2000) Drug misuse and primary care in the new NHS. Drugs, Education Prevention and Policy, 7 (3), 213 221. Gerada, C. (2005) RCGP Guide to the Management of Substance Misuse in Primary Care, Royal College of General Practitioners, London. Merrill, J. and Ruben, S. (2000) Treating drug depen dence in primary care: worthy ambition but flawed policy? Drugs, Education Prevention and Policy, 7 (3), 203 212. Merrill, J. and Ruben, S. (2005) Treating drug depen dence in primary care: reflecting on the problems as well as the potential, in Heroin Addiction and the British System. Volume II. Treatment and Policy Responses (eds J. Strang and M. Gossop), Routledge, Abingdon, pp. 81 93. Stimson, G., Donoghoe, M., Lart, R. and Dolan, K. (1990) Distributing sterile needles and syringes to people who inject drugs: the syringe exchange experi ment, in AIDS and Drug Misuse: The Challenge for Policy and Practice in the 1990s (eds J. Strang and G. Stimson), Routledge, London, pp. 222 231. Lart, R. and Stimson, G. (1990) National survey of syringe exchange schemes in England. British Journal of Addiction, 85 (11), 1433 1444. Sheridan, J., Lovell, S., Turnbull, P. et al. (2000) Pharmacy based needle exchange (PBNX) schemes in South East England: a survey of service providers. Addiction, 95 (10), 1551 1560. Shorrock, T. (2003) The history and operation of pharmacy needle exchanges, in Drug Misuse and Community Pharmacy (eds J. Sheridan and J. Strang), Taylor & Francis, London, pp. 113 124. Abdulrahim, D., Gordon, D. and Best, D. (2006) Findings of a Survey of Needle Exchanges in England, National Treatment Agency, London. Parsons, J., Hickman, M., Turnbull, P. J. et al. (2002) Over a decade of syringe exchange: results from 1997 UK survey. Addiction, 97 (7), 845 850. McVeigh, J., Beynon, C. and Bellis, M. A. (2003) New challenges for agency based syringe exchange schemes: analysis of 11 years of data (1991 2001) in

DRUG USE, DRUG PROBLEMS AND DRUG ADDICTION: SOCIAL INFLUENCES AND SOCIAL RESPONSES

65.

66. 67.

68.

69.

70.

71.

72.

73. 74.

75.

76.

77.

Merseyside and Cheshire, United Kingdom. Interna tional Journal of Drug Policy, 14 (5 6), 399 405. Ward, J., Mattick, R. P. and Hall, W. (1998) Methadone Maintenance Treatment and Other Opioid Replace ment Therapies, Harwood Academic Publishers, Amsterdam. Advisory Council on the Misuse of Drugs (1993) Aids and Drug Misuse Update, HMSO, London. Farrell, M., Ward, J., Mattick, R. et al. (1994) Metha done maintenance treatment in opiate dependence: a review. British Medical Journal, 309, 997 1001. Strang, J., Manning, V., Mayet, S. et al. (2007) Does prescribing for opiate addiction change after national guidelines?: methadone and buprenorphine prescrib ing to opiate addicts by general practitioners and hospital doctors in England, 1995 2005. Addiction, 102 (5), 761 770. Brown, B. S., O’Grady, K. E., Farrell, E. V. et al. (2001) Factors associated with frequency of 12 step attendance by drug abuse clients. American Journal of Drug and Alcohol Abuse, 27 (1), 147 160. Emrick, C. D. (1999) Alcoholics Anonymous and other twelve step groups, in Textbook of Substance Abuse Treatment (eds M. Galanter and H. D. Kleber), American Psychiatric Association, Washington, DC. Narcotics Anonymous (1988) Twelve Steps and Twelve Traditions, Narcotics Anonymous, Chats worth, California. Hill, S. Y. (1985) The disease concept of alcoholism: a review. Drug and Alcohol Dependence, 16 (3), 193 214. Mahon, T. (1973) Therapy or brain washing? Drugs and Society, 2 (5), 7 10. Ogborne, A. C. and Melotte, C. (1977) An evaluation of the therapeutic community for former drug users. British Journal of Addiction, 72 (1), 75 82. Cook, C. (1988) The Minnesota Model in the manage ment of drug and alcohol dependency: miracle or myth? Part 1. The philosophy and the programme. British Journal of Addiction, 83 (6), 625 634. Cook, C. (1988) The Minnesota Model in the manage ment of drug and alcohol dependency: miracle, method or myth? Part 2. Evidence and conclusion. British Journal of Addiction, 83 (7), 735 748. Leighton, T. and Barton, N. (2005) The origins, arrival and spread of residential Minnesota Model centres across the UK, in Heroin Addiction and the British system. Volume II. Treatment and Policy Responses

78.

79.

80.

81.

82. 83.

84.

85.

86. 87.

88. 89.

90.

275

(eds J. Strang and M. Gossop), Routledge, Abingdon, pp. 175 186. Best, D. W., Harris, J. C., Gossop, M. et al. (2001) Are the twelve steps more acceptable to drug users than to drinkers? A comparison of experiences of and attitudes to Alcoholics Anonymous (AA) and Narco tics Anonymous (NA) among 200 substance misusers attending inpatient detoxification. European Addic tion Research, 7 (2), 69 77. Harris, J., Best, D., Gossop, M. et al. (2003) Prior Alcoholics Anonymous (AA) affiliation and the acceptability of the twelve steps to patients entering UK statutory addiction treatment. Journal of Studies on Alcohol, 64 (2), 257 261. Hunt, W. A., Barnett, L. W. and Branch, L. G. (1971) Relapse rates in addiction programmes. Journal of Clinical Psychology, 27 (4), 455 456. Gossop, M., Green, L., Phillips, G. and Bradley, B. (1989) Lapse, relapse and survival among opiate addicts after treatment: a prospective follow up study. British Journal of Psychiatry, 154, 348 353. Marlatt, G. and Gordon, J. (eds) (1985) Relapse Pre vention, Guilford Press, New York. Litman, G. (1986) Alcohol survival: the prevention of relapse, in Treating Addictive Behaviors: Processes of Change (eds W. R. Miller and N. Heather), Plenum, New York, pp. 391 405. Bradley, B., Phillips, G., Green, L. and Gossop, M. (1989) Circumstances surrounding the initial lapse to opiate use following detoxification. British Journal of Psychiatry, 154, 354 359. Marlatt, G. A. and George, W. (1984) Relapse pre vention: introduction and overview of the model. British Journal of Addiction, 79 (3), 261 273. Ashton, M. (2008) The New Abstentionists. Druglink 23, January February suppl. UK Drug Policy Commission (2008) Recovery Con sensus Statement: Developing a Vision of Recovery, UKDPC, London. Winick, C. (1962) Maturing out of narcotic addiction. UN Bulletin of Narcotics, 14 (1), 1 7. Anglin, M. D., Brecht, M. L. and Woodward, J. A. (1986) An empirical study of maturing out: conditional factors. International Journal of the Addictions, 21 (2), 233 246. Stimson, G. and Oppenheimer, E. (1982) Heroin Addiction: Treatment and Control in Britain, Tavistock, London.

276

SOCIAL DETERMINANTS

91. Wille, R. (1981) Ten year follow up of a representa tive sample of London heroin addicts. Clinic atten dance, abstinence and morality. British Journal of Addiction, 76 (3), 259 266. 92. Schasre, R. (1966) Cessation patterns among neophyte heroin users. International Journal of the Addictions, 1 (2), 23 32. 93. Waldorf, D. and Biernacki, P. (1979) Natural recovery from heroin addiction: a review of the literature. Journal of Drug Issues, 9 (2), 281 289. 94. Preble, E. and Miller, T. (1977) Methadone, wine and welfare, in Street Ethnography (ed. R. S. Weppner), Sage, Beverley Hills, California. 95. Biernicki, P. (1986) Pathways from Heroin Addiction: Recovery without Treatment, Temple University Press, Philadelphia, Pennsylvania. 96. Jorquez, J. S. (1983) The retirement phase of heroin using careers. Journal of Drug Issues, 13 (3), 343 365. 97. Gossop, M., Battersby, M. and Strang, J. (1991) Self detoxification by opiate addicts. British Journal of Psychiatry, 159, 208 212. 98. Noble, A., Best, D., Man, L. H. et al. (2002) Self detoxification attempts among methadone mainte nance patients: What methods and what success? Addictive Behaviors, 27 (4), 575 584. 99. National Collaborating Centre for Mental Health (2008) Drug Misuse: Psychosocial Interventions The NICE Guideline, British Psychological Society and the Royal College of Psychiatrists, London.

100. Pilling, S., Strang, J. and Gerada, C. (2007) Psycho social interventions for drug misuse and opiate detox ification: Summary of NICE clinical guidelines. Brit ish Medical Journal, 335, 203 205. 101. Lussier, J. P., Heil, S. H., Mongeon, J. A. et al. (2006) A meta analysis of voucher based reinforcement ther apy for substance use disorders. Addiction, 101 (2), 192 203. 102. Prendergast, M., Podus, D., Finney, J. et al. (2006) Contingency management for treatment of substance use disorders: A meta analysis. Addiction, 101 (11), 1546 1560. 103. Hunt, G. M. and Azrin, N. H. (1973) A community reinforcement approach to alcoholism. Behaviour Research and Therapy, 11 (1), 91 104. 104. Azrin, N. H. (1976) Improvements in the community reinforcement approach to alcoholism. Behaviour Research and Therapy, 14 (5), 339 348. 105. Azrin, N. H., Sisson, R. W., Meyers, R. and Godley, M. (1982) Alcoholism treatment by disulfiram and com munity reintorcement therapy. Journal of Behavior Therapy and Experimental Psychiatry, 13 (2), 105 112. 106. Hawkins, J. and Fraser, M. W. (1981) The social networks of drug abusers before and after treatment. Paper presented at the International Congress of Drugs and Alcohol, Jerusalem, Israel. Center for Social Welfare Research, University of Washington, Seattle.

21 Eating disorders Mervat Nasser Health Service and Population Research Department, Institute of Psychiatry, King' s College London, London, UK

21.1

FOOD, CULTURE AND SOCIETY

Health, food and body are uniquely individual concerns that are governed by a vast scope of social judgement, where the body can never be divided from the self or the self from the social. Food, therefore, is never ‘just food’ and eating practices have little to do with hunger or health needs and more to do with conditions of subjective identity and social relationships. The behaviour of eating is intimately bound up with social relations and cultural ideas, where food becomes analogues to language through which the human body communicates with the outside world [1,2]. Sociological research has recently been concerned with the relationship between eating behaviour and variables such as gender, socioeconomic class and the impact of ethnicity on shaping appetites and determining food choices [3]. In the majority of societies ‘feeding of the family’ is traditionally considered women’s work and the nature and quantity of food is historically determined by states of affluence and poverty, where food scarcity and abundance are often at the mercy of political and economic forces. Also, voluntary starvation or fasting is often connected with an ideological stance and frequently responds to a belief system or a symbolic structure within the culture itself [4].

Changes in food consumption and their effects on health have been an important theme in much of the recent writing on food and eating practices. The new concept of ‘food normality’ focuses on the idea of a ‘healthy diet’, a dietary pattern based on restricting and/or promoting the consumption of certain food items and nutrients. It also advises what, how much and when to eat [5]. The active promotion of specific models of eating patterns aims mainly towards regulating and standardizing the health and care of individuals in any given society. Self-regulation in relation to food is encouraged by the rapid increase in the diet industry and the proliferation of commercial establishments concerned with weight loss. Several studies showed dieting behaviour to be prevalent in 50 80% of younger women, who repeatedly reported concerns over weight and a desire to be slimmer [6]. This heightened concern with food and weight took place, however, against an increase in population weight norms, particularly for women [7]. This means that the link between ‘body’ and ‘eating practices’ cannot be properly evaluated except within a framework of reconciled biomedical instruction and the sociocultural script.

Principles of Social Psychiatry, second edition Edited by Craig Morgan and Dinesh Bhugra Ó 2010 John Wiley & Sons, Ltd.

278

SOCIAL DETERMINANTS

21.2

BEHAVIOURAL DISORDERS OF EATING: THE SPECTRUM OF MORBIDITY

Fear of fatness and the pursuit of thinness are modern terms that are now used interchangeably to refer to food restraint and pathological dieting behaviour. Anorexia nervosa is considered the parent syndrome. It was first reported in the latter part of the nineteenth century by William Gull [8] in Britain and Charles Lasegue [9] in France. Both described a distinct state of self-starvation peculiar to young women and likely to be caused by a host of emotional factors. However, the syndrome of anorexia nervosa did not achieve its status as a specific psychiatric entity until it was described by Gerald Russell in 1970. It was Russell, too, who coined the term ‘bulimia nervosa’ and regarded it initially as a serious variant of anorexia nervosa [10,11]. Bulimia nervosa is described as a condition of periodic overeating coupled with excessive concerns about weight and shape, leading to selfinduced vomiting or purging to compensate for the

21.3 21.3.1

effects of overeating. Both anorexia and bulimia nervosa were later subsumed under ‘eating disorders’ a term that was introduced to acknowledge the full spectrum of eating psychopathology. The concept has been incorporated in both the revised American Diagnostic Manual (DSM-IV-R) [12] and the International Classification of Mental and Behavioural Disorders (ICD-10) [13]. However, a degree of uncertainty about the classification of eating disorders remained, as reflected in categories such as ‘eating disorder not otherwise specified’, ‘binge eating disorder’ and obesity. ‘Eating disorder not otherwise specified’ is a ‘catch all’ category that includes people in the entry or resolving phase of either anorexia or bulimia nervosa and it has all the attitudes and behaviours that cause clinical impairment and yet does not meet the frequency, severity or duration criteria to be classified as a full syndrome [14].

EATING DISORDERS: THE SOCIOCULTURAL PERSPECTIVES

The thinness ideal and the spectrum hypothesis

The phenomenon of eating disorders was understandably linked to the cultivation of the ‘thin body ideal’ in Western culture and the promotion of thinness through the media, fashion and diet industries. The nature of eating disorder syndromes and the fact that they merge with more prevalent and the culturally acceptable dieting behaviour calls for an interpretation that is more clearly grounded in the culture we live in. Also, prevalence studies estimate subclinical cases (or partial syndromes) to be five times more common than the fullblown syndromes, suggesting that eating morbidity lies on a continuum of severity, with dieting at one end and the extreme forms of disordered eating at the other [15]. This finding ran parallel to a reported steady increase in the rate of the occurrence of eating disorders in the latter half of the twentieth century [16]. The spectrum hypothesis was further supported by the apparent increased risk for individuals in

certain subcultural groups where the demand for thinness is considered a licence to success, such as dancers, models and athletes [7,17,18].

21.3.2

The gender bias

Epidemiological research has also found a clear gender bias, with rates being consistently higher in women. The female-to-male ratio for anorexia and bulimia nervosa is reported to be on average 10 : 1. This skewed distribution has led to some feminist theorists positing that disordered eating is a kind of answer to the dilemma that Western women face in the modern world today, torn between traditional notions of attractiveness and fashionability and new modern values of autonomy, achievement and selfcontrol [19]. Even in the small percentage of men who develop such disorders, a disproportionate number of them have gender identity problems, with concerns about body shape [20].

EATING DISORDERS

21.3.3

Urbanization

Apart from this gender bias, epidemiological findings have also shown an apparent increase in the prevalence of eating disorders in proportion to the level of urbanization in any given society [21,22]. This has been explained on the basis of increased social mobility and subsequent changes within family structures, notably a tendency towards nuclearization. Also, as cities became more densely populated and diverse, eating patterns, food preferences and meal times seem to change, with an inevitable rise in rates of obesity followed by heightened weight consciousness and the development of disordered patterns of eating (for a further discussion refer to Reference [23]).

21.3.4

Cross-cultural risks – the global trend

Based on the notion of the cultural specificity of eating disorders, minority groups in Western cultures were generally considered to be less likely to develop such disorders. However, when studies were carried out on ethnic groups living in the UK and US the results showed the presence of these disorders, particularly among those with high aspirations, achievement orientation and conflict over ‘racial identity’. A correlation was also found between their morbid concerns over weight and the level of their acculturation [24,25]. Across cultures, eating disorders were initially thought to be rare or even absent, to the extent that the phenomenon was first seen as exclusively bound to Western culture. This was supported by the perceived differences in aesthetic standards between West and non-West. In contrast to the Western ideal of thinness, non-Western societies were seen to favour plumpness and associate with it positive attributes of wealth, fertility and femininity. Also, the fact that the majority of these societies belong to Third World economies made them appear unlikely to develop a disorder commonly associated with wealth and affluence. Added to this, the role of women in non-Western societies continued to be viewed within a restricted framework of the stereotyped and the traditional that

279

rendered them immune from the challenges of modernity that women in the West face [26,27]. The issue of the culture-boundedness of eating disorders was nonetheless challenged based on research emanating from the Middle East, the Far East, South America and Africa. This research suggested that eating disorders were increasingly becoming a global phenomenon and that rates of these disorders in non-Western societies were similar to or even higher than those reported in the West. Most of these transcultural studies were structured around a recurring binary hypothesis aiming to find out the prevalence rate of these disorders in non-Western societies and how these rates correlate with the level of exposuretoWesternculturalvalues.TheEatingAttitude Test Questionnaire (EAT) was commonly the main research instrument and some doubts were understandablyraised about thevalidity of usingsuch an instrument in different cultural settings Nonetheless, the EAT was certainly helpful in allowing for preliminary crosscultural comparisons to be made in this respect [28 30]. The deduction from the majority of these studies was that identification with Western cultural norms was responsible for this new psychopathology. There was no clear distinction then between ‘Westernization’ and ‘modernization’ and few studies actually attempted to measure this cultural change [26]. The issue of confused ‘racial identity’ that was studied earlier among black populations in both the UK and US was explored again in South Africa after the fall of the apartheid regime. A higher rate of eating disorders was detected in this country following this political change, and was attributed to a sense of shifting identity and altered self-conception among South African women [31,32]. The combined exposure to both ‘Western’ and ‘religious’ values was considered responsible for the higher rates of disordered eating behaviour among Muslim women in the United Arab Emirates and Iran [33,34]. Muslim women were the subject of earlier studies carried out in Egypt [35 37], Turkey [38] and Israel, where Arab Muslims had among the highest EAT scores [39]. This was again consistent with Mumford and Whitehouse’s [40] finding that Asian school girls from traditional Islamic backgrounds in the UK ran a higher risk of developing eating disorders than their white counterparts.

280

SOCIAL DETERMINANTS

Most of the research carried out on Asian groups in the UK was initially part and parcel of studies carried out on ‘Asian’ migrants. However, in the US, comparable studies were more concerned with East Asian and South Asian cultures and countries. Asian women attending American schools in the US were shown to have increased vulnerability to abnormal eating behaviours, compared with those in Hong Kong [25]. It was argued, however, that the overreliance on the ‘fear of fatness’ as a diagnostic criterion in eating psychopathology could have been responsible for the overall underestimation of the magnitude of these problems in societies like China, India and Japan [41]. In the case of Japan, an increased tendency towards anorexic behaviours was attributed to changes in traditional family structures in the post-war period, and was also linked to an increase in the level of urbanization with higher rates of eating disorders in cities than in rural areas of Japan [42 44]. A similar situation was found in Latin America, with eating disorders emerging as a significant problem in urban areas in particular. Cases of anorexia nervosa were reported in Chile and Brazil [45,46] and Argentina. In Buenos Aries the prevalence of eating disorders reached epidemic proportions, and was

interpreted on the basis of the ambiguities women in this country feel about their identity and how the ‘gender’ and the ‘national’ appear to interact to produce such conflict and confusion [47]. However, one of the most interesting findings of this research has come from Eastern Europe following the political economic changes. High rates of abnormal eating attitudes were reported in Hungary, Poland and the Czech Republic [48 51]. The liberalization of the economy and the undermining of the socialist collectivist structure in former communist Europe, as well as in countries that experimented with socialism, appeared to have contributed towards an increase in women’s ambiguity and ambivalence over gender roles in those societies. When socialist policies prevailed for a time, women by and large felt protected in their education, employment and child care and their sense of value seemed to derive from taking part in an overall social philosophy. However, with the political and economic changes, greater disparity began to emerge between what women expected of themselves and what they thought society expected of them [27,52] (for detailed reviews of all of these studies refer to References [26] and [53]) (see Figure 21.1).

Percentage of Dieting/Abnormal Eating Attitudes Worldwide 35.00% 30.00%

20.00% 15.00% 10.00%

Figure 21.1 Sociocultural risks/vulnerabil ities

Japan

India

Argentina

Israel (K)

S.Africa

Egypt

Countries

Israel (A)

U.K.

Italy

China

Poland

Hungary

Germany

Austria

5.00% 0.00%

% Eat+ive

25.00%

EATING DISORDERS

21.4

EATING DISORDERS, TRANSITIONAL CULTURAL FORCES AND THE ISSUE OF CULTURAL IDENTITY

What appears to be common in all the studies outlined above is the direct relationship between disordered eating behaviours and changing social patterns, suggesting that the underlying sociocultural dynamics of eating psychopathology lies in ‘cultural change’ and not in ‘culture’ per se [54]. Perhaps the most important of all these cultural changes is the domination of a ‘market economy’ in the majority of today’s societies. The liberalization of the economy is likely to produce disturbance in the differentials of wealth, an increase in consumerism and standardization of food preferences, and body ideals. The latter is bound to be marketed through the media, which is also currently deregulated. Worldwide consumerism has introduced in many societies American fast/fat food chains, with the inevitable changes in traditional local diets. The impact of the fast food culture could lead to a rise in the rates of obesity worldwide, prompting in turn greater weight consciousness and the possible emergence of eating psychopathology [26,55]. This kind of consumerism is commonly referred to as ‘consumerism without development’, meaning that these societies could in fact possess sufficient wealth to buy the life-style that makes them appear modern while their real economies remained weak. Subsequently the gap between rich and poor will inevitably increase, creating a sense of social imbalance, insecurity and resentment [56]. Also, with the rapid advent of an ‘online’ culture people may no longer relate to their own nation as a

21.5

281

clear-cut geographic entity in the same way as in the past. As they type and tap into a shared global environment they may in fact be travelling beyond their familiar nexus to ideas and life patterns never considered by their homes or home country. However, the ‘online culture’ clearly has its advantages and carries with it the promise of unlimited choices and opportunities, and yet the individual has to learn how to deal with the influx of visual information and images to negotiate a new cultural identity [57]. The cyber culture, on top of other forces of urbanization, global markets and dietary transitions is bound to produce a threat to national identity and create in individuals a sense of disconnection from their more familiar pasts. This is usually the time when the ‘body’ is called for to express the anguish of the soul and rearticulate through body language a new cultural identity. The reformulated ‘corporeal identity’ becomes therefore a kind of coping mechanism or a problem-solving tactic to handle the forces of cultural transition. In the case of eating disorder this is obviously done through manipulations of weight, diet and food. The ‘body’, in its attempt to be more in tune with the psychological needs of the individual, engages constantly with the ever-changing conditions of the ‘lived in’ society, merging the private and the public domains of human experiences and blurring the boundaries between what is normal and abnormal, social and medical [58] (see Table 21.1).

IMPLICATIONS FOR PREVENTION AND INTERVENTION

As one examines the movement of eating disorders from individual neurosis to cultural marker of distress, caused by transitional and conflicting cultural forces, it becomes increasingly important to identify ways of operationalizing treatment and prevention strategies. This could be done by organizing research and clinical questions around ways of assisting the

issue of self-determination, control and connection. Nasser and Katzman [23] suggested that prevention and intervention in eating problems could be enhanced by the provision of new social supports and new ways of belonging at the work and school, possibly taking advantage of existing information technology.

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Table 21.1 1. 2. 3. 4. 5. 6. 7.

The sociocultural model of eating disorders

Specific to the Western cultural value system cultivation of the thinness ideal Spectrum of severity symptoms merge with normal and culturally acceptable ‘dieting’ behaviour Steady increase over the past 50 years Subcultural/vocational risk more prevalent in groups where thinness is a licence to success Gender risk 10 times more common in women (gender role confusion and ambivalence) Intracultural, urban risk increased risk in urban areas changes in family structure and eating patterns Cross cultural risks

Risk in minority ethnic groups in the West . Confused/disturbed racial identity . A strong need to correct a negative and traditionally stereotyped racial image . High level of acculturation and assimilation of the dominant cultural aesthetic . Desire for acceptance/approval Non Western cultures and worldwide transitional forces Deregulation of media and economy . Global standardization of beauty and commodification of the human body . Gender ambivalence following revision of gender roles . Revision of the traditional family structures . Revision of traditional national boundaries through universal media and cyber culture .

Electronic connections may indeed provide new ways of achieving this ‘connectedness’. Linked by computer technology, individual sufferers may be able to overcome their social and political isolation and gain insights into new formulae for success and survival. Several techniques are currently being used in the management of eating disorders, focusing on psychoeducation and self-help cognitive strategies. These interactive web-based multimedia programmes are likely to make specialist therapies available to many more people who traditionally would have been unable to access such help [59]. The recognition of these new mechanisms is likely to stimulate research devoted to a transcultural and transnational perspective for the prevention and management of eating disorders. REFERENCES 1. Barths, R. (1975) Towards a psychosociology of con temporary food consumption, in European Diet from Pre industrial to Modern Times (eds E. Foster and R. Foster), Harper Row, New York. 2. Bourdieu, F. (1984) Distinction: A Social Critique of the Judgment of Taste, Routledge & Keegan Paul, London.

3. Caplan, P. (1997) Food, Health and Identity, Routle dge, London and New York. 4. Mintz, S. (1994) Eating and being: what food means, in Food: Multidisciplinary Perspectives (eds B. Harris and R. Hoffenberg), Blackwell, Oxford. 5. Cannon, G. (1992) Food and Health: The Experts Agree. An Analysis of One Hundred Authoritative Scientific Reports on Food, Nutrition and Public Health Published Throughout the World in Thirty Years, between 1961 and 1991, Consumers’ Association Ltd, London. 6. Rand, C. and Kuldau, J. M. (1991) Restrained eating (weight concerns) in the general population and among students. International Journal of Eating Disorders, 10, 699 708. 7. Garner, D. M. and Garfinkel, P. E. (1980) Sociocultural factors in the development of anorexia nervosa. Psy chological Medicine, 10, 483 491. 8. Gull, W. W. (1874) Anorexia nervosa. Clinical Soci ety’s Transactions, vii, 22. 9. Lasague, C. (1873) De 1’Anorexie Hystorique, Reprinted in Evolution of Psychosomatic Concepts: Anorexia Nervosa and Paradigm (eds R. M. Kaufman and M. Heinman), 1964, International University Press, New York. 10. Russell, G. (1979) Bulimia nervosa: an ominous variant of anorexia nervosa. Psychological Medicine, 9, 429 448.

EATING DISORDERS

11. Russell, G. (1970) Anorexia nervosa: its identity as an illness and its treatment, in Modern Psychological Medicine, vol. II (ed. J. Harding Price), Butterworth, London, pp. 1131 1164. 12. American Psychiatric Association (APA) (1993) Diag nostic and Statistical Manual of Eating Disorders, Revised, APA, Washington, DC. 13. World Health Organization (WHO) (1992) The ICD10, Classification of Mental and Behavioural Disorders: Clinical Description and Diagnostic Guidelines, WHO, Geneva. 14. Palmer, B. (2003) Concepts of eating disorders, in Handbook of Eating Disorders, 2nd edn (eds J. Treas ure, U. Schmidt and E. Van Furth), John Wiley & Sons, Ltd, Chichester, pp. 1 10. 15. Dancyger, I. and Garfinkel, P. (1995) The relationship of partial syndrome of eating disorders to anorexia nervosa and bulimia nervosa. Psychological Medicine, 25, 1018 1025. 16. Lucas, A., Beard, C., O’Fallon, W. and Kurland, L. (1991) 50 year trends in the incidence of anorexia nervosa in Rochester, Minnesota: a population based study. American Journal of Psychiatry, 148, 917 922. 17. King, M. and Mezey, G. (1987) Eating behaviours of male racing jockeys. Psychological Medicine, 17, 249 253. 18. Weight, L. and Noakes, T. (1987) Is running an analo gue of anorexia? A survey of the incidence of eating disorders in female distance runners. Medicine and Science in Sports and Exercise, 19 (3), 213 217. 19. Orbach, S. (1986) Hunger Strike: The Anorexic Strug gle as a Metaphor for Our Age, Norton, New York. 20. Williamson, I. (1999) Why are gay men a high risk group for eating disorders? European Eating Disorders Review, 7, 1 4. 21. Rathner, G. and Messner, K. (1993) Detection of eating disorders in a small rural town: an epidemiological study. Psychological Medicine, 23, 175 184. 22. Hoek, H., Aaad, I., Bartelds, M. et al. (1995) Impact of urbanisation on detection rates of eating disorders. American Journal of Psychoanalysis, 152 (9), 1272 1285. 23. Nasser, M. and Katzman, M. (1999) Eating disorders: transcultural perspectives inform prevention, in Pre venting Eating Disorders, A Handbook of Interven tions and Special Challenges (eds N. Piran, M. Levine and C. Steiner Adair), Brunner/Mazel, London and New York, pp. 26 44.

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24. Smith, J. and Krejci, J. (1991) Minorities join the majority: eating disturbance among Hispanics and Native American youth. International Journal of Eat ing Disorders, 10, 179 186. 25. Davis, C. and Katzman, M. A. (1998) Chinese men and women in USA and Hong Kong: body and self esteem ratings as a prelude to dieting and exercise. Interna tional Journal of Eating Disorders, 23, 99 102. 26. Nasser, M. (1997) Culture and Weight Consciousness, Routledge, London. 27. Nasser, M. (2000) Gender, culture and eating disorder, in Women’s Health, Cotemporary International Per spectives (ed. J. Ushher), The British Psychological Society, London, pp. 379 387. 28. King, M. and Bhugra, D. (1989) Eating disorders: lessons from a cross cultural study. Psychological Med icine, 19, 955 958. 29. Nasser, M. (1995) The EAT speaks many languages. Review of the use of the EAT in eating disorders research. Eating and Weight Disorders, 2 (4), 174 181. 30. Nasser, M. (1994) The psychometric properties of the eating attitudes test in a non Western population. Social Psychiatry and Psychiatric Epidemiology, 29, 88 94. 31. Szabo, C. P., Berk, M. and Tlou, E. et al. (1995) Eating disorders in black South African females. A series of cases. South African Medical Journal, 85, 588 590. 32. Le Grange, D., Telch, C. F. and Tibbs, J. (1998) Eating attitudes and behaviors in 1,435 South African Cauca sian and non Caucasian college students. American Journal of Psychiatry, 155, 250 254. 33. Abu Saleh, M., Younis, Y. and Karim, L. (1998) Anor exia nervosa in an Arab culture. International Journal of Eating Disorders, 23, 207 212. 34. Nabakht, M. and Dezkhan, M. (2000) An epidemiolo gical study of eating disorders in Iran. International Journal of Eating Disorders, 28 (3), 265 271. 35. Nasser, M. (1986) Comparative study of the prevalence of abnormal eating attitudes among Arab female stu dents at both London and Cairo Universities. Psycho logical Medicine, 16, 621 625. 36. Nasser, M. (1994) Screening for abnormal eating atti tudes in a population of Egyptian secondary school girls. Social Psychiatry and Psychiatric Epidemiology, 29, 88 94. 37. Ford, K., Dolan, B. and Evans, C. (1990) Cultural factors in the aetiology of eating disorders: evidence from body shape preference of Arab students. Journal of Psychosomatic Research, 34 (5), 501 507.

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38. Fichter, M., Elton, M., Sourdi, S. et al. (1988) Anorexia nervosa in Greek and Turkish adolescents. European Archives of Psychiatry and Neurological Sciences, 237, 200 208. 39. Apter, A., Shah, M., Ianco, I. et al. (1994) Cultural effects on eating attitudes in Israeli subpopulations and hospitalised anorectics. Genetic Social and General Psychology Monographs, 120 (1), 83 99. 40. Mumford, D. B. and Whitehouse, A. M. (1988) Increased prevalence of bulimia nervosa among Asian school girls. British Medical Journal, 297, 718. 41. Lee, S. (2001) Fat phobia in anorexia nervosa: Whose obsession is it?, in Eating Disorders and Cultures in Transition (eds M. Nasser, M. Katzman and R. Gor don), Brunner Routledge (Taylor & Francis Group), London and New York, pp. 40 66. 42. Suematsu, H., Ishikawa, H., Kuboki, T. and Ito, T. (1985) Statistical studies of anorexia nervosa in Japan, detailed clinical data on 1,011 patients. Psychotherapy and Psychosomatics, 43, 96 103. 43. Mukai, T., Crago, M. and Shisslack, C. (1994) Eating attitudes and weight preoccupation among female high school students in Japan. Journal of Child Psychology and Psychiatry, 33, 677 688. 44. Ohezeki, T., Haanaki, K. and Motozumi, H. et al. (1990) Prevalence of obesity, leanness and anorexia nervosa in Japanese boys and girls aged 12 14 years. Annales of Nutrition and Metabolism, 34, 208 212. 45. Pumarino, H. and Vivanco, N. (1982) Anorexia ner vosa: medical and psychiatric characteristics of 3 patients. Revista Medica de Chile, 110, 1081 1092. 46. Nunes, M., Bagatini, L. and Salvador, C.( (1991) April) What to think of anorexia nervosa in Brazil, a country of hunger and undernourishment? Poster presentation at the International Symposium on Eating Disorders, Paris. 47. Meehan, O. and Katzman, M. (2001) in Argentina: The Social Body at Risk in Eating Disorders and Cultures in Transition (eds M. Nasser, M. Katzman and R. Gor don), Brunner Routledge (Taylor & Francis Group), London and New York, pp. 146 171. 48. Szabo, P. and Tury, F. (1991) The prevalence of bulimia nervosa in a Hungarian college and secondary school population. Psychotherapy and Psychosomatics, 56, 43 47. 49. Warczyk Bisaga, K. and Dolan, B. (1996) A two stage epidemiological study of abnormal eating attitudes and prospective risk factors in Polish school girls. Psycho logical Medicine, 26, 1021 1032.

50. Krch, F. (1994) Needs and possibilities of prevention of eating disorders in the Czech Republic. Presented at IV International Conference onEating Disorders,New York. 51. Rathner, G.,Tury, F.,Szabo, M. et al.(1995)Prevalenceof eating disorders and minor psychiatric morbidity in Cen tral Europe before the political changes in 1989: a cross cultural study. Psychological Medicine, 25, 1027 1035. 52. Catina, A. and Joja, O. (2001) in Emerging markets: submerging women, in Eating Disorders and Cultures in Transition (eds M. Nasser, M. Katzman and R. Gordon), Routledge (Taylor & Francis Group), London and New York, pp. 111 127. 53. Gordon, R. (2001) Eating disorders East and West: a culture bound syndrome unbound, in Eating Disorders and Cultures in Transition (eds M. Nasser, M. Katzman and R. Gordon), Bruner Routledge (Taylor & Francis Group), London and New York. 54. Nasser, M. and DiNicola, V. (2001) Changing bodies, changing cultures: an intercultural dialogue on the body as the frontal frontier, in Eating Disorders and Cultures in Transition (eds M. Nasser, M. Katzman and R. Gordon), Brunner Routledge (Taylor & Francis Group), London and New York, pp. 171 194. 55. Lee, S. and Lee, A. (1996) Disordered eating and its psychosocial correlates among Chinese adolescent females in Hong Kong. International Journal of Eating Disorders, 20, 177 183. 56. Rathner, G. (2001) Post communism and the marketing of the thin ideal, in Eating Disorders and Cultures in Transition (eds M. Nasser, M. Katzman and R. Gor don), Brunner Routledge (Taylor & Francis Group), London and New York, pp. 93 111. 57. Nasser, M. and Katzman, M. (2003) Sociocultural theories of eating disorders: an evolution in thought, in Handbook of Eating Disorders, 2nd edn (eds J. Treasure, U. Schmidt and E. Van Furth), John Wiley & Sons, Ltd, Chichester, pp. 139 151. 58. Skarderud, F. and Nasser, M. (2007) (Re)figuring iden tities: my body is what I am, in The Female Body in Mind. The Interface between the Female Body and Mental Health (eds M. Nasser, K. Baistow and J. Treasure.), Routledge (Taylor & Francis Group), London and New York. 59. Shapiro, J. R., Bulik, C. M., Reba, L. and Dymek Valentine, M. (2005) CD ROM and web based CBT treatment for BED and obesity. Paper presented at the Academy of Eating Disorders International Conference on Eating Disorders, Montreal Canada, April 27th to 30th, 2005.

22 Social factors that influence child mental health Nisha Dogra Greenwood Institute of Child Health, University of Leicester, Leicester, UK

As with adult mental health problems, the mental health problems of childhood and adolescence usually have a multifactorial aetiology. Problems tend to develop from a combination of biological (e.g. genetic), psychological (e.g. individual factors such personality type, temperament) and social factors (e.g. familial and school). Here, the focus will be on social factors, particularly the family and school, that influence the development of mental health problems in children and young people. Families and schools are fairly universal factors that young people are exposed to and are important features in their lives. However, there is a need to remember that this is always just part of the whole picture. Broader political and cultural influences (e.g. homelessness, poverty and the wider social environment) will be dealt with more briefly, as

22.1

these are covered elsewhere in this book. The general impact of such variables in adulthood can be assumed to extend to childhood. In this chapter the term ‘young people’ is used to refer to children and adolescents up to 18 years of age. The term ‘child’ is used to refer specifically to young people under 12 years of age and ‘adolescent’ is used to refer to those between 12 and 18 years of age. Having defined these terms, it is important to acknowledge at the outset that ‘childhood’ and ‘adolescence’ are social constructs; in different contexts and for each gender they may be given very different meanings [1]. In turn, the meaning of childhood and adolescence may influence parenting styles, as parents raise and respond to their children in culturally and socially prescribed ways.

SOCIAL CONTEXTS AND EXPERIENCES

Social factors are, to varying degrees, of undoubted importance in the prevention, development and maintenance of mental health problems. As Jenkins [2] highlights, disentangling genetic from environmental

influences is not easy. Despite the investment in genetic research, we have learnt relatively little, especially in how the new information can be used to offer more effective treatment strategies. This may be

Principles of Social Psychiatry, second edition Edited by Craig Morgan and Dinesh Bhugra Ó 2010 John Wiley & Sons, Ltd.

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unsurprising given that most mental health disorders are multifactorial. It is unlikely that genetics will ever explain the whole picture. Bronfenbrenner’s [3] model of layered contexts is a fairly widely used model. The layers are the microsystem, mesosystem, exosystem and macrosystem. The first layer (microsystem) is at the level of the relationships in which the child is actively involved, e.g. with parents, siblings and peers. These interactions inevitably depend on context and the child’s characteristics (or personality). The mesosystem describes how the different components of the microsystem come together. The exosystem is the

22.2

FAMILY ENVIRONMENTS

There are many social factors that play an important part in children’s lives but the most important is almost certainly the role of the family. While the precise make-up of families may be culturally variable, the concept of the family is universal. In this section I will address the aspects of family that may have a significant impact on young people’s mental health.

22.2.1

wider local community such as the neighbourhood. The macrosystem is usually more remote, but may still be a major social influence, e.g. through socioeconomic policy on child rearing, education and health policies, and wider social and cultural contexts. It is worth noting that different factors may be important at various stages of the child’s life. Some adverse family factors may be mitigated by external factors that come into play as children get older (e.g. peer support). As noted, broad social and cultural contexts are not covered in detail in this chapter, but readers interested in pursuing this may find the following references useful [4 6].

Parenting

The role of parenting is to nurture the child adequately and prepare them for adulthood (whether that is independent living or living in an adult role within an extended family). Parenting styles are of course strongly influenced by broader cultural and political factors. There are widely accepted to be four different types of parenting styles, which bring with them different advantages and disadvantages. Baumrind [7] identified authoritative, authoritarian and permissive parenting styles. Macoby and Martin [8] divided permissive parenting into two subtypes neglectful and indulgent. Using this typology to identify the most common parenting styles across cultures inevitably involves generalizations and no doubt obscures important variations within cultural groups. This caveat aside, some useful insights can be gained. In ‘Eastern’ cultures authoritarian parenting may more often be considered

the norm, as it fits with notions of the primacy of the collective (versus the individual), which emphasizes responsibility to others, obedience and dutifulness. In contrast, ‘Western’ cultures are perceived to be more individualistic, encouraging children to be more selfreliant, assertive and independent. However, as noted, the likelihood is that within these broad categories, different styles of parenting can be identified. McLoyd et al. [9] argue that apparent differences in child-rearing practices among different ethnic groups may reflect the lack of rigorous research rather than real differences; there may be much more diversity within than between ethnic groups. The child’s perception of discipline and the parent may also be relevant in the way these styles play out. Further facets of parenting styles can be delineated that may impact on mental health and development. Figure 22.1 summarizes the level of control and emotional warmth that are assumed to feature in each of the parenting styles noted above. Each of these styles in considered in more detail below.

22.2.2

Authoritative parenting

Stereotypically, authoritative parents make demands that fit with their children’s ability to take responsibility for their own behaviour. Children, it is suggested, subsequently learn that they are competent individuals who can do things successfully for them-

SOCIAL FACTORS THAT INFLUENCE CHILD MENTAL HEALTH High control

287

High control High warmth

Authoritarian

Authoritative

Permissive neglectful

Permissive indulgent

Low control Low warmth

High warmth

Figure 22.1

selves, which then fosters high self-esteem, cognitive development, and emotional maturity. Characteristics of authoritative parenting include: emotional support, clear bidirectional communication; firm limit setting, reasoning and responsiveness [7]. Warm supportive parenting aids child development and helps children to regulate their own emotions and behaviours. It may also be protective in adverse circumstances. Because parents are responsive to their children and there is bidirectional communication, children are more likely, according to this framework, to learn to express their perspective in a constructive socially accepted way. This type of parenting requires a secure attachment with the primary caregiver, a positive relationship between the parent/child and age-appropriate and consistent disciplinary practices; for example, reasoning with a younger child may be inappropriate in the context of the child’s development. Bradley and Corwyn [10] conclude that parental stimulation and responsiveness are consistently associated with child adaptation and well-being irrespective of the culture. However, relationships are dynamic and parenting styles may change over time and be different for different children. Authoritative parenting is associated with positive psychological adjustment but the fact that this comes from a particular cultural perspective cannot be ignored. Authoritative parenting is not associated with good academic performance for African- and Asian-American children; however,

Parenting styles

that does not mean that young people are less stressed [11].

22.2.3

Authoritarian parenting

In contrast, authoritarian parenting is described as punitive and directive. Again stereotypically, parents who use this style are unlikely to discuss rules and will emphasize discipline and obedience [7]. The views of young people are deemed to be of little importance irrespective of age. It is implied that this style is not responsive to young people’s emotional needs; however, in practice this may not be the case. Punishment is associated with improved compliance in young people but, as its impact may be dependent on many variables, it is a less reliable factor [10]. For example, physical discipline predicts higher levels of aggressive behaviour in children of white European-American parents than in children of African-American parents [11]. This suggests that physical discipline may be more detrimental if it is not the norm within the wider culture. Nonetheless, there is evidence that young people who experience this type of parenting are more likely to be anxious. Woodward et al. [12] found that disciplinary aggression was a strong predictor of hyperactivity in school-aged boys, indicating that parenting styles can influence how neurodevelopmental disorders manifest themselves.

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22.2.4

Permissive parenting

Both permissive styles of parenting neglectful and indulgent make few demands on children, with limited boundaries. In the case of neglectful parenting there is reduced care or supervision [13] and, in extreme form, there is a lack of responsiveness to the needs of children, emotional or otherwise. Indulgent styles may also be problematic as again there are limited boundaries the child is just given everything [7]. There is evidence that ‘overindulged’ children show poor emotion regulation (underregulated) and rebel when they cannot have their own way. ‘Overindulgent’ parenting may be used to avoid having to deal with the conflicts that may arise or to manage parental separation and hostility. In general, research has tended to compare authoritative and authoritarian parenting styles and this may reflect the generalization that these styles are the norm in Western and non-Western cultures respectively. The effects of neglectful parenting that does not culminate in abuse appear to be less clear, but it is likely that young people do not develop trust, manage their emotions effectively or achieve their potential. There is, moreover, evidence that ‘overindulged’ children are more likely to engage in risk-taking behaviour (such as substance misuse), as they further challenge and push limits [7].

22.2.5

Cross-sample variations

Querido et al. [14] found that in African-American families with preschool children authoritative parenting styles were most predictive of fewer child behaviour problems. The authors argue that this adds to the literature that authoritative parenting is ‘good’. Heider et al. [15] found that across six European countries adverse parenting (lack of care, overprotective) was a risk factor for anxiety disorder, as well as psychiatric disorder in general. Dwairy [16] found that in a Palestinian sample permissive parenting was associated, in boys, with negative attitudes towards parents, lower self-esteem and increased identity and anxiety, phobia, depressive and conduct disorders. However, there was no clear relationship between authoritarian styles and

the mental health of Arab adolescents. The gendered nature of the relationship between permissive parenting styles and psychiatric disorder in boys, moreover, may be a function of the complex relationship between family, gender and wider culture. A study with an Egyptian sample, for example, found that in rural communities parents were more likely to use authoritarian styles with boys and authoritative styles with girls, whereas in urban areas the authoritarian style was more commonly used for girls [17]. Female adolescents had more psychological disorders in rural and urban communities with urban females showing more conduct disorder than their rural female counterparts. It is difficult to be clear if the parenting style causes or is a response to conduct disorder. Parents may feel that the urban environment presents more risk to females, so parenting styles may change to mange the perceived risk. This study demonstrates that gender and cultural contexts are highly influential. The study further found that authoritative parenting did not lead to individuation, as in Western samples, and again it highlights the likely complex interactions that lead to specific outcomes for young people.

22.2.6

Parental illness (mental and physical)

A recent detailed review in the UK found that, during early and middle childhood, parenting styles (assessed using a parenting score derived from various measures) did not vary systematically according to the age, educational level or ethnic group of mothers or fathers [18]. In this review, it was further found that deteriorations in financial circumstances were associated with reductions in parenting scores but, at the same time, increased finances did not necessarily lead to improved scores. Deteriorations in maternal physical or mental health were associated with a reduction in parenting scores. In contrast to all other variables reviewed, improvements in maternal health predicted increases in parenting scores. If both parents have poor mental health, the outcomes are worse for young people, especially boys. It may also be that the affect in boys is more easily measured and the impact on girls may be longer term. Poor maternal mental health

SOCIAL FACTORS THAT INFLUENCE CHILD MENTAL HEALTH

appears to be associated with an increased risk of developmental delay and both externalizing and internalizing disorders, with boys again being more vulnerable. Poor paternal mental health was also associated with poor cognitive development and perhaps an increased risk of behavioural problems. This reinforces a widely established risk factor, and Foreman [19] summarizes that maternal illness can act as an aetiological factor in child mental health problems. Equally there may be factors related to the child that influence maternal mental health. Parental mental illness, especially maternal mental illness, can impact significantly on young people. Postnatal maternal illness may affect child mother attachment and, if unaddressed, lead to later problems. The impact may be mitigated by factors that offset these disadvantages, e.g. an effective alternate caregiver stepping in. Maternal mental illness may also impact on the child directly because of how it impacts on maternal behaviour and the maternal ability to parent. The World Health Organization [20] argues that prolonged and/or severe parental mental illness can, for example, lead to less sociable behaviour and responsivity to others in children aged under five years. Development in all areas may be delayed, especially speech in boys. In older children, there may also be delayed development and higher rates of school and behavioural problems. Adewuya et al. [21] found that infants of depressed Nigerian mothers were more likely to have had breastfeeding stopped earlier and to have more infectious illnesses, over a nine-month follow-up period. It seems highly plausible that any maternal illness is likely to have an impact on their children. The difference in different cultures may be whether the negative impact is mitigated by protective factors. An additional stress may be that the young person takes on the role of carer for their ill parent. Mental illness among young people may also impact on the parent child relationship. Dietz et al. [22], for example, found that mother child interactions in depressed youths were marked by maternal disengagement and less positive interactions, which may not improve even when the child recovers. However, they could not disentangle whether the relationship problems preceded the onset of depression or were in fact a consequence of depression in the young person.

22.2.7

289

Family function and parental discord

Parental discord and disharmony impacts on children’s mental health in many ways. Jenkins and Smith [23] found that children being raised in homes with high conflict showed more disruptive behaviour than those being raised in homes with low conflict. The effects of conflict could be mitigated by having a close sibling or a relationship with grandparents. It is usually through parental conflict and parental unavailability that separation and divorce most impacts on young people’s mental health.

22.2.8

Abuse

Abuse within the family context can lead to a number of problems. In younger children it may lead to behavioural problems. Early experiences of physical, sexual abuse and/or parental neglect are risk factors for suicidal behaviour in adolescents as well as depression [24]. Abuse (physical and sexual) has also been linked to a host of adverse adult outcomes (see Chapter 13).

22.2.9

Sibling illness and/or disability

While it is generally accepted that children with a disability (physical or learning) or chronic illness are at increased risk of mental health problems (e.g. see Reference [25]), it is now increasingly clear that siblings of those with a disability/illness are also at significant risk of experiencing mental health problems. Mulroy et al. [26], for example, described a study on the impact of having a sibling with Down’s or Rett’s syndrome using a questionnaire completed by parents. Parents identified major disadvantages to siblings around parental and personal time constraints, relationships and parental emotions and burden of helping. Major reported benefits were related to personality characteristics. The authors argue for these findings to be incorporated into any discussion on the impact of illness on the family. However, a major limitation is that parental perspectives may

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differ quite markedly from those of the young people themselves. For reasons of their own, parents may need to identify benefits that are not a reality for the sibling(s). There may also be a need for siblings to repress their own responses to live up to the expectations of the adults around them. Sibling organizations (e.g. see Reference [27]) argue that support for siblings is crucial to minimize negative impacts by, for example: .

acknowledging siblings, concerns and enabling siblings to have typical feelings (e.g. not to minimize anger or frustration against the index sibling);

.

setting some expectations for the child with special needs as this may help reduce resentment or a sense of unfairness;

.

entitlement to a safe environment.

22.3

There is thus strong evidence that disability or illness in a sibling can have an adverse impact on other children within the family.

22.2.10

Religion

There is some evidence that attendance at religious/ spiritual programmes is associated with several aspects of child well-being, above and beyond parenting styles. One study, for example, found that family attendance was associated with greater child wellbeing, including fewer internalizing behaviours [28]. However, where parental belief drives certain types of parenting it may actually have a negative impact with more externalizing behaviours and hyperactivity. It may also be that this becomes an area for potential conflict during adolescence when young people start developing their own ideas.

SCHOOL ENVIRONMENTS

After home, school is where young people spend most of their time, so it is unsurprising that school environments and experiences are an important factor when considering the mental health of young people. Schools can have a very positive impact on children and mitigate some of the negative impacts of other social factors, including aversive home environments [29]. However, for some young people they can be a considerable source of stress, worry and unhappiness, particularly if bullying is experienced. In this section we consider what can help create an environment that promotes good mental health. Elias [30] has argued that schools are most successful in their educational mission when they promote academic, social and emotional learning. What this clearly recognizes is that emotions can facilitate or hamper young people’s learning. It has been long established that there are certain types of schools that are associated with fewer mental health problems [29]. Some schools have perhaps always considered more than just academic learning. However, over the last decade in the UK, there has been an increasing political emphasis on giving schools responsibility for mental health

promotion [31]. As yet there is limited evidence to demonstrate what difference this has made. As Zins et al. [32] state, intrinsically schools are social places and learning is a social process, so it comes as no surprise that schools can help young people develop self-esteem and learn the language to acknowledge and address emotions (both positive and negative) [32,33]. Young people do not on the whole learn alone. In the best case scenario they do so in collaboration with their teachers, in the company of their peers and friends, and with the support of their families and the wider cultural and political system. There has also been some pressure in the UK for schools to be more socially inclusive ([33], p. 45). However, while the intent may be laudable, the reality for young people may be that mainstream education fails to meet their educational needs and can lead to considerable disaffection with the educational system. The lack of academic success can lead to poor selfesteem, behavioural problems and marginalization. As Mortimore [29] identified, where young people are ‘committed’ to the school through their peers and staff, they do better academically. Where schools are unsupportive with poor relationships, there are

SOCIAL FACTORS THAT INFLUENCE CHILD MENTAL HEALTH

problems with absenteeism and depression for staff and students. Weare [33] argues that there are many reasons that mental health issues have become even more important for schools, citing the breakdown of social structures and increased pressure on the young. However, perhaps the most important reason is that schools are where young people are legally required to spend so much of their time. There has been an increasing amount of evidence to indicate that schools do better when they create a particular kind of environment than when they focus on teaching about mental health in isolated parts of the curriculum [34,35]. Weare [33] summarizes the four key elements that have been shown to be crucial for schools to deliver academic effectiveness and for them to ensure that their pupils are emotionally healthy and socially appropriate. The four elements are supportive relationships, a high degree of participation by staff and pupils, the encouragement of autonomy in staff and pupils, and finally clarity about rules, boundaries and expectations. It is worth noting how this compares with ‘authoritative’ parenting. It is hardly surprising that warm and supportive relationships help young people learn better and perhaps also create a more productive working environment for teachers. Johnson and Johnson [36] present a framework and demonstrate how schools can promote social and emotional learning through creating a cooperative community, constructive conflict resolution and civic values. A cooperative community is effectively created where there is a strong sense of positive interdependence (i.e. a sense of believing each other’s

22.4

success is interdependent), individual accountability for their role, promotion of each other’s success and development of interpersonal and small group skills. However, society as a whole may challenge these aspirations. It is not communities but individuals who are judged for jobs and rewards. Successful schools do not only have an internal sense of community, they also develop partnerships with the families of young people and the wider community [36]. While teachers may state that they frequently recognize mental health needs among children and young people, and would welcome training to develop their capacity to make a difference, in practice this is not usually borne out [37]. Weare [33] and Zins et al. [32] highlight key issues that schools may need to address in order to tackle this issue. Much has been talked about the impact of bullying, and the media has speculated that it leads to suicide. While this is often exaggerated, there is no doubt that bullying can have a significant impact on the mental health of young people. Bond et al. [38] found that bullying was associated with later anxiety and depression, especially for girls. It can also lead to school avoidance. For young people the way schools tackle the problem can be an important factor. It will become obvious that schools that meet the criteria for generating positive academic environments are more likely to successfully deal with such issues. It is worth finishing with a comment from young people themselves. When asked what made them feel good, a common response was ‘doing well at school’ [37].

SOCIOECONOMIC CONTEXTS

More briefly, I now turn to broader factors (covered in detail in other chapters, e.g. Chapters 6, 14 and 27). Here, some illustrative research specific to young people’s mental health is outlined.

22.4.1

291

Poverty

In a community sample of Brazilian children and adolescents aged 7 14 years, higher rates of probable

psychiatric disorder were strongly associated with poverty, maternal psychiatric illness and family violence [39]. The authors cautioned against concluding that social adversity always leads to children’s behavioural problems. They suggest that the children’s problems may evoke maternal depression or harsh discipline. They do, however, state that tackling poverty as well as other factors is likely to help improve child mental health. This example is illustrative, and the principle extends to all contexts.

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22.4.2

Neighbourhoods

There is good evidence that between 5 and 10% of the variance in emotional and conduct problems can be attributed to deprived neighbourhoods [40,41]. Again, however, it is rarely a single causal factor. Socioeconomic disadvantage is in itself a risk factor for both parental depression and childhood mental health problems.

22.4.3

Homelessness

may have been biased by the inclusion of large numbers of mothers with a mental disorder. The authors concluded that a longitudinal study is needed to understand better the impact of residential instability on children’s mental health. However, those with residential instability almost invariably also experience poverty, which emphasizes the interconnectedness of these factors.

22.4.4

In one study, while maternal homelessness in itself did not have a significant association with emotional problems, it did not impact on school enrolment and attendance [42]. However, effects may be indirect, in that the consequent lack of attendance may impact on the child’s ability to develop socially. Children’s emotional health, in this study, was however affected if homelessness was compounded by poor maternal health and exposure to trauma. There is a need for caution in interpreting these findings, as the sample

22.5

Life events

Further, life events such as bereavement, parental separation, accidents and the like impact on some children more than others. Emotional disorders such as anxiety and depression are more likely in this context, although these may be expressed through behavioural problems at home and school [43]. However, it can be difficult to know which children are at greater risk as it is usually a culmination of factors. There is some evidence that openness with children may help them cope with the changes they face.

SUMMARY

In this chapter we have looked at social factors and their relationship with child mental health problems. However, it is important to remember that rarely is there a direct cause and effect relationship; invariably it is the interplay of social factors with biological and psychological factors that determine whether a child goes on to develop mental health problems or not. That said, children and young people are perhaps at the greater mercy of social factors and have less power to influence their social world. Consequently, understanding how social environments affect mental well-being and, more importantly, how we can intervene to lessen these effects is imperative and gives urgency to ongoing research and intervention efforts. REFERENCES 1. Walker, S. (2005) Culturally Competent Therapy: Working with Children and Young People, Palgrave Macmillan, Basingstoke.

2. Jenkins, J. (2008) Psychosocial adversity and resili ence, in Rutter’s Child and Adolescent Psychiatry, 5th edn (eds M. Rutter, D. Bishop, D. Pine, S. Scott, J. Stevenson, E. Taylor and A. Thapar), Blackwell Pub lishing, Oxford, pp. 377 391. 3. Bronfenbrenner, U. (1979) Contexts of child rearing: problems and prospects. American Psychologist, 34, 644 850. 4. Dogra, N., Vostanis, P. and Karnik, N. (2007) Child and adolescent psychiatric disorders, in Textbook of Cultural Psychiatry (eds D. Bhugra and K. Bhui), Cambridge University Press, Cambridge, pp. 301 313. 5. Karnik, N., Dogra, N. and Vostanis, P. (2007) The management of child and adolescent psychiatric dis orders, in Textbook of Cultural Psychiatry (eds D. Bhugra and K. Bhui), Cambridge University Press, Cambridge, pp. 471 483. 6. Vostanis, P. (ed.) (2007) Mental Health Interventions and Services for Vulnerable Children and Young People, Jessica Kingsley Publishers, London.

SOCIAL FACTORS THAT INFLUENCE CHILD MENTAL HEALTH

7. Baumrind, D. (1966) Effects of authoritative parental control on child behavior. Child Development, 37 (4), 887 907. 8. Macoby, E. E. and Martin, J. A. (1983) Socialisation in the context of the family: parent child interaction, in Handbook of Child Psychology, vol. 4, Socialisation, Personality and Social Development (eds P. H. Mussen and E. M. Hetherington), 4th edn, John Wiley & Sons, Inc., New York, pp. 1 101. 9. McLoyd, V., Cauce, A. M., Takeuchi, D. and Wilson, L. (2000) Marital processes and parental socialisation in families of colour: a decade review of research. Journal of Marriage and the Family, 63 (4), 1070 1093. 10. Bradley, R. and Corwyn, R. F. (2005) Caring for children around the world: a view from home. Inter national Journal of Behavioural Devolvement, 29, 468. 11. Phoenix, A. and Husain, A. F. (2007) Parenting: ethni city: a review. Joseph Rowntree Foundation accessed at www.jrf.org.uk on 12/10/08. 12. Woodward, L., Taylor, E. and Dowdney, L. (1998) The parenting and family functioning of children with hyperactivity. Journal of Child Psychology and Psy chiatry and Allied Disciplines, 39, 161 169. 13. Macoby, E. E. and Martin, J. A. (1983) Socialisation in the context of the family: parent child interaction, in Handbook of Child Psychology, Socialisation, Person ality and Social Development, vol. 4, 4th edn (eds P. H. Mussen and E. M. Hetherington), John Wiley & Sons, Inc., New York, pp. 1 101. 14. Querido, J. G., Warner, T. D. and Eyberg, S. M. (2002) Parenting styles and child behaviour in African Amer ican families of preschool children. Journal of Clinical Child Psychology, 31 (2), 272 277. 15. Heider, D., Matschinger, H., Bernert, S. et al. (2008) Adverse parenting as a risk factor in the occurrence of anxiety disorders: a study in six European countries. Social Psychiatry and Psychiatric Epidemiology, 43 (4), 266 272. 16. Dwairy, M. (2004) Parenting styles and mental health of Palestinian Arab adolescents in Israel. Transcultural Psychiatry, 41 (2), 233 252. 17. Dwairy, M. and Menshar, K. E. (2006) Parenting style, individuation and mental health of Egyptian adoles cents. Journal of Adolescence, 29, 103 117. 18. Waylen, A. and Stewart Brown, S. (2008) Diversity, complexity and change in parenting. Joseph Rowntree Foundation accessed PDF at www.jrf.org.uk on 1/08/08.

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19. Foreman, D. M. (1998) Maternal mental illness and mother child relations. Advances in Psychiatric Treat ment, 4, 135 143. 20. World Health Organization (2008) Maternal mental health and child health and development accessed at http://www.who.int/mental health/prevention/suicide/ maternalmh/en/print.html on 1/9/08. 21. Adewuya, A. O., Ola, B. O., Aloba, O. O. et al. (2008) Impact of postnatal depression on infants’ growth in Nigeria. Journal of Affective Disorders, 108 (1 2), May, 191 193. Epub 2007 Nov 7. 22. Dietz, I. J., Birmaher, B., Williamson, D. E. et al. (2008) Mother child interactions in depressed children and children at high risk and low risk for future depresion. Journal of the American Academy of Child and Ado lescent Psychiatry, 47 (5), 574 582. 23. Jenkins, J. M. and Smith, M. A. (1990) Factors protect ing children living in disharmonious homes: maternal reports. Journal of the American Academy of Child and Adolescent Psychiatry, 29, 60 69. 24. Brodsky, B. S. and Stanley, B. (2008) Adverse child hood experiences and suicidal behaviour. Psychiatric Clinics of America, 31 (2), 223 235. 25. Cadman, D., Boyle, M., Szatmari, P. and Offord, D. R. (1987) Chronic illness, disability, mental and social well being: findings of the Ontario Child Health Study. Paediatrics, 79 (5), 805 813. 26. Mulroy, S., Robertson, L., Alberti, K. et al. (2008) The impact of having a sibling with an intellectual disabil ity: parental perspectives in two disorders. Journal of Intellectual Disability Research, 52 (3), 216 229. 27. Sibling Support (2008) What siblings would like par ents and service providers to know accessed at www. siblingsupport.org/publications/what siblings would like parents and service providers to know on 2/9/08. 28. Schottenbauer, M. A., Spernak, S. M. and Hellstrom, I. (2007) Relationship between family religious beha viours and child well being among third grade chil dren. Mental Health, Religion and Culture, 10 (2), 191 198. 29. Mortimore, P. (1995) The positive effects of schooling, in Psychosocial Disturbances in Young People: Chal lenges for Prevention (ed. M. Rutter), Cambridge University Press, Cambridge, pp. 333 365. 30. Elias, M. J., Zins, J. E., Weissberg, R. P. et al. (1997) Promoting Social and Emotional Learning: Guidelines for Educator, Association for Supervision and Curri culum, Development, Alexandria, Virginia.

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31. Every Child Matters (2003) Green Paper, The Station ery Office, Norwich. 32. Zins, J. E., Bloodworth, M. R., Weissberg, R. P. and Walberg, H. J. (2004) The scientific base linking social and emotional learning in school success, in Building Academic Success on Social and Emotional Learning: What Does the Research Say (eds J. E. Zins, R. P. Weissberg, M. C. Wang and H. J. Walberg Teachers College Press, Columbia University, New York, pp. 3 22. 33. Weare, K. (2000) Promoting Mental, Emotional and Social Health: A Whole School Approach, Routledge, London. 34. Durlak, J. A. (1995) School Based Prevention Pro grams for Children and Adolescents, Sage Publica tions, London. 35. Durlak, J. A. and Wells, A. M. (1997) Primary prevention mental health programs for children and adolescents: a meta analytic review. American Journal of Community Psychology, 25 (2), April, 115 152. 36. Johnson, D. W. and Johnson, R. T. (2004) The three Cs of promoting social and emotional learning, in Building Academic Success on Social and Emotional Learning: What Does the Research Say (eds J. E. Zins, R. P. Weissberg, M. C. Wang and H. J. Walberg), Teachers College Press, Columbia University, New York, pp. 40 58.

37. Gordon, J. and Grant, G. (1997) How We Feel: An Insight into the Emotional World of Teenagers, Jessica Kingsley, London. 38. Bond, L., Carlin, J. B., Thomas, L. et al. (2001) Does bullying cause emotional problems: a prospective study of young teenagers. British Medical Journal, 323 (7311), 480 484. 39. Fleitlich, B. and Goodman, R. (2001) Social factors associated with child mental health problems in Brazil: cross sectional survey. British Medical Journal, 323, 599 600. 40. Boyle, M. H. and Lipman, E.I. (2002) Do places matter? Socioeconomic disadvantages and behavioural pro blems of children in Canada. Journal of Consulting and Clinical Psychology, 70, 378 389. 41. Xue, Y., Leventhal, T., Brooke Gunn, J. and Earls, F. J. (2005) Neighbourhood residence and mental health problems of 5 11 year olds. Archives of General Psy chiatry, 62, 554 563. 42. Harpaz Rotem, I., Rosenheck, R. A. and Desai, R. (2006) The mental health of children exposed to mater nal mental illness and homelessness. Community Mental Health Journal, 42 (5), 437 448. 43. Merikangas, K. R. and Angst, J. (1995) The challenge of depressive disorders in adolescence, in Psychosocial Disturbances in Young People: Challenges for Preven tion (ed. M. Rutter), Cambridge University Press, Cambridge, pp. 131 165.

23 Social determinants of late life disorders Robert Stewart Section of Epidemiology, Institute of Psychiatry, King' s College London, London, UK

23.1

WHAT IS SO SPECIAL ABOUT `LATE LIFE'?

The practice of including a chapter on ‘late life’ in general textbooks incurs potential risks and it is worth taking some time to consider the need for such an account before embarking on it. Specialist consideration of ‘early life’ is much more easily justified because syndromes of mental distress occurring in childhood are self-evidently different in their aetiology and manifestations compared to those occurring in adulthood, although there are undoubtedly strong continuities between the two life stages. These differences are much less evident for late compared to earlier adult life older people develop depressive disorders, psychotic disorders, anxiety disorders and so on in much the same way as younger people do. Even dementia can occur at any age, although clearly is a more common consideration in later life. Although there are some differences in the ways in which mental disorders manifest and in the salience of particular risk factors, these are not substantial and differences between groups within the ‘late life’ range are probably more marked than those between late and earlier adult life. The principal danger arising from specialist consideration of ‘late life’ is that the remainder of a textbook is assumed to apply only to younger adults or is

allowed to focus exclusively on that age group. With people in post-retirement age ranges comprising ever higher proportions of most nations’ populations, this approach is conceptually flawed as well as being inequitable and unethical. On the other hand, in considering social causation of mental disorders, it may be entirely appropriate to treat ‘late life’ as a minority subject since the majority of late life disorders, even those arising de novo in late life, are likely to have determinants that stretch back across the life course. Important issues to emphasize at the outset are therefore that late life can in many ways be considered as a continuation of earlier life with the same risk factors and outcomes but that these interrelationships need to be conceptualized as occurring over a much longer period and therefore as incurring added complexities (which unfortunately have not been adequately captured by the relatively simple research designs to date). However, having emphasized (qualitative) similarities in the aetiology and manifestations of mental disorder from early to late adult life, there are important (predominantly quantitative) differences that probably form enough of an argument for specialist consideration:

Principles of Social Psychiatry, second edition Edited by Craig Morgan and Dinesh Bhugra Ó 2010 John Wiley & Sons, Ltd.

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1. Organic brain syndromes, principally disorders causing dementia, clearly become substantially more common with increasing age. These are relevant for this chapter not only because they represent mental disorders with substantial, though often underappreciated, social determinants but also because they have important social impacts, and therefore are themselves social determinants of other disorders both for the person affected and for those providing care. 2. Most chronic somatic disorders become substantially more common in later life and have an important influence on the social aetiology of mental disorder both through direct effects of disablement on the individual, which may modify the importance of the social environment, and through the effects of disablement on the social environment itself (e.g. through the need for care provision). 3. Related to somatic disorders, but with distinct features in its own right, ‘frailty’ becomes more salient in later life, particularly from the ninth decade onwards. This concept, while intuitive, remains poorly understood. Chronic somatic disorders, functional mental disorders and organic brain syndromes are important components of frailty, but there may also be more generic agerelated physiological changes (such as weight loss and loss of skeletal muscle) underlying its manifestations. The impact of frailty on the social determinants of mental disorder is similar to that of disability, described above. 4. Important changes occur in the social environment in later life. There are obviously pronounced structural changes in social networks, around mid-life for most people, with the loss of parents and the preceding generation. Later, there is a growing reliance on younger generations as mortality and disability reduce same-generation support networks in those who survive to more advanced old age, linked to a social expectation (which may represent a considerable hurdle) that the older person switches from a care-providing to a carereceiving role. Social networks derived from

the workplace also clearly undergo potentially dramatic changes following retirement, as the maintenance of networks beyond family ties becomes increasingly an individual’s personal responsibility, particularly in more isolating urban environments. 5. The concepts of social class and socioeconomic status also change. Income levels after retirement are obviously strongly influenced by prior occupational status, but may become subject to more diverse and less predictable influences from the performance of a savings scheme to costs incurred through ill-health, housing and caregiving duties. For better or worse, an individual’s available capital becomes increasingly predetermined with steadily more limited opportunities for wealth creation or borrowing. 6. The influence of the built environment may alter for those people who develop physical disabilities, with ease of access becoming a more salient issue and unwanted social isolation becoming a more serious risk. At later ages, or with more severe disability, there are important and very difficult choices to be made between maintaining independence at the risk of more social isolation and moving into an environment that is more supportive but that entails a reduction of personal autonomy. 7. A key difference between earlier and later adult life with respect to manifestation of mental disorder is in the influence of the years of life experienced up to that point. As described earlier, manifestation of a disorder later in life implies a potentially longer period over which risk factors may have been operating, and a potentially more complex causal model. However, it also has implications for the disorders or risk factors themselves. For example, although ‘personality’ continues to exert an influence in later life, people who have lived this long have had a longer opportunity to adapt (or adapt to) their social environment, and it is likely that those with more extreme traits will have found ways either of modifying the traits or of finding a social milieu or life-style that minimizes earlier adverse

SOCIAL DETERMINANTS OF LATE LIFE DISORDERS

influences of such traits. Personality disorder therefore becomes much less prevalent in later life but the extent to which this reflects a diminution in strength of personality traits or in their impact on social/occupational functioning is not clear (and the two are not necessarily distinguishable). 8. Survival is an important factor for all research in later life although its influence remains remarkably poorly understood. Most mental disorders become more common in more advanced old age and therefore the absolute risk of a late life

23.2

disorder is strongly influenced by the likelihood of surviving long enough to develop it. This is particularly true for dementia and it is still unclear the extent to which dementia, with sufficient longevity, is inevitable. Surprisingly, despite this potential bias, most risk factors for late life mental disorders (particularly dementia) are also risk factors for mortality. This complicates conclusions about preventing a given outcome through modifying the risk factor, if doing so also improves survival and, therefore, the chances of developing the outcome.

WHAT IS `LATE LIFE'?

As can be inferred from what has been considered so far, ‘late life’ is a broad term and difficult to define. Statutory retirement age is often used as a cut-off point to separate ‘mid-life’ from ‘late life’. This may suit clinical service models, where a strict criterion is helpful but has little intrinsic usefulness for research. ‘Retirement’ is a culture-bound entity, not being an option for the majority of the world’s population, and ages of retirement are likely to become substantially less statutory with political and economic responses to demographic ageing in high-income nations (and the most commonly used ‘65þ ’ cut-off has of course always been a male-oriented definition). ‘Post-retirement’ populations include a very wide spectrum of individual characteristics and social worlds from recent retirees, who can expect to be in good general health with no significant disabilities (and who may indeed still be caring for parents or other members of the preceding generation), through to survivors in their 90s or above with much higher levels of frailty, high (although by no means universal) prevalence of dementia and with social networks substantially restricted by bereavements and disability (and conse-

23.3

297

quently higher reliance on formal or informal caregivers). Probably the only justifiable reason to use a ‘65þ ’ cut-off for epidemiological research is simply because it has most often been used before that is, so that results can be most easily compared with those from other samples. It is rarely justified by specific hypotheses or research questions. Studies of dementia are much better focused on older age groups, since the majority of any ‘65þ ’ sample will be within the first decade of that range, where the prevalence of dementia is unlikely to be above 5%. Studies of mood disorders, on the other hand, are better focused either on samples aged 50 70 years, to reflect the period around retirement as an important life-transition, or else on samples aged 80 years and above, to reflect the period when physical ill-health and frailty become salient issues. The remainder of this chapter will focus particularly on the social aetiology of dementia, as a disorder of particular importance in late life, followed by a consideration of other disorders, particularly late life depression, where the differences with earlier adult life are more in extent rather than nature.

THE SOCIAL DETERMINANTS OF DEMENTIA

Because of the distinction made between ‘organic’ and ‘functional’ mental disorders, and because of the huge volume of neurobiological and genetic research into the causes of dementia, particularly Alzheimer’s

disease, social determinants have received substantially less attention. However, there is no good scientific justification for this perspective since it is well established that there are important environmental

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determinants of risk of dementia and the most salient of these education and vascular disease are known to have very strong social determinants. Before considering late life, it is worth pointing out that the most common cause of dementia in earlier adult life, HIV infection, can be said to be almost entirely socially determined.

23.3.1

Education and early life disadvantage

The protective effect of higher education on risk of dementia is widely recognized but the reasons for this are still not fully understood. Probably the most popular explanation is the ‘cognitive reserve hypothesis’. This proposes a mechanism whereby people with higher levels of education are able to sustain a higher level of neurodegeneration before they develop what would be called ‘clinical dementia’ i.e. before cognitive decline has reached a point where it is interfering with daily activities. In a sense, this is purely an artefact of the way in which dementia is defined (i.e. in common with other definitions of mental disorder, the requirement that the syndrome is not merely present but is severe enough to affect daily functioning). This hypothesis predicts that people with higher education, when they develop dementia, will have a more aggressive clinical course (because of more advanced brain pathology at the point of diagnosis). There is a reasonable amount of evidence to support this, with the combination of higher education and dementia being associated with more rapid cognitive decline [1,2], higher mortality [3] and more advanced disease suggested by neuroimaging findings [4]. Although the cognitive reserve hypothesis has face validity and empirical support, it may not be the only explanation for the association between higher education and lower dementia risk. One interesting possibility is that there may be aspects of brain structure that allow both higher educational attainment (or that possibly are even determined by this) and that also confer protection against neurodegenerative disorders much later in life (i.e. influencing the disorder rather than its manifestations). This mechanism is suggested by an influential finding from a study of elderly nuns in

the US where linguistic ability in early adult life (estimated from written material prepared at entry to the order) was associated with a lower risk of Alzheimer pathology in post mortem brain donations [5]. A variety of other mechanisms may also have a role. For example, people with higher levels of education are likely to lead healthier lives, in particular with respect to vascular risk factors (discussed further below), which may account for at least some of the protective effect on dementia risk. There is also some evidence that higher education may modify in a protective manner the impact of vascular risk factors on cognitive function [6,7]. Education, whether measured by duration of schooling or qualifications obtained, is strongly interrelated with socioeconomic status, both at the time of education and after schooling has been completed, and may be simply a marker of a complex entity that reflects both a social milieu and an individual’s response to it. At least part of the effect of education on late life dementia may be mediated through the social status achieved by the individual in the intervening period. Although social status tracks strongly across the life course, there is also the possibility that individuals may counter that trend. It is quite possible, for example, that protection against dementia may be conferred by educational interventions in mid- and even late life, regardless of earlier disadvantage. Whether this reflects the actual interventions or the personality of the individuals who are sufficiently self-motivated to seek them remains to be determined. Other aspects of early life social environments may be important beyond education but have received much less attention. Growth and brain maturation are examples. Several studies have found associations between smaller skull circumference and dementia [8] and have implied that smaller brain volumes may influence risk and expression of dementia through cognitive reserve effects. However, studies have found associations with other measures of skeletal growth (shorter leg length in particular) that are independent of both skull circumference and education [9 11]. These skeletal dimensions are, of course, determined in childhood and adolescence and then remain stable throughout the intervening period. Associations with dementia suggest potentially wider manifestations of

SOCIAL DETERMINANTS OF LATE LIFE DISORDERS

early life social disadvantage than educational attainment alone.

23.3.2

Cardiovascular factors

A significant advance in dementia research over the last decade has been the appreciation of the important role of vascular disease and vascular risk factors in the aetiology of dementia, both vascular dementia and Alzheimer’s disease [12]. A variety of mechanisms have been proposed for this that are not directly relevant to this chapter but which divide, like those for education, into direct influences on neuropathological processes (e.g. cerebrovascular damage to the blood brain barrier stimulating Alzheimer pathology) and effects on the clinical syndrome (e.g. the observation that people may exhibit a ‘clinical dementia’ syndrome at an earlier stage of Alzheimer pathology if cerebral infarction is also present [13]). Vascular risk factors can reasonably be considered as the most important environmental risk factors for dementia, both because of their high prevalence in many populations and the potential for preventative intervention through risk reduction. Vascular risk factors also have substantial social determinants. A detailed discussion of the complex pathways linking social disadvantage with vascular outcomes are beyond the scope of this chapter. However, these occur across the life course and include the ‘Barker hypothesis’ linking in utero exposures to much later outcomes, the observed ‘tracking’ of vascular risk status (e.g. blood pressure, lipid profile, adiposity) from childhood, the development of adverse risk behaviours (smoking and diet in particular), the role of the workplace (with both direct cardiovascular effects of stress and indirect effects through peergroup attitudes to risk behaviours) and later ability or willingness to adhere to preventative interventions (e.g. antihypertensive treatment, diabetes management) once risk factors have been identified. It is therefore quite logical to consider dementia aetiology within a broader context of social disadvantage however, this type of model has rarely been applied and epidemiological research in dementia is still predominantly focused on ‘downstream’ rather than ‘upstream’ risk factors.

23.3.3

299

Other social determinants of dementia

There has been a moderate amount of interest in associations between the social environment in late life and risk of dementia. Interpretation of research in this area can be problematic because most conditions causing dementia have a very long period of development (10 20 years) so that it is often difficult to determine whether a characteristic that is associated with an increased risk of dementia, even over a reasonable follow-up period, is causal or an effect of earlier neurodegeneration. Also, most findings have been derived from observational research and, by their nature, are difficult to evaluate further in clinical trials. In common with research into vascular risk factors, most of this research suggests that generally healthier and more active people are less likely to develop dementia. ‘Active’ in this case appears to include all aspects from physical activity [14] through social support [15] to specific cognitive activities [16]. The relationship between dementia and social activity is complex, however, and is rarely adequately disentangled in conventional research designs. Early neurodegeneration may of course lead to reduced social activity (e.g. as a person becomes aware of difficulties with memory they may begin to avoid social situations); alternatively, social support may mask the effects of neurodegeneration (as seen, for example, in the ‘sudden’ manifestation of dementia sometimes after bereavement). The wider social milieu may play an important role in determining the definition of dementia itself. For example, in cultures where less is expected of an older person, neurodegeneration may have reached a much more advanced stage before any cognitive deficit becomes noticeable or could be said to be causing functional difficulties. Social activity may have opposing influences on the presentation and course of dementia. Social activity that places higher expectations on the affected individual may heighten the effect of early cognitive impairment whereas activity that provides support may mask this. The perceived disability associated with cognitive impairment may also have positive and negative outcomes while one individual who perceives their difficulties early may seek help and receive a more prompt diagnosis, another may react

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less constructively with social withdrawal, depression or denial.

23.3.4

Social determinants of dementia course and prognosis

The interactions just described between the individual and their social milieu at an early stage of dementia are likely to be important for later outcomes. While dementia is caused by ‘organic’ disorders and the decline in brain function is likely to be driven predominantly by biological pathways, the overall course and prognosis are influenced by many other factors besides the neurodegenerative process, and the social milieu is very important in this respect. The social structures through which care for dementia is provided vary widely between nations and cultures and tend to exist on a spectrum between formal and informal care. At the one end of this spectrum are societies where there is little or no state provision of care and where all of this is provided by family members; frequently these systems are also combined with societal expectations of the caregiver and a stigma associated with relinquishing these responsibilities, even when an alternative means of care provision is available. At the other end are societies with higher levels of state provision; these invariably include institutional care but also, ideally, include support at home for those less severely affected. These systems generally are combined with more relaxed assumptions about the role of the family in care provision, although rarely to a degree where this can be relinquished without at least some guilt or perceived stigma by the caregiver. Although difficult to prove empirically, it is reasonable to assume that a satisfactory care arrangement for someone with dementia will lead to a better quality of life for that person, despite the fact that neurodegenerative changes continue to occur and present challenges for maintaining life quality. Survival becomes a

23.4

highly pertinent issue and the ‘ideal’ outcome will naturally vary according to the extent to which dementia has manifested before death. For example, one ‘ideal’ would be to die without having developed dementia at all, or at least only having developed it to a mild extent with minimal quality of life impairment. If dementia does develop and the person survives to later stages, the alternative ‘ideal’ becomes one more akin to that sought in palliative care i.e. a distress-free death at home supported by family members and good-quality nursing care. As described above, the social context is a strong determinant of the nature of care of dementia (and therefore of its course and outcome). However, there is of course no objective standpoint from which care arrangements can be compared between cultures and judged to be more or less satisfactory. As a guess, it seems likely that the best quality care arrangements are likely to lie somewhere between the two societal extremes described: where family structures are maintained and allowed to lead care provision but where there are also appropriate levels of formal (and wider informal) support for this process. The problem is that this assumes that a cohesive and supportive family structure is present in the first place. The quality of support that an individual with dementia is likely to receive from their family (and/or wider social network) will be determined by a life history of individual relationships in addition to overarching societal/cultural expectations. These in turn are likely to have an influence on formal service provision. On the one hand a higher level of state-funded support services may have arisen in a particular nation because of enlightened thinking by policy makers seeking to support informal care arrangements; on the other hand it may have arisen because of the collective refusal or inability of informal support systems to take on this role in turn, potentially a product of individualistic societies where family ties are subservient to economic and migratory necessities.

DEPRESSION AND OTHER MENTAL DISORDERS IN LATE LIFE

As stated earlier, dementia can be considered to be characteristically a late life mental disorder, although

of course not unique to late life and by no means particularly common in post-retirement age groups

SOCIAL DETERMINANTS OF LATE LIFE DISORDERS

until more advanced old age is reached. Other mental disorders occur across the full adult age range, both relapses in pre-existing conditions and onset of new ones, and differences in late life tend to be more subtle and quantitative in nature. These will be considered below in terms of the social exposures of most salience.

23.4.1

Income and social class

Not surprisingly, and in common with younger populations, many studies of late life depression have found higher prevalence/risk to be associated with relative impoverishment [17,18]. As described above, the concept of social class is more difficult to measure in post-retirement age ranges, apart from as a historical characterization of previous occupation. The effect of income on risk of mental disorder in late life may also reflect much longer lifelong interrelationships since those with lower income levels are more likely to have experienced higher levels of life stressors over a long period and, quite possibly, previous episodes of mental disorder occurring in response to these. Physical health is also strongly associated with income levels in late life both the risk of new illnesses occurring and the efficiency with which existing ones are managed which in turn may be an important factor in relationships with mental health [17].

23.4.2

Life stressors

As with income, stressful life events have continued importance in the aetiology of mental disorders in later life. Naturally the pattern of stressors changes, with age, bereavements and physical illness events becoming more common in older people. An analysis of British national data, which compared strengths of association between recent life events and mental disorder across age groups, found an increase in these from early to mid-adult life followed by a slight decline in older people, although the upper age of the sample was 74 years, which missed the period of life where frailty and bereavements become most salient [19].

23.4.3

301

Physical ill-health and disability

Although not strictly social determinants of mental disorders, chronic somatic disorders are very important risk factors for depression in particular and (as described for vascular disorders with respect to dementia) frequently have strong social determinants themselves and so can be seen as a mediating pathway between life course social disadvantage and late life mental health. Although some disorders such as stroke and Parkinson’s disease may have direct effects on depression, and chronic pain may be a factor for others, a large part of the effect of physical ill-health on depression risk appears to be mediated through disability with very little further impact of individual disorders [20]. There is therefore a rationale for considering physical ill-health as one of many life stressors, although as one that is likely to be a chronic issue for many disorders depending on the nature of disablement and the extent to which this can be modified. In those prospective studies that have sought to distinguish incidence and maintenance of depression in community samples, higher levels of disability appear to be more predictive of new onset of depression rather than on the chances of recovering once depression has developed (which appears to be more strongly influenced by social support, as discussed below [21]). Relationships between specific physical disorders and specific mental disorders can also be considered under this heading. These include the affective and psychotic symptoms that are features of Parkinson’s disease, the association between deafness and lateonset psychosis, the frequent coexistence of chronic respiratory disease and anxiety disorder, and the association between poor eyesight and Charles Bonnet syndrome.

23.4.4

The geographic environment

The built environment is likely to be an important factor in late life mental health, but has been the focus of very little research. One study found that the interior condition of older people’s habitations was more strongly predictive of depression than the appearance of the area in which they lived [22].

302

SOCIAL DETERMINANTS

However, clearly there are likely to be important interfaces between the nature of the area in which someone lives and their level of disability (influencing ease of access, services available, etc.), and in turn on the degree to which a given level of disability affects the level of social support. As well as this, the quality of the environment in which someone lives will have been determined at least to some extent by that person’s social status and mobility, and will determine the social milieu in which they find themselves. Particular to late life in developed nation settings are the specialist built environments for people with higher levels of care needs, such as the British systems of sheltered and special sheltered housing, residential homes and nursing homes. These both determine the social environment and, at least partly through this and the specific interactions an individual makes with it, the risk of mental disorder.

23.4.5

Social support

Along with physical ill-health and disability, social isolation ranks as the most important correlate of late life depression, widely found in most if not all community studies [21,23]. Studies that have considered physical ill-health and social isolation together have found interactions between the two with respect to predicting the onset of depression, with a buffering effect of higher social support on risks associated with disability (i.e. the influence of disability on risk is less marked where social support is higher [23]). On the other hand, considering the likelihood of recovery (in naturalistic follow-up studies of community samples), disability appears to play little or no role (as described earlier), with social support the principal predictor [21]. ‘Social support’ in studies of this kind appears at the outset to be a relatively simple construct, although can be quantified in a variety of ways (which may have more or less salience to different individuals), including the size of a person’s social network, their social activity (i.e. the degree to which they utilize their network) and the quality of the most important relationships (incorporating both practical and emotional support). As stated above for dementia, larger networks are not always positive, particularly if

imposed on an individual who would prefer a smaller one, just as the imposition of a comprehensive care package or a move to a care home may represent a substantial stressor for an older person who values their independence and privacy. The personality and preferences of the individual are therefore important, although often unmeasured, modifying factors. Furthermore, the degree of social support in late life is a construct that has evolved over a lifetime, influenced by the individual’s capacity and need to form relationships and their previous relationships with family members (particularly with members of the younger generation who represent their potential future caregivers), as well as by external factors such as bereavement, disability, poverty and housing. While substantial research has investigated the evolution of mental disorders and their social correlates from childhood and adolescence through to adulthood, there is a substantial paucity of information on the further evolution of these factors from mid- to late life.

23.4.6

Modifying factors – response to stress, delayed onset and absolute risk

Social isolation is also a key aetiological factor in lateonset psychosis, in combination with other factors imposing this, such as deafness. Why isolation should result in depression in some people and psychosis in others is unclear, although the link with psychosis may be modified by previous personality and by other stressors specifically predisposing to this reaction. In this respect, interestingly, there is some evidence that late-onset psychosis shows similar associations with minority ethnic groups in the UK as the pattern seen in early onset forms (higher risk in African-Caribbean migrants [24]), suggesting that there may be shared aetiology. The clinical manifestation of psychosis does not differ substantially between early- and late-onset forms except that formal thought disorder is very rare or absent in the latter and, generally, there are higher levels of personality preservation. These similarities suggest that there may be, at least to some extent, a common syndrome with modification of the

SOCIAL DETERMINANTS OF LATE LIFE DISORDERS

phenotype depending on the age at which it becomes manifest. An interesting but unanswered question with both late-onset depression and lateonset psychosis is why these disorders have not manifested earlier in life. Either they are distinct disorders with age-dependent determinants (which appears unlikely from evidence to date) or else there may be protective factors in late-onset cases that have prevented the occurrence of the syndrome earlier in life. These protective factors could include both internal individual characteristics such as personality and genotype but could equally well consist of external factors such as the absence of stressors earlier in life or higher levels of social support. Considering genetic factors, there is a growing awareness that these may be important modifiers of environmental stressors so that a boundary between ‘social’ and ‘biological’ considerations becomes steadily less tenable. It has generally been assumed that familial factors become less influential in late life compared to early life mental disorder. However, for depression, this may simply have arisen through measurement error since older people may be less

23.5

303

likely to recall episodes of mental disorder (particularly if mild and/or late onset) in relatives and/or older generations may be less willing to report these. A recent study of elderly Koreans was able to replicate the interaction between the 5-HTTLPR genotype and stressful life events as predictors of depression, which had been previously described in much younger populations [25]. Subsequent findings in the same sample of similar interactions with other environmental risk factors (stroke and number of physical disorders [26,27]) further suggest that genetic factors retain their influence in late life and are important factors to consider in understanding the social aetiology of mental disorder. In general, social research into late life mental health has focused excessively on the negative aspects such as disorder categories and has tended to ignore perhaps the most important question, which is why so many older people with substantial levels of adversity remain mentally healthy. The concept of ‘resilience’ is still in its infancy but, if allowed more prominence, may well yield important findings upon which interventions to improve mental health can be based.

CONCLUSIONS

The social environment is as important in late life as in earlier adulthood, if not more so. Key differences are that these exposures have developed over a much longer period, quite possibly across the whole life course, requiring a higher level of complexity in modelling and analysis, which unfortunately has yet to be achieved by the majority of research in this area. Furthermore, there is a growing need to dispense with the distinction between ‘biological’ and ‘social’ factors. Research that restricts itself to biological pathways will underestimate the importance of social inequalities as a common underlying factor. However, research that is restricted to social factors may not adequately characterize the important biological causal pathway factors and effect modifiers. Continuing to investigate each separately will only lead to impoverished understandings of the conditions in question and may fail to identify the most appropriate targets for intervention.

REFERENCES 1. Hall, C. B., Derby, C., LeValley, A. et al. (2007) Education delays accelerated decline on a memory test in persons who develop dementia. Neurology, 69, 1657 1664. 2. Wilson, R. S., Bennett, D. A., Gilley, D. W. et al. (2000) Premorbid reading ability and patterns of cognitive decline in Alzheimer disease. Archives of Neurology, 57, 1718 1723. 3. Stern, Y., Tang, M. X., Denaro, J. and Mayeux, R. (1995) Increased risk of mortality in Alzheimer’s dis ease patients with more advanced educational and occupational attainment. Annals of Neurology, 37, 590 595. 4. Stern, Y., Alexander, G. E., Prohovnik, I. and Mayeux, R. (1992) Inverse relationship between edu cation and parietotemporal perfusion deficit in Alzheimer’s disease. Annals of Neurology, 32, 371 375.

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5. Snowdon, D. A., Kemper, S. J., Mortimer, J. A. et al. (1996) Linguistic ability in early life and cognitive function and Alzheimer’s disease in late life. Journal of the American Medical Association, 275, 528 532. 6. Elias, M. F., Robbins, M. A., Schultz, N. R. et al. (1987) Clinical significance of cognitive performance by hypertensive patients. Hypertension, 9, 192 197. 7. Stewart, R., Richards, M., Brayne, C. and Mann, A. (2001) Vascular risk and cognitive impairment in an older, British, African Caribbean population. Journal of the American Geriatrics Society, 49, 263 269. 8. Borenstein Graves, A., Mortimer, J. A., Bowen, J. D. et al. (2001) Head circumference and incident Alzheimer’s disease: modification by apolipoprotein E. Neurology, 57, 1453 1460. 9. Huang, T. L., Carlson, M. C., Fitzpatrick, A. L. et al. (2008) Knee height and arm span: a reflection of early life environment and risk of dementia. Neurology, 70, 1818 1826. 10. Kim, J. M., Stewart, R., Shin, I. S. and Yoon, J. S. (2003) Limb length and dementia in an older Korean population. Journal of Neurology, Neurosurgery and Psychiatry, 74, 427 432. 11. Kim, J. M., Stewart, R., Shin, I. S. et al. (2007) Asso ciations between head circumference, leg length and dementia in a Korean population. International Journal of Geriatric Psychiatry, 23, 41 48. 12. Stewart, R. (1998) Cardiovascular factors in Alzheimer’s disease. Journal of Neurology, Neurosur gery and Psychiatry, 65, 143 147. 13. Snowdon, D. A., Greiner, L. H., Mortimer, J. A. et al. (1997) Brain infarction and the clinical expression of Alzheimer disease. Journal of the American Medical Association, 277, 813 817. 14. Rovio, S., Kareholt, I., Helkala, E. L. et al. (2005) Leisure time physical activity at midlife and the risk of dementia and Alzheimer’s disease. Lancet Neurology, 4, 705 711. 15. Fratiglioni, L., Wang, H. X., Ericsson, K. et al. (2000) Influence of social network on occurrence of dementia: a community based longitudinal study. Lancet, 355, 1315 1319. 16. Wilson, R. S., Bennett, D. A., Bienias, J. L. et al. (2002) Cognitive activity and incident AD in a population based sample of older persons. Neurology, 59, 1910 1914. 17. Prince, M. J., Harwood, R. H., Blizard, R. A. et al. (1997) Impairment, disability and handicap as risk

18.

19.

20.

21.

22.

23.

24.

25.

26.

27.

factors for depression in old age. The Gospel Oak Project V. Psychological Medicine, 27, 311 321. Woo, J., Ho, S. C., Lau, J. et al. (1994) The prevalence of depressive symptoms and predisposing factors in an elderly Chinese population. Acta Psychiatrica Scanda navica, 89, 8 13. Jordanova, V., Stewart, R., Goldberg, D. et al. (2007) Age variation in life events and their relationship with common mental disorders in a national survey popula tion. Social Psychiatry and Psychiatric Epidemiology, 42, 611 616. Begum, A., Tsopelas, C., Lindesay, J. and Stewart, R. (2009) Cognitive function and common mental disor ders in older people with vascular and non vascular disorders. A national survey. International Journal of Geriatric Psychiatry, 7, 701 708. Prince, M. J., Harwood, R. H., Thomas, A. and Mann, A. H. (1998) A prospective population based cohort study of the effects of disablement and social milieu on the onset and maintenance of late life depression. The Gospel Oak Project VII. Psychological Medicine, 28, 337 350. Stewart, R., Prince, M. J., Harwood, R. H. et al. (2002) Quality of accommodation and risk of depression. An analysis of prospective data from the Gospel Oak Project. International Journal of Geriatric Psychiatry, 17, 1091 1098. Prince, M. J., Harwood, R. H., Blizard, R. A. et al. (1997) Social support deficits, loneliness and life events as risk factors for depression in old age. The Gospel Oak Project VI. Psychological Medicine, 27, 323 332. Reeves, S. J., Sauer, J., Stewart, R. et al. (2001) Increased first contact rates for very late onset schizo phrenia like psychosis in African and Caribbean born elders. British Journal of Psychiatry, 179, 172 174. Kim, J. M., Stewart, R., Kim, S. W. et al. (2007) Interactions between life stressors and susceptibility genes (5 HTTLPR and BDNF) on depression in Korean elders. Biological Psychiatry, 62, 423 428. Kim, J. M., Stewart, R., Kim, S. W. et al. (2007) BDNF genotype potentially modifying the association between incident stroke and depression. Neurobiology of Aging, 29, 789 792. Kim, J. M., Stewart, R., Kim, S. W. et al. (2009) Modification by two genes of associations between general somatic health and incident depressive syn drome in older people. Psychosomatic Medicine, 71, 286 291.

Part Four Social consequences and responses

24 Responses to the onset of mental health problems: issues and findings from research on illness behaviour and the use of health services Bernice A. Pescosolido Indiana University, Bloomington, Indiana, USA

In 1966, Kasl and Cobb [1] defined illness behaviour as what individuals do when they notice that there is something wrong with their health (e.g. getting extra rest, calling a help-line or seeking out a physician [1,2]). More simply, it targets how people react in the context of illness. Illness behaviour incorporates reactions that may be psychological or social, and seen as good or bad, adaptive and maladaptive, irrational or rational, traditional or modern. The need for distinctions among illness behaviour, health behaviour and sickness behaviour arose, perhaps, as individuals continually confused the object of their research, practice or policy efforts. Were they interested in how individuals maintain their health, prevent disease or catch it early in its course (health behaviours, e.g. regular mammograms)? Were they focused on individuals’ coping styles regarding ill-health and how they access the formal institutions of health care provisions (illness behaviour as defined above)? Or were they concerned with what individuals do or do not do after they

have been diagnosed (sickness behaviour, e.g. following doctor’s orders or filling prescriptions)? Different theoretical models sometimes reflected these distinctions early in their development. For example, the Health Belief Model [3] and Theory of Reasoned Action, when applied to health [4], focused heavily on whether individuals engaged in preventive health behaviours, looking to their intentions to engage in ‘positive behaviours’ (e.g. quitting smoking, going for routine physicals). The Sociobehavioural Model [5,6] focused on health service use, in both type (hospital, physician) and amount (number of visits per year). However, just as often as not, these models were used interchangeably by their developers and others to cut across the landscape of prevention, utilization and adherence/compliance. Returning to the specific meaning and nature of ‘illness behaviour’ is critical because we have forgotten some of the insights of Kasl and Cobb’s [1] conceptual clarification. Illness behaviour leads us to

Principles of Social Psychiatry, second edition Edited by Craig Morgan and Dinesh Bhugra Ó 2010 John Wiley & Sons, Ltd.

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consider and compile our stockpile of knowledge regarding the full scope of what individuals do when confronted with mental health problems. It involves the recognition of and response to symptoms, including coping and health service utilization. More importantly, it reminds us that actions are taken

24.1

depending on the individual, on the cultural context and on the resources available in the community. The purpose of this chapter is to review what we know with regard to illness behaviour, broadly defined as what individuals do when mental health problems occur.

THE CURRENT STATE OF AFFAIRS: COPING AND THE UTILIZATION OF HEALTH SERVICES

Despite inconsistencies that arise from different theoretical and disciplinary approaches, data sources and populations, a set of findings on health and illness behaviour have emerged from research investigations that began as early as the 1920s and continue to be a central concern [7]. While this review draws from research done globally, the fact is that many of the findings are based on results from the US, where research interest regarding the use of formal and, more recently, informal health behaviours has been consistent and where nationally representative studies have been most prevalent. As Rogers, Hassell and Nicolaas [8] point out the assumption of universal access in the National Health Services did not initially result in a heavy emphasis on illness behaviour.

onset of serious symptoms, or display illness behaviour that is avoidant, passive and emotionfocused [11,12]. This body of research tends to find low mastery among groups traditionally defined as having less social power (women, those with low education, minority groups [11]).

24.1.1

Too often, illness behaviour narrowly targets the use of formal health care services. Generally, modern medical practitioners with respect to mental health are divided into two broad categories (see Table 24.1): (1) specialized mental health care professionals including psychiatrists, psychologists, psychiatric nurses and social workers, as well as specialized hospitals, inpatient psychiatric units of general hospitals and outpatient mental health programmes and (2) general medical care including primary care practitioners, community hospitals without specialized psychiatric services and nursing homes. Even within these sectors, there is considerable variety in the scope, nature and quality of the clinical resources available to ill individuals and to the providers who care for them. However, as Table 24.1 indicates, coping with mental health problems often depends on three other sectors the lay system of care including friends,

Finding 1: coping resources and coping styles shape the initial response to the onset of mental health symptoms

Defined best by Lazarus and Folkman [9], ‘coping’ refers both to cognitive and behavioural attempts to manage situations that exceed an individual’s ability to adapt. While coping resources generally refer to individuals’ psychological or social psychological characteristics, coping styles tend to target the actions that individuals take [10,11]. For example, ‘feelings of mastery’, including having a sense that one can manage problems as they arise (i.e. internal locus of control) or are beyond one’s ability (i.e. external locus of control), shape whether individuals are likely to have an active, problem-solving reaction (including ‘help-seeking’) to problems, from daily stress to the

24.1.2

Finding 2: illness behaviour involves health `advisors'; i.e. individuals often turn to many behaviours and individuals to cope with mental health problems, combining them into unique patterns of response

RESPONSES TO THE ONSET OF MENTAL HEALTH PROBLEMS

Table 24.1

309

The range of choices for medical care and advice

Opinion

Advisor

Examples

Modern medical practitioners

MDs, osteopaths (general practitioners, specialists), allied health professions

Alternative medical practitioners

‘Traditional’ healers

Physicians, psychiatrists, podiatrists, optometrists, nurses, midwives, opticians, psychologists, druggists, technicians, aides Faith healers, spiritualists, shamans, curanderos, diviners, herbalists, acupuncturists, bonesetters, granny midwives Homeopaths, chiropractors, naturopaths, nutritional consultants, holistic practitioners Police, lawyers

‘Modern’ healers

Nonmedical professionals

Social workers, legal agents, clergymen, supervisors

Lay advisors

Family, neighbours, friends, co workers, classmates Self care

Other

Bosses, teachers Spouse, parents Nonprescription medicines, self examination procedures, folk remedies, health foods

None Source: Bernice A. Pescosolido, Carol A. Boyer and Keri M. Lubell (1999) The social dynamics of responding to mental health problems, in Handbook of the Sociology of Mental Health (eds Carol S. Aneshensel and Jo C. Phelan), Kluwer Academic/Plenum Publishers, New York, pp. 441 460.

family, co-workers and an increasingly visible set of support or self-help groups; the alternative or folk system of religious advisors and alternative healers; and the human/social service system, which includes police, clergy, teachers and social welfare providers. Together, these sectors of care form a complex web of community resources to treat and manage mental health problems [13]. Historically, the research focusing solely on formal health care service options was solidified after World War II and in Western societies. The use of alternative, indigenous and even informal sources of care was left to anthropologists, with their investigative lenses trained on non-Western societies and unique cultural subgroups, or to social psychologists who studied social support. However, by the 1970s, as disparities for growing immigration and ethnic populations came to light, as self-help and advocacy groups became more visible and as industrial societies experienced the resurgence of other forms of ‘help’ (e.g. Complementary Alternative Medicine (CAM) like

acupuncture or homeopathy), theorists questioned the utility of business-as-usual in understanding illness behaviour [14,15]. While much of the rich detail of illness behaviour pathways has been captured by in-depth, qualitative studies (e.g. see Reference [15]), Figure 24.1 provides an example of a newer approach using survey data. The ‘image matrix’ here suggests six pathways or patterns. Four patterns are singleton strategies, i.e. only one type of care (pattern 2, 17.5%, directly to the mental health sector; pattern 3, 31.5%, directly to the general medical sector; pattern 4, 15.3%, the clergy alone; pattern 5, 23.6%, only family or friends). More importantly, two complicated patterns involve formal care; these are more characteristic of the illness behaviour of those with the most serious mental health problems. In pattern 1, individuals talk to family and friends, consult clergy and go to a general medical practitioner (7.9%). In pattern 6, individuals also talk to family and friends and go to the general medical sector; in addition, they use the mental health sector

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Figure 24.1 Density and image matrices for utilization choices in Puerto Rico (N ¼ 365). (Adapted from Bernice A. Pescosolido, Eric R. Wright, Margarita Alegria and Mildred Vera (1998) Social networks and patterns of use among the poor with mental health problems in Puerto Rico. Medical Care, 36(7), 1057 1072.)

(4.1% [16]). In sum, as Leavey et al. [17] note for Turkey, ‘. . . help-seeking is seldom linear’ (see also Reference [18] on Iran).

support. However, there has been a direct increase in the resort to active coping strategies and seeking out informal health care ‘advisors’ (see Table 24.2).

24.1.3

24.1.4

Finding 3: the resort to different coping strategies has changed over time

Research on coping tends to be cross-sectional; however, Swindle and his colleagues [19] were able to reanalyse data from two of the most significant nationally representative studies conducted over time in the US and compare these to newly collected, contemporary data. The Americans View Their Mental Health studies were conducted at the University of Michigan in the 1950s and 1970s [20,21]. In 1996, a parallel set of questions was asked by the General Social Survey in the MacArthur Mental Health Module [22]. As shown in Table 24.2, when individuals were asked whether they had ever thought they were going to have a ‘nervous breakdown’, little change is seen in the resort to avoidance coping strategies or to formal

Finding 4: only a small percentage of individuals in `need' actually receive formal medical or mental health services (see also Chapter 8)

In the US, from the earliest community-based studies (e.g. the Midtown Manhattan Study [23]) to the most recent (the National Comorbidity Survey Replication [24]), the existence of a ‘treatment gap’ has been consistently documented. Current NCS-R estimates suggest that only one-third of individuals who met criteria for a mental disorder received treatment in the health care system. Even Mechanic [25], who is sceptical about the way ‘need’ is estimated in community studies, agrees that treatment rates are notoriously low (e.g. 3.5% of those who meet criteria for serious mental illness receive speciality care [26]). Thus, according to the ‘service gap’ [27] or the ‘clinical

RESPONSES TO THE ONSET OF MENTAL HEALTH PROBLEMS

Table 24.2 Participants’ coping response to ‘nervous breakdown,’ US national studies

Approach Avoidance Informal support Formal support

1957

1976

1996

12.5 27.8 6.5 48.1

20.1 24.4 12.4 49.8

31.6 29.0 28.3 42.0

Source: Ralph Swindle, Kenneth Heller, Bernice A. Pescosolido and Saeko Kikuzawa (2000) Responses to nervous breakdowns in America over a 40 year period: mental health policy implications. American Psychologist, 55 (7), 740 749.

iceberg model’ [8], most individuals who have mental health problems do not engage in illness behaviours that result in the receipt of formal medical care.

24.1.5

Finding 5: the public's understanding of mental health problems has become somewhat more sophisticated over time, recognition being key to engaging in formal and informal illness behaviours

In the US, Phelan et al. [28] report that the public’s view of what constitutes mental illness has broadened somewhat over time. Further, most individuals (over 60%) with mood, anxiety or substance abuse disorders recognize their own mental health problems [29]. While research tends to focus on the mainland US, there is supporting evidence from other places. For example, in a study of Puerto Rico [30], over threequarters of individuals with ‘definite mental health need’ recognized they had a mental health problem. Those who did recognize their situation also reported higher levels of service use (46%) than what is typically seen in population-based studies (see Reference [30] and also Reference [31] on Singapore).

24.1.6

Finding 6: there seems to be improvement in the use of services – both the formal and informal advisors to which individuals turn

According to data from the US National Comorbidity Survey Replication (NCS-R), the rate of treatment

311

increased amongst those defined as having a disorder (20.3 32.9%), even though the prevalence of mental disorders in the US did not change over the 10-year period from 1990 1992 to 2001 2003. Similar increases in treatment rates have been documented: for depression, in the National Ambulatory Medical Care Survey; for individuals with serious mental illness, in the American Community Tracking Survey; and for children with mental health problems, in the Dutch population [32,33]. Not surprisingly, increases did not occur evenly across the spectrum of informal and formal advisors. In the NCS-R, the jumps were seen in general medical services (2.59 times higher in the later period), psychiatry (2.17 times higher) and other mental health services (1.59 times as high) [32]. With regard to ‘nervous breakdown’, the reliance on informal supports, such as family and friends, showed the strongest increase over the past 20 years, particularly among the youngest age groups. In fact, while using formal sources of help remained essentially unchanged overall, the role of both physicians and psychiatrists declined, while the reported use of counsellors, social workers and psychologists rose from 0.6% in 1957 to 18% in 1996 [19].

24.1.7

Finding 7: `need' is an important and consistent predictor of the use of services, but it is not sufficient to understand the complex response to mental health problems or the long delays that accompany entry into treatment

As McAlpine and Boyer [34] note in their review of service use, individuals with the greatest impairment are most likely to receive speciality mental health treatment. While it may be reassuring to know that those with the most serious problems do get into care, there may be a long delay, even for serious psychoses. In the US, delays averaged from 6 to 8 years for mood disorders and even longer (9 to 23 years) for anxiety disorders [24,35]. Further, the association with need, though almost always in evidence, tends to be modest [32].

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Part of the reason for this may lie in the complex pathways that individuals with serious mental health problems travel. In a population-based study in Puerto Rico, those with the most severe illness reported multiple contacts. While the results show this expected finding individuals assessed with ‘definite need’ were more likely to travel successful pathways (versus do nothing) they were also more likely to travel failed pathways, or to be rejected or referred on by mental health specialists [13]. A ‘successful pathway’ (17%) ended in the use of a speciality mental health provider with no subsequent search for alternative ‘advisors’, except family and friends. ‘Failed pathways’ (40%) are sequences of illness behaviours that never result in access to mental health providers, though a number of lay, folk and formal advisors may be used. ‘Success with referral or rejection’ pathways (5%) end up in speciality health care but are followed by subsequent use of advisors in the lay, folk and/or general medical sector (37% of individuals did ‘nothing’). These findings challenge the power of ‘need’ to explain illness behaviour and the use of services, since ‘need’ was significantly and nearly equally associated with choosing any pathway beside the null one (see Refernce [8] on Britain, References [13,36,37] on France, Reference [38] on East London, Reference [39] on Cambodia and Reference [40] on Malaysia). In fact, in a comparison with standard approaches that simply conceptualize ‘use no use’ with this more complex pathways approach, the results reveal more complicated influences of social and cultural factors. In sum, ‘need’ does not drive the utilization of speciality care; it drives all of illness behaviour in ways that are complex and often inefficient.

24.1.8

Finding 8: `nonneeders' do receive care, and the use of services is not necessarily tied to a scale of severity

In the studies reported above, the data also indicated that treatment was provided to patients without diagnosable disorders, although the estimates vary. For example, the NCS-R found that about half of the

respondents did not meet the criteria [32,41]. The resulting debate centres on whether treatment resources should be focused on serious disorders, or whether illness behaviours that address mild disorders and subthreshold syndromes avert cost and suffering in the long run. In particular, given recent attention to prodromal schizophrenia and theories of brain plasticity, the issue of ‘appropriate’ illness behaviour, in terms of the use of societal resources, is far from settled [42].

24.1.9

Finding 9: illness behaviour, even the use of formal care, is not simply `help-seeking'

While not unique to the area of mental health, issues of involuntary commitment and forced medication make the consideration of different pathways regarding illness behaviour obvious. Prior research has addressed this issue from two different perspectives; however, they rarely, if ever, come together. Both utilization research and research on legal coercion (e.g. see References [43 45]) conceptualize entry into formal care. The former tends to see entry into care as ‘choice’; the latter explores how people with mental illness are forced into the treatment system by the actions of police, judges and family members. Figure 24.2 presents the frequency distribution for the classification of stories of choice, coercion and ‘muddling through’ (i.e. where individuals neither resist nor seek treatment) from a study of the entry of ‘first timers’ into mental health treatment [36]. In fewer than half of the stories (45.9%), respondents indicated that they came into care through a ‘decision’ where they played, in full or in part, an active and positive role. Almost one-quarter of respondents (22.9%) told stories of active resistance. They came into the mental health system against their will, brought in by the police or under pressure from family, friends and co-workers. Almost a third (31.2%) of respondents reported stories in which they played no active role in seeking out or resisting treatment. Generally, those that ‘muddled through’ either vacillated about seeking treatment or told their story as bystanders to the decision-making process.

RESPONSES TO THE ONSET OF MENTAL HEALTH PROBLEMS

313

Figure 24.2 Percentage of individuals reporting different accounts of initial entry into the mental health system, INMHS 1990 1994 (n ¼ 109). (Adapted from Bernice A. Pescosolido, Carol Brooks Gardner and Keri M. Lubell (1998) How people get into mental health services: stories of choice, coer cion and ‘muddling through’ from ‘first timers. Social Science and Medicine, 46 (2), 275 286)

24.1.10

Finding 10: illness behaviour is shaped, facilitated and constrained by the time and place in which mental health problems arise

The mental health system, while global, is embedded in a social and cultural context. As Kessler et al. [32] point out, the results of the early Epidemiological Catchment Area studies, the first to do populationbased studies, and even the original National Comorbidity Study, cannot adequately describe illness behaviour for mental health problems because of the dramatic changes in the US health care delivery system. AsGoffman[46]remindedus, theillness careeristwo sided, shaped by both individuals and institutions. In the

US and many Western nations, mental hospitals served as core locations for the treatment of persons thought to be mentally ill. Beginning in the late 1950s, an initial deinstitutionalization of patients from the hospital became a broad ‘transfer of care’ [47 49] that produced a complex set of organizations (e.g. acute and long-term hospitals, day treatment, treatment teams, group homes, nursing homes, community mental health centres, alternative care and peer-operated systems), all engaged in the care of persons with mental disorders [50]. Thus, the range of speciality care that might be included or sequences in illness behaviour in the US is very different from those in some countries in the formerSovietUnion, Asia or Africa, where institutional care and the absence of psychiatrists shape pathways with a near total dependence on primary care, alternative/indigenous providers and the family [51].

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24.1.11

Finding 11: sociodemographic characteristics are not consistent predictors of illness behaviour and the use of services

While most studies attempt to, and often find, the influence of sociodemographic characteristics on illness behaviour, the view across studies is not cumulative. It is not surprising that older individuals tend to report receiving mental health care in the general medical sector [52]. However, the findings from one study to another, perhaps due to different samples, targeted groups or methods, produce discrepancies in the results. Even among those characteristics, like gender, income or race/ethnicity, that have been seen as the most stable correlates, Alegrıa and her colleagues [41] found that, in contrast to the dominant expectation, poor women were just as likely to receive mental health care as men. In addition, as they point out, some studies have found underutilization of mental health services by Hispanics, while others have not (see similar findings on the Maori in New Zealand [53]). Even the increases in the use of formal services in the NCS-R were independent of need and the sociodemographic characteristics of the respondents [32]. This does not mean that systematic disparities are not evident in illness behaviour and service use. Despite different findings from past research, there is evidence that individuals belonging to racial and ethnic

24.2

groups are less likely to receive formal treatment, despite similar rates of disorder [54]. Even in Britain, a lack of access for some population groups radically undermined the presumption in the NHS of universal and easy access [8]. What the inconsistencies in sociodemographic findings do signal, however, is that understanding illness behaviour requires examining what individuals do, given the social context in which they experience mental health problems, and exploring the actual network resources available to them [16].

24.1.12

Finding 12: mental health profiles and sociobehavioural factors work together to shape illness behaviour

The debate over the role of need versus social, cultural or organizational factors on illness behaviour is scientifically obsolete. For example, in the study of different pathways into care cited above [16], the interaction of networks (i.e. large networks) and type of symptom profile (i.e. bipolar disorder) together shaped the coercive or involuntary pathways to treatment (see also References [16] and [55]). At the same time, to understand illness behaviour, McAlpine and Boyer [34] argue that the social causes of illness behaviour need to be separate from the social causes associated with mental health problems or psychiatric illness.

EXPLAINING ILLNESS BEHAVIOUR: THEORETICAL MODELS, PAST AND PRESENT

As noted above, Rogers, Hassell and Nicolaas [8] contend that recent NHS developments such as overt rationing and cost containment have only relatively recently exposed disparities in care and increased attention on health service use. As a result, they argue that little of the theoretical development of models of illness behaviour has taken place in health care research in Britain until recently. Rather, the intense effort to conceptualize illness behaviour has been located, for the most part, in the United States, where issues of access and inequity have always been part of health care research and policy. In fact, there is no shortage of theoretical models (see References [7] and [56]).

The dominant tradition in quantitative, typically representative approaches has been described as a set of rational choice models. In this tradition, individuals stand at the centre of illness behaviour, making a cost benefit analysis that weighs their attitudes and beliefs (e.g. the Health Belief Model [57]), their predisposing characteristics or their perceived/actual access (the Sociobehavioural Model [5,6]). However, there has always been a parallel tradition in which qualitative, in-depth studies have followed a selected group of individuals, detailing illness behaviour [58 60]. Both the advantages and disadvantages of these diverse traditions have been described; in fact,

RESPONSES TO THE ONSET OF MENTAL HEALTH PROBLEMS

the attempt to bring the best of these together characterizes the most theoretically oriented work in illness behaviour and utilization [7]. As Uehara [15] summarizes: In recent decades, research on illness and help seeking has moved away from static, psychologistic models of medical decision making toward those that conceptualise help seeking as a dynamic and inex tricably social phenomenon. Social structural influ ences, in so far as they were the focus of interest, were conceptualised in terms of the categorical attri butes of the individual (e.g., race, gender and socio economic status). By the mid 1970s, a number of important trends (including the shift in public health emphasis from acute to chronic illness and the

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continuing cross disciplinary evidence of the central ity of lay networks in defining illness etiology, con ceptions of cure and acceptable treatment) clearly indicated the need for a more medically pluralistic and dynamic conception of what transpires in the event of illness (p. 519).

Pictured in Figure 24.3, the Network-Episode Model (NEM) represents one of the efforts to synthesize illness behaviour, service use and outcomes through conceptualizing illness as a career [8]. While it takes a transdisciplinary approach, drawing useful ideas and methods from past research, it sets the structure and context of social ties as the mechanisms underlying the recognition and response to the onset of mental health problems, and as an integrating

Figure 24.3 The network episode model. (From Bernice A. Pescosolido, Carol A. Boyer and Keri M. Lubell (1999) The social dynamics of responding to mental health problems, in Handbook of the Sociology of Mental Health (eds Carol S. Aneshensel and Jo C. Phelan), Kluwer Academic/Plenum Publishers, New York, pp. 441 460)

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mechanism connecting environmental levels. Depending on what kind of social networks individuals have, they will be predisposed to talk to informal advisors, seek professional care or see a need for other social services. The NEM begins with the assumption that individuals are pragmatic, dynamic and inherently social in response to mental health problems, although in some cases and under particular circumstances, they can be rational or they can be calculating individualists. As depicted in Figure 24.3, the entire illness career, rather than any decision to seek assistance, becomes the focus; i.e. the timing and sequencing of key role exits and entrances across an entire episode create patterns and pathways. The response to illness is a social influences process that works through the mechanism of networks, whether in the community (top stream) or the treatment system (bottom stream). While the size of an individual’s network calibrates the degree of the ‘push/pull’ into or out of care, what

24.3

these networks hold in terms of experience, attitudes and knowledge creates the trajectory. Sociodemographics matter if they shape the size and cultural character of networks [61]. For example, a large social network means a reserve of people to assist in informal care and to offer a good deal of social pressure. If they are Kadushin’s [62] ‘friends and supporters of psychotherapy’, individuals will be likely to use formal services and they are likely to come with less delay. Conversely, if their network ties are sceptical of the mental health or medical care system, these community ties will provide care, delay the use of services and suggest resort to the formal system only when the situation has exhausted network resources. This approach offers distinct intervention and policy advantages. Social networks, unlike individuals’ race or income, provide a place to direct change because they are subject to educational and therapeutic forces.

CHALLENGES TO UNDERSTANDING ILLNESS BEHAVIOUR IN FUTURE RESEARCH

McAlpine and Boyer [34] echo David Mechanic’s [63] early and insightful concern that continuing to accumulate studies that correlate variables with entry into treatment holds only limited value in improving our understanding of how individuals respond to mental health problems. Such accountings have a value for organizational and policy purposes because they track units of service. However, they are less useful in helping us understand illness behaviour. At each level of society (the policy level, the mental health system level and the individual/consumer provider level) influences at work create pressures and cross-pressures that require more complex, dynamic theory, multimethod approaches and the development of analytic tools more suited to these complexities [8,15,34]. Currently in revision, the NEM-Phase III answers the call for an integrated health sciences model where social network influences are not devoid of the individual variation in personality, biology and genetics that individuals bring to them [64]. Other theoretical approaches, which offer different starting

points, can provide additional insights into illness behaviour. REFERENCES 1. Kasl, S. V. and Cobb, S. (1966) Health behaviour, illness behaviour, and sick role behaviour. I. Health and illness behaviour. Archives of Environmental Health, 12, 246 266. 2. Mechanic, D. (1961) The concept of illness behaviour. Journal of Chronic Disease, 15, 189 194. 3. Rosenstock, I. M. (1966) Why people use health ser vices. Milbank Memorial Fund Quarterly, 44(3), 94 106. 4. Fishbein, M. and Ajzen, I. (1975) Belief, Attitude, Inten tion, and Behaviour: An Introduction to Theory and Research, Addison Wesley, Reading, Massachusetts. 5. Andersen, R. (1968) A Behavioural Model of Families’ Use of Health Services, Report, Research Series 25, Center for Administration Studies, University of Chicago, Chicago, Illinois.

RESPONSES TO THE ONSET OF MENTAL HEALTH PROBLEMS

6. Andersen, R. (1995) Revisiting the behavioural model and access to medical care: Does it matter? Journal of Health and Social Behaviour, 36 (1), 1 10. 7. Pescosolido, B. A. and Kronenfeld, J. (1995) Health, illness, and healing in an uncertain era: challenges from and for medical sociology. Journal of Health and Social Behaviour, 35 (Extra Issue), 5 33. 8. Rogers, A., Hassell, K. and Nicolaas, G. (1999) Demanding Patients? Analysing the Use of Primary Care (ed. C. Ham), Open University Press, Philadelphia, Pennsylvania. 9. Lazarus, R. S. and Folkman, S. (1984) Stress, Apprai sal, and Coping, Springer, New York. 10. Gore, S. (1985) Social support and styles of coping with stress, in Stress and Health (eds S. Cohen and S. L. Syme), Academic, Orlando, Florida, pp. 263 278. 11. Thoits, P. (1995) Stress, coping, and social support processes: Where are we? What next? Journal of Health and Social Behaviour, 35 (Extra Issue), 53 79. 12. Turner, R. J. and Rozell, P. (1994) Psychosocial resources and the stress process, in Stress and Mental Health: Contemporary Issues and Prospects for the Future (eds W. R. Avison and I. H. Gotlib), Plenum Press, New York, pp. 179 210. 13. Pescosolido, B. A., Boyer, C. A. and Lubell, K. M. (1999) The social dynamics of responding to mental health problems: past, present, and future challenges to understanding individuals’ use of services, in Hand book of the Sociology of Mental Health (eds C. Aneshensel and J. Phelan), Plenum Press, New York, pp. 441 460. 14. Pescosolido, B. A. (1992) Beyond rational choice: the social dynamics of how people seek help. American Journal of Sociology, 97, 1096 1138. 15. Uehara, E. S. (2001) Understanding the dynamics of illness and help seeking: event structure analysis and a Cambodian American narrative of ‘spirit invasion’. Social Science and Medicine, 52 (4), 519 536. 16. Pescosolido, B. A., Wright, E. R., Alegria, M. and Vera, M. (1998) Social networks and patterns of use among the poor with mental health problems in Puerto Rico. Medical Care, 36 (7), 1057 1072. 17. Leavey, G., Guvenir, T., Hasase Casanovas, S. and Dein, S. (2007) Finding help: Turkish speaking refugees and migrants with a history of psychosis. Transcultural Psychiatry, 44 (2), 258 274. 18. Dejman, M., Ekblad, S., Forouzan, A. S. et al. (2008) Explanatory model of help seeking and coping

19.

20.

21.

22.

23.

24.

25.

26.

27.

28.

29.

317

mechanisms among depressed women in three ethnic groups of Fars, Kurdish, and Turkish in Iran. Archives of Iranian Medicine, 11 (4), 397 406. Swindle, R., Heller, K., Pescosolido, B. A. and Kikuzawa, S. (2000) Responses to ‘nervous break downs’ in America over a 40 year period: mental health policy implications. American Psychologist, 55 (7), 740 749. Gurin, G., Veroff, J. and Feld, S. (1960) Americans View Their Mental Health: A Nationwide Survey, Basic Books, New York. Veroff, J., Kulka, R. A. and Douvan, E. (1981) Mental Health in America: Patterns of Help Seeking from 1957 to 1976, Basic Books, New York. Pescosolido, B. A., Martin, J. K., Link, B. G. et al. (2000) Americans’ Views of Mental Illness and Health at Century’s End: Continuity and Change, Public Report on the MacArthur Mental Health Module, 1996 General Social Survey: Indiana Consortium for Mental Health Services Research, Bloomington, Indiana. Srole, L. (1975) Midtown and several other popula tions, in Mental Health in the Metropolis: The Midtown Manhattan Study (eds L. Srole and A. K. Fischer), McGraw Hill, New York, pp. 183 239. Wang, P. S., Berglund, P., Olfson, M. et al. (2005) Failure and delay in initial treatment contact after first onset of mental disorders in the national comorbidity survey replication. Archives of General Psychiatry, 62, 603 613. Mechanic, D. (2003) Is the prevalence of mental dis orders a good measure of the need for services? Health Affairs, 22, 8 20. McAlpine, D. and Mechanic, D. (2000) Utilization of specialty mental health care among persons with severe mental illness: the roles of demographics, need, insur ance, and risk. Health Services Research, 35, 277 292. Cleary, P. D. (1989) The need and demand for mental health services, in The Future of Mental Health Services Research (eds C. A. Taube, D. Mechanic and A. Hohmann), National Institutes of Mental Health, Rockville, Maryland. Phelan, J. C., Link, B. G., Stueve, A. and Pescosolido, B. A. (2000) Public conceptions of mental illness in 1950 and 1996: What is mental illness and is it to be feared? Journal of Health and Social Behaviour, 41 (2), 188 207. Mojtabai, R., Olfson, M. and Mechanic, D. (2002) Perceived need and help seeking in adults with mood, anxiety, or substance use disorders. Archives of General Psychiatry, 59 (1), 77 84.

318

SOCIAL CONSEQUENCES AND RESPONSES

30. Vera, M., Alegria, M., Freeman, R. et al. (1998) Help seeking for mental health care among poor Puerto Ricans: problem recognition, service use, and type of provider. Medical Care, 36 (7), 1047 1056. 31. Ng, T. P., Jin, A. Z., Ho, R. et al. (2008) Health beliefs and help seeking for depressive and anxiety disorders among urban Singaporean adults. Psychiatric Services, 59 (1), 105 108. 32. Kessler, R. C., Berglund, P., Demler, O. et al. (2005) Lifetime prevalence and age of onset distributions of DSM IV disorders in the National Comorbidity Survey Replication. Archives of General Psychiatry, 62 (6), 593 602. 33. Tick, N. T., van der Ende, J. and Verhulst, F. C. (2008) Ten year increase in service use in the Dutch popuation. European Child and Adolescent Psychiatry, 17 (6), 373 380. 34. McAlpine, D. and Boyer, C. (2007) Sociological tradi tions in the study of mental health services utilization, in Mental Health, Social Mirror (eds W. R. Avison, J. D. McLeod and B. A. Pescosolido), Springer, New York. 35. Bruffaerts, R., Bonnewyn, A. and Demyttenaere, K. (2007) Delays in seeking treatment for mental disorders in the Belgian general population. Social Psychiatry and Psychiatric Epidemiology, 42 (11), 937 944. 36. Pescosolido, B. A., Brooks Gardner, C. and Lubell, K. M. (1998) How people get into mental health services: stories of choice, coercion and ‘muddling through’ from ‘first timers’. Social Science and Medicine, 46 (2), 275 286. 37. Kovess Masfety, V., Saragoussi, D., Sevilla Dedieu, C. et al. (2007) What makes people decide who to turn to when faced with a mental health problem? Results from a French survey. BMC Public Health, 7, 188. 38. Rudell, K., Bhui, K. and Priebe, S. (2008) Do ‘alter native’ help seeking strategies affect primary care ser vice use? A survey of help seeking for mental distress. BMC Public Health, 8, 207. 39. Coton, X., Poly, S., Hoyois, P. et al. (2008) The healthcare seeking behaviour of schizophrenic patients in Cambodia. International Journal of Social Psychia try, 54 (4), 328 337. 40. Razali, S. M. and Mohd, Y. (2008) The pathway followed by psychotic patients to a tertiary health center in a developing country: a comparison with patients with epilepsy. Epilepsy and Behaviour, 13 (2), 343 349. 41. Alegria, M., Robles, R., Freeman, D. H. et al. (1991) Patterns of mental health utilization among island

42.

43.

44.

45.

46.

47.

48.

49. 50.

51.

52.

53.

Puerto Rican poor. American Journal of Public Health, 81 (7), 875 879. McGlashan, T. H., Addington, J., Cannon, T. et al. (2007) Recruitment and treatment practices for help seeking ‘prodromal’ patients. Schizophrenia Bulletin, 33 (3), 715 726. Monahan, J., Hoge, S. K., Lidz, C. W. et al. (1996) Coercion to inpatient treatment: initial results and implications for assertive treatment in the community, in Coercion and Aggressive Community Treatment (eds D. Dennis and J. Monahan), Plenum Press, New York. Hiday, V. A. (1992) Coercion in civil commitment: process, preferences, and outcome. International Jour nal of Law and Psychiatry, 15, 359 377. Matthews, A. R. (1970) Observations on policy, poli cing and procedures for emergency detention of the mentally ill. Journal of Criminal Law, Criminology and Police Science, 61, 283 295. Goffman, E. (1963) Stigma: Notes on the Management of Spoiled Identity, Prentice Hall, Englewood Cliffs, New Jersey. Brown, P. (1985) The Transfer of Care: Psychiatric Deinstitutionalization and Its Aftermath, Routledge & Kegan Paul, London. Gronfein, W. (1985) Psychotropic drugs and the origins of deinstitutionalization. Social Problems, 32 (5), 437 454. Mechanic, D. (1989) Mental Health and Social Policy, 3rd edn, Prentice Hall, Englewood Cliffs, New Jersey. Pavalko, E. K., Harding, C. M. and Pescosolido, B. A. (2007) Mental illness careers in an era of change. Social Problems, 54 (4), 504 522. Belfer, M. L., Remschmidt, H., Nurcombe, B. et al. (2007) A global programme for child and adolescent mental health: a challenge in the new millennium, in The Mental Health of Children and Adolescents: An Area of Global Neglect (eds H. Remschmidt et al.), John Wiley & Sons, Inc., New York. Borges, G., Wang, P. S., Medina Mora, M. E. et al. (2007) Delay of first treatment of mental and substance use disorders in Mexico. American Journal of Public Health, 97 (9), 1638 1643. Kumar, S. and Oakley Browne, M. A. (2008) Useful ness of the construct of social network to explain mental health service utilization by the Maori population in New Zealand. Transcultural Psychiatry, 45 (3), 439 454.

RESPONSES TO THE ONSET OF MENTAL HEALTH PROBLEMS

54. Cooper Patrick, L., Gallo, J. J., Powe, N. R. et al. (1999) Mental health service utilization by African Americans and Whites: the Baltimore epidemiological catchment area follow up. Medical Care, 37, 1034 1045. 55. Carpentier, N. and White, D. (2002) Cohesion of the primary social network and sustained service use before the first psychiatric hospitalization. Journal of Beha vioural Health Services and Research, 29(4), 404 418. 56. Gochman, D. S. (1997) Handbook of Health Behaviour Research, Plenum Press, New York and London. 57. Eraker, S. A., Kirscht, J. P. and Becker, M. H. (1984) Understanding and improving patient compliance. Annals of Internal Medicine, 100, 258 268. 58. Clausen, J. A. and Yarrow, M. R. (1955) Pathways to the mental hospital. Journal of Social Issues, 11, 25 32. 59. Zola, I. K. (1973) Pathways to the doctor from person to patient. Social Science and Medicine, 7 (9), 677 689.

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60. Janzen, J. M. (1978) The Quest for Therapy in Lower Zaire, University of California Press, Berkeley, California. 61. Viladrich, A. (2007) From ‘Shrinks’ to ‘Urban Shamans’: Argentine immigrants’ terapeutic eclecti cism in New York City. Culture, Medicine and Psy chiatry, 31 (3), 307 328. 62. Kadushin, C. (1966) The friends and supporters of psychotherapy: on social circles in urban life. American Sociological Review, 31, 786. 63. Mechanic, D. (1975) Sociocultural and sociopsycho logical factors affecting personal responses to psycho logical disorder. Journal of Health and Social Beha viour, 16, 393 404. 64. Pescosolido, B. A. (2006) Of pride and prejudice: the role of sociology and social networks in integrating the health sciences. Journal of Health and Social Behaviour, 47 (September), 189 208.

25 Gender and reproductive health Louise Howard Section of Women' s Mental Health, Health Service and Population Research Department, Institute of Psychiatry, King' s College London, London, UK

Reproduction is an integral part of being human. Most men and women have children, including people with mental health problems. There is a complex relationship between societal norms and attitudes, reproduction and mental health, which has changed over time and continues to evolve. Historically, social norms did not allow the severely mentally ill to be parents, and parenting outside marriage was considered to be deviant enough to lead to incarceration in psychiatric asylums in the nineteenth century [1]. More recently, although there has been increasing recognition of the desire of people with severe mental illness to fulfil their ‘normal role’ and be parents [2], the response of society to parenting in people with severe mental disorders remains characterized by ambivalence, with very limited support available for parenting needs.

25.1

This is despite professionals’ concerns about parenting difficulties and the removal of child custody in a significant proportion of these families. Even in people with less severe mental disorders there is a clear impact of social factors on reproductive and mental health. For example, the impact of having to fulfil multiple roles in society (e.g. mother, wife, carer and employee) is seen as a major determinant of the increased prevalence of common mental disorders in women [3]. In addition, women are more likely to live in poverty and experience sexual and domestic violence. This chapter focuses on the response of society to reproduction in those with mental health problems and on how social factors impact on mental health during the reproductive period.

ABORTION AND MENTAL HEALTH

The response of society to abortion in people with mental illnesses or those perceived to be at risk of mental health problems is an area where the impact of culture and the wider society have a profound effect on health. 94% of abortions in the UK are carried out because continuation of the pregnancy would involve

risk to a woman’s mental health [4]. Mental illness or risk of mental illness is therefore used by society to justify the use of abortion. However, it has also been claimed that abortion itself can lead to an increased risk of mental illness (e.g. see Reference [5]). Such data has been used by pro-life activists in testimony in

Principles of Social Psychiatry, second edition Edited by Craig Morgan and Dinesh Bhugra Ó 2010 John Wiley & Sons, Ltd.

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support of a law that would ban abortion in South Dakota (except for those in which the mother’s life was in danger), though such measures have been defeated in recent US elections [6]. Nevertheless, the South Dakota ‘informed consent to abortion law’ mandates a discussion between the physician and the woman seeking abortion, on what the law calls the risks of abortion, including depression and suicide, despite limited evidence of such risks (see Reference [7]). The scientific literature on any association between abortion and mental health is therefore influenced by this highly charged sociopolitical context, with publications in highly respected journals being tainted by the lack of declared conflicts of interest by pro-life and pro-choice authors (see Reference [8] and subsequent correspondence in the British Medical Journal). Clearly, unwanted pregnancy and abortion do not occur in a social vacuum and the current sociopolitical climate of some countries such as the United States of America stigmatizes some women (e.g. the teenage and unmarried) who have pregnancies, as well as women who have abortions and the nurses and physicians who provide them [9]. A review of the literature on the mental health consequences of abortion is beyond the scope of this chapter, but the most recent critical and comprehensive reviews of research in this area have concluded that among adult women who have an unplanned pregnancy, the relative risk of mental health problems is no greater if they have a

25.2

single elected first trimester abortion than if they deliver that pregnancy [9,10]. While longitudinal research has been published by researchers who conclude exposure to abortion accounts for 1.5 5.5% of mental disorders (e.g. see Reference [5]), such studies can never adequately adjust for the psychosocial factors that led to abortion or fully distinguish the effect on mental health of not having an abortion and continuing with an unwanted pregnancy. There is also some evidence that women reporting pregnancy loss are at a higher risk of affective disorders and substance misuse irrespective of whether the loss was due to abortion or miscarriage [11]. It is clear that the circumstances that lead to an unwanted pregnancy, and previous psychiatric history, are important determinants of the mental health status of women after the abortion. Current evidence highlights the importance of identifying risk factors for adverse mental health outcomes after an abortion, including pre-existing mental illnesses [10]. Nevertheless, it is likely that societal attitudes will continue to influence both research on abortion and mental health, and clinical services providing abortion where the assessment of mental health is often central for clinicians assessing women seeking an abortion. While some commentators have concluded that abortion should not be a psychiatric issue at all but a moral, legal and ethical one [12], abortion is likely to continue to be associated with psychiatry while the law links abortion and mental health.

PREGNANCY AND MENTAL HEALTH PROBLEMS

Traditionally pregnancy has been perceived as a time of particularly good mental health with an idealized picture of women blooming in pregnancy. Women are expected to be fundamentally content at the prospect of being a mother [13], though there is a clear acceptance in Western culture that mental ill-health occurs, with this frequently being cited as a reason for termination of pregnancy (see above). Recent studies have also shown that in women who continue with their pregnancy mental health problems are far from rare. For example, Evans et al. [14] reported that levels of depressive symptoms were higher in the third trimester than postnatally and a meta-analysis of

major depression found a prevalence of 12.7% during pregnancy [15]; it is also now increasingly recognized that postnatal depression often begins antenatally [16]. Postnatal depression itself is one of the commonest adverse consequences of pregnancy, with a prevalence between 10 and 13% [17]. Nevertheless, society’s views of pregnancy and motherhood as a time of happiness and fulfilment may mean it is particularly difficult for women to admit to mental health problems during the perinatal period; the stigma of mental illness may therefore be even more pronounced in the perinatal period compared with other times in a woman’s life [18].

GENDER AND REPRODUCTIVE HEALTH

Perinatal mental illness is associated with similar risk factors for mental illness that occur at other times in a women’s life, including lack of social support [19 23], stressful life events [20,24], marital conflict [20,22,24,25], younger maternal age [26] and a history of psychiatric problems [17]. However, the impact of mental illness during the perinatal period is not only on the woman herself but also on her infant and the rest of her family. There is a large body of evidence suggesting that postnatal depression is associated with adverse infant developmental outcomes [27 30], particularly in developing countries [31], and there is also now a growing literature on the adverse effect of schizophrenia and other major mental illnesses on mother infant interaction [27,32,33]. Recent research has also focused on the adverse impact of antenatal disorders on child outcomes (e.g. see Reference [34]), This research literature has been widely disseminated and has an impact on women’s attitudes to psychological problems, possibly making it more difficult for them to seek help for mental health problems during the perinatal period (see Reference [35]). These issues are most pronounced for pregnant women with severe mental disorders. Before the advent of community psychiatry many patients with severe mental disorders were incarcerated on longstay wards in asylums with very limited opportunities for relationships. If any such relationship resulted in a pregnancy the child was inevitably removed from the woman’s care. Studies of fertility at this time found low fertility in women with schizophrenia, though these studies usually only included hospitalized patients and did not examine reproduction over the whole reproductive period [36]. An increase in fertility was reported in several countries in the 1960s and 1970s, though rates continued to be lower than in the general population. More recently, a study using a larger primary care data set reporting on the general fertility rate, a more accurate measure of fertility than previously used, found lower fertility rates in women with nonaffective psychoses compared with controls matched for age and general practice [37]. However, reduction in fertility in women with psychotic disorder is at least partly explained by prolactin-raising antipsychotic medication (which can lead to anovulatory cycles or amenorrhoea); with increasing use of newer antipsychotic medications that do not

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raise prolactin it is likely that fertility will continue to increase in women with psychotic disorders. Women with schizophrenia are less likely than women with affective psychosis to have stable relationships and this is likely to reduce fertility in itself. However, recent epidemiological studies have reported that around two-thirds of women with chronic psychotic disorders have children at some point in their lives [38,39]. Women with severe mental disorders who become pregnant are at an increased risk of obstetric complications including low birth weight, intrauterine growth retardation, pre-term birth, stillbirth and perinatal death [40,41], and are therefore particularly in need of optimal antenatal care. The increased risk of complications is likely to be due to a number of factors, including genetic susceptibility, psychotropic medication and lifestyle factors, e.g. smoking, substance misuse, poor nutrition and poverty [36], and there is also accumulating evidence that severe psychological stress during pregnancy has an adverse effect on foetal development [42]. Psychiatric disorders are also now a leading cause of maternal death during the perinatal period (pregnancy and up to one year postpartum) in industrialized countries [43,44]. Recent National Institute for Clinical Excellence guidelines in the UK highlight the importance of detecting and treating psychiatric disorders during pregnancy, but it is clear that the stigma of mental illness continues to prevent women with a history of severe mental disorders from openly disclosing their psychiatric history. It also prevents professionals responding appropriately, even to pregnant psychiatric professionals with a history of severe mental disorder. This tragically led to infanticide and the suicide of a UK young psychiatrist with bipolar disorder [45]. This may also be why women with psychiatric disorders are less likely to access adequate antenatal care than other women [46]. Women are at increased risk of relapse of mental disorders in the perinatal period, partly as a result of discontinuation of medication during pregnancy [47]. Such discontinuation is often due to understandable fears of the effect of medication on the growing foetus, often also reflecting friends and families’ concerns [48]. Since the thalidomide scare in the 1960s,

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ambiguous (usually alarmist) stories in the media have not infrequently appeared regarding the safety/risk of psychotropic drug exposures during pregnancy. Although the impact on the public of this type of reporting is unclear, specialized centres have reported adverse effects of these misleading sources of information [49]. Drug discontinuation may not be clinically advisable for women with a history of severe disorders as the illness itself can lead to poor outcomes for the mother and the infant [50]. Women with a history of bipolar disorder are also at particularly high risk of relapse in the early postnatal period [51]. Although many women with severe mental disorders are able to rear a family successfully (see below), a substantial proportion of women with mental disorders do have parenting difficulties. As a result, health and social services are often asked to consider, during pregnancy, whether a pregnant woman with a severe mental disorder should keep her baby postnatally. At present services do not always make parenting assessments optimally in a study of mothers in a psychiatric mother and baby unit in south London where there had been pre-birth concern, pre-birth planning (in the form of a case conference and arrangements for residential assessment where appropriate) occurred in less than half the study population [52].

25.3

Women suffering from an acute exacerbation of their mental disorder during the immediate postnatal period, or with an episode of postnatal psychosis (a particularly severe form of affective psychosis), often need admission to a psychiatric unit. The current recommended management of mothers with postpartum disorders, in the UK at least, is to keep the mother with the baby whenever possible, although this recommendation is relatively recent. In the first half of the twentieth century separation of mother and infant was considered to be best practice, whether the mother was cared for in the home or an asylum [53]. It was only in the late 1950s that practice began to change and the first facilities to allow joint psychiatric admission were established in the United Kingdom. Since this time the type and number of facilities has varied [54], ranging from a single bed on a general psychiatric ward, where a baby may also be accommodated, to large separate wards with dedicated staff (mother and baby units). These units appear to be valued by patients, but their availability is patchy, even in countries such as the UK where they are recommended [54]. There have been few evaluations of mother and baby units and no randomized controlled trials investigating their effectiveness [55].

MOTHERS WITH SEVERE MENTAL DISORDERS

There is now a considerable literature describing the wish of women with severe mental illness to fulfil their ‘normal role’ and be parents, and their fear of being stigmatized as parents because of their psychiatric diagnosis [56]. The female desire to bear children can be so great that it continues despite repeated losses of previous children to the care system [57], and many women with severe mental disorders see the role of motherhood as the normalization of their otherwise limited lifestyle [56] parenthood can potentially overcome the isolation and stigma that are associated with long-term mental illness [2]. Indeed, the majority of women with severe mental disorders, i.e. chronic psychotic disorders, have children [38,39], but fears of custody loss are of frequent concern. These concerns are understandable as a significant proportion, particu-

larly those with a diagnosis of schizophrenia, are not the primary carers of their children [58]. There is clearly an association between severe mental illness and parenting difficulties, but the risk of severe mental illness is higher in individuals with low income, low levels of education, lack of support and life stressors [59]. These factors also increase the risk of parenting stress and dampened parenting nurturance [60,61], so these risk factors can be just as important in leading to poor parenting outcomes in parents with severe mental illness. The complex interrelationships between these various risk factors, severe mental illness and parenting difficulties, are likely to be multidirectional, and interventions to mitigate the effects of such risk factors may lead to improved parenting outcomes.

GENDER AND REPRODUCTIVE HEALTH

The actual percentage of mothers who manage to retain primary custody of the children has been reported with remarkably variable rates, with differences depending on the setting, research methods and sampling techniques used [57]. However, many women are able to rear a family successfully despite the presence of severe and enduring psychoses parents within any given diagnostic category can have parenting skills ranging from excellent to maltreating, and social factors inevitably impact on patients’ parenting capabilities. Most clinical and research literature focuses on the potential adverse impact of the illness on the child, while neglecting the needs of the mother [62], even though addressing these needs could improve the ability of the mother to parent her child. These include the presence or absence of effective social support, poverty, domestic violence (which is more commonly experienced by women with severe mental disorders than women in the general population) and other sources of stress, including any special needs of the child. Recent UK policy has tried to address the fact that women with mental illness are often mothers [63,64] but the complex needs of this group remain frequently unaddressed [65], and in many cases the parenting status of mental health patients is not even recorded in case notes [66]. The trauma of hospitalization is a major concern for mothers with severe mental disorder [67] as mothers often feel that inpatient units are inappropriate places for children to visit them [67]. However, treatment at home by intensive home treatment teams during acute exacerbations of illness can also be difficult for these families as the needs of the children are difficult to meet [68]. Such issues can lead to delays in contacting services, with the subsequent risk of worse outcomes. Concerns about stigma can also prevent mothers with mental illness from talking openly about the

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325

difficulties they experience [67,69], and leads to fear that people will treat them and their children differently if they know about their mental illness [66]. Parents who have gone through a divorce often report having their diagnosis used against them while fighting for custody in the courts [70]. We do not know if parents with a severe mental illness such as schizophrenia are discriminated against in such cases but stigmatizing attitudes, knowledge and behaviours are found in health and social care professionals as well as the general public [69]. Research is needed to establish whether the child protection system carries out discriminatory practices as a result of inaccurate knowledge and beliefs. The pain of losing custody of a child can be severe and lifelong. One qualitative study involving focus groups of mothers with severe mental illness and professionals reported that a mother described the effect as ‘my heart is in chains . . . the pain never completely goes away’ [71]. The trauma of losing custody of a child or the perceived threat of this occurring is likely to exacerbate symptoms, and professionals find it painful and difficult to support these women [72]. The most recent UK Confidential Enquiry into Maternal Deaths highlighted an apparent greater risk of women’s deaths following child protection conferences [44]. As some have pointed out, outcomes for parents with mental illness who cannot care for their children, temporarily or potentially permanently, could be improved by rethinking services [73]. For example, the provision of familyorientated supported housing that provides space for children to visit would make parents more likely to accept rehabilitative support [73]. By addressing losses experienced by parents who lose custody of children, clinicians may help the parents prevent ‘replacing the children’ repeatedly, with inevitable multiple losses as a result.

DOMESTIC VIOLENCE

There is increasing recognition of the high frequency of violence against women and its profound effects on mental health, particularly during the reproductive period. A systematic review by Gazmararian et al. [74] found that violence during pregnancy occurs

in up to 20% of women [74]. Domestic violence is associated with depression, anxiety disorders, posttraumatic stress disorder, substance misuse and suicidality [75], and exacerbation of psychotic symptoms [76]. Domestic violence often starts or increases

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in severity during pregnancy and there is increasing awareness of the impact of domestic violence on poor health outcomes for the mother and adverse developmental outcomes for the child [77]. Women with severe

25.5

mental disorders are at a higher risk of domestic violence [78], possibly due to social and cognitive deficits secondary to the illness, which makes it more difficult to negotiate or avoid dangerous situations [79].

THE LEGAL AND PSYCHIATRIC RESPONSE TO INFANTICIDE

Infanticide (the killing of an infant at or soon after birth) and neonatacide (the killing of a neonate within the first 24 hours of birth) in many countries is seen as a separate category from other forms of child killing Oberman [80] has estimated that specific statutes governing infanticide occur in 29 countries. In the UK, the British Infanticide Act 1938 defined a separate category for women who kill their infant as a consequence of a disturbance in the balance of mind from the effects of childbirth and lactation. The degree of abnormality of mind in these cases is less than that needed to prove psychiatric abnormality in most insanity defences and provides for diminished responsibility of mothers

25.6

during a vulnerable time. A review of the types of mental disorders associated with infanticide is beyond the scope of this chapter, but for further details see the discussion by Spinelli [81]. Some societies, e.g. the United States of America, have not adopted such a medical model for understanding infanticide, and this has led to high-profile cases of women with severe mental disorders who have killed their infants being incarcerated in prison [81]. This presumably reflects, in general, differing cultural attitudes towards murder and, in particular, attitudes towards infanticide, the issue of diminished responsibility and the conceptualization of perinatal disorders.

CLASSIFICATION OF PERINATAL MENTAL DISORDERS

There has been considerable debate on the classification of perinatal mental disorders, and inevitably psychiatric classifications reflect prevailing causal models and clinical and research priorities. The current ICD and DSM classifications provide a postpartum onset specifier rather than categorizing perinatal mental disorders separately. ICD-10 recommends the use of postpartum categories only when they do not meet criteria for disorders classified elsewhere. This failure to classify perinatal disorders separately probably partly contributes to the relative paucity of specific services for these

25.7

patients [54,82] and of research in this area. On the one hand, similar risk factors are associated with mental disorders during the reproductive period as at other times in life, but there is a clear increase in risk of psychosis during the early postnatal period. The implications of a mental disorder during the reproductive period are profound. The decision on the classification of perinatal disorders by the ICD11 and DSM-V expert groups will be an interesting reflection on whether perinatal mental disorders are again seen as relatively minor or disorders of primary importance.

FATHERS AND MENTAL DISORDERS

Women with severe mental disorders are more likely than men to have children [83] and this is partly why there is a dearth of research on fathers with mental disorders. There is far less known about the prevalence of parenthood among fathers with mental illness, predictors of their ability to parent, and their health

and social care needs. However, recent epidemiological research has confirmed that the increased risk of severe mental disorders found in mothers in the postnatal period is not found in fathers [51]. However, and not surprisingly, social factors impact on paternal mental health lone fathers are more likely to have

GENDER AND REPRODUCTIVE HEALTH

a common mental disorder than other men [84,85]. Paternal mental health problems are also associated with poorer child outcomes (e.g. see References [86,87]). Fathers with severe mental illness are more likely than other men with severe mental disorders to be or have been married and live in noninstitutionalized settings [88]. They are perceived by clinicians to be in greater need of parenting skills training

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than mothers with severe mental illness [88], but clinicians often admit to knowing less about fathers and fathers’ needs than mothers. There is also little literature on how the stigma of mental illness affects fathers, or how society and services respond to the needs of fathers with severe mental illness. This neglected area urgently needs more research and clinical attention.

CONCLUSION

Women, particularly pregnant women and mothers, are at increased risk of mental health problems during the reproductive period, whereas men do not experience such an increased risk. Women are more likely than men to be parents, but social factors can impact on the mental health of both mothers and fathers. Societal and cultural factors have a profound impact on mental health in the reproductive period, by increasing the risk of mental health problems, influencing the legal processes associated with terminations of pregnancy and infanticide, and leading to stigma, which is associated with inequities in accessing services and maternal and child outcomes. Mental health problems in pregnant women, mothers and fathers therefore cannot be addressed without a clear understanding of the role of social factors in their development and how social factors impact on the response by professionals and wider society to mental health problems in the reproductive period.

REFERENCES 1. Leff, J. (1991) The evaluation of reprovision for psy chiatric hospitals, in Social Psychiatry, Theory, Meth odology and Practice (ed P. Bebbington), Transaction Publishers, New Jersey, pp. 247 264. 2. Apfel, R. J. and Handel, M. H. (1993) Madness and Loss of Motherhood, American Psychiatric Press, Washing ton, DC. 3. World Health Organization (2000) Women’s Mental Health: An Evidence Based Review on Mental Health Determinants and Population, Department of Mental Health and Substance Dependence, WHO, Geneva.

4. Department of Health (2004) Abortion Statistics, England and Wales, 2003. Department of Health. 5. Fergusson, D. M., Horwood, L. J. and Boden, J. M. (2008) Abortion and mental health disorders: evidence from a 30 year longitudinal study. British Journal of Psychiatry, 193, 444 451. 6. Curfman, G. D., Morrissey, S., Greene, M. and Drazen, J. M. (2008) Physicians and the first amendment. New England Journal of Medicine, 359, 23. 7. Lazzarini, Z. (2008) South Dakota’s abortion script threatening the physician patient relationship. New England Journal of Medicine, 359, 2189 2191. 8. Reardon, D. C. and Cougle, J. R. (2002) Depression and unintended pregnancy in the National Longi tudinal Survey of Youth: a cohort study. British Medical Journal (Clinical Research Edition), 324, 151 152. 9. American Psychological Association (2008) Report of the APA Task Force on Mental Health and Abortion. 10. Charles, V. E., Polis, C. B., Sridhara, S. K. and Blum, R. W. (2008) Abortion and long term mental health out comes: a systematic review of the evidence. Contra ception, 78, 436 450. 11. Dingle, K., Alati, R., Clavarino, A. et al. (2008) Preg nancy loss and psychiatric disorders in young women: an Australian birth cohort study. British Journal of Psychiatry, 193, 455 460. 12. Oates, M., Jones, I. and Cantwell, R. (2008) Abortion: a psychiatric issue? Invited commentaries on . . . Abor tion and mental health disorders. British Journal of Psychiatry, 193, 453 454. 13. O’Keane, V., Marsh, M. and Seneviratne, G. (2006) Mental illness and pregnancy, in Psychiatric Disorders and Pregnancy, Taylor & Francis, Oxford. 14. Evans, J., Heron, J., Francomb, H. et al. (2001) Cohort study of depressed mood during pregnancy and after

328

15.

16.

17.

18.

19.

20.

21.

22.

23.

24.

25.

26.

SOCIAL CONSEQUENCES AND RESPONSES

childbirth. British Medical Journal (Clinical Research Edition), 323 (7307), 257 260. Gavin, N. I., Gaynes, B. N. and Lohr, K. N. et al. (2005) Perinatal depression: a systematic review of prevalence and incidence. Obstetrics and Gynaecology, 106, 1071 1083. Howard, L. M. and O’Keane, V. (2008) The needs of women with mental health problems during pregnancy and the postnatal period, in Camberwell Assessment of Need for Pregnant Women and Mothers with Severe Mental Illness, Royal College of Psychiatrists, London. O’Hara, M. W. and Swain, A. M. (1996) Rates and risk of postpartum depression a meta analysis. Interna tional Review of Psychiatry, 8, 37 54. Spinelli, M. G. (2006) Infanticide and child abuse, in Psychiatric Disorders and Pregnancy (eds V. O’Keane, M. Marsh and G. Seneviratne), Taylor & Francis, Oxford, pp. 53 69. Cooper, P. J. and Murray, L. (1998) Postnatal depres sion. British Medical Journal (Clinical Research Edi tion), 316, 1884 1886. Bernazzani, O., Saucier, J. F., David, H. and Borgeat, F. (1997) Psychosocial predictors of depressive sympto matology level in postpartum women. Journal of Affec tive Disorders, 46l, 39 49. O’Hara, M. W. (1986) Social support, life events, and depression during pregnancy and the puerperium. Archives of General Psychiatry, 43, 569 573. Brugha, T. S., Sharp, H. M., Cooper, S. A. et al. (1998) The Leicester 500 Project. Social support and the development of postnatal depressive symptoms, a pro spective cohort survey. Psychological Medicine, 28, 63 79. Stein, A., Cooper, P. J., Campbell, E. A. et al. (1989) Social adversity and perinatal complications: their relation to postnatal depression. British Medical Jour nal, 298, 1073 1074. O’Hara, M. W., Schlechte, J. A., Lewis, D. A. and Wright, E. J. (1991) Prospective study of postpartum blues: biologic and psychosocial factors. Archives of General Psychiatry, 48, 801 806. Mezey, G., Bacchus, L., Bewley, S. and White, S. (2005) Domestic violence, lifetime trauma and psy chological health of childbearing women. British Jour nal of Obstetrics and Gynaecology, 112, 197 204. Warner, R., Appleby, L., Whitton, A. and Faragher, B. (1996) Demographic and obstetric risk factors for

27.

28.

29.

30.

31. 32.

33.

34.

35.

36.

37.

38.

postnatal psychiatric morbidity. British Journal of Psy chiatry, 168, 607 611. Hipwell, A. E., Goossens, F. A., Melhuish, E. C. and Kumar, R. (2000) Severe maternal psychopathology and infant mother attachment. Development and Psy chopathology, 12, 157 175. Murray, L. (1992) The impact of postnatal depression on infant development. Journal of Child Psychology and Psychiatry, 33, 543 561. Cogill, S. R., Caplan, H. L., Alexandra, H. et al. (1986) Impact of maternal postnatal depression on cognitive development of young children. British Medical Jour nal, 292, 1165 1167. Whiffen, V. E. and Gotlib, I. H. (1989) Infants of postpartum depressed mothers: temperament and cog nitive status. Journal of Abnormal Psychology, 98, 274 279. Prince, M., Patel, V., Saxena, S. et al. (2007) No health without mental health. Lancet, 370 (9590), 859 877. N€aslund, B., Persson Blennow, I., McNeil, T. et al. (1984) Offspring of women with nonorganic psychosis: infant attachment to the mother at one year of age. Acta Psychiatrica Scandinavica, 69 (3), 231 241. Wan, M. W., Salmon, M. P., Riordan, D. M. et al. (2007) What predicts poor mother infant interaction in schizophrenia? Psychological Medicine, 37 (4), 537 546. O’Connor, T. G., Heron, J., Golding, J. et al. (2003) Maternal antenatal anxiety and behavioural/emotional problems in children: a test of a programming hypoth esis. Journal of Child Psychology and Psychiatry and Allied Disciplines, 44 (7), 1025 1036. Shakespeare, J. (2001) Evaluation of Screening Instru ments for Postnatal Depression Against the National Screening Committee Handbook Criteria, National Screening Committee. Howard, L. M. (2005) Fertility and pregnancy in women with psychotic disorders. European Journal of Obstetrics and Gynaecology and Reproductive Biol ogy, 119 (1), 3 10. Howard, L. M., Leese, M., Kumar, R. and Thornicroft, G. (2002) The general fertility rate in women with psychotic disorders. American Journal of Psychiatry, 159, 991 997. Howard, L. M., Kumar, R. and Thornicroft, G. (2001) Psychosocial characteristics and needs of mothers with psychotic disorders. British Journal of Psychiatry, 178, 427 432.

GENDER AND REPRODUCTIVE HEALTH

39. McGrath, J. J., Hearle, J. and Jenner, L. et al. (1999) The fertility and fecundity of patients with psychoses. Acta Psychiatrica Scandinavica, 99 (6), 441 446. 40. Bennedsen, R. E., Mortensen, P. B. and Olesen, A. V. (1999) Preterm birth and intra uterine growth retarda tion among children of women with schizophrenia. British Journal of Psychiatry, 175, 239 245. 41. Webb, R., Abel, K. and Pickles, A. et al. (2005) Mortality in offspring of parents with psychotic dis orders: a critical review and meta analysis. American Journal of Psychiatry, 162 (6), 1045. 42. Howard, L. M. and O’Keane, V. (2008) The needs of women with mental health problems during pregnancy and the postnatal period, in Camberwell Assessment of Need for Pregnant Women and Mothers with Severe Mental Illness, Royal College of Psychiatrists, London. 43. Austin, M. P., Kildea, S. and Sullivan, E. (2007) Maternal mortality and psychiatric morbidity in the perinatal period: challenges and opportunities for pre vention in the Australian setting. Medical Journal of Australia, 186 (7), 364 367. 44. Lewis, G. (2007) Saving Mothers’ Lives 2003 2005. Reviewing Maternal Deaths to Make Motherhood Safer, The Seventh Confidential Enquiry into Maternal Deaths, CEMACH. 45. North East London Strategic Health Authority (2003) Report of an Independent Inquiry into the Care and Treatment of Daksha Emson and Her Daughter Freya. 46. Kelly, R. H., Danielsen, B. H. and Zatrick, D. F. et al. (1999) Chart recorded psychiatric diagnoses in women giving birth in California in 1992. American Journal of Psychiatry, 156, 955 957. 47. Viguera, A. C., Nonacs, R. and Cohen, L. S. et al. (2000) Risk of recurrence of bipolar disorder in preg nant and nonpregnant women after discontinuing lithium maintenance. American Journal of Psychiatry, 157, 179 184. 48. Einarson, A., Selby, P. and Koren, G. (2001) Abrupt discontinuation of psychotropic drugs during preg nancy due to fears of teratogenic risk and the impact of counselling. Journal of Psychiatry and Neu roscience, 26 (1), 44 48. 49. Einarson, A., Schachtschneider, A. K., Halil, R. et al. (2005) SSRIs and other antidepressant use during pregnancy and potential neonatal adverse effects: impact of a public health advisory and subsequent reports in the news media. BMC Pregnancy Childbirth, 5, 11.

329

50. National Institute for Health and Clinical Excellence (NICE) (2007) Antenatal and Postnatal Mental Health, The British Psychological Society and Gaskell, London. 51. Munk Olsen, T., Laursen, T. M. and Pedersen, C. B. et al. (2006) New parents and mental disorders: a population based register study. Journal of the Amer ican Medical Association, 296, 2582 2589. 52. Seneviratne, G., Conroy, S. and Marks, M. (2001) Par enting assessment in a psychiatric mother and baby unit. Journal of Reproductive and Infant Psychology, 19, 274. 53. Howard, L. M. (2000) The separation of mothers and babies in the treatment of postpartum disorders in Britain 1900 1960. Archives of Women’s Mental Health, 3, 1 5. 54. Elkin,A.,Gilburt,H.,Gregoire,A.etal.(2008) Anational survey of psychiatric mother and baby units in England. Psychiatric Services, 60 (5), May, 629 633. 55. Joy, C. B. and Saylan, M. (2007) Mother and baby units for schizophrenia. Cochrane Database of Systematic Reviews, 1 (Art. No.: CD006333), DOI: 0.1002/ 14651858.CD006333. 56. Krumm, S. and Becker, T. (2006) Subjective views of motherhood in women with mental illness a socio logical perspective. Journal of Mental Health, 15 (4), 449 460. 57. Brockington, I. (1996) Motherhood and Mental Health, Oxford University Press, Oxford. 58. Howard, L. M., Thornicroft G., Salmon M. and Appleby L. (2004) Predictors of parenting outcome in women with psychotic disorders discharged from mother and baby units. Acta Psychiatrica Scandinavica, 110 (5), 347 355. 59. Kahng, S. K., Oyserman, D., Bybee, D. and Mowbray, C. (2008) Mothers with serious mental illness: when symptoms decline does parenting improve? Journal of Family Psychology, 22 (1), 162 166. 60. Belle, D. (1990) Poverty and women’s mental health. American Psychologist, 45, 385 389. 61. Elder, G. H., Eccles, J. S., Ardelt, M. and Lord, S. (1995) Inner city parents under economic pressure: perspectives on the strategies of parenting. Journal of Marriage and the Family, 57, 771 784. 62. Gopfert, M., Webster, J. and Seeman, M. V. (eds) (1996) Parental Psychiatric Disorder: Distressed Parents and Their Children, Cambridge University Press, Cambridge. 63. Department of Health (2002) Women’s Mental Health: Into the Mainstream: Strategic Development of Mental Health Care for Women.

330

SOCIAL CONSEQUENCES AND RESPONSES

64. Department of Health (2003) Mainstreaming Gender and Women’s Mental Health: Implementation Guidance. 65. Parker, G., Beresford, B., Clarke, S. et al. (2008) Research Reviews on Prevalence, Detection and Inter ventions in Parental Mental Health and Child Welfare: Summary Report, Working Paper SCIE 2256, Social Policy Research Unit and Centre for Reviews and Dissemination, University of York. 66. Howard, L.M. (2000) Psychotic disorders and parent ing the relevance of patients’ children for general adult psychiatry services. Psychiatric Bulletin, 24, 324 326. 67. Diaz Caneja, A. and Johnson, S. (2004) The views and experiences of severely mentally ill mothers a qua litative study. Social Psychiatry and Psychiatric Epi demiology, 39 (6), 472 482. 68. Khalife, H., Murgatroyd, C., Freeman, M. et al. (2009) Home treatment as an alternative to hospital admission for mothers in a mental health crisis: a qualitative study. Psychiatric Services, 60 (5), May, 634 639. 69. Thornicroft, G. (2006) Shunned, in Discrimination Against People with Mental Illness, Oxford University Press, Oxford. 70. Ackerson, B. J. (2003) Coping with the dual demands of severe mental illness and parenting: the parent’s per spective. Families in Society: The Journal of Contem porary Human Services, 84 (1), 109 118. 71. Nicholson, J., Sweeney, E. M. and Geller, J. L. (1998) Mothers with mental illness: I. The competing demands of parenting and living with mental illness. Psychiatric Services, 49 (5), 635 642. 72. Nicholson, J., Sweeney, E. M. and Geller, J. L. (1998) Mothers with mental illness: II. Family relationships and the context of parenting. Psychiatric Services, 49 (5), 643 649. 73. Nicholson, J., Geller, J. L. and Fisher, W. H. (1996) ‘Sylvia Frumkin’ has a baby: a case study for policy makers. Psychiatric Services, 47, 497 501. 74. Gazmararian, J. A., Lazorick, S., Spitz, A. M. et al. (1996) Prevalence of violence against pregnant women. Journal of the American Medical Association, 275 (24), 1915 1920. 75. Golding, J. M. (1999) Intimate partner violence as a risk factor for mental disorders: a meta analysis. Journal of Family Violence, 183, 339. 76. Neria, Y., Bromet, E. J., Carlson, G. A. and Naz, B. (2005) Assaultive trauma and illness course in psycho tic bipolar disorder: findings from the Suffolk County

77.

78.

79.

80.

81.

82.

83. 84.

85.

86.

87.

88.

Mental Health Project. Acta Psychiatrica Scandina vica, 111 (5), 380 383. Whitaker, R. C., Orzol, S. M. and Kahn, R. S. (2006) Maternal mental health, substance use, and domestic violence in the year after delivery and subsequent behavior problems in children at age 3 years. Archives of General Psychiatry, 63 (5), 551 560. Friedman, S. H. and Loue, S. (2007) Incidence and prevalence of intimate partner violence by and against women with severe mental illness. Journal of Women’s Health, 16 (4), 471 480. McPherson, M. D., Delva, J. and Cranford, J. (2007) A longtitudinal investigation of intimate partner violence among mothers with mental illness. Psychiatric Ser vices, 58 (5), 675 679. Oberman, M. (1996) Mothers who kill: coming to terms with modern American infanticide. American Criminal Law Review, 34, 1 110. Spinelli, M. G. (2004) Maternal infanticide associated with mental illness: prevention and the promise of saved lives. American Journal of Psychiatry, 161, 1548 1557. Wisner, K. L., Parry, B. L. and Piontek, C. M. (2002) Clinical practice. Postpartum depression. New England Journal of Medicine, 347 (3), 194 199. Grube, M. and Dorn, A. (2007) Parenthood and mental illness. Psychiatrische Prax, 34 (2), 66 71. Cooper, C., Bebbington, P. E. and Meltzer, H. et al. (2008) Depression and common mental disorders in lone parents: results of the 2000 National Psychiatric Morbidity Survey. Psychological Medicine, 38 (3), 335 342. DeKlyen, M., Brooks Gunn, J., McLanahan, S. and Knab, J. (2006) The mental health of married, cohabit ing, and non coresident parents with infants. American Journal of Public Health, 96 (10), 1836 1841. Phares, V. and Compas, B. E. (1992) The role offathers in child and adolescent psychopathology: make room for Daddy. Psychological Bulletin, 111, 387 412. Ramchandani, P. G., Stein, A., O’Connor, T. G. et al. (2008) Depression in men in the postnatal period and later child psychopathology: a population cohort study. Journal of the American Academy of Child and Ado lescent Psychiatry, 47 (4), 390 398. Nicholson, J., Nason, M. W., Calabresi, A. O. and Yando, R. (1999) Fathers with severe mental illness: characteristics and comparisons. American Journal of Orthopsychiatry, 69 (1), 134 141.

26 Stigma and discrimination Graham Thornicroft,1 Nisha Mehta,2 Elaine Brohan1 and Aliya Kassam1 1

Health Service and Population Research Department, Institute of Psychiatry, King' s College London, London, UK School of Medicine, King' s College London, London, UK

2

26.1

INTRODUCTION

Stigma (plural stigmata) was originally used to refer to anindelible dot leftonthe skin after stingingwith a sharp instrument, sometimes used to identify vagabonds or slaves [1 4]. Recently stigma has come to mean ‘any

26.2

UNDERSTANDING STIGMA

There is now a voluminous literature on stigma [5,8 19]. The most complete model of the component processes of stigmatization has four key components [20], which are: (i) labelling, in which personal characteristics are signalled or noticed as conveying an important difference; (ii) stereotyping, which is the linkage of these differences to undesirable characteristics; (iii) separating, the categorical dis-

26.3

attribute, trait or disorder that marks an individual as being unacceptably different from the “normal” people with whom he or she routinely interacts, and that elicits some form of community sanction’ [5 7].

tinction between the mainstream/normal group and the labelled group as in some respects fundamentally different; (iv) status loss and discrimination: devaluing, rejecting, and excluding the labelled group. Interestingly, more recently the authors of this model have added a revision to include the emotional reactions that may accompany each of these stages [21,22].

SHORTCOMINGS OF WORK ON STIGMA

Five key features have limited the usefulness of stigma theories. First, while these processes are undoubtedly complex, academic writings on stigma (which in the field of mental health have almost entirely focused

upon schizophrenia) have made relatively few connections with legislation concerning disability rights policy [23] or clinical practice. Second, most work on mental illness and stigma has been

Principles of Social Psychiatry, second edition Edited by Craig Morgan and Dinesh Bhugra Ó 2010 John Wiley & Sons, Ltd.

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descriptive, overwhelmingly describing attitude surveys or the portrayal of mental illness by the media. Very little is known about effective interventions to reduce stigma. Third, there have been notably few direct contributions to this literature by service users [24]. Fourth, there has been an underlying pessimism that stigma is deeply historically rooted and difficult to change. This has been one of the reasons for the reluctance to use the results of research in designing and implementing action plans. Fifth, stigma theories have de-emphasized cultural factors and paid little attention to the issues related to human rights and social structures. Stigma can be seen as an overarching term including three elements: .

problems of knowledge (ignorance or misinformation);

.

problems of attitudes (prejudice);

.

problems of behaviour (discrimination) [6,20,25].

Stigma produces changes in feelings, attitudes and behaviour for both the person affected (lower selfesteem, poorer self-care and social withdrawal) and for family members [16,26 30]. In recent years there have been early signs of a developing focus upon discrimination. This can be seen as the behavioural consequences of stigma, which act to the disadvantage of people who are stigmatized [23,31 33]. The importance of discriminatory behaviour has been clear for many years in terms of the personal experiences of service users, in terms of devastating effects upon personal relationships, parenting and child care, education, training, work and housing [26]. Indeed, these voices have said that the rejecting behaviour of others may bring greater disadvantage than the primary condition itself. Generally consistent findings have emerged from assessing stigma in Africa [34], Asia [35], South America [36], in Islamic countries of North Africa and the Near East [37], and in Europe [14]. First, there are few countries, societies or cultures in which people with mental illness are considered to have the same value as people who do not have mental illness, as

shown, for example, in lower rates of financial investment in mental health services. Second, the quality of information that we have is relatively poor, with few comparative studies between countries or over time. Third, there are clear links between popular understandings of mental illness and whether people in mental distress seek help or feel able to disclose their problems [38]. The core experiences of shame (to oneself or to one’s family) and blame (from others) are common, although they vary to some extent between cultures. Where comparisons with other conditions have been made, mental illnesses are usually more stigmatized, and indeed this has been called the ‘ultimate stigma’ [9]. Finally, the behavioural consequences of stigma (rejection and avoidance) appear to be universal phenomena. Nevertheless, this literature says little about a core issue: how such processes affect the everyday lives of people with mental illness. Most research on stigma and mental illness consists of attitude surveys, investigating what people would do in imaginary situations or what they think ‘most people’ would do, for example, when faced with a neighbour or work colleague with mental illness. This work has emphasized what ‘normal’ people say rather than the actual experiences of people with mental illness themselves. It also assumes that such statements (usually on knowledge, attitudes or behavioural intentions) are linked with actual behaviour, rather than assessing such behaviour directly. In short, with some clear exceptions, this research has focused on hypothetical rather than real situations, shorn of emotions and feelings [39], divorced from context [40], indirectly rather than directly experienced and without clear implications for how to intervene to reduce social rejection [41]. In this context, discrimination is understood in this chapter to mean: ‘an unjust distinction in the treatment of different categories of people, especially on the grounds of race, sex, or age’. However, there is now a growing body of qualitative evidence that considers how mental health service users subjectively experience, describe and cope with stigma. This has allowed an enhanced understanding of: the scope and dimensions of stigma; the personal consequences of stigma; mental health service users’ views on antistigma campaign priorities; and the impact of stigma on the family, along with the development of related scales to measure stigma [42].

STIGMA AND DISCRIMINATION

Is it important to undertake research about stigma and discrimination? In short, yes, because it can lead to low rates of help-seeking, lack of access to care, undertreatment and material poverty, and to social marginalization [43]. These effects can be the consequences of experienced (actual) discrimination (e.g. being unreasonably rejected in a job application) or they can be the consequences of anticipated discrimination (e.g. when an individual does not apply for a

26.4

in public attitudes towards people with mental illness, as shown recently in New Zealand and Scotland [48,49]. In a campaign in Australia to increase knowledge about depression and its treatment, some states and territories received this intensive, coordinated programme, while others did not. In the former, people more often recognized the features of depression and were more likely to support help-seeking for depression or to accept treatment with counselling and medication [50]. Similarly, recent evidence comparing trends between Scotland and England in public attitudes towards people with mental illness are consistent with a positive effect of the Scottish ‘See Me’ antistigma campaign [51].

PREJUDICE: THE PROBLEM OF NEGATIVE ATTITUDES

Although the term ‘prejudice’ is used to refer to many social groups that experience disadvantage, e.g. minority ethnic groups, it is employed rarely in relation to people with mental illness. The reactions of a host majority to act with prejudice in rejecting a minority group usually involve not just negative thoughts but also emotion such as anxiety, anger, resentment, hostility, distaste or disgust. In fact, prejudice may more strongly predict discrimination

26.6

job because he or she fully expects to fail in any such application) [44]. This distinction between experienced and anticipated discrimination is closely related to what has been described as the difference between ‘enacted’ and ‘felt stigma’. ‘Enacted stigma’ refers to events of negative discrimination, while ‘felt stigma’ includes the experience of shame of having a condition and the fear of encountering ‘enacted stigma’ [45], and is associated with lower self-esteem.

IGNORANCE: THE PROBLEM OF KNOWLEDGE

While there is an unprecedented volume of information in the public domain, the level of accurate knowledge about mental illnesses (sometimes called ‘mental health literacy’) is meagre [46]. In a population survey in England, for example, most people (55%) believed that the statement ‘someone who cannot be held responsible for his or her own actions’ describes a person who is mentally ill [47]. Most (63%) thought that fewer than 10% of the population would experience a mental illness at some time in their lives. Interventions to improve public knowledge about depression can be successful, and can reduce the effects of stigmatization. At the national level, social marketing campaigns have produced positive changes

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333

than do stereotypes. Interestingly, there is almost nothing published about emotional reactions to people with mental illness apart from that which describes a fear of violence [52]. An example of such negative attitudes are the terms used by school students towards people with mental health problems, and in one English study, among 250 such terms used, none were positive and 70% were negative [53].

DISCRIMINATION: THE PROBLEM OF REJECTING AND AVOIDANT BEHAVIOUR

Surveys of attitude and social distance (unwillingness to have social contact) usually ask either students or members of the general public what they would do in

imaginary situations or what they think ‘most people’ who do, for example, when faced with a neighbour or work colleague with mental illness. Important lessons

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have flowed from these findings. This work has emphasized what ‘normal’ people say without exploring how people with mental illness experience the behaviour of normal people towards them. Further, it has been assumed that such statements (usually on knowledge, attitudes or behavioural intentions) are congruent with

26.7

actual behaviour, without assessing such behaviour directly. Such research has usually focused on hypothetical rather than real situations, neglecting emotions and the social context, thus producing very little guidance about interventions that could reduce social rejection. In short, most work on stigma has been beside the point.

GLOBAL PATTERNS OF STIGMA AND DISCRIMINATION

Do we know if discrimination varies between countries and cultures? The evidence here is stronger, but still frustratingly patchy [54]. Although studies on stigma and mental illness have been carried out in many countries, few have compared two or more places, and few have included non-Western nations [55]. In Africa, one study described attitudes to mentally ill people in rural sites in Ethiopia. Among almost 200 relatives of people with diagnoses of schizophrenia or mood disorders, 75% said that they had experienced stigma due to the presence of mental illness in the family, and a third (37%) wanted to conceal the fact that a relative was ill. Most family members (65%) said that praying was their preferred way of treating the condition [56]. Among the general population in Ethiopia schizophrenia was judged to be the most severe problem, and talkativeness, aggression and strange behaviour were rated as the most common symptoms of mental illness [34]. In South Africa [57,58], a survey was conducted of over 600 members of the public on their knowledge and attitudes towards people with mental illness [59]. Different vignettes, portraying depression, schizophrenia, panic disorder or substance misuse were presented to each person. Most thought that these conditions were either related to stress or to a lack of willpower, rather than seeing them as medical disorders [60]. Similar work in Turkey [61] and in Siberia and Mongolia [62] suggests that people in such countries may be more ready to consider the individual to be responsible for his or her mental illness and less willing to grant the benefits of the sick role. Most of the published work on stigma is by authors in the US and Canada [11,33,63,64], but there are also a few reports from elsewhere in the Americas and in the Caribbean [65]. In a review of studies from Argentina, Brazil, Dominica, Mexico and Nicaragua,

mainly from urban sites, a number of common themes emerged. The conditions most often rated as ‘mental illnesses’ were the psychotic disorders, especially schizophrenia. People with higher levels of education tended to have more favourable attitudes to people with mental illness. Alcoholism was considered to be the most common type of mental disorder. Most people thought that a health professional needs to be consulted by people with mental illnesses [36]. A great deal of work has studied the question of stigma towards mentally ill people in Asian countries and cultures [66 68]. Within China [69], a large-scale survey was undertaken of over 600 people with a diagnosis of schizophrenia and over 900 family members [70]. Over half of the family members said that stigma had had an important effect on them and their family, and levels of stigma were higher in urban areas and for people who were more highly educated. In the field of stigma research we find that schizophrenia is the primary focus of interest. It is remarkable that there are almost no studies, for example, on bipolar disorder and stigma. A comparison of attitudes to schizophrenia was undertaken in England and Hong Kong. As predicted, the Chinese respondents expressed more negative attitudes and beliefs about schizophrenia, and preferred a more social model to explain its causation. In both countries most participants, whatever their educational level, showed great ignorance about this condition [71]. This may be why most of the population in Hong Kong are very concerned about their mental health and hold rather negative views about mentally ill people [72]. Less favourable attitudes were common in those with less direct personal contact with people with mental illness (as in most Western studies), and by women (the opposite of what has been found in many Western reports) [73].

STIGMA AND DISCRIMINATION

Little research on stigma has been conducted in India. Among relatives of people with schizophrenia in Chennai (Madras) in Southern India, their main concerns were the effects on marital prospects, fear of rejection by neighbours and the need to hide the condition from others. Higher levels of stigma were reported by women and by younger people with the condition [74]. Women who have a mental illness appear to be at a particular disadvantage in India. If they are divorced, sometimes related to concerns about heredity [75], they often receive no financial support from their former husbands, and they and their families experience intense distress from the additional stigma of being separated or divorced [35]. In Japan, mental illnesses are seen to reflect a loss of control, and so are not subject to the force of willpower, both of which lead to a sense of shame [76 78]. Although it is tempting to generalize about the degree of stigma in different countries, reality may not allow such simplifications. A comparison of attitudes to mentally ill people in Japan and Bali, for example, showed that views towards people with schizophrenia were less favourable in Japan, but that people with depression and obsessive-compulsive disorder were seen to be less acceptable in Bali [79]. What different countries do often share is a high level of ignorance and misinformation about mental illnesses. A survey of teachers’ opinions in Japan and Taiwan showed that relatively few could describe the main features of schizophrenia with any accuracy. The general profile of knowledge, beliefs and attitudes was similar to that found in most Western countries, although the degree of social rejection was somewhat greater in Japan [80]. In a unique move aimed to reduce social rejection, the name for schizophrenia has been changed in Japan. Following a decade of pressure from family member groups, including Zenkaren, the name for this condition was changed from seishi buntetsu byo (split-mind disorder) to togo shiccho sho (loss of coordination disorder) [81,82]. The previous term went against the grain of traditional, culturally valued concepts of personal autonomy, as a result of which only 20% of people with this condition were told the diagnosis by their doctors [83 85]. There are indications from service users and family members that the new term

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is seen as less stigmatizing and is more often discussed openly. Little is written in the English language literature on stigma in Islamic communities, but despite earlier indications that the intensity of stigma may be relatively low [68], detailed studies indicate that, on balance, it is no less than we have seen described elsewhere [86 89]. A study of family members in Morocco found that 76% had no knowledge about the condition, and many considered it chronic (80%), handicapping (48%), incurable (39%) or linked with sorcery (25%). Most said that they had ‘hard lives’ because of the diagnosis [32]. Turning to religious authority figures is reported to be common in some Muslim countries [37,90]. Some studies have found that direct personal contact was not associated with more favourable attitudes to people with mental illness [91,92], especially where behaviour is seen to threaten the social fabric of the community [61,93]. A recent study used the Discrimination and Stigma Scale (DISC) in a cross-sectional survey in 27 countries using language-equivalent versions of the instrument in face-to-face interviews between research staff and 732 participants with a clinical diagnosis of schizophrenia [94]. The most frequently occurring areas of negative experienced discrimination were making or keeping friends (47%), discrimination by family members (43%), keeping a job (29%), finding a job (29%), and intimate or sexual relationships (29%). Positive experienced discrimination was rare. Anticipated discrimination was common for applying for work or training or education (64%) and looking for a close relationship (55%), and 72% felt the need to conceal the diagnosis. Anticipated discrimination occurred more often than experienced discrimination. This study suggests that rates of experienced discrimination are relatively high and consistent across countries. For two of the most important domains (work and personal relationships), anticipated discrimination occurs in the absence of experienced discrimination in over a third of participants. This has important implications: disability discrimination laws may not be effective without also developing interventions to reduce anticipated discrimination, e.g. by enhancing the self-esteem of people with mental illness, so that they will be more likely to apply for jobs.

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26.8

TAKING STOCK

What sense can we make of all these fragments of information? Several points are clear. First, there is no known country, society or culture in which people with mental illness are considered to have the same value and to be as acceptable as people who do not have mental illness. Second, the quality of information that we have is relatively poor, with very few comparative studies between countries or over time. Third, there do seem to be clear links between popular understandings of mental illness and whether people in mental distress want to seek help or feel able to disclose their problems [38]. The core experiences of shame (to oneself and for others) and blame (from others) are common everywhere stigma has been studied, but to differing extents. Where comparisons with other conditions have been made, then mental illnesses are more, or far more, stigmatized [95,96] as noted, mental illness may be the ‘ultimate stigma’ [9]. Finally, rejection and avoidance of people with mental illness appear to be universal phenomena. Prejudice and discrimination by the public against people with mental illness are therefore common, deeply socially damaging, and are a part of more widespread stigmatization. Stigma against people with mental illness can contribute to negative outcomes as well as perpetuating self-stigmatization and contributing to low self-esteem. With a growing awareness about such stigma, a number of recent

26.9

initiatives have been launched in the UK aiming to improve public attitudes. The Royal College of Psychiatrists’ ‘Changing Minds’ campaign in England ran between 1998 and 2003. It advertised websites, showed campaign videos in cinemas, distributed leaflets to the general public and health care professionals, and created reading material for young people for use in the curriculum [46,97,98]. The Scottish Governments ‘See Me’ campaign (2002 present) has a higher profile, is better funded and more extensive. It aims to deliver specific messages to the Scottish population by using all forms of media as well as cinema advertising, outdoor posters, supporting leaflets in GP surgeries, libraries, prisons, schools and youth groups. It also has a detailed website containing interactive resources and its impact is regularly monitored and progress reported in the public domain [49]. The investment of public funds in government campaigns is an important step and evidence suggesting that ‘See Me’ may have had a positive effect on attitudes in Scotland relative to England is encouraging [52]. However, it remains the case that addressing public ‘knowledge’ and ‘attitudes’, as discussed above, does not necessarily lead to a change in ‘behaviour’ and ‘discrimination’. This remains an elusive goal and further work is needed to understand the complex relationships between these three elements of stigma and to identify and develop evidence-based tools and interventions with which to tackle discrimination.

CONCLUSIONS

If we deliberately shift focus from stigma to discrimination, there are a number of distinct advantages. First, attention moves from attitudes to actual behaviour, not if an employer would hire a person with mental illness, but if he or she does. Second, interventions can be tried and tested to see if they change behaviour towards people with mental illness, without necessarily changing knowledge or feelings. The key candidates for active ingredients to reduce stigma are: (i) at the local level, direct social contact with people with mental illness [99 101] and (ii) at the national

level, social marketing techniques. Third, people who have a diagnosis of mental illness can expect to benefit from all the relevant antidiscrimination policies and laws in their country or jurisdiction, on a basis of parity with people with physical disabilities. Fourth, a discrimination perspective requires us to focus not upon the ‘stigmatized’ but upon the ‘stigmatizer’. In sum, this means sharpening our sights upon human rights, upon injustice and upon discrimination as actually experienced by people with mental illness [7,24,41,102].

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REFERENCES 1. Cannan, E. (1895) The stigma of pauperism. Economic Review, I, 380 391. 2. Thomas Hobbes of Malmesbury. Markes of the Absurd Geometry, Rural Language, Scottish Church Politics, and Barbarisms of John Wallis, Professor of Geometry and Doctor of Divinity, London. Printed for Andrew Cooke, 1657. 3. Gilman, S. L. (1982) Seeing the Insane, John Wiley & Sons, Inc., New York. 4. Gilman, S. L. (1985) Difference and Pathology: Stereotypes of Sexuality, Race and Madness, Cornell University Press, Ithaca, New York. 5. Goffman, I. (1963) Stigma: Notes on the Management of Spoiled Identity, Penguin Books, Harmondsworth, Middlesex. 6. Scambler, G. (1998) Stigma and disease: changing paradigms. Lancet, 352 (9133), 1054 1055. 7. Hinshaw, S. P. and Cicchetti, D. (2000) Stigma and mental disorder: conceptions of illness, public atti tudes, personal disclosure, and social policy. Devel opment and Psychopathology, 12 (4), 555 598. 8. Mason, T. (2001) Stigma and Social Exclusion in Healthcare, Routledge, London. 9. Falk, G. (2001) Stigma: How We Treat Outsiders, Prometheus Books, New York. 10. Heatherton, T. F., Kleck, R. E., Hebl, M. R. and Hull, J. G. (2003) The Social Psychology of Stigma, Guilford Press, New York. 11. Corrigan, P. (2005) On the Stigma of Mental Illness, American Psychological Association, Washington, DC. 12. Wahl, O.F. (1999) Telling Is a Risky Business: Mental Health Consumers Confront Stigma, Rutgers Univer sity Press, New Brunswick, New Jersey. 13. Pickenhagen, A. and Sartorius, N. (2002) The WPA Global Programme to Reduce Stigma and Discrimi nation because of Schizophrenia, World Psychiatric Association, Geneva. 14. Sartorius, N. and Schulze, H. (2005) Reducing the Stigma of Mental Illness: A Report from a Global Association, Cambridge University Press, Cambridge. 15. Hayward, P. and Bright, J. A. (1997) Stigma and mental illness: a review and critique. Journal of Mental Health, 6 (4), 345 354. 16. Link, B. G., Cullen, F. T., Struening, E. L. et al. (1989) A modified labeling theory approach in the area of

17.

18.

19. 20. 21.

22.

23.

24.

25. 26.

27.

28.

29.

30.

337

mental disorders: an empirical assessment. American Sociological Review, 54, 100 123. Link, B. G., Struening, E. L., Rahav, M. et al. (1997) On stigma and its consequences: evidence from a longitudinal study of men with dual diagnoses of mental illness and substance abuse. Journal of Health and Social Behavior, 38 (2), 177 190. Link, B. G., Phelan, J. C., Bresnahan, M. et al. (1999) Public conceptions of mental illness: labels, causes, dangerousness, and social distance. American Journal of Public Health, 89 (9), 1328 1333. Smith, M. (2002) Stigma. Advances in Psychiatric Treatment, 8, 317 325. Link, B. G. and Phelan, J. C. (2001) Conceptualizing stigma. Annual Review of Sociology, 27, 363 385. Link, B. G., Yang, L. H., Phelan, J. C. and Collins, P. Y. (2004) Measuring mental illness stigma. Schizophre nia Bulletin, 30 (3), 511 541. Jones, E., Farina, A., Hastorf, A. et al. (1984) Social Stigma: The Psychology of Marked to Relationships, W. H. Freeman & Co., New York. Sayce, L. (2000) From Psychiatric Patient to Citizen. Overcoming Discrimination and Social Exclusion, Palgrave, Basingstoke. Chamberlin, J. (2005) User/consumer involvement in mental health service delivery. Epidemiologia e Psi chiatria Sociale, 14 (1), 10 14. Hinshaw, S. (2007) The Mark of Shame, Oxford Uni versity Press, Oxford. Thornicroft, G. (2006) Shunned: Discrimination against People with Mental Illness, Oxford University Press, Oxford. Littlewood, R., Jadhav, S. and Ryder, A. G. (2007) A cross national study of the stigmatization of severe psychiatric illness: historical review, methodological considerations and development of the questionnaire. Transcultural Psychiatry, 44 (2), 171 202. Weiss, M. G., Jadhav, S., Raguram, R. et al. (2001) Psychiatric stigma across cultures: local validation in Bangalore and London. Anthropology and Medicine, 8, 71 87. Kadri, N., Manoudi, F., Berrada, S. and Moussaoui, D. (2004) Stigma impact on Moroccan families of patients with schizophrenia. Canadian Journal of Psychiatry, 49 (9), 625 629. Ritsher, J. B. and Phelan, J. C. (2004) Internalized stigma predicts erosion of morale among psychiatric outpatients. Psychiatry Research, 129 (3), 257 265.

338

SOCIAL CONSEQUENCES AND RESPONSES

31. Corrigan, P. W., Larson, J. E., Watson, A. C. et al. (2006) Solutions to discrimination in work and hous ing identified by people with mental illness. Journal of Nervous and Mental Disease, 194 (9), 716 718. 32. Angermeyer, M. C. and Matschinger, H. (2005) Labe ling stereotype discrimination. An investigation of the stigma process. Social Psychiatry and Psychiatric Epidemiology, 40 (5), 391 395. 33. Estroff, S. E., Penn, D. L. and Toporek, J. R. (2004) From stigma to discrimination: an analysis of com munity efforts to reduce the negative consequences of having a psychiatric disorder and label. Schizophrenia Bulletin, 30 (3), 493 509. 34. Alem, A., Jacobsson, L., Araya, M. et al. (1999) How are mental disorders seen and where is help sought in a rural Ethiopian community? A key informant study in Butajira, Ethiopia. Acta Psychiatrica Scandanavica Supplement, 397, 40 47. 35. Thara, R., Kamath, S. and Kumar, S. (2003) Women with schizophrenia and broken marriages doubly disadvantaged? Part II: family perspective. Interna tional Journal of Social Psychiatry, 49 (3), 233 240. 36. de Toledo Piza, P. E. and Blay, S. L. (2004) Community perception of mental disorders a systematic review of Latin American and Caribbean studies. Social Psy chiatry and Psychiatric Epidemiology, 39 (12), 955 961. 37. Al Krenawi, A., Graham, J. R., Dean, Y. Z. and Eltaiba, N. (2004) Cross national study of attitudes towards seeking professional help: Jordan, United Arab Emirates (UAE) and Arabs in Israel. Interna tional Journal of Social Psychiatry, 50 (2), 102 114. 38. Littlewood, R. (1998) Cultural variation in the stig matisation of mental illness. Lancet, 352 (9133), 1056 1057. 39. Crocker, J., Major, B. and Steele, C. (1998) Social stigma, in The Handbook of Social Psychology, 4th edn (eds D. Gilbert, S. T. Fiske and G. Lindzey), McGraw Hill, Boston, Massachusetts, pp. 504 533. 40. Corrigan, P. W., Markowitz, F. E. and Watson, A. C. (2004) Structural levels of mental illness stigma and discrimination. Schizophrenia Bulletin, 30 (3), 481 491. 41. Rose, D. (2001) Users’ Voices. The Perspectives of Mental Health Service Users on Community and Hospital Care, The Sainsbury Centre, London. 42. King, M., Dinos, S., Shaw, J. et al. (2007) The Stigma Scale: development of a standardised measure of the

43. 44.

45.

46.

47. 48.

49.

50.

51.

52.

53.

54.

stigma of mental illness. British Journal of Psychiatry, 190 (3), 248 254. Thornicroft, G. (2007) Most people with mental illness are not treated. Lancet, 370 (9590), 807 808. Rusch, N., Angermeyer, M. C. and Corrigan, P. W. (2005) The stigma of mental illness: concepts, forms, and consequences. Psychiatrische Praxis, 32 (5), 221 232. Jacoby, A. (1994) Felt versus enacted stigma: a con cept revisited. Evidence from a study of people with epilepsy in remission. Social Science and Med icine, 38 (2), 269 274. Crisp, A., Gelder, M. G., Goddard, E. and Meltzer, H. (2005) Stigmatization of people with mental illnesses: a follow up study within the Changing Minds cam paign of the Royal College of Psychiatrists. World Psychiatry, 4, 106 113. Department of Health (2003) Attitudes to Mental Ill ness 2003 Report. Department of Health, London. Vaughn, G. (2004) Like minds, like mine, in Mental Health Promotion: Case Studies from Countries (eds S. Saxena and P. Garrison), World Health Orga nization, Geneva, pp. 62 66. Dunion, L. and Gordon, L. (2005) Tackling the attitude problem. The achievements to date of Scotland’s ‘see me’ anti stigma campaign. Mental Health Today, 22 25. Jorm, A. F., Christensen, H. and Griffiths, K. M. (2005) The impact of beyond blue: the national depression initiative on the Australian public’s recognition of depression and beliefs about treatments. Australian and New Zealand Journal of Psychiatry, 39 (4), 248 254. Mehta, N., Kassam, A., Leese, M. et al. (2009) Public attitudes towards people with mental illness in Eng land and Scotland, 1994 2003. British Journal of Psychiatry, 194 (3), 278 284. Graves, R. E., Cassisi, J. E. and Penn, D. L. (2005) Psychophysiological evaluation of stigma towards schizophrenia. Schizophrenia Research, 76 (2 3), 317 327. Rose, D., Thornicroft, G., Pinfold, V. and Kassam, A. (2007) 250 labels used to stigmatise people with mental illness. BMC Health Services Research, 7, 97. Littlewood, R. (2004) Cultural and national aspects of stigmatisation, in Every Family in the Land (ed. A. H. Crisp), Royal Society of Medicine, London, pp. 14 17.

STIGMA AND DISCRIMINATION

55. Fabrega Jr, H. (1991) The culture and history of psychiatric stigma in early modern and modern Wes tern societies: a review of recent literature. Compre hensive Psychiatry, 32 (2), 97 119. 56. Shibre, T., Negash, A., Kullgren, G. et al. (2001) Perception of stigma among family members of indi viduals with schizophrenia and major affective dis orders in rural Ethiopia. Social Psychiatry and Psy chiatric Epidemiology, 36 (6), 299 303. 57. Stein, D. J., Wessels, C., Van Kradenberg, J. and Emsley, R. A. (1997) The Mental Health Information Centre of South Africa: a report of the first 500 calls. Central African Journal of Medicine, 43 (9), 244 246. 58. Minde, M. (1976) History of mental health services in South Africa. Part XIII. The National Council for Mental Health. South African Medical Journal, 50 (3F), 1452 1456. 59. Hugo, C. J., Boshoff, D. E., Traut, A. et al. (2003) Community attitudes toward and knowledge of mental illness in South Africa. Social Psychiatry and Psy chiatric Epidemiology, 38 (12), 715 719. 60. Cheetham, W. S. and Cheetham, R. J. (1976) Concepts of mental illness amongst the rural Xhosa people in South Africa. Australian and New Zealand Journal of Psychiatry, 10 (1), 39 45. 61. Ozmen, E., Ogel, K., Aker, T. et al. (2004) Public attitudes to depression in urban Turkey the influence of perceptions and causal attributions on social dis tance towards individuals suffering from depression. Social Psychiatry and Psychiatric Epidemiology, 39 (12), 1010 1016. 62. Dietrich, S., Beck, M., Bujantugs, B. et al. (2004) The relationship between public causal beliefs and social distance toward mentally ill people. Australian and New Zealand Journal of Psychiatry, 38 (5), 348 354. 63. Link, B. G., Yang, L. H., Phelan, J. C. and Collins, P. Y. (2004) Measuring mental illness stigma. Schizophre nia Bulletin, 30 (3), 511 541. 64. Corrigan, P., Thompson, V., Lambert, D. et al. (2003) Perceptions of discrimination among persons with serious mental illness. Psychiatric Services, 54 (8), 1105 1110. 65. Villares, C. and Sartorius, N. (2003) Challenging the stigma of schizophrenia. Revista Brasiliera Psiquia tria, 25, 1 2. 66. Ng, C. H. (1997) The stigma of mental illness in Asian cultures. Australian and New Zealand Journal of Psychiatry, 31 (3), 382 390.

339

67. Leong, F. T. and Lau, A. S. (2001) Barriers to providing effective mental health services to Asian Americans. Mental Health Services Research, 3 (4), 201 214. 68. FabregaJr, H. (1991) Psychiatric stigma in non Wes tern societies. Comprehensive Psychiatry, 32 (6), 534 551. 69. Kleinman, A. and Mechanic, D. (1979) Some observa tions of mental illness and its treatment in the People’s Republic of China. Journal of Nervous and Mental Disease, 167 (5), 267 274. 70. Phillips, M. R., Pearson, V., Li, F. et al. (2002) Stigma and expressed emotion: a study of people with schizo phrenia and their family members in China. British Journal of Psychiatry, 181, 488 493. 71. Furnham, A. and Chan, E. (2004) Lay theories of schizophrenia. A cross cultural comparison of British and Hong Kong Chinese attitudes, attributions and beliefs. Social Psychiatry and Psychiatric Epidemiol ogy, 39 (7), 543 552. 72. Chou, K. L., Mak, K. Y., Chung, P. K. and Ho, K. (1996) Attitudes towards mental patients in Hong Kong. International Journal of Social Psychiatry, 42 (3), 213 219. 73. Chung, K. F., Chen, E. Y. and Liu, C. S. (2001) University students’ attitudes towards mental patients and psychiatric treatment. International Journal of Social Psychiatry, 47 (2), 63 72. 74. Thara, R. and Srinivasan, T. N. (2000) How stigmatis ing is schizophrenia in India? International Journal of Social Psychiatry, 46 (2), 135 141. 75. Raguram, R., Raghu, T. M., Vounatsou, P. and Weiss, M. G. (2004) Schizophrenia and the cultural epidemiology of stigma in Bangalore, India. Journal of Nervous and Mental Disease, 192 (11), 734 744. 76. Desapriya, E. B. and Nobutada, I. (2002) Stigma of mental illness in Japan. Lancet, 359 (9320), 1866. 77. Hasui, C., Sakamoto, S., Suguira, B. and Kitamura, T. (2000) Stigmatization of mental illness in Japan: images and frequency of encounters with diagnostic categories of mental illness among medical and non medical university students. Journal of Psychiatry and Law, 28 (Summer), 253 266. 78. Sugiura, T., Sakamoto, S., Kijima, N. et al. (2000) Stigmatizing perception of mental illness by Japanese students: comparison of different psychiatric disor ders. Journal of Nervous and Mental Disease, 188 (4), 239 242.

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79. Kurihara, T., Kato, M., Sakamoto, S. et al. (2000) Public attitudes towards the mentally ill: a cross cultural study between Bali and Tokyo. Psychiatry and Clinical Neurosciences, 54 (5), 547 552. 80. Kurumatani, T., Ukawa, K., Kawaguchi, Y. et al. (2004) Teachers’ knowledge, beliefs and attitudes concerning schizophrenia a cross cultural approach in Japan and Taiwan. Social Psychiatry and Psychia tric Epidemiology, 39 (5), 402 409. 81. Desapriya, E. B. and Nobutada, I. (2002) Stigma of mental illness in Japan. Lancet, 359 (9320), 1866. 82. Takizawa, T. (1993) Patients and their families in Japanese mental health. New Directions in Mental Health Services, (60), 25 34. 83. Goto, M. (2003) Family psychoeducation in Japan. Seishin Shinkeigaku Zasshi, 105 (2), 243 247. 84. Kim, Y. and Berrios, G. E. (2001) Impact of the term schizophrenia on the culture of ideograph: the Japanese experience. Schizophrenia Bulletin, 27 (2), 181 185. 85. Mino, Y., Yasuda, N., Tsuda, T. and Shimodera, S. (2001) Effects of a one hour educational program on medical students’ attitudes to mental illness. Psy chiatry and Clinical Neurosciences, 55 (5), 501 507. 86. Karim, S., Saeed, K., Rana, M. H. et al. (2004) Pakistan mental health country profile. International Review of Psychiatry, 16 (1 2), 83 92. 87. Al Krenawi, A., Graham, J. R. and Kandah, J. (2000) Gendered utilization differences of mental health ser vices in Jordan. Community Mental Health Journal, 36 (5), 501 511. 88. Al Krenawi, A., Graham, J. R., Ophir, M. and Kandah, J. (2001) Ethnic and gender differences in mental health utilization: the case of Muslim Jordanian and Moroccan Jewish Israeli out patient psychiatric patients. Interna tional Journal of Social Psychiatry, 47 (3), 42 54. 89. Cinnirella, M. and Loewenthal, K.M. (1999) Religious and ethnic group influences on beliefs about mental illness: a qualitative interview study. British Journal of Medical Psychology, 72Pt (4), 505 524. 90. Loewenthal, K. M., Cinnirella, M., Evdoka, G. and Murphy, P. (2001) Faith conquers all? Beliefs about the role of religious factors in coping with depression among different cultural religious groups in the UK. British Journal of Medical Psychology, 74Pt (3), 293 303.

91. Arkar, H. and Eker, D. (1992) Influence of having a hospitalized mentally ill member in the family on atti tudes toward mental patients in Turkey. Social Psychia try and Psychiatric Epidemiology, 27 (3), 151 155. 92. Arkar, H. and Eker, D. (1994) Effect of psychiatric labels on attitudes toward mental illness in a Turkish sample. International Journal of Social Psychiatry, 40 (3), 205 213. 93. Coker, E. M. (2005) Selfhood and social distance: toward a cultural understanding of psychiatric stigma in Egypt. Social Science and Medicine, 61 (5), 920 930. 94. Thornicroft, G., Brohan, E., Rose, D. et al. (2008) Global pattern of anticipated and experienced discri mination against people with schizophrenia. Lancet, 373, 408 415. 95. Lai, Y. M., Hong, C. P. and Chee, C. Y. (2001) Stigma of mental illness. Singapore Medical Journal, 42 (3), 111 114. 96. Lee, S., Lee, M. T., Chiu, M. Y. and Kleinman, A. (2005) Experience of social stigma by people with schizophrenia in Hong Kong. British Journal of Psy chiatry, 186, 153 157. 97. Crisp, A. H., Cowan, L. and Hart, D. (2004) The College’s anti stigma campaign 1998 2003. Psychia tric Bulletin, 28, 133 136. 98. Crisp, A. (2004) Every Family in the Land: Under standing Prejudice and Discrimination Against Peo ple with Mental Illness, Royal Society of Medicine Press, London. 99. Link, B. G. and Cullen, F. T. (1986) Contact with the mentally ill and perceptions of how dangerous they are. Journal of Health and Social Behavior, 27 (4), 289 302. 100. Pinfold, V., Toulmin, H., Thornicroft, G. et al. (2003) Reducing psychiatric stigma and discrimination: eva luation of educational interventions in UK secondary schools. British Journal of Psychiatry, 182, 342 346. 101. Pinfold, V., Huxley, P., Thornicroft, G. et al. (2003) Reducing psychiatric stigma and discrimination evaluating an educational intervention with the police force in England. Social Psychiatry and Psychiatric Epidemiology, 38 (6), 337 344. 102. Kingdon, D., Jones, R. and Lonnqvist, J. (2004) Protect ing the human rights of peoplewith mental disorder: new recommendationsemergingfromtheCouncilofEurope. British Journal of Psychiatry, 185, 277 279.

27 Taking inequality's measure: poverty, displacement, unemployment and mental health Kim Hopper Nathan Kline Institute for Psychiatric Research and Mailman School of Public Health, Columbia University, New York, USA

When, in late eighteenth century Germany, Johann Peter Frank christened the ‘people’s misery’ as the ‘mother of disease’ he laid down the premise for much of the research into the social determinants of health that would follow in the next two centuries. What is not so evident in that formulation is the extent to which the people’s misery had become a social product, instead of simply the caprice of heaven operating through drought, crop failure, floods, war and plague. As the settled verities of a feudal world slowly unravelled, the social order of a nascent capitalist economy took shape. Labour became increasingly mobile, livelihood less certain, families more dispersed. Custom gave way to competition and the security of a manorbound peasantry yielded to the risky lot of the landless proletariat. Penury spread, the condition of the dependent poor grew more precarious and the informal institutions of local aid repeatedly proved unequal to the need. Once the work of virtue, charity became increasingly rationalized as the state took over the burden of social assistance. No longer unusual, destitution emerged ‘as a normal and not, as heretofore, an

abnormal element in social life’ [1]. Modernity domesticated poor relief, even as its industrial order created the swelling ranks of the wandering poor [2 6]. Novel configurations of disease and disorder were also among its mixed bequest. By the mid-nineteenth century, studies in ‘social medicine’ had begun to sketch what would eventually become coordinated analyses of the relations between the institutions and practices of social life and prevailing patterns of health and illness. By and large, this sprawling body of work has dealt with the varieties of hardship that are the predicament of the destitute: poor hygiene and housing; lack of food, clothing and fuel; uncertain, ill-paid and dangerous work or none at all; exposure to industrial and domestic hazards; pervasive stress, and the ever-present threats of debt and violence; along with a devil’s gamut of attendant ‘vicious habits’ [7 12]. However, hardiness and resiliency have also been part of that story. Just a century after Frank’s proposal for a ‘medical police’ (or, as we would have it, a public health authority) was made, Emile Durkheim put sociology on the map with his

Principles of Social Psychiatry, second edition Edited by Craig Morgan and Dinesh Bhugra Ó 2010 John Wiley & Sons, Ltd.

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study of Suicide (1897). The book is best known for Durkheim’s painstaking demonstration that the differential rates of this most private of acts are also ‘social facts’; that suicide’s uneven prevalence was a reflection of variation in the degree of integration and cohesiveness that exists in communities. Less well-known is his observation on the protective value of poverty. The poor, wrote Durkheim, are less susceptible to suicide because, ‘schooled’ to do without and disciplined by scarcity to want less, they are less liable to disappointment: ‘Poverty protects against suicide because it is a restraint in itself’ ([13], p. 254). Most analysts, as this chapter will rehearse, rightly persist in documenting and analysing the destructive effects of inequality and deprivation on well-being and mental health (e.g. see Reference [14]). However, there are those even today who are struck by ‘resourcefulness, resiliency and adaptation’ among even those who, by material standards, are very poor or experience substantial adversity [15 20], though the identified sources of that hardiness are often far cries from Durkheim’s throttled desire. In addition, while there are clear hazards moral, analytic and political to overemphasizing the durable ‘agency’ of the poor, recent attempts at reframing poverty (e.g. see References [21] to [26]) make it clear that a purely structural account will be a partial one. By the same token, analyses of social determinants of health that neglect the ‘pathologies of power’ written into the embedded interests and established practices that sort risk and resources in mortality’s roulette [27] will badly misrepresent the social machinery of health. Two cautionary notes are in order before reviewing the evidence of poverty’s toll. The first deals with epoch. Modernity is the name given to that vertiginous period when tradition’s hold gave way and familiar forms of livelihood and community slowly eroded, when it seemed ‘everything solid melts into air’ even as an ‘iron cage’ of rationality displaced long-standing canons of justification and meaning. Along with technical progress, economic expansion, productive power and population growth, modernity laid down fresh contours of inequality. With the notable additions of gender, race/ethnicity, sometimes culture and lately disability, the original axes

of distinction class, status and power identified by modernity’s theorists (Marx and Weber especially), have proven remarkably durable. They continue to provide useful analytic distinctions (e.g. see Reference [28]). That said, most of the research to be reported on here was conducted during (or just after) the last quarter-century of the twentieth century, precisely the period during which modernity’s late category-bending, boundary-breaking, time/spacecompressing incarnation globalization came of age [29 33]. (Even before globalization’s ascent, some questioned the claim that modernity imposed clear boundaries between realms of living and compartmentalized domains of experience, Latour [34] prominent among them.) That temporal coincidence is awkward for our purposes, because the impact of globalization is likely to register in ways that will substantially rework the documentary record reviewed here. Globalization seems well on its way to redrawing the contours of inequality and the contexts of disadvantage, even as it reworks social ledgers of comparison [35,36]. Capital flight and outsourcing have greatly expanded the compass of competition. Within developed economies, too, job holdings may ‘churn’ even as gross employment rates remain high, adding uncertainty and insecurity to work [37]. Ever more fluid and transient positions of belonging and citizenship, of measuring up and making out, may make the project of identity of locating oneself as a person of consequence, within a place and among a people reliably regarded as home increasingly problematic [38 41]. Throughout this unsettled terrain, lasting states of dislocation and uncertainty are remaking the landscape of psychiatric risk and replotting the course of subsequent disorder. Nowhere is this clearer than in the epidemiologically emblematic figure of the secondgeneration migrant [42]. The second cautionary note has to do with language. Easy recourse to such keystone nouns as poverty and disorder has also become problematic: the first, because research on both international and domestic fronts has repeatedly demonstrated the insufficiencies of income-based measures alone (see, for example, the UN’s Human Development Reports); the second, not only because enquiry into the toll of disadvantage extends beyond the bounds of formal diagnoses [43],

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but also because the terrain of unmet need for psychiatric care remains poorly mapped. In low-income countries especially, this is due to scarce resources, multiple therapeutic options and persistent stigma (see, for example, the Lancet series on global mental health [44]). Even in more affluent economies, the delay between apparent need (or reported distress) and initiating treatment contact remains substantial [45]. Help-seeking is a social process, not a private decision, managed by the networks (intimate and less so) in which people are embedded at the time of crisis [46]. Initial resolve to seek alternative explanation and

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correctives, unwillingness to face the prospect of living with mental illness, not knowing where to turn for help or what to expect, ease of access, reassuring lay counsel or clergy support, anticipatory stigma all of these probably play a role in what is often, in practice, a process of muddling through [47 51]. Therefore, if the initial advisory above alerts the reader to the provisional character of the empirical record assembled here, this second caution is meant to suggest that even the categories used to organize, parse and take stock of that record may well be headed for substantial revision.

RECLAIMING THE SOCIAL

Once prevalent, then long stranded on the outskirts of a psychiatry dominated by neuroscience and genetics, an interest in how social arrangements may shape the rates and prospects of mental disorder has shown resurgence of late. Two distinct phases can be identified. An earlier search for psychosis-free zones of civilization having been discredited and largely abandoned, postwar psychiatry found fresh cause for optimism in community-based mental health instead, seeking ‘psychosocial’ factors that would influence course and outcome and charting the commodious landscape of ‘stress’ [52] (So commodious, indeed, that on the service side a few discordant voices worried about mission creep, a vaguely defined ‘community psychiatry’ charged with the mundane anxieties and difficulties of the everyday (e.g. see Reference [53]).) Cross-cultural epidemiology was surely part of what prompted this call to look beyond diagnosis for determinants of prognosis [54 60]. But on the homefront in Europe and the US, deinstitutionalization was the historical provocation. Once returned to society, no longer confined to specialpurpose ‘abeyance mechanisms’ conveniently located elsewhere [61], the lives of former inmates (and, more pressing still, those who would henceforth be spared long-term hospitalization) became the stuff of policy decisions, both deliberate and inadvertent. Politics, markets and social science crowded a stage once owned by asylum superintendents. The consequences of those decisions, intended and unforeseen (and the interests, assumptions and intentions behind them),

were opened to public scrutiny in ways that life inside the state hospitals had never been [62 65]. Much of that scrutiny proved unsparing and critical. Users of services provided first-person accounts of living with severe mental illness, ‘reframing’ takenfor-granted assumptions of need and care as rankling issues of power and control [66 69]. Progressive elements in psychiatric rehabilitation raised the bar on aspiration, even as they came to question their own paternalism, and a once-distinctive public health concern with social justice [70] elbowed its way into discussions of mental health policy that went well beyond formal medicolegal issues of confinement. What had been largely symbolic protests against misrecognition the stain and sequelae of stigma found its neomaterial voice [71]. Like its counterpart in the social determinants of health literature, the record subsequently compiled makes for sobering reading. Poverty traps people in dead-end prospects, lowers quality of life, shadows efforts to reclaim moral standing, complicates social life, contributes to poor course of illness and bulks large as a major impediment to recovery from severe mental illness: these are the recurrent themes in contemporary attempts to take the measure of lives marked by psychosis [72 77]. Where close documentation of everyday lives allows, ingenuity and resiliency may also appear in that picture (e.g. see References [78] and [79]). However, epidemiology’s charge is not simply to track and assess the consequences of declared public

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policy. As the early chroniclers of modernity taught us, inequality’s reach is deeper and subtler. That inequality may be implicated insidiously and cumulatively, as well as abruptly and spectacularly in the aetiology (not merely the course) of psychiatric disorder is the more ambitious claim of a resurgent social psychiatry. Indeed, the notion that certain species of disadvantage (especially when severe and/or durable) should occasion vulnerability, distress, ill-adaptive compensatory behaviour and overt breakdown, and do so in ways that comparative analysis should be able to detect and interrogate, has long been a founding article of faith in that project. After too long a moratorium, renewed activity (even a ‘renaissance’) is clearly under way [80,81] as the limits of a narrowly biomedical approach are reassessed [82]. Social psychiatry echoes (even as it seems largely uninformed by, but see References [83] and [84]) the larger, better established enquiry into the ‘fundamental’ social causes of health and illness, as well as that enterprise’s contentious debate over mechanisms of influence [28,85 89]. In the new social psychiatry, no matter how finely calibrated at the individual level, ‘risk’ must be embedded in appropriate social/cultural matrices as well [90]. ‘Macro-level’ variables not only help shape the sort of people individuals become, but also constrain the range (and bias the inclinations) of their choices. ‘Neighbourhood effects’, for example,

27.2

need to be unpacked when attempting to track the impact over time of spatial concentrations of poverty and other forms of disadvantage associated with it [91]. Doing so may raise tricky conceptual and methodological issues [92,93], but the promise is a heady one: instead of banishing environments to the distal and given ‘the realm of the invariant and potentially confounding’ ([94], p. 44) it enlists context as an active ingredient in the social structuring of risk. Like Durkheim before it, the new social psychiatry seeks to understand not only how external constraints limit choice and opportunity but also how they become embodied as distinctive physiological variant, interpretive schema, and native bent [95]. It asks, to borrow from another sociologist, how local worlds shape a distinctive habitus [96] and how that changes over the life course [97]. Simultaneously reflective of this larger epidemiological project to reclaim context and to rethink how it works as a creative process and established condition (e.g. [98]), and emblematic of public health’s turn to the social sciences for framing theory, analytic tools and investigative methods (e.g. see References [28] and [99]), the reclamation of the social in psychiatry began with its own version of the longstanding social gradient in mortality [11] the durable association of psychiatric disorder with socioeconomic status.

SOCIAL CLASS AND LIFE STRESS: THE CHARACTER OF DANGER REVISITED

It may have lagged behind infectious and chronic diseases [100], but an epidemiology of mental disorders was recognizably social from the start. Beginning in the early twentieth century, field reports documented variations in onset and course of psychosis across classes and cultures, tribes and times, the sacred and the secular [60,101 105]. Arduous ‘community prevalence’ studies charted clinically na€ıve psychiatric ailments in far-flung European communities [106]. Ecological studies mapped zones of urban instability against rates of mental illness, on the rationale that pathologies of place might find repercussion in disorders of mind [107]. A long-standing, if minority, clinical interest in the everyday challenges that patients wrestled with typified in Adolf

Meyer’s practice of charting a person’s ‘story’ through use of a ‘life chart’ (see Reference [108], 418ff.) also kept social psychiatry from too comfortable a home in medicine. The analytic move to causal inference in the second half of the twentieth century, however, began by shamelessly borrowing from biology. Hans Selye’s protean notion of stress (or ‘general adaptation syndrome’of 1936 [109] and 1956 [110]), along with the dynamic understanding of organism environment fit captured by the term adaptation (e.g. see Reference [111]), were imported to put the social psychiatric enterprise on firm physiological footing. In this way, researchers contrived to give an otherwise alien explanatory model a measure of face-validity and legitimacy. Stress provided

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an empirically plausible mechanism, a way of grounding otherwise free-floating social science theorizing. (The same hybridizing move can be seen, nearly a half-century later, in invocations of ‘social defeat’ and ‘costly signalling’ both constructs stemming from ethological studies to explain elevated rates of psychosis among second-generation migrants [112] and refusal of services on the part of psychiatrically disabled homeless women [113], respectively.) For social science the shift from sociology to epidemiology entailed a double transformation. Social position had first to be converted into differential risk. Markers of distinction or disadvantage (class, status, gender, race/ethnicity, religion) had to be shown to be reliable guides to a greater or lesser likelihood of adverse health outcomes. Theoretically driven, descriptive epidemiology often sufficed to demonstrate such discrepancies. The second, more difficult, task involves both documentation and explanation: to elucidate how unevenly distributed risks become actualized in the lives of social agents in ways that plausibly dispose them to psychiatric distress and disorder. Here, hypothesis-driven research design and increasingly refined statistical techniques of causal inference played important roles. (A host of measurement and definition problems, as we will see, would have to be solved as well.) From the start, then, the ‘social’ in psychiatric epidemiology took in Durkheim’s concern with threats to order and integration, Weber’s insistence that ‘life chances’ constrained life choices and Marx’s obsession with durable structures of inequality. The upshot, latent in the uneasy kinship between deviance and pathology [114] and underlying persistent concerns with diagnosis and confinement as a means of social control (e.g. see References [115] to [117]), was a tense, Janus-faced legacy: on the one hand, seeking psychiatric counterparts to grim bills of mortality that consistently disfavoured the poor [11]; on the other, ever alert to the misuse of ‘medicalized’ rationales for what were actually police or judicial actions. If the first found common cause with the larger struggle for health equity [118], the second would resonate with user accounts of mistreatment. Our concern here is the link to social determinants of health. As Leighton and colleagues noted [104], Rudolph Virchow’s insistence that pathology developed when ordinary life-

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sustaining processes were subjected to extraordinary demands this is how they acquire ‘the character of danger’ also meant that clinically informed corrective measures would move from the clinic to the community. Medicine, Virchow argued, would have to be a ‘social science’. Stress proved the versatile mechanism needed to accommodate multiple parsings of the social field. Occupational structures were deconstructed and reconfigured, shifting relationships examined, role conflicts and ‘status incongruities’ unpacked, hierarchies decoded and eventfulness docketed. Various buffering agents (social analogues to host resistance) had to be factored in as well, because the impact of the same event could be variable depending upon coping and support resources. Compounding matters further, the varieties of distress occasioned by initial stressors could serve as secondary provocations in their own right. However, such complexities lay well down the postwar research road. In the beginning, there was simply a list: an early, hugely influential effort to itemize and rank ‘life events’. Holmes and Rahe’s ‘Schedule of Recent Experiences’ (1967) standardized the inventory of such events and made it economical and efficient [119]. (It could be self-administered or made part of a brief interview.) Their work would spawn a small industry of derivative studies, attempting to sort out the valence, magnitude, impact and source of life events, to winnow (e.g. subtracting ‘wife begins work’ or ‘family member added’) or enlarge the catalogue itself (e.g. adding losing custody of children, experiencing discrimination or homelessness) and to assess various resources and coping strategies that buffered their effects (e.g. see References [120] and [121]). Research soon revealed that it was negative life events that were harmful [122 126], particularly events that were ‘fateful’ [127] or ‘unscheduled’ [128]. Culturally scripted transitions built into the life course, even if momentous and daunting, would seem not at issue, but in late modern societies ‘transitions’ themselves were becoming less well marked and scripted [129] and difficulties in negotiating age-graded changes are not uncommon [130]. Event-driven assays were eventually complemented by painstaking attempts to take stock of disadvantage’s unrelenting toll: the ‘ongoing difficulties’

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[131], daily hassles [132] and routine disruptions, the children’s world of financially strapped and quarrelling parents [133], and the demoralization of crushed hopes and dead-end job prospects common in lowerclass lives [134,135]. Such ‘structural strain’ [136] was a matter of social arrangements, not fateful happenings, and was built into the quotidian pulse of family life, work and play [137]. Still other difficulties stemmed from competing commitments to valued roles, such as those that working mothers or caregivers routinely face [138,139]. However, even ‘events’ should not be seen the still-common practice of resorting to ready-made checklists notwithstanding [140] as self-contained stressors. Not only did they interact with individual coping styles but the details of their occurrence had to be embedded in meaning-making contexts if their impact was to be properly gauged [141 143]. (The same divorce could be liberating for one partner, catastrophic for the other [137] though it would take more than mere listing to determine this.) Delayed effect was also an issue; adverse conditions in early life could have an impact much later in life [144] (cf. Reference [145]) and a cumulative impact over time. Nonevents, expected but failing to materialize, could also occasion stress [146], especially when normative at a certain life stage [147]. Finally, exploration of the contingencies that contained ‘prelude’ to and actual ‘occurrence’ of an event could reveal marked differences in the extent to which the person was implicated as a generative agent [148,149]. Even so, and illustrative of the sort of confounding commonplace in the field, some people thought to ‘produce’ their own stressful events were subsequently shown to be suffering the late effects of early childhood adversity [150], such as homelessness [151,152], though the mechanism via which delayed vulnerability operates remains open to inquiry. These formidable difficulties and limitations notwithstanding, the yield of stress-driven research has been impressive. In particular, it has put beyond reasonable doubt the consistently found inverse relationship between socioeconomic status (SES) (measured in various ways) and psychiatric distress (whether assessed as global rates, scores on symptom/ impairment scales or specific disorders), and across

various age groups [153 155]. (On other axes of social distinction race/ethnicity and gender, especially the record remains stubbornly mixed.) In a representative US household study using a structured clinical interview, for example, researchers in the National Comorbidity Survey (NCS) found that prevalence rates for most psychiatric diagnoses (panic-related conditions and substance abuse excepted) were highest in the lowest income and education groups [156]. Findings also suggested that comorbidities, disorders stacked or clustered together, are linked to SES. A decade later, using both diagnoses and a novel latent class analysis of multivariate disorder groupings, the NCS-Replication found the same ‘broadly consistent’ patterns of disorder and disadvantage, with an especially prominent group of highly comorbid major depression [157]. That the association between socioeconomic status and psychiatric disorder in the NCS was consistently stronger for 12-month than for lifetime (ever-diagnosed) prevalence suggests that disadvantage may affect the course as well as the onset of disorders [158] (cf. Reference [11]). Likewise, buffering resources, from effective coping strategies to assertive attitude to social allies, ‘tend to come in packages’ [143]. However, such clustering also illustrates a standing measurement problem. Many allegedly stressful events (gaining or losing a spouse, moving a home, changing jobs) have direct or indirect implications for one’s support network. Causal ordering becomes problematic in retrospect, it is difficult to tell whether compromised support exacerbated the event’s impact or was one of the effects itself [159]. There are subtleties and easily missed contours to the relationship between life stress and psychological disorder as well. A major negative event is commonly implicated in an initial episode of depression, but recurrences can be set off by minor or moderate events [160,161]. The line between clearly demarcated events and the ‘hardships and problems’ that are routine features of a neighbourhood or way of life can be difficult to draw in practice [143]. The psychic toll of disadvantage may have to be reckoned not only in ‘hierarchy stress’ or ‘status anxiety’ [88] but also in the ‘moral’ opprobrium of subordinate status withheld recognition, devalued parenting style, and locally prized linguistic and presentation proficiencies

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that score poorly with those called for in broader social participation [24,162,163]. In the event, what matters is not ‘allostatic load’ on an organism but the nagging sense of having failed to live up to (sub)cultural ideals [164,165]. Sometimes, too, it can be a simple matter of being ‘too poor to participate in the promise of a culture’ [166] (cf. Reference [167]). Like the tendency for clinicians to mistake circumstantial demoralization for poor motivation [168], such complexities call for close scrutiny and raise vexing measurement problems. (Again, from the start, there have been difficulties in unravelling potential confounding of undesirable events and symptoms/effects of disorder [159,169].) Most durable, however, has been the explanatory conundrum typified by duelling theories of causation and selection in accounting for the relationship between socioeconomic status and psychiatric disorder. Each has its claim on the research literature [11,170 172]. The first holds that structural disadvantage (perhaps in interaction with developmental, genetic or other ‘diathesis’ (or vulnerability) factors) ‘breeds’ disorder: it overloads the organism, producing distress, hapless efforts to cope and eventual breakdown. The second (echoed in the health capital literature) sees ‘downward drift’ as the mechanism behind the association: poor psychological health, and especially frank disorder, ill-equip someone for life in a competitive economy (or marriage market), and the net effect of repeated failure to measure up is slippage down the class ladder. Using an ingenious research design, Dohrenwend and Dohrenwend [173] put the question to a quasi-experimental test. The approach builds upon the ‘natural experiment’ offered by ethnic assimilation. It rests on four assumptions: that while class may be (somewhat) mutable over the life course, ethnic identity is not; that in a relatively open class society, merit and effort will be rewarded with upward social mobility, even if starting positions confer unfair advantage; that serious psychiatric conditions handicap that upward progress (and dispose downward); and that ethnic minority status operates independently as a status-related disability (owing to prejudice and discrimination). With an appropriately configured social setting, then, competing predictions are derived. Social causation predicts higher rates of disorder for ethnically disadvantaged groups within

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each class bracket, owing to the added adversity of minority status. Social selection recognizes the drag that minority status imposes, on healthy and unhealthy members alike, but sees the healthier member of advantaged groups rising up the class ladder. Consequently, it predicts lower rates of disorder among ethnically advantaged groups within a class bracket, owing to the diluting effect of healthy members stranded there. In a longitudinal study in Israel (with the disadvantaged group Jews of North African heritage), the results differed by type of disorder. Social selection was the better fit for schizophrenia, but social causation better explained the patterns observed for antisocial personality and substance use disorders among men and (though less well) for major depression among women [174]. Even with this elegant design, a number of cautions are warranted. Minority status may be constant over the life span but its social reception, meaning and consequence need not be. Moreover, shared colour can be a poor proxy for diverse heritage within broadly defined minority groups [175], and those within group distinctions have to be shown to have epidemiological import [176]. The expression and experience of devaluation in unequal registers of social distinction may be quite different [94,177]. Discrimination involves institutional and interpersonal transactions in ways that class does not [178]; class position lends itself to self-blame in ways that discrimination may not [172]. With extended practice, it became clear that the event-listing approach was fraught with additional methodological difficulties as well, difficulties that could help explain puzzling inconsistencies in the research record. Some of these were inherent in the elicitation practice itself, the limitations built into survey interviews as retrospective accounting exercises [179,180]. To begin with, ‘what counts’ as an event proved to be open to (sometimes idiosyncratic) interpretation, much more so than had been anticipated [181]. Some of this could be simple misunderstanding (listing as the death of a close friend someone long absent from the respondent’s life; some due to face-saving manoeuvres (minimizing one’s role in a divorce); some, to genuine confusion (does ‘laid off’ refer only to job loss without cause?); some, due to the constraints of survey interviews, which are rife

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with opportunity for ‘working misunderstandings’ between interviewer and respondent [182,183]. (With respect to stressful life events, there is simply no good reason to assume a common working knowledge of ‘the spirit of the event between subject and investigator’ [140].) Recall is not only imperfect, but biased as well by the subject’s own understanding of what to search for [180], as well as by one’s current symptomatic state [184] (so-called ‘state-dependent’ or ‘mood congruent’ recall [185]). Classification of events may also be subject to the informant’s own changing understanding of such things over time. Gender dispositions/practice may affect reporting proclivities [186]. Even disciplined efforts to carefully circumscribe the domain of events, factor in collateral accounts (like pairs of sisters corroborating each other’s account of early abuse and neglect [187]) and have respondents themselves rate severity of impact have their limitations [188]. Asking informants to recall and evaluate putatively stressful life events in the checklist protocol, it became clear, activated a lively, behind-the-scenes negotiation, not only with the rater and instrument but with one’s own past as well. Not surprisingly, concordance between self-report checklists and more structured inventories (see below) is poor, less than 50% by some reckonings [140]. The upshot, as Meyer had anticipated long ago, is that in order faithfully to transcribe both occurrence and effect, researchers would need an equipment upgrade. Semi-structured, skilfully probing interviews, co-constructing what were effectively personalized narratives of stress (both eventful and ongoing) and its management not the dubious economy of checklists and scores would prove the preferred tools of enquiry [131,149,160,189 191]. Brown and Harris’ community study of depression in women living in the lower-middle class neighbourhood of Camberwell in south London set what many still consider the standard [192]. Their original interview schedule was later refined and pared down somewhat [193], which made for a more readily adapted instrument (e.g. see References [194] to [196]). Using intensive in-depth interviews that sought to ‘contextualize’ stress accounts, the original research team queried over 300 local women with respect to

their life circumstances and mental health. Details of everyday life (e.g. financial and marital difficulties) and recent events (usually within the past year) are carefully elicited and ratings of severity made. The latter, using close readings of ‘biographically determined circumstances’, are meant to capture embedded meaning and impact the level of ‘threat’ that most (culturally similar) others would have experienced. (An extensive manual for the Life Events and Difficulties Schedule (LEDS) set forth detailed rules for defining, distinguishing constellations among and rating elicited experiences.) Social class (measured by occupation, education and assets) was strongly related to depression: fully a quarter of the lowerclass residents (versus 5% of the middle-class counterparts) reported recent or chronic depression. Stressors were also distributed by class, with over half (54%) of the lower-class women (versus 30% of the middleclass women) reporting a recent major event or ongoing life difficulty. However, what proved particularly hazardous was the combination of lower class status and the presence of one or more young children at home. Lower-class women in that life stage were eight times more likely (40 versus 5%) to report recent or chronic depression than their middle-class counterparts [197], and, in a gender-specific finding of the importance of support that others have gone on to explore (e.g. see Reference [198]), they were also half as likely to report having someone to confide in. The Camberwell study was thus able to show how, for women, structure (social class), developmental stage (early motherhood) and lack of support (an available confidant) come together to create a distinctive risk niche. In the process, it implicates class as a moderator of institutional role here, the quality of marital relationships. Subsequent research would go on to identify specific features of unusually strong contextualized stressors. For Brown and colleagues, these were experiences that occasioned loss, entrapment and humiliation [150,199]). In a different approach to narrative production, Dohrenwend and colleagues [149] developed an instrument that rates events by domain of experience, severity of threat and degree to which a respondent exercised control. Unlike LEDS, which combined situational and biographical data to render a composite or ‘global’ account of threat, the narratives yielded by the

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structured events probe and narratives rating method (SEPRATE) are stripped of biographic factors (their contribution can then be separately analysed) and reduced to journalistic accounts of what happened. (Dohrenwend [188] compares them to courtroom testimony.) Psychiatric outpatients interviewed with this instrument were nearly 14 times as likely to have one or more of such recent events than their community controls [200]. Like the aetiological studies, latter-day (and more rigorous) assessments of the demographic distribution of stressful life events (SLEs) have found it useful to disaggregate the event class [186]. Lower SES is

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consistently coupled with both traumatic (life-threatening) and other stressful events, and may be more associated with events involving violence [201]. Inconsistent findings for cumulative traumatic events by ethnicity may reflect differential sampling: whites were rated higher in an HMO sample than blacks in a household sample [201,202]. Both exclude institutionalized and homeless persons in each of these groups African-Americans are overrepresented [203] but the former excludes uninsured people as well. Better off, more stable working folk may be less likely to be exposed to stressful events and ongoing difficulties than their less fortunate ethnic counterparts.

UNEMPLOYMENT AND UNCERTAIN WORK

As we have seen, recurring, sometimes widespread, unemployment is among the distinctive bequests of modernity, although the term itself, carrying something of its contemporary meaning, did not come into common use until the late nineteenth century [204]. In unplanned economies, as the social relations of formal work came to reside in (and be defined by) the marketplace [205], employment’s prominence as a sorting mechanism in the production and replication of inequality grew. However, if rank and role within the market mattered, to be located outside it altogether was to court social inconsequence (or ‘redundancy’). (Official neglect and economic misrecognition of one gendered version of such inconsequence housework has long been a complaint of feminist economists; see Reference [206]). Because paid work figures so highly as a source of identity, sense of competence, everyday structure, self-respect and social regard, loss of work and sustained periods of joblessness are, unsurprisingly, damaging to health and well-being. This conclusion, among the earliest and most durable of social epidemiology, has been sustained over several generations of research and, since the 1930s, has been shown to include mental health consequences as well [207 211]. True, local context, social security schemes and culture all matter in taking the measure of the meaning and consequences of unemployment [212 215]. Yet surely among the most striking features of the demoralizing toll of unemployment in the original reports of the social consequences of job

loss is the depth and persistence of self-blame among the unemployed, even when it was clear that external factors are at fault [216 220]. To a large extent, this remains true today. Although a voluminous literature will be drawn upon, this is far from a comprehensive review. Even with that archive at hand, this chapter labours under some restrictions. Most of the relevant research pertains to capitalist economies. Evidence of the disastrous health effects of wrecked or disestablished planned economies, as in post-Soviet Russia, are not covered here, but may be found elsewhere (e.g. see References [88], [221] and [222]). Moreover, it is paid, formal work in the private or public sectors, with jobs distributed through labour markets, with which we are concerned. Housework, whether undertaken solely or in conjunction with paid work, raises distinctive difficulties of its own (see References [223] to [225] and also [197]). The vast, unregulated, illdocumented and variegated informal labour market, whose flexible regimes of work may well figure highly in the more favourable outcome of schizophrenia in less-developed economies [56], falls outside the compass of attention here (but see References [226] and [227]). Like the coroner statistics on suicide Durkheim was forced to rely upon, official unemployment figures may badly underestimate the true extent of the problem. In the US, for example, such figures typically omit ‘discouraged’ workers (who have quit looking

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for work) and those in part-time employment who would prefer full-time jobs [228]. ‘Disguised unemployment’ or underemployment workers toiling at jobs beneath their normal occupational positions or that are economically inadequate [229 231] is a further (and poorly documented) problem. Hence, contrast effects at the categorical level may well be diluted. Some analysts, mindful of unemployment’s categorical limitations, ask us to consider the debilitating effects of lifelong patterns of uncertain and unfulfilling labour that make up ‘careers of labour market disadvantage’ [211]. Even with these caveats, the toll of unemployment is impressive. Using a variety of outcomes, research designs and methodological tools, empirical tests of the relation between unemployment and mental health have shown substantial impacts on depression, social isolation, psychosomatic complaints, hospitalization, suicide, alcohol abuse and domestic violence ([232 238]). Many of these conditions may affect the intensity and/or appropriate targeting of a job-search, which can then prolong the period of joblessness and compound its effects, in a progressively worsening gyre [239]. Adding moral insult to health injury is the surplus stigma felt by some of the unemployed [240,241] and by those enrolled in certain work-relief schemes [242]. Adverse impacts have been documented for the mental health of spouses [243 245] and children [246], as well as for the quality of family and marital relationships [247 250]. Especially persuasive arguments are made possible with longitudinal analyses of ‘no-fault’ job loss. Such studies are able to disentangle the plausibly co-animating effects of poor health or dysfunctional behaviour and unemployment: when the event being assessed is a plant closing or a company folding, and those impacted are the laid-off workers, the causal arrow of effect is clear (e.g. see References [251] to [255]. However, as noted above, it would be a mistake to think that a clear psychological divide separates work and nonwork [211]. When work is soulless and dirty, when wages are set deliberately low because it is assumed that labourers will steal while on the job, the very act of labouring can serve to confirm a man’s degraded sense of self [256,257]. When labour markets ‘churn’ and businesses place increasing importance on flexibility, workers can experience high

levels of insecurity and anxiety, even when official unemployment rates remain low [37,258 260], and across very different labour markets. As alluded to earlier, some job-related health-relevant stress appears to be event-specific e.g. the anticipation of being laid off [261] while another type of stress is built into the job insecurity that is part and parcel of increasingly flexible work arrangements [262]. The corrosive effects of the latter on ability to plan, already apparent to analysts in the 1930s [263], have become more pervasive since then. The increasingly tenuous psychological distinction between borderline jobs and none at all suggests that like residential stability (as we will see shortly) employment status might best be conceptualized as a continuum [264]. Much harder to document are the collective effects on communities ‘when work disappears’ [215], or is so thoroughly transformed that the new regime effectively debars whole classes of formerly able (and still willing) men and women from steady jobs [265 267]. Nor are laid-off workers and their families the only casualties: not only is it the case that their households and dependants also suffer, but local cohorts of labourmarket-entry-aged youth are also deprived of the loose extended networks (the ‘weak ties’) that figure so highly in early job search and placement [268,269]. Painstaking, longitudinal work may be required to document such effects (e.g. see References [270] to [272]) and the subjective readings of the actors involved [273]. Such portraitures may best be assembled using documentary or ethnographic methods. Long-stay field study makes possible the patient recording of ‘backstage’ adjustments, the private anxieties behind public bluster and the unheralded sources of solace and shame. At the individual level, the social disconsolations of unemployment the loss of structure in everyday life, the sudden absence of a source of meaning and identity, the surrender of regular instrumental purpose, marital discord or slippage into ‘unmarriageability’ altogether, gnawing feelings of worthlessness and the low fug of self-pity, alleviated perhaps by heroic drinking [274 276] all this may be captured and calibrated by nuanced inventories of psychological distress. However, full appreciation of their collective impact may require the broader lens that a documentary approach or community study

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affords (e.g. see References [277] to [279]). Where epidemiologists happen to be on hand to take their measure, elevated rates of depression and suicide are not uncommon as well (e.g. see Reference [280]). As this miscellany of effects suggests, unemployment’s effects are registered not only in well-being the impressive range of morbidity and mortality costs only partially sketched above but also in the ability to plan and capacity to take action of consequence the damage to agency in short [211]. The first, obvious

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and frequently durable impact of unemployment is that it soon impoverishes many of its casualties. However, the second, more insidious fact about unemployment is its tendency over time to leach away at the spirit: to restrict, baffle and discourage the unemployed agent [211]. It disables the moral self, cutting the ground out from under its capacity to peer into the future with any sense of being able to impact it. In the words of Appadurai [167], it sabotages the jobless worker’s ‘capacity to aspire’.

DISPLACEMENT AND RESIDENTIAL INSTABILITY

The dislocations associated with poverty range from ‘planned’ mass displacements to clear the way for commercial development, to relocations engineered in the interest of ‘urban renewal’, to eviction for failure to pay rent, to what are increasingly common (and variously precipitated) bouts of homelessness. Vulnerability to displacement is one of the signal forms of powerlessness among the poor, especially when compounded by minority racial or ethnic status. The trauma that follows upon ‘tearing up neighbourhoods’ [281] or wholesale relocation in the wake of natural disaster [166] can remain an open communal wound. Both forced migrations (beyond the scope of the work here, but see References [282] and [283]) and frank homelessness lie at the extremes of displacement. In the developed world, the US experience may be the best documented. By the late 1980s, significant numbers of Americans by some estimates 3% of the population over a five-year period [284] had found themselves unable to sustain a place of their own and compelled instead to resort to public or informal sources of shelter. Most of the informal (or ‘shadow’) sheltering was invisible and went undocumented, the commonplace clemencies of kinship and friendship stepping in where the market and welfare state failed [285]. However, the storied annals of contemporary homelessness draw upon decidedly different sources. Press coverage of the sometime antic entreaties and evident suffering of the ‘street homeless’ effectively sealed the simplistic association in the public’s mind not supported by research between homelessness and deinstitutionalization. True, the

closing of psychiatric institutions without ensuring the functional equivalents of asylums or supportive residences meant that many vulnerable people were shunted to lives on ‘the institutional circuit’ [113,286]. But that was only part of the picture. Reservoirs of affordable housing that had once provided respite, shabby but cheap, outside the hospital had dried up. Research studies and the experience of service providers would demonstrate the complex relationship of homelessness and mental health, reflecting not only differential vulnerability to homelessness but distinctive pathways to that state (and the likelihood of staying there) as well. Conceptual and methodological problems harry research in this field, especially as it relates to its mental health dimensions [287]. As with work, a straightforward categorical definition of homelessness has proven elusive, and for good reason. Any candidates put forward are typically tailored for specific purposes, often those of bureaucracies charged with establishing eligibility criteria for aid. The social science case is driven less by pragmatism than by conceptual utility. Here the distinction between socially productive processes and relatively durable conditions is also pertinent [94]. Rather than two classes of people, we face a continuum of residential instability: a gallimaufry of housing arrangements in a matrix of stability, adequacy, affordability and formality. Where within this matrix locally meaningful clusters may be inscribed to distinguish housed from homeless is largely a political decision. Little debate surrounds those who take up residence on the streets, parks, transportation depots or subways, or who

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successfully broker entry to designated shelters. (Merely applying for shelter triggers the application of prevailing eligibility criteria.) At the other end of the continuum are those stably ‘doubled up’ situations in which unrelated people (or people outside the culturally prescribed model of family) share a dwelling unit. In between these two extremes are informal religious-based shelters for the homeless, domestic violence sanctuaries, institutional options (such as hospitals or jails) where otherwise stranded people may be housed because more appropriate placements and more conventional but precarious housing situations including overcrowded dwellings and unstable doubled-up arrangements are unavailable. Again, practice trumps category: people commonly move among these different housing conditions, so that a temporary dwelling place should not be confused with a class of homeless people. In some US cities, a substantial number of homeless individuals circulate frequently among the streets, short-stay hotels, doubled-up arrangements and institutions (including jails, hospitals and detox facilities). Homelessness in this broader sense is characterized by instability across a variety of impermanent, often makeshift, living situations. Enquiry into the lived experience of displacement often confronts a moving target. As with unemployment, research on homelessness tends to be more narrowly and expediently focused. Difficulties identifying homeless people who are doubled-up, or interviewing those in institutional facilities, or tracking those whose situations change precipitously, have resulted in operationalized definitions of homelessness that are keyed to sheltered populations, certain users of services (e.g. soup kitchens) without a place of their own, and people living on the streets or in encampments. Methodological difficulties compound the conceptual ones. Epidemiologists distinguish between point prevalence, or the number of people in a given condition at a particular point in time, and period prevalence, or the number of people experiencing that condition during some stipulated period. If some people experience a condition only briefly, as with homelessness, period prevalence may be many times greater than point prevalence. Further, if those who are only briefly or episodically homeless differ from those who remain so for extended periods, then point-

in-time assays of the population will be distorted by overrepresentation of long-stayers (those more likely to be caught by point-in-time methods). If the factors associated with long stays in shelter include sparse or depleted social networks or practical difficulties in managing one’s household, for example, one would expect persons with severe psychiatric and substance abuse disorders to be disproportionately among the ranks of ‘chronic’ homeless. Administrative records in some jurisdictions confirm that expectation [288 291] and the testimony of service expertise concur [292]. In programmes designed to serve the long-term homeless, medical comorbidities are also common [293]. Duration of homelessness is also a strong predictor of mortality, even when adjusted for age and disability [294], with HIV/AIDS playing a strong role for some populations in some cities [295 297]. As is true of risk and social context more generally [85], the factors that make for vulnerability to displacement and durable homelessness are a combination of personal and structural [203,298,299]. As a national phenomenon (or ‘social fact’), homelessness may best be understood as a structural problem: increasing numbers of poor people pursuing declining numbers of low-cost housing units. A game of musical chairs results, where some portion of the population is left without a home (or crowding another’s lap). By default, the losers are the most vulnerable, and that vulnerability may be due to extreme poverty, age, race/ethnicity, disability, substance abuse or badly frayed social networks. Again risk factors dispose, but do not determine. Put differently, when there was a sufficient stock of affordable housing available to people living at the edge of respectability, people who found it difficult or distasteful to fit in were consigned instead to this ‘social and cultural limbo’, and reliably found their way there. Indistinguishable in the main from their homeless counterparts decades later, they made up the bulk of the residential hotel population in American cities in the earlier twentieth century [300]. Even among the structurally displaced today, bracing displays of resourcefulness and self-direction can make facile assumptions about pathology, disaffiliation and homelessness misleading. It may take ethnographic accounts to see this, however [301,302].

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Reported rates of mental illness tend to be higher among homeless populations than among those housed. This is not to say, for reasons outlined above, that mental illness causes homelessness. (Nor, indeed, is it any longer the case, in some US jurisdictions, that mental illness invariably prolongs shelter stays, for reasons that illustrate the bureaucratic logic behind apparent risk profiles. People with certified disabilities are entitled to more substantial income support in the US; that fact, coupled with a targeted policy of aggressive outreach, may actually enhance the chances of a nonkin mediated exit from shelter if one carries a diagnosis of severe psychiatric disorder.) Additional methodological difficulties defining the population, sampling adequately, measuring appropriately, deciding between instruments and clinical judgement, avoiding contamination of symptom profiles by lack of sleep and unrelenting vigilance further complicate the task of untangling the association of mental illness and homelessness. Troubling behaviour that would ordinarily betoken psychiatric disorder may, in the case of the street-dwelling homeless, reflect the influence of an unusually stressful environment, lack of access to washrooms (hence ‘poor hygiene’ and ‘a dishevelled appearance’) or strategic adaptations to the hazards of street life (certain bizarre behaviours may function as a defence against unwanted attention). Then, too, mental health problems vary in intensity and duration, so deciding whether lifetime prevalence or point-in-time assays are more appropriate will substantially affect results. Even if the assessment takes place during an episode of homelessness, it is difficult to say whether the measured psychiatric disability is a cause, consequence or correlate of the homelessness. Finally, in the US, provisions for the homeless poor, the demographic characteristics of subpopulations, local driving forces and feeder institutions, controlling legal authority and thus patterns of homelessness are all extremely diverse. (Like gambling, it is safe to assume that it exists everywhere, but the social response to it radically shapes its visibility, magnitude and place in the makeshift economies of the poor.) Regional differences, temporal shifts, relative proportions of families (intact and otherwise), unattached adults, tramping adolescents and undocumented transient

353

workers or political refugees make population generalizations ill-advised [290,303 305]. Gender differences may also apply, for reasons that again illustrate the intersection of clinical and cultural factors. Homeless men are less likely than homeless women without children to show evidence of severe mental illness, a fact reflecting the operation of several factors. As noted earlier, doubling up with others is the most common form of shadow shelter and the last stop before literal homelessness. Women are typically more versatile and valued as household members. They also do the ‘work of kinship’ their investment in (and expected return on) the social capital of family ties is greater and more durable than that of men. Cultural thresholds of tolerance for dependency and difficult behaviour seem to be set higher for women than men, permitting them to stay with family and friends under circumstances where men would be asked to leave [301,306]. Women who eventually exceed thresholds may be expected to show substantially more disturbed or disruptive behaviour than their male counterparts ejected earlier. (Note that the types of mental illness most common among women are less often associated with threats or violent behaviour than those common among men.) Finally, the population of officially ‘single’ homeless women may include a fair number of mothers who have lost custody of their children due to mental illness [307]. For all these reasons, reported rates of mental illness among homeless populations have proven notoriously inconsistent. After culling reported results for minimal methodological adequacy in study design and analysis, one of the more sophisticated assessments of rates of current psychiatric disorder, substance abuse, and dual diagnosis [308] produced ranges of prevalence estimates that look like Table 27.1. (The authors cautioned, however, that this Table 27.1 Current mental health and substance use problems (urban adults aged 18 þ ) Any axis 1 disorder

Severe/ persistent axis 1

Any substance use

Dual Dx a

0.28 0.71

0.15 0.26

0.30 0.73

0.12 0.26

a

Severe mental disorder þ axis 1 substance use disorder.

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was an ‘exploratory’ assessment.) As a general rule, the better the methodological rigour, the lower the estimate. Regardless of the reasons for their displacement foster-care graduate, runaway, ejected from household homeless youth seem to be at especially high risk for mood disorders, suicide attempts and posttraumatic stress disorder (PTSD), especially those who have spent time contending with the depredations of life on the street [309]. Behavioural problems and substance use are more common still. Again, more rigorous assessments tend to produce lower estimates for some disorders, though not depression [310]. Here considerable ambiguity clouds the causal picture. That survival on the street may necessitate a variety of high-risk behaviours (sex work and favours, drug use and trafficking) seems scarcely in doubt; not surprisingly, then, high rates of physical and sexual victimization are commonly reported (e.g. see References [311] and [312]). Among homeless families, strikingly different results are obtained. Indeed, the most common and consistent finding from second-generation research on this population in the US (from the early 1990s onward) was the documentation of elevated levels of various problems among low-income children, whether homeless or housed, when compared against normative data [313]; poverty was what they had in common [314,315]. Current rates of disorders diagnosed using DSM-III-R criteria, for example, were found to be identical in a Worcester sample of homeless and low-income children eight years and older [316]. Inconsistency dogs other findings, with coeval studies reporting, for example, that ‘externalizing’ disorders (e.g. displays of aggressive behaviour) are more common among homeless preschoolers than low-income housed children, but ‘internalizing’ disorders (e.g. depression, anxiety) are not [317]; companion reports find the opposite [318]. Reports of the impact of homelessness on schoolrelated performance are divided by educational reforms instituted as part of the Stuart B. McKinney Homelessness Assistance Act (1987): those conducted before the legislation found substantial deficits; those after (e.g. see Reference [319]) generally found no differences in absenteeism or academic performance [313]. Person-centred analysis (instead

of group-wide analysis of variables across people) suggests, however, that there may be marked differences in adaptive resiliency across subgroups within homeless families [320]. Similarly, the much-relied-upon (and thus exhausted) social networks of homeless families seen at the time of applying for shelter [321] had returned to configurations virtually indistinguishable from those of their housed counterparts when those same (and since rehoused) families were interviewed five years later [322]. The same research suggests that the long-term impact (55 months after shelter entry) on children and adolescents, using a variety of clinical and social measures, was found to be minimal, with the possible exception of those children who had first experienced homelessness at a very early age. Both the formerly homeless and their poor but housed peers fared badly when scored against cognitive and educational norms [323]. At follow-up, too, more recent life events (violence at home or in the neighbourhood) seemed more ingredient to mental health than a history of homelessness [324]. If obtaining reliable estimates of disorder among the homeless poor is tricky, teasing out causal inference from the tangled web of association between displacement and pathology (or other risk factor) is more difficult still. Certain ground rules apply: rates or experiences must be shown to be higher among (some) homeless persons than among their merely poor counterparts; the condition must precede initial experiences of homelessness; and plausible mechanisms can be proposed to explain how the disabilities associated with that disorder can (under certain circumstances) elevate risk of homelessness. Psychiatric disorders such as schizophrenia meet such criteria; so do early childhood disruptions like foster care placement [325]. However, even here, effective risk is socially embedded: in a tight rental housing market, a history of lax rent payments and/or unconventional appearance or behaviour may render someone a less desirable tenant. In more forgiving rental markets, such behaviour may be overlooked or tolerated [326]. Landlords seeking to improve rental revenues provide a plausible mechanism for selective displacement of ‘difficult’ tenants. (Relatedly, the disorder and threatening atmosphere associated with warehouse-type shelters can make people acutely tuned to menace

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unlikely to use such facilities, ‘choosing’ instead to fend for themselves on the street.) Similarly, early childhood events may exert their destabilizing effect over time in a variety of ways. Foster care, for example, could signify developmental damage to coping abilities, the loss of kin-based support later in life or the sudden withdrawal of public support at an age when few are prepared to be self-sufficient or all of the above. Other conditions depression and demoralization especially are as likely to be accompaniments or consequences of the trauma of displacement and homelessness. As we have seen, studies are divided on the effects of homelessness on children, some showing developmental delays and other damage, others not, with still others seeking additional explanatory value in differential resiliency within that population. Careful research practice (the inclusion of comparison groups of poor but housed families) shows that the general rule with families, however, is that it is the (antecedent and enduring) poverty along with its multiple depredations not homelessness per se that is at work. (As Rutter has elsewhere argued [327]: It isn’t the ‘brokenness’ of homes that is so damaging so much as the ‘family discord and conflict’ that precedes and precipitates

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it; signs should not be mistaken for underlying process.) Scrupulous documentation of more recent residential histories would seem to offer one way to explore the dynamics of homelessness, but such histories are difficult to reconstruct reliably. Ironically, first-person accounts can overplay the role of disability [328], ignoring the fact that such conditions had long been present in one’s life without causing homelessness. As noted earlier, the negotiation of life transitions (either expected or unexpected) can be especially tricky, and their difficulties are compounded when mental illness intrudes. The same seemed to be true, early on, of transitions from out of homelessness. First-generation longitudinal studies showed that although many people with severe mental illness managed to leave the streets and shelters, such unassisted ‘exits’ tended to be short-lived, shallow and unstable, such that returns to homelessness were all but ensured [329]. Short-term intensive case management services provided one promising targeted intervention [330]. More recent assessments of the staying power of supported housing placement, even when the intervention takes place without interim transitional housing, have been much more optimistic (e.g. see Reference [331]).

CONCLUSION: RETHINKING POVERTY

If useful measures of social distinction must be theory-driven [94,332], the same is true for poverty and embodiment [81,97,333 335]. Acutely tuned to some developments in the social sciences (e.g. social capital, chiefly of the communitarian variety [336]), public health has been slow to make use of recent efforts, coming largely from the contentious world of international aid, to reframe poverty. Social psychiatry is no exception. This is not to discount striking progress made in domains traditionally more conversant with the clinical or place-based epidemiology the lasting impact, compound and cumulative risks of childhood adversity and its impact over the life course (e.g. see References [337] to [339]); innovative approaches to urbanicity, with attention to both built and neighbourhood environments [98,340,341]; and iconic, late-modern

accounts of migration and risk of psychosis (e.g. see Reference [342]). With a few notable exceptions (e.g. see References [343] and [344]), more radical attempts to reframe poverty and disadvantage have gone largely untapped by social psychiatry. Owing to its political embrace by the European Union and emphasis on full participation as a claim of citizenship, ‘social exclusion’ [345] may be more readily folded within the standard assays of deprivation or stigma (e.g. see References [51], [89] and [346]). However, more thoroughgoing efforts to rethink the social wages of inequality would compel us to redraw the conventional metes and bounds of poverty, cast a sceptical eye on claims of irreversibility and take a hard look at how public policy reproduces (whether inadvertently or by design) social inequalities in health. Income,

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work and education are not ignored, but neither are their limitations. Instead, these heterodox approaches use metrics grounded in human development, makeshift livelihoods, the exercise of agency and an engaged, contentious view of culture as an ongoing argument (not always voiced as such) about what it means to be one of us (e.g. see UN Human Development Reports 1990 2009 and References [347] and [348]). The arguments advanced and the frameworks laid out can be distinctive, even (viewed from the once-calm centres of functionalist sociology or free-market economics) eccentric. Measurement problems are admittedly formidable: practice and process are harnessed alongside outcome and achievement; meaning vies with functioning (‘Q-squared’ research methods are a practical necessity). However, after all that has been rehearsed in this chapter about the force of structure, the pluralities of disadvantage and the many varieties of scuttled agency, their appeal is undeniable. Arguably, they represent the difficult next step in reconceiving ‘the social world’ [94]. They range from calls to reintegrate the claims for recognition into older demands for redistribution [23,349]; to research programmes bent on re-theorizing approaches to well-being in developing countries [25], especially those that reappraise the realm of resources [350]; and to the cottage industry that has grown up around Amartya Sen’s ‘capabilities’ approach, with its emphasis on real opportunities to achieve locally valued ‘beings and doings’ (e.g. see References [21], [22], [351] and [352]). For the most part, they remain unknown, and their potential utility untested, within the ranks of social psychiatry. Suffice it to mention that attempts to derive any implications they may hold for reconceptualizing aetiology and recovery are in their infancy (e.g. see References [76], [353] and [354]). In all of this, too, it may not be too much to detect a reawakened keenness for dynamic process in aetiology. The huge shadows thrown by time and history, the swords of circumstance and chance, are well caught in the new social psychiatry, in ways that both pay tribute to forebears and (provisionally, partially) reach out to fresh attempts to rethink the social. In the interstices of its dry texts, one may also detect the faint presence, not only of resiliency’s

troubled brief but also of an older fallible self, whose rough brush with misfortune can mean: . . . a new beginning, a raid on the inarticulate With shabby equipment, always deteriorating. In the general mess of imprecision of feeling, Undisciplined squads of emotion. (Eliot, East Coker)

Eavesdropping upon the exertions of such selves as they seek refuge, confront challenge, forge meaning, offer solace and slog through an unforgiving everyday, unbending if not proud is one of the offbeat practices of the new poverty studies. Social psychiatry would be well-advised to consult these alternative writs of suffering.

REFERENCES 1. Salter, F. R. (ed.) (1926) Some Early Tracts on Poor Relief, Methuen, London. 2. Jusserand, J. J. (1920) English Wayfaring Life in the Middle Ages, Revised edition, Ernest Benn, London. 3. Davis, N. Z. (1968) Poor relief, humanism, and heresy: the case of Lyon. Studies in Medieval and Renaissance History, 5, 217 275. 4. Braudel, F. (1982) Civilization and Capitalism, 15 18th Century. Vol. II. The Wheels of Commerce, Harper & Row, New York. 5. Lis, C. (1986) Social Change and the Labouring Poor: Antwerp, 1700 1860, Yale University Press, New Haven, Connecticut. 6. Adams, T. M. (1990) Bureaucrats and Beggars, Oxford University Press, New York. 7. Sigerist, H. E. (1943) Civilization and Disease, University of Chicago, Chicago, Illinois. 8. Rosen, G. (1947) What is social medicine? A genetic history of the concept. Bulletin of the History of Medicine, 21, 674 733. 9. Rosen, G. (1973) Disease, debility and death, in The Victorian City: Images and Realities, vol. 2 (eds H. J. Dyos and M. Wolf), Routledge & Kegan Paul, London, pp. 625 667. 10. Brockington, C. F. (1961) The history of public health, in The Theory and Practice of Public Health (ed. W. Hobson), Oxford University Press, London.

TAKING INEQUALITY’S MEASURE

11. Susser, M., Watson, W. and Hopper, K. (1985) Sociol ogy in Medicine, 3rd edn, Oxford University Press, New York. 12. Porter, R. (1997) The Greatest Benefit to Mankind: A Medical History of Humanity, Norton, New York. 13. Durkheim, E. (1951) Suicide, Free Press, Glencoe, Illinois, First published 1897. 14. Patel, V. and Kleinman, A. (2003) Poverty and com mon mental disorders in developing countries. Bulletin of the World Health Organization, 81, 609 615. 15. Biswas Diener, R. and Diener, E. (2001) Making the best of a bad situation: satisfaction in the slums of Calcutta. Social Indicators Research, 55, 329 352. 16. Luthar, S. S. (ed.) (2003) Reslience and Vulnerability, Cambridge University Press, New York. 17. Camfield, L. and McGregor, A. (2005) Resilience and well being in developing countries, in Handbook for Working with Children and Youth: Pathways to Resi lience across Cultures and Context (ed. M. Ungar), Sage, Thousand Oaks, California, pp. 189 210. 18. Collins, D., Morduch, J., Rutherford, S. and Ruthven, O. (2009) Portfolios of the Poor, Princeton University Press, Princeton, New Jersey. 19. Wikan, U. (1996) The nun’s story. American Anthro pologist, 98, 279 289. 20. Canvin, K., Marttila, A., Burstrom, B. and Whitehead, M. (2009) Tales of the unexpected? Hidden resilience in poor households in Britain. Social Science and Medicine, 69, 238 245. 21. Sen, A. (1999) Development as Freedom, Anchor, New York. 22. Nussbaum, M. C. (2000) Women and Human Devel opment: The Capabilities Approach, Cambridge University Press, New York. 23. Fraser, N. and Honneth, A. (2003) Redistribution or Recognition? A Political Philosophical Exchange, Verso, London. 24. Sayer, A. (2005) The Moral Significance of Class, Cambridge University Press, New York. 25. Gough, I. and McGregor, J. A. (eds) (2007) Wellbeing in Developing Countries: From Theory to Research, Cambridge University Press, New York. 26. Burds Sharps, S., Lewis, K. and Martins, E. B. (2008) The Measure of America: American Human Develop ment Report 2008 2009, SSRC/Columbia University Press, New York. 27. Farmer, P. (2003) Pathologies of Power, University of California Press, Berkeley, California.

357

28. Cockerham, W. (2007) Social Causes of Health and Disease, Polity, New York. 29. Giddens, A. (1990) The Consequences of Modernity, Stanford University Press, Stanford, California. 30. Harvey, D. (1990) The Condition of Postmodernity, Blackwell, London. 31. Beck, U. (1992) Risk Society: Towards a New Mod ernity, Sage, Thousand Oaks, California. 32. Appadurai, A. (1996) Modernity at Large: Cultural Dimensions of Globalization, University of Minnesota Press, Minneapolis, Minnesota. 33. Castells, M. (2000) The Rise of the Network Society, 2nd edn, Wiley Blackwell, New York. 34. Latour, B. (1993) We Have Never Been Modern, Harvard University Press, Cambridge, Massachusetts. 35. Stiglitz, J. E. (2002) Globalization and Its Discon tents, Norton, New York. 36. Munck, R. (2004) Globalization and Social Exclusion, Kumarian Press, Bloomfield, Connecticut. 37. Hacker, J. S. (2006) The Great Risk Shift, Oxford University Press, New York. 38. Ignatieff, M. (1984) The Needs of Strangers, Anchor, New York. 39. Ong, A. (1999) Flexible Citizenship: The Cultural Logics of Multinationality, Duke University Press, Durham, North Carolina. 40. Giddens, A. (1991) Modernity and Self Identity, Stan ford University Press, Stanford, California. 41. Bauman, Z. (2007) Liquid Times: Living in an Age of Uncertainty, Polity Press, Oxford. 42. McKenzie, K., Fearon, P. and Hutchinson, G. (2008) Migration, ethnicity and psychosis, in Society and Psychosis (eds C. Morgan, K. McKenzie and P. Fearon), Cambridge University Press, New York, pp. 143 159. 43. Wakefield, J. C. (1999) The measurement of mental disorder, in A Handbook for the Study of Mental Health (eds A. V. Horwitz and T. L. Schied), Cam bridge University Press, New York, pp. 29 57. 44. Prince, M., Patel, V., Saxena, S. et al. (2007) No health without mental health. Lancet, 370, 859 877. 45. Wang, P. S., Berglund, P., Olfson, M. et al. (2005) Failure and delay in initial treatment contact after first onset of mental disorders in the National Comorbidity Survey Replication. Archives of General Psychiatry, 62, 603 613. 46. Pescosolido, B. A. and Boyer, C. (1999) How do people come to use mental health services? Current

358

47.

48.

49.

50.

51.

52.

53.

54.

55.

56.

57. 58.

SOCIAL CONSEQUENCES AND RESPONSES

knowledge and changing perspectives, in A Handbook for the Study of Mental Health (eds A. V. Horwitz and T. L. Scheid), Cambridge University Press, New York, pp. 392 411. Pescosolido, B. A. Gardner, C. B. and Lubell, K. M. (1998) How people get into mental health services: stories of choice, coercion and ‘muddling through’ from ‘first timers’. Social Science and Medicine, 46, 275 286. Link, B. G. and Phelan, J. (1999) The labeling theory of mental disorder (II): the consequences of labeling, in A Handbook for the Study of Mental Health (eds A. V. Horwitz and T. L. Scheid), Cambridge University Press, New York, pp. 361 376. Phelan, J. C. (2002) Genetic bases of mental illness a cure for stigma? Trends in Neuroscience, 25, 430 431. Corrigan, P. W. (ed.) (2003) On the Stigma of Mental Illness: Practical Strategies for Research and Social Change, American Psychological Association, Washington, DC. Thornicroft, G. (2006) Shunned: Discrimination against People with Mental Illness, Oxford University Press, New York. Leff, J. (2008) Climate change in psychiatry: periodic fluctuations or terminal trend, in Society and Psychosis (eds C. Morgan, K. McKenzie and P. Fearon), Cambridge University Press, New York, pp. 11 22. Dunham, H. W. (1965) Community psychiatry: the newest therapeutic bandwagon. Archives of General Psychiatry, 12, 303 313. World Health Organization (WHO) (1973) Report of the International Pilot Study of Schizophrenia, vol. 1, World Health Organization, Geneva. World Health Organization (WHO) (1979) Schizo phrenia. An International Follow Up Study, John Wiley & Sons, Ltd, Chichester. Warner, R. (1985) Recovery from Schizophrenia: Psy chiatry and Political Economy, Routledge & Kegan Paul, London. Kleinman, A. (1988) Rethinking Psychiatry, Free Press, New York. Jablensky, A., Sartorius, N. and Ernberg, G. et al. (1992) Schizophrenia: manifestations, incidence in course in different cultures. A World Health Organiza tion ten country study. Psychological Medicine. Monograph Supplement, 20, 1 97.

59. Hopper, K. (1991) Some old questions for the new cross cultural psychiatry. Medical Anthropology Quarterly (New Series), 5, 299 330. 60. Hopper, K. (2008) Outcomes elsewhere: course of psychosis in ‘other cultures’, in Society and Psychosis (eds C. Morgan, K. McKenzie and P. Fearon), Cambridge University Press, New York, pp. 198 215. 61. Mizruchi, E. H. (1987) Regulating Society: Beguines, Bohemians and Other Marginals, University of Chi cago Press, Chicago, Illinois. 62. Scull, A. T. (1977) Decarceration: Community Treat ment and the Deviant A Radical View, Prentice Hall, Englewood Cliffs, New Jersey. 63. Estroff, S. E. (1981) Making It Crazy, University of California Press, Berkeley, California. 64. Brown, P. (1986) Mental Health Care and Social Policy, Routledge & Kegan Paul, London. 65. Mechanic, D. and Rochefort, D. A. (1990) Deinstitu tionalization: an appraisal of reform. Annual Review of Sociology, 16, 301 327. 66. Chamberlin, J. (1978) On Our Own, Hawthorn, New York. 67. Kaufman, C. L. (1999) An introduction to the mental health consumer movement, in A Handbook for the Study of Mental Health (eds A. V. Horwitz and T. L. Schied), Cambridge University Press, New York, pp. 493 507. 68. Estroff, S. E. (2003) Subject/subjectivities in dispute: the poetics, politics and performance of first person narratives of people with schizophrenia, in Schizo phrenia, Culture and Subjectivity: The Edge of Experience (eds J. H. Jenkins and R. Barrett), Cam bridge University Press, New York, pp. 282 302. 69. Hornstein, G. A. (2009) Agnes’ Jacket, Rodale, New York. 70. Robertson, A. (1998) Critical reflections on the politics of need: implications for public health. Social Science and Medicine, 47, 1419 1430. 71. Parker, R. and Aggleton, P. (2003) HIV and AIDS related stigma and discrimination: a conceptual frame work and implications for action. Social Science and Medicine, 57, 13 24. 72. Cohen, C. I. (1993) The biomedicalization of psychia try: a critical overview. Community Mental Health Journal, 29, 509 521. 73. Draine, J., Salzer, M. S., Culhane, D. P. and Hadley, T. R. (2002) Role of social disadvantage in crime,

TAKING INEQUALITY’S MEASURE

74.

75.

76.

77.

78.

79.

80.

81.

82.

83.

84. 85.

86.

87.

joblessness, and homelessness among persons with ser ious mental illness. Psychiatric Services, 53, 565 573. Borg, M., Sells, D., Topor, A. et al. (2005) What makes a house a home: the role of material resources in recovery from severe mental illness. American Journal of Psychiatric Rehabilitation, 8, 243 256. Wilton, R. (2004) Putting policy into practice? Poverty and people with serious mental illness. Social Science and Medicine, 58, 25 39. Warner, R. (2008) Social factors as a basis for treat ment, in Society and Psychosis (eds C. Morgan, K. McKenzie and P. Fearon), Cambridge University Press, New York, pp. 163 178. Mental Health ‘Recovery’ Study Working Group (2009) Mental Health ‘Recovery’: Users and Refusers, Wellesley Institute, Toronto. Ware, N. and Goldfinger, S. (1997) Poverty and reha bilitation in severe psychiatric disorders. Psychiatric Rehabilitation Journal, 21, 3 9. Lovell, A. M. (1997) The city is my mother: narratives of schizophrenia and homelessness. American Anthro pologist, New Series, 9 (2), 355 368. McGrath, J. J. (2007) The surprisingly rich contours of schizophrenia epidemiology. Archives of General Psy chiatry, 64, 14 16. Morgan, C., McKenzie, K. and Fearon, P. (eds) (2008) Society and Psychosis, Cambridge University Press, New York. Eisenberg, L. (2004) Social psychiatry and the human genome: contextualising heritability. British Journal of Psychiatry, 184, 101 103. Muntaner, C., Lynch, J. W. and Davey Smith, G. (2008) Social capital and the third way in public health, in Critical Perspectives in Public Health (eds J. Green and R. Labonte), Oxford University Press, New York, pp. 35 46. Friedli, L. (2009) Mental Health, Resilience and Inequalities, WHO/Europe, Copenhagen. Link, B. G. and Phelan, J. (1995) Social conditions as fundamental causes of disease. Journal of Health and Social Behavior, Extra Issue, 80 94. Link, B. G. and Phelan, J. (2005) Fundamental sources of health inequities, in Policy Challenges in Modern Health Care (eds D. Mechanic, L. B. Rogut, D. C. Colby and J. R. Knickmam), Rutgers University Press, New Brunswick, New Jersey, pp. 71 84. Wilkinson, R. (1996) Unhealthy Societies: The Afflic tions of Inequality, Routledge, London.

359

88. Marmot, M. (2004) The Status Syndrome, Times Books, New York. 89. World Health Organization Commission on Social Determinants of Health (WHO CSDH) (2008) Closing the Gap in a Generation: Health Equity through Action on the Social Determinants of Health. Final Report of the Commission on Social Determinants of Health, World Health Organization, Geneva. 90. Boydell, J., van Os, J. and McKenzie, K. (2001) Incidence of schizophrenia in ethnic minorities in London: ecological study into interactions with envir onment. British Medical Journal, 323, 1336 1338. 91. Gephardt, M. A. (1997) Neighborhoods and commu nities as contexts for development, in Neighborhood Poverty, Volume I: Context and Consequences for Children (eds J. Brooks Gunn, G. J. Duncan and J. L. Aber), Russell Sage Foundation, New York, pp. 1 43. 92. Diez Roux, A. (1998) Bringing context back into epi demiology: variables and fallacies in multilevel analy sis. American Journal of Public Health, 88, 216 222. 93. Diez Roux, A. (2001) Investigating neighborhood and area effects on health. American Journal of Public Health, 91, 1783 1789. 94. March, D., Morgan, C., Bresnahan, M. and Susser, E. (2008) Conceptualizing the social world, in Society and Psychosis (eds C. Morgan, K. McKenzie and P. Fearon), Cambridge University Press, New York, pp. 41 56. 95. Macera, C. A., Armstead, C. A. and Anderson, N. A. (2001) Sociocultural influences on health, in Hand book of Health Psychology (eds A. Baum, T. A. Revenson and J. E. Singer), Lawrence Erlbaum, Mah wah, New Jersey, pp. 427 440. 96. Bourdieu, P. (1977) Outline of a Theory of Practice, Cambridge University Press, New York. 97. Kreiger, N. and Davey Smith, G. (2004) ‘Bodies count’ and body counts: social epidemiology and embodying inequality. Epidemiologic Reviews, 26, 92 103. 98. Boydell, J. and McKenzie, K. (2008) Society, place and space, in Society and Psychosis (eds C. Morgan, K. McKenzie and P. Fearon), Cambridge University Press, New York, pp. 77 94. 99. Lutfey, K. and Freese, J. (2005) Toward some funda mentals of fundamental causality: socioeconomic sta tus and health in the routine clinic visit for diabetes. American Journal of Sociology, 110, 1326 1372. 100. Elkind, H. B. (1938) Is there an epidemiology of mental disease? American Journal of Public Health, 28, 245 250.

360

SOCIAL CONSEQUENCES AND RESPONSES

101. Linton, R. (1956) Culture and Mental Disorders, C. C. Thomas, Springfield, Massachusetts. 102. Hollingshead, A. B. and Redlich, F. (1958) Social Class and Mental Health, John Wiley & Sons, Inc., New York. 103. Murphy, H. (1961) Social change and mental health. The Milbank Memorial Fund Quarterly, 39, 385 445. 104. Leighton, D. C., Harding, J. S., Macklin, D. B. et al. (1963) The Character of Danger. Vol. III, The Stirling County Study of Psychiatric Disorder and Sociocul tural Environment, Basic Books, New York. 105. Opler, M. K. (1967) Culture and Social Psychiatry, Atherton. 106. Hammer, M. and Leacock, E. (1961) Source material on the epidemiology of illness, in Field Studies in the Mental Disorders (ed. J. Zubin), Grune and Stratton, New York, pp. 418 486. 107. Faris, R. and Dunham, H. (1939) Mental Disorders in Urban Areas, University of Chicago Press, Chicago, Illinois. 108. Lief, A. (ed.) (1948) The Commonsense Psychiatry of Dr. Adolf Meyer, McGraw Hill, New York. 109. Selye, H. (1936) A syndrome produced by diverse nocuous agents. Nature, 138, 32. 110. Selye, H. (1956) The Stress of Life, McGraw Hill, New York. 111. Dubos, R. (1965) Man Adapting, Yale University Press, New Haven, Connecticut. 112. Selten, J. P. and Cantor Graae, E. (2005) Social defeat: risk factor for schizophrenia? British Journal of Psy chiatry, 187, 101 102. 113. Luhrmann, T. M. (2008) ‘The street will drive you crazy’: why homeless psychotic women in the institu tional circuit in the United States often say no to offers of help. American Journal of Psychiatry, 165, 15 20. 114. Merton, R. K. (1938) Social structure and anomie. American Sociological Review, 3, 672 682. 115. Fox, R. W. (1979) So Far Disordered in Mind, Uni versity of California Press, Berkeley, California. 116. Ingelby, D. (1980) Critical Psychiatry, Pantheon, New York. 117. Spitzer, S. and Scull, A. T. (eds) (1985) Research in Law, Deviance and Social Control, JAI Press, New York. 118. Whitehead, M. and Dahlgren, G. (1991) What can be done about inequalities in health? Lancet, 338, 1059 1063.

119. Holmes, T. H. and Rahe, R. H. (1967) The social readjustment rating scale. Journal of Psychosomatic Research, 11, 213 218. 120. Dohrenwend, B. S. and Dohrenwend, B. P. (eds) (1974) Stressful Life Events: Their Nature and Effects, John Wiley & Sons, Inc., New York. 121. Lazarus, R. S. and Folkman, S. (1984) Stress, Apprai sal, and Coping, Springer, New York. 122. Grant, I., Sweetwood, H. L., Yager, J. and Gerst, M. (1981) Quality of life events in relation to psychiatric symptoms. Archives of General Psychiatry, 38, 335 339. 123. Paykel, E. S. (1974) Life stress and psychiatric disorder: applications of the clinical approach, in Stressful Life Events: Their Nature and Effects (eds B. S. Dohrenwend and B. P. Dohrenwend), John Wiley & Sons, Inc., New York, pp. 135 149. 124. Ross, C. E. and Mirowsky, J. (1979) A comparison of life event weighting schemes: change, undesirability, and effect proportional indices. Journal of Health and Social Behavior, 20, 166 177. 125. Vinokur, A. and Selzer, M. L. (1975) Desirable versus undesirable life events: their relationship to stress and mental distress. Journal of Personality and Social Psychology, 32, 329 337. 126. Zautra, A. J. and Reich, J. W. (1983) Life events and perceptions of life quality: developments in a two factor approach. Journal of Community Psychology, 11, 121 132. 127. Dohrenwend, B. P. (1979) Stressful life events and psy chopathology: some issues of theory and method, in Stress and Mental Disorder (eds J. E. Barrett, R. M. Rose and G. L. Klerman), Raven, New York, pp. 1 15. 128. Pearlin, L. I. and Lieberman, M. A. (1979) Social sources of emotional stress, in Research in Community and Mental Health (ed. R. Simmons), JAI, Greenwich, Connecticut, pp. 217 248. 129. Modell, J. (1989) Into One’s Own: From Youth to Adulthood in the United States, 1920 1975, Univer sity of California Press, Berkeley, California. 130. Hogan, D. P. and Astone, N. M. (1986) The transition to adulthood. Annual Review of Sociology, 12, 109 130. 131. Brown, G. W. and Harris, T. O. (1978) Social Origins of Depression: A Study of Psychiatric Disorder in Women, Free Press, New York. 132. Kanner, A. D., Coyne, J. C., Schaefer, C. and Lazarus, R. S. (1981) Comparison of two modes of stress

TAKING INEQUALITY’S MEASURE

133.

134. 135. 136.

137.

138.

139.

140.

141.

142.

143.

144.

145.

measurement: daily hassles and uplifts versus major life events. Journal of Behavioral Medicine, 4, 1 39. Gersten, J. C., Langner, T. S., Eisenberg, J. G. and Simcha Fagan, O. (1977) An evaluation of the etio logical role of stressful life change events in psycho logical disorders. Journal of Health and Social Beha vior, 18, 228 244. Rubin, L. (1977) Worlds of Pain, Basic Books, New York. House, J. S. (1981) Work Stress and Social Support, Addison Wesley, Reading, Massachusetts. Thoits, P. A. (1999) Sociological approaches to mental illness, in A Handbook for the Study of Mental Health (eds. A. V. Horwitz and T. L. Schied), Cambridge University Press, New York, pp. 121 138. Wheaton, B. (1990) Life transitions, role histories, and mental health. American Sociological Review, 55, 209 223. Parcel, T. L. and Menaghan, E. G. (1990) Maternal working conditions and child verbal facility: studying the intergenerational transmission of inequality from mothers to young children. Social Psychology Quar terly, 53, 132 147. Anehensel, C. S., Pearlin, L. I., Mullan, J. T. et al. (1995) Profiles in Caregiving: The Unexpected Career, Academic Press, New York. Monroe, S. M. (2008) Modern approaches to concep tualizing and measuring human life stress. Annual Review of Clinical Psychology, 4, 33 52. Brown, G. W. (1974) Meaning, measurement, and stress of life events, in Stressful Life Events: Their Nature and Effects (eds B. S. Dohrenwend and B. P. Dohrenwend), John Wiley & Sons, Inc., New York, pp. 217 243. Brown, G. W. (1989) Life event and measurement, in Life Events and Illness (eds G. W. Brown and T. O. Harris), Guildford Press, London and New York, pp. 3 45. Pearlin, L. I. (1999) Stress and mental health: a con ceptual overview, in A Handbook for the Study of Mental Health (eds A. V. Horwitz and T. L. Scheid), Cambridge University Press, New York, pp. 161 175. Langner, T. S. and Michael, S. T. (1963) The Midtown Manhattan Study. vol. 2, Life Stress and Mental Health, Free Press, New York. Bentall, R. P. and Ferneyhough, C. (2008) Social predictors of psychotic experiences: specificity and psychological mechanisms. Schizophrenia Bulletin,

146.

147.

148.

149.

150.

151.

152.

153.

154.

155.

156.

361

published online August 14, DOI: 10.1093/schbul/ sbn103. Turner, R. J. and Wheaton, B. (1995) Checklist mea surement of life events, in Measuring Stress: A guide for Health and Social Scientists (eds S. Cohen, R. C. Kessler and L. U. Gordon), Oxford University Press, Oxford, pp. 40 85. Gersten, J. C., Langner, T. S., Eisenberg, J. C. and Orzek, L. (1974) Child behavior and life events: undesirable change or change per se? in Stressful Life Events: Their Nature and Effects (eds B. S. Dohren wend and B. P. Dohrenwend), John Wiley & Sons, Inc., New York, pp. 159 170. Hammen, C. (1991) Generation of stress in the course of unipolar depression. Journal of Abnormal Psychol ogy, 100, 555 561. Dohrenwend, B. P., Raphael, K. G., Schwartz, S. et al. (1993) The structured event probe and narrative rating method (SEPRATE) for measuring stressful life events, in Handbook of Stress: Theoretical and Clinical Aspects, 2nd edn (eds L. Golberger and S. Breznitz), Free Press, New York, pp. 174 199. Harris, T. (2001) Recent developments in understand ing the psychosocial aspects of depression. British Medical Bulletin, 57, 17 32. Herman, D. B., Susser, E. S., Struening, E. L., Link, B.G. (1997) Adverse child experiences: Are they risk factors for adult homelessness? American Journal of Public Health, 87, 249 255. Craig, T. K. J. and Hodson, S. (1998) Homeless youth in London: I. Childhood antecedents and psy chiatric disorder. Psychological Medicine, 28, 1379 1388. Bruce, M. L. (1990) Socioeconomic status and psy chiatric disorders. Current Opinion in Psychiatry, 3, 696 699. Dohrenwend, B. P. (1990) Socioeconomic status (SES) and psychiatric disorders. Social Psychiatry and Psychiatric Epidemiology, 25, 41 47. Grant, K. E., Compas, B. E., Thurm, A. E. et al. (2004) Stressors and child and adolescent psychopathology: measurement issues and prospective effects. Journal of Clinical Child and Adolescent Psychology, 33, 412 425. Kessler, R. C., McGonagle, K. A., Zhao, S. et al. (1994) Lifetime and 12 month prevalence of DSM III R psychiatric disorders in the United States: results from the National Comorbidity Survey. Archives of General Psychiatry, 51, 8 19.

362

SOCIAL CONSEQUENCES AND RESPONSES

157. Kessler, R. C., Chiu, W. T., Demier, O. and Walters, E. E. (2005) Prevalence, severity, and comorbidity of 12 month DSM IV disorders in the National Comorbidity Survey Replication. Archives of General Psychiatry, 62, 617 627. 158. Dohrenwend, B. P. and Schwartz, S. (1995) Socio economic status and psychiatric disorders. Current Opinion in Psychiatry, 82, 138 141. 159. Thoits, P. A. (1981) Undesirable life events and psy chophysiological distress: a problem of operational confounding. American Sociological Review, 46, 97 109. 160. Hammen, C. (2005) Stress and depression. Annual Review of Clinical Psychology, 1, 293 319. 161. Monroe, S. M. and Harness, K. L. (2005) Life stress, the ‘kindling’ hypothesis, and the recurrence of depression: considerations from a life stress perspec tive. Psychological Review, 112, 417 445. 162. Olson, K. (2001) Distributive justice and the politics of difference. Critical Horizons, 2, 5 32. 163. Lareau, A. (2003) Unequal Childhoods, University of California Press, Berkeley, California. 164. Dressler, W. W., Dos Santos, J. E. and Balieiro, M. C. (1996) Studying diversity and sharing in culture: an example of lifestyle in Brazil. Journal of Anthropo logical Research, 52, 331 353. 165. Dressler, W. W. and Bindon, J. R. (2000) The health consequences of cultural consonance: cultural dimen sions of lifestyle, social support, and arterial blood pressure in an African American community. Amer ican Anthropologist, 102, 244 260. 166. Erikson, K. (1976) Everything in Its Path, Simon & Schuster, New York. 167. Appadurai, A. (2004) The capacity to aspire: culture and the terms of recognition, in Culture and Public Action (eds V. Rao and M. Walton), Stanford University, Stanford, California. 168. Lutfey, K. and Freese, J. (2005) Toward some funda mentals of fundamental causality: socioeconomic sta tus and health in the routine clinic visit for diabetes. American Journal of Sociology, 110, 1326 1372. 169. Dohrenwend, B. S., Dohrenwend, B. P., Dodson,M. and Shrout, P. E. (1984) Symptoms, hassles, social supports and life events: the problem of confounded measures. Journal of Abnormal Psychology, 93, 222 230. 170. Eaton, W. W. and Lasry, J. C. (1978) Mental health and occupational mobility in a group of immigrants. Social Science and Medicine, 12, 53 58.

171. Eaton, W. W. (1985) The epidemiology of schizo phrenia. Epidemiological Reviews, 7, 105 126. 172. Eaton, W. W. and Muntaner, C. (1999) Social strati fication and mental disorder, in A Handbook for the Study of Mental Health (eds A. V. Horwitz and T. L. Scheid), Cambridge University Press, New York, pp. 259 283. 173. Dohrenwend, B. P. and Dohrenwend, B. S. (1969) Social Status and Psychological Disorder: A Causal Inquiry, John Wiley & Sons, Inc., New York. 174. Dohrenwend, B. P., Levav, I., Shrout, P. E. et al. (1992) Socioeconomic status and psychiatric disorders: the causation selection issue. Science, 255, 946 952. 175. Waters, M. (2000) Black Identities: West Indian Immigrant Dreams and American Realities, Harvard University Press, Cambridge, Massachusetts. 176. Williams, D. R., Hector, M., Gonzalez, H. M. et al. (2007) Prevalence and distribution of major depressive disorder in African Americans, Caribbean blacks, and non Hispanic whites: results from the National Survey of American Life. Archives of General Psychiatry, 64 (3), 305 315. 177. Fraser, N. (2000) Rethinking recognition. New Left Review, 3 (May June), 107 120. 178. Karlsen, S., Nazroo, J. Y., McKenzie, K., Bhui, K. and Weich, S. (2005) Racism, psychosis and common mental disorder among ethnic minority groups in England. Psychological Medicine, 35, 1795 1803. 179. Tanur, J. (ed.) (1992) Questions about Questions: Inquiries into the Cognitive Bases of Surveys, Russell Sage, New York. 180. Schwarz, N. (2007) Cognitive aspects of survey meth odology. Applied Cognitive Psychology, 21, 277 287. 181. Dohrenwend, B. P., Link, B.G., Kern, R. et al. (1990) Measuring life events: the problem of variability within event categories. Stress Medicine, 6, 179 187. 182. Briggs, C. (1986) Learning How to Ask, Cambridge University Press, New York. 183. Monroe, S. M. and McQuaid, J. R. (1994) Measuring life stress and assessing its impact on mental health, in Stress and Mental Health: Contemporary Issues and Prospects for the Future (eds W. R. Avison and I. H. Gotlib), Plenum, New York, pp. 43 73. 184. Southwick, S. M., Morgan III, C. A., Nicolau, A. L. and Charney, D. S. (1997) Consistency of memory for combat related traumatic events in veterans of Opera tion Desert Storm. American Journal of Psychiatry, 154, 173 177.

TAKING INEQUALITY’S MEASURE

185. Kihlstrom, J. F., Eich, E., Sandbrand, D. and Tobias, B. A. (1999) Emotion and memory: implications for self report, in The Science of Self Report: Implications for Research and Practice (eds A. A. Stone, C. A. Bachrach, J. B. Jobe et al.), Lawrence Erlbaum, Mahwah, New Jersey. 186. Hatch, L. and Dohrenwend, B. P. (2007) Distribution of traumatic and other stressful life events by race/ ethnicity, gender, SES and age: a review of the research. American Journal of Community Psychol ogy, 40, 313 332. 187. Bifulco, A., Brown, G. W., Lillie, A. and Jarvis, J. (1997) Memories of childhood and neglect: corrobora tion in a series of sisters. Journal of Child Psychology and Psychiatry, 38, 365 374. 188. Dohrenwend, B. P. (2006) Inventorying stressful life events as risk factors for psychopathology: toward resolution of the problem of intracategory variability. Psychological Bulletin, 132, 477 495. 189. Gorman, D. M. (1993) A review of studies comparing checklist with interview methods of data collection in life event research. Behavioral Medicine, 19, 66 73. 190. Thoits, P. A. (1995) Stress, coping, and social support processes: Where are we? What next? Journal of Health and Social Behavior, 36, Extra Issue, 53 79. 191. Paykel, E. S. (2001) The evolution of life events research in psychiatry. Journal of Affective Disorders, 62, 141 149. 192. Brown, G. W. and Harris, T. O. (1978) Social Origins of Depression: A Study of Psychiatric Disorder in Women, Free Press, New York. 193. Wethington, E., Brown, G. W. and Kessler, R. C. (1995) Interview measurement of stressful life events, in Measuring Stress: A Guide for Health and Social Scientists (eds S. Cohen, R. C. Kessler and L. U. Gordon), Oxford University Press, Oxford, pp. 59 79. 194. Harnish, O. D., Aseltine, R. H. and Gore, S. (2000) Resolution of stressful experiences as an indicator of coping effectiveness in young adults: an event history analysis. Journal of Health and Social Behavior, 41, 121 136. 195. Duggal, S., Malkoff Schwartz, S., Birmaher, B. et al. (2000) Assessment of life stress in adolescents: self report versus interview methods. Journal of the American Academy of Child and Adolescent Psychia try, 39, 445 451. 196. McQuaid, J. R., Monroe, S. M., Roberts, J. F. et al. (2000) A comparison of two life stress assessment approaches: prospective prediction of treatment

197.

198.

199.

200.

201.

202.

203. 204. 205.

206. 207.

208. 209.

210.

363

outcome in recurrent depression. Journal of Abnormal Psychology, 109, 787 791. Brown, G. W., Bhrolchain, M. N. and Harris, T. (1975) Social class and psychiatric disturbance among women in an urban population. Sociology, 2, 225 254. Kessler, R. C. and McLeod, J. D. (1984) Sex differ ences in vulnerability to undesirable life events. Amer ican Sociological Review, 49, 620 631. Brown, G. W., Harris. T. O. and Hepworth, C. (1995) Loss, humiliation and entrapment among women developing depression: a patient and non patient com parison. Psychological Medicine, 25, 7 21. Stueve, A., Dohrenwend, B. P. and Skodol, A. E. (1998) Relationships between stressful life events and episodes of major depression and nonaffective psy chotic disorders. Selected results from a New York risk factor study, in Adversity, Stress, and Psychopathol ogy (ed. B. P. Dohrenwend), Oxford University Press, New York, pp. 341 357. Breslau, N., Kessler, R. C., Chilcoat, H. D. et al. (1998) Trauma and posttraumatic stress disorder in the com munity. Archives of General Psychiatry, 55, 626 632. Breslau, N., Davis, G. C., Adreski, P. and Peterson, E. (1991) Traumatic events and posttraumatic stress dis order in an urban population of young adults. Archives of General Psychiatry, 48, 216 222. Hopper, K. (2003) Reckoning with Homelessness, Cornell University Press, Ithaca, New York. Garraty, J. (1978) Unemployment in History, Harper, New York. Kumar, K. (1988) From work to employment to unemployment, in On Work: Historical, Comparative and Theoretical Approaches (ed. R. E. Pahl), Basil Blackwell, New York, pp. 138 164. Folbre, N. (2001) The Invisible Heart: Economics and Family Values, The New Press. Eisenberg, P. and Lazarsfeld, P. F. (1938) The psycho logical effects of unemployment. Psychological Bul letin, 35, 258 390. Elder, G. H. (1974) Children of the Great Depression, University of Chicago Press, Chicago, Illinois. Perucci, R. and Perucci, C. (1990) Unemployment and mental health: research and policy implications, in Research in Community and Mental Health: Mental Disorder in Social Context (ed. J. R. Greenley), JAI, Greenwich, Connecticut, pp. 237 264. Bhugra, D. (1993) Unemployment, poverty and homelessness, in Principles of Social Psychiatry

364

211.

212.

213.

214.

215. 216. 217. 218.

219.

220. 221. 222.

223.

224.

225.

SOCIAL CONSEQUENCES AND RESPONSES

(eds D. Bhugra and J. Leff), Blackwell, Oxford, pp. 355 382. Fryer, D. (1995) Benefit Agency? Labour Market Disadvantage, Deprivation and Mental Health. The C.S. Myers Lecture 1994. The Psychologist, June, 265 272. Fryer, D. and Ullah, P. (1987) Unemployed People: Social and Psychological Perspectives, Open Univer sity Press, Berkshire. Engberson, G., Schuyt, K., Timmer, J. and van Waar den, F. (1993) Cultures of Unemployment, Westview Press, Oxford. Kronauer, M. and Vogel, B. (1993) Experiences with unemployment today: between temporary opportunity and social exclusion. International Journal of Politi cal Economy, 23, 70 94. Wilson, W. J. (1996) When Work Disappears: The World of the New Urban Poor, Knopf, New York. Lewis, A. (1935) Neurosis and unemployment. Lancet, 226, 293 297. Bakke, E. W. (1940) Citizens Without Work, Yale University Press, New Haven, Connecticut. Bakke, E. W. (1940) Unemployed Worker: A Study of the Task of Making a Living without a Job, Yale University Press, New Haven, Connecticut. Bremer, W. W. (1984) Depression Winters: New York Social Workers and the New Deal, Temple University, Philadelphia, Pennsylvania. McElvaine, R. S. (1984) The Great Depression, Crown, New York. Cockerham, W. (1999) Health and Social Change in Russia and Eastern Europe, Routledge, New York. Stuckler, D., King, L. and McKee, M. (2009) Mass privatization and the post communist mortality crisis: a cross national analysis. The Lancet, 373, 399 407. Rosenfield, S. (1989) The effects of women’s employ ment: personal control and sex differences in mental health. Journal of Health and Social Behavior, 30, 77 91. Lennon, M. C. (1994) Women, work and well being: the importance of work conditions. Journal of Health and Social Behavior, 35, 235 247. Lennon, M. C. (1998) Domestic arrangements and depression: an examination of household labor, in Adversity, Stress, and Psychopathology (ed. B. P. Dohrenwend), Oxford University Press, New York, pp. 409 421.

226. Pahl, R. E. (ed.) (1988) On Work: Historical, Com parative and Theoretical Approaches, Blackwell, London. 227. Offe, C. and Heinze, R. G. (1992) Beyond Employ ment: Time, Work and the Informal Economy, Temple University Press, Philadelphia, Pennsylvania. 228. Tilly, C. (1996) Half a Job, Temple University Press, Philadelphia, Pennsylvania. 229. Robinson, J. (1936) Disguised unemployment. Economic Journal, 46, 225 237. 230. Kaufman, H. G. (1982) Professionals in Search of Work, John Wiley & Sons, Inc., New York. 231. Burris, B. H. (1983) The human effects of under employment. Social Problems, 31, 96 110. 232. Dooley, D. and Catalano, R. (1980) Economic change as a cause of behavioral disorder. Psychological Bul letin, 87, 450 468. 233. Jahoda, M. (1982) Employment and Unemployment: A Social Psychological Analysis, Cambridge Univer sity Press, New York. 234. Warr, P. (1987) Work Unemployment and Mental Health, Clarendon, Oxford. 235. Whitehead, M. (1990) The health divide, in Inequal ities in Health (eds P. Townsend and N. Davidson), Penguin, London, pp. 222 356. 236. Dooley, D., Fielding, J. and Levi, L. (1996) Health and unemployment. Annual Review of Public Health, 17, 449 465. 237. Fryer, D. (1997) International perspectives on youth unemployment and mental health: some central issues. Journal of Adolescence, 20, 333 342. 238. Dooley, D., Prause, J. and Ham Rowbottom, K. A. (2000) Underemployment and depression: longitudi nal relationships. Journal of Health and Social Beha vior, 41, 421 436. 239. Taris, T. W. (2002) Unemployment and mental health: a longitudinal perspective. International Journal of Stress Management, 9, 43 57. 240. Kelvin, P. and Jarrett, J. E. (1985) Unemployment: Its Social Psychological Effects, Cambridge University Press, Cambridge. 241. Leeflang, R. L. I., Klein Hesselink, D. J. and Spruit, I. P. (1992) Health effects of unemployment I. Long term unemployed men in a rural and an urban setting. Social Science and Medicine, 34, 341 350. 242. Braithwaite, A. and Garcia, S. (1985) Depression in the young unemployed and those on Youth Opportu

TAKING INEQUALITY’S MEASURE

243.

244.

245.

246.

247. 248. 249.

250.

251. 252.

253.

254.

255.

nity Schemes. British Journal of Medical Psychology, 58, 67 74. McKee, L. and Bell, C. (1986) His unemployment, her problem: the domestic and marital consequences of male unemployment, in The Experience of Unemploy ment (eds S. Allen, S. Waton, K. Purcell and S. Wood), Macmillan, Basingstroke. Jones, F. and Fletcher, B. C. (1993) An empirical study of occupational stress transmission in working couples. Human Relations, 46, 881 903. Liem, R. and Liem, J. H. (1988) Psychological effects of unemployment on workers and their families. Journal of Social Issues, 44, 87 105. McLoyd, V. C. (1989) Socialization and development in a changing economy: the effects of paternal job and income loss on children. American Psychologist, 44, 293 302. Oakley, C. A. (1936) Some psychological problems of a depressed area. Human Factor, 10, 393 404. Komarovsky, M. (1940) The Unemployed Man and His Family, Dryden, New York. Atkinson, T., Liem, R. and Liem, L. H. (1986) The social costs of unemployment: implications for social support. Journal of Health and Social Behavior, 27, 317 331. Whelan, C. T. (1992) The role of income, life style deprivation and financial straits in mediating the impact of unemployment on psychological distress: evidence from the Republic of Ireland. Journal of Occupational and Organizational Psychology, 65, 331 344. Newman, K. S. (1988) Falling from Grace, Free Press, New York. Hamilton, V., Broman, C. L., Hoffman, W. and Renner, D. (1990) Hard times and vulnerable people: initial effects of plant closings on autoworkers’ mental health. Journal of Health and Social Behavior, 31, 123 140. Viinam€aki, H., Koskela, K., Niskanen, L. et al. (1993) Unemployment and mental well being: a factory clo sure study in Finland. Acta Psychiatrica Scandinavia, 88, 429 433. Fenwick, R. and Tausig, M. (1994) The macroeco nomic context of job stress. Journal of Health and Social Behavior, 35, 266 282. Strully, K. W. (2009) Job loss and health in the U.S. labor market. Demography, 46, 221 246.

365

256. Liebow, E. (1967) Tally’s Corner, Little, Brown, Boston, Massachusetts. 257. Rubin, L. B. (1976) Worlds of Pain: Life in the Work ing Class Family, Basic, New York. 258. Mishel, L., Bernstein, J. and Schmitt, J. (1999) The State of Working America, 1998 1999, ILR Press, Ithaca, New York. 259. Burgard, S. A., Brand, J. E. and House, J. S. (2009) Perceived job insecurity and worker health in the United States. Social Science and Medicine, 69, 777 785. 260. Farber, H. S. (2005) What do we know about job loss in the United States? Federal Reserve Bank of Chicago. Economic Perspectives, 2Q, 13 27, www.chicagofed. org/publications/economicperspectives/ ep 2qtr2005 part2 farber.pdf. 261. Cobb, S. and Kasl, S. V. (1977) Termination: The Consequences of Job Loss, U.S. DHEW, Cincinatti, Ohio. 262. Hartley, J. F., Jacobson, D., Klandermans, B. and van Vuuren, T. (1991) Job Insecurity: Coping with Jobs at Risk, Sage, London. 263. Eisenberg, P. and Lazarsfeld, P. F. (1938) The psycho logical effects of unemployment. Psychological Bul letin, 35, 358 390. 264. Dooley, D. (2003) Unemployment, underemployment, and mental health: conceptualizing employment status as a continuum. American Journal of Community Psychology, 32, 9 20. 265. Wilson, W. J. (1987) The Truly Disadvantaged, Uni versity of Chicago Press, New York. 266. Ehrenreich, B. (2001) Nickel and Dimed, Henry Holt, New York. 267. Shipler, D. K. (2004) The Working Poor, Knopf, New York. 268. Granovetter, M. S. (1973) The strength of weak ties. American Journal of Sociology, 78, 1360 1380. 269. Granovetter, M. S. (1983) The strength of weak ties: a network theory revisited. Sociological Theory, 1, 201 233. 270. McLeod, J. (1995) Ain’t No Makin’ It: Aspirations and Attainment in a Low Income Neighborhood, Expanded edn, Westview Press, Boulder, Colorado. 271. Royster, D.A. (2003) Race and the Invisible Hand: How White Networks Exclude Black Men from Blue Collar Jobs, University of California Press, Berkeley, California.

366

SOCIAL CONSEQUENCES AND RESPONSES

272. Newman, K. S. (1999) No Shame in My Game, Knopf, New York. 273. Smith, S. (2007) Lone Pursuit: Distrust and Defensive Individualism among the Black Poor, Russell Sage, New York. 274. Jahoda, M. and Rush, H. (1980) Work, Employment and Unemployment. Occasional Papers Series, Number 12, University of Sussex: Science Policy Research Unit. 275. Room, R. (1984) Alcohol and ethnography: a case of problem deflation? Current Anthropology, 25, 169 178. 276. Dooley, D., Catalano, R. and Hough, R. (1992) Unem ployment and alcohol disorders in 1910 and 1990: drift versus social causation. Journal of Occupational and Organizational Psychology, 65, 277 290. 277. Scheper Hughes, N. (1979) Saints, Scholars and Schi zophrenics, University of California Press, Berkeley, California. 278. Berger, J. (1992) Into Their Labours, Pantheon, New York. 279. Bourdieu, P. (2008) The Bachelors’ Ball: The Crisis of Peasant Society in Bearn, University of Chicago Press, Chicago, Illinois. 280. Scheper Hughes, N. (2001) Saints, Scholars and Schizo phrenics (Anniversary edition, updated and expanded), University of California Press, Berkley, California. 281. Fullilove, M. (2005) Root Shock, Ballantine, New York. 282. Ingleby, D. (ed.) (2004) Forced Migration and Mental Health, Springer, New York. 283. Schweitzer, R. and Steel, A. (2008) Researching refu gees: methodological and ethical considerations, in Doing Cross Cultural Research (ed. P. Liamputtong), Springer, New York, pp. 87 101. 284. Link, B. G., Susser, E., Stueve, A. et al. (1994) Life time and five year prevalence of homelessness in the United States. American Journal of Public Health, 84, 1907 1912. 285. Keyssar, A. (1986) Out of Work: The First Century of Unemployment in Massachusetts, Cambridge Univer sity Press, New York. 286. Hopper, K., Jost, J., Hay, T. et al. (1997) Homeless ness, severe mental illness and the institutional circuit. Psychiatric Services, 48, 659 665. 287. Shinn, M., Weitzman, B. C., Stojanovic, D. et al. (1998) Predictors of homelessness from shelter request to housing stability among families in New

288.

289.

290.

291.

292.

293.

294.

295.

296.

297.

York City. American Journal of Public Health, 88, 1651 1657. Culhane, D. P., Dejowski, E. F., Iban˜ez, J. et al. (1994) Public shelter admission rates in Philadelphia and New York City: the implications of turnover for sheltered population counts. Housing Policy Debate, 5, 107 140. Kuhn, R. and Culhane, D. P. (1998) Applying cluster analysis to test a typology of homelessness by pattern of shelter utilization. American Journal of Community Psychology, 29, 207 232. Burt, M. R., Aron, L. Y. and Lee, E. (2001) Helping America’s Homeless: Emergency Shelter or Affordable Housing? Urban Institute, Washington, DC. Kertesz, S. G., Larson, M. J., Horton, N. et al. (2005) Homeless chronicity and health related quality of life trajectories among adults with addictions. Medical Care, 43, 574 585. Caton, C., Wilkins, C. and Anderson, J. (2007) People who experience long term homelessness: characteris tics and interventions, in Toward Understanding Homelessness, The 2007 National Symposium on Homelessness Research. Washington, DC: DHHS, DHUD (eds D. Dennis, G. Locke and J. Khadduri), pp. 4 1 4 44. Barrow, S., Soto, G. and Cordova, P. (2004) Final Report on the Evaluation of the Closer to Home Initiative. Corporation for Supportive Housing, New York. Barrow, S. M., Herman, D. B., Cordova, P. and Struen ing, E. L. (1999) Mortality among homeless shelter residents in New York City. American Journal of Public Health, 89, 529 534. Culhane, D. P., Gollub, E., Kuhn, R. and Shpaner, M. (2001) The co occurrence of AIDS and home lessness: results from the integration of administrative databases for AIDS surveillance and public shelter utilisation in Philadelphia. Journal of Epidemiology and Community Health, 55, 515 520. Robertson, M. J., Clark, R. A., Charlebois, E. D. et al. (2004) HIV seroprevalence among homeless and mar ginally housed adults in San Francisco. American Journal of Public Health, 94, 1207 1217. Kerker, B., Bainbridge, J., Li, W. et al. (2005) The Health of Homeless Adults in New York City: A Report from the New York City Departments of Health and Mental Hygiene and Homeless Services. New York City Departments of Health and Mental Hygiene and Homeless Services, New York.

TAKING INEQUALITY’S MEASURE

298. Koegel, P., Burnam, M. A. and Baumohl, J. (1996) The causes of homelessness, in Homelessness in America (ed. J. Baumohl), Oryx, Phoenix, Arizona, pp. 24 33, 225 226. 299. Sullivan, G., Burnam, A. and Koegel, P. (2000) Path ways to homelessness among the mentally ill. Social Psychiatry and Psychiatric Epidemiology, 35, 444 450. 300. Groth, P. (1994) Living Downtown, University of California Press, Berkeley, California. 301. Liebow, E. (1993) Tell Them Who I Am, Free Press, New York. 302. Duneier, M. (1999) Sidewalk, Farrar, Straus, Giroux, New York. 303. Baumohl, J. (ed.) (1996) Homelessness in America, Oryx, Phoenix, Arizona. 304. Burt, M. R., Pearson, C. L. and Montgomery, A. E. (2006) Homelessness: Prevention, Strategies and Effectiveness, Nova Science, Hauppauge, New York. 305. Shinn, M. and Weitzman, B. C. (eds) (1990) Urban homelessness. Journal of Social Issues, 46 (4), Special Issue. 306. Di Leonardo, M. (1987) The female world of cards and holidays: women, families, and the work of kinship. Signs, 12, 440 453. 307. Barrow, S. M. and Lewinski, T. (2009) Contexts of mother child separations in homeless families. Analyses of Social Issues and Public Policy. Published online: 8 April 2009, 8:52AM. DOI: 10.1111/j.1530 2415.2009.01171.x. 308. Lehman, A. F. and Cordray, D. S. (1993) Prevalence of alcohol, drug, and mental disorders among the home less: one more time. Contemporary Drug Problems, 20, 355 381. 309. Toro, P. A., Dworsky, A. and Fowler, P. J. (2007) Homeless Youth in the United States: Recent Research Findings and Intervention Approaches, Paper prepared for the National Symposium on Homelessness Research, 1 2 March 2007, Washington, DC. 310. Robertson, M. J. and Toro, P. A. (1999) Homeless youth: research, intervention and policy, in Practical Lessons: The 1998 National Symposium on Home lessness Research, Washington, DC: DHUD and DHSS (eds L. B. Fosburg and D. L. Dennis), pp. 3 1 3 32. 311. Stewart, A. J., Steiman, M., Cauce, A. M. et al. (2004) Victimization and posttraumatic stress disorder

312.

313.

314.

315.

316.

317.

318.

319.

320.

321.

322.

367

among homeless adolescents. Journal of the Amer ican Academy of Child and Adolescent Psychiatry, 43, 325 331. Tyler, K., Whitbeck, L., Hoyt, D. and Cauce, A. (2004) Risk factors for sexual victimization among male and female homeless and runaway youth. Journal of Inter personal Violence, 19 (5), 503 520. Rog, D. J. and Buckner, J. C. (2007) Homeless families and children. Paper prepared for the National Sympo sium on Homelessness Research, 1 2 March 2007, Washington, D.C. Masten, A. S., Miliotis, D., Graham Bermann, S. A. et al. (1993) Children in homeless families: risks to mental health and development. Journal of Consulting and Clinical Psychology, 61, 335 343. Schteingart, J. S., Molnar, J., Klein, T. P. et al. (1995) Homelessness and child functioning in the context of risk and protective factors moderating child outcomes. Journal of Clinical Child Psychology, 24, 320 331. Buckner, J. C. and Bassuk, E. L. (1997) Mental dis orders and service utilization among youths from homeless and low income housed families. Journal of the American Academy of Child and Adolescent Psychiatry, 36, 890 900. Bassuk, E. L., Weinreb, L. F., Dawson, R. et al. (1997) Determinants of behavior in homeless and low income housed preschool children. Pediatrics, 100, 92 100. Buckner, J. C., Bassuk, E. L., Weinreb, L. and Brooks, M. (1999) Homelessness and its relation to the mental health and behavior of low income school aged chil dren. Developmental Psychology, 35, 246 257. Buckner, J. C., Bassuk, E. L. and Weinreb, L. F. (2001) Predictors of academic achievement among homeless and low income housed children. Journal of School Psychology, 39, 45 69. Huntington, N., Buckner, J. C. and Bassuk, E. C. (2008) Adaptation in homeless children: an empirical examination using cluster analysis. American Beha vioral Scientist, 51, 737 755. Shinn, M., Knickman, J. R. and Weitzman, B. C. (1991) Social relationships and vulnerability to becoming homeless among poor families. American Psychologist, 46, 1180 1187. Toohey, S. M., Shinn, M. and Weitzman, B. C. (2004) Social networks and homelessness among women heads of household. American Journal of Community Psychology, 33, 7 20.

368

SOCIAL CONSEQUENCES AND RESPONSES

323. Shinn, M., Schteingart, J. S., Chioke Williams, N. P. et al. (2008) Long term associations of homelessness with children’s well being. American Behavioral Scientist, 51, 789 809. 324. Buckner, J. C., Beardslee, W. R. and Bassuk, E. L. (2004) Exposure to violence and low income chil dren’s mental health: direct, moderated, and mediated relations. American Journal of Orthopsychiatry, 74, 413 423. 325. Susser, E. S., Line, S. P. and Conover, S. A. (1991) Risk factors for homelessness among patients admitted to a state mental hospital. American Journal of Psychiatry, 148, 1659 1664. 326. Hopper, K. and Baumohl, J. (1994) Held in abeyance: rethinking homelessness and advocacy. American Behavioral Scientist, 37, 522 552. 327. Rutter, M. (2005) How the environment affects mental health. British Journal of Psychiatry, 186, 4 6. 328. Koegel, P. (1992) Through a different lens: an anthro pological perspective on the homeless mentally ill. Culture, Medicine, and Psychiatry, 16, 1 22. 329. Sosin, M., Piliavin, I. and Westerfelt, H. (1990) Toward a longitudinal analysis of homelessness. Journal of Social Issues, 46, 157 174. 330. Susser, E., Valencia, E., Conover, S. et al. (1997) Preventing recurrent homelessness among mentally ill men: a ‘critical time’ intervention after discharge from a shelter. American Journal of Public Health, 87, 256 262. 331. Tsemberis, S., Gulcur, L. and Nakae, M. (2004) Hous ing first, consumer choice, and harm reduction for homeless individuals. American Journal of Public Health, 94, 651 656. 332. Gallobardes, B., Shaw, M., Lawlor, D. et al. (2006) Indicators of social position (Part 1). Journal of Epidemiology and Community Health, 60, 7 12. 333. Taylor, S. E. and Repetti, R. L. (1997) Health psychology: What is an unhealthy environment and how does it get under the skin? Annual Review of Psychology, 48, 411 447. 334. Lynch, J. W. and Kaplan, G. A. (2000) Socioeconomic position, in Social Epidemiology (eds L. F. Berkman and I. Kawachi), Oxford University Press, New York, pp. 13 35. 335. Grusky, D. B. and Ravi Kanbur, R. (eds) (2006) Poverty and Inequality, Stanford University Press, Palo Alto, California.

336. Moore, S., Shiell, A., Hawe, P. and Haines, V. A. (2005) The privileging of communitarian ideas: cita tion practices and the translation of social capital into public health research. American Journal of Public Health, 95, 1330 1337. 337. Davey Smith, G., Hart, C., Blane, D. et al. (1997) Lifetime socio economic position and mortality. Prospective observational study. British Medical Jour nal, 314, 547 552. 338. Fisher, H. and Craig, T. (2008) Childhood adversity and psychosis, in Society and Psychosis (eds C. Morgan, K. McKenzie and P. Fearon), Cambridge University Press, New York, pp. 95 111. 339. Myin Germeys, I. and van Os, J. (2008) Adult adver sity: Do early environment and genotype create lasting vulnerabilities for adult social adversity in psychosis? in Society and Psychosis (eds C. Morgan, K. McKen zie, and P. Fearon), Cambridge University Press, New York, pp. 127 142. 340. Sampson, R. J., Morenoff, J. D. and Gannon Rowley, T. (2002) Assessing ‘neighborhood effects’: social processes and new directions in research. Annual Review of Sociology, 28, 443 478. 341. Kwate, N. O. A. (2008) Fried chicken and fresh apples: racial segregation as a fundamental cause of fast food density in black neighborhoods. Health and Place, 14, 32 44. 342. Cantor Graae, E. and Selten, J. P. (2005) Schizophre nia and migration: a meta analysis and review. American Journal of Psychiatry, 162, 12 24. 343. Rogers, A. and Pilgrim, D. (2003) Mental Health and Inequality, Palgrave Macmillan, New York. 344. Friedl, L. (2009) Mental Health, Resilience and Inequalities, World Health Organization Europe, WHO Regional Office for Europe, Copenhagen. 345. Silver, H. (2006) Social exclusion, in Blackwell Encyclopedia of Sociology (ed. G. Ritzer), Blackwell, London, pp. 4411 4413. 346. Sayce, L. (2000) From Psychiatric Patient to Citizen: Overcoming Discrimination and Social Exclusion, Palgrave Macmillan, London. 347. Radoki, C. (1999) A capital assets framework for analysing household livelihood strategies: implica tions for policy. Development Policy Review, 17, 315 342. 348. Rao, V. and Walton, M. (eds) (2004) Culture and Public Action, Stanford University Press, Stanford, California.

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349. Fraser, N. and Olson, K. (2008) Adding Insult to Injury: Debating Redistribution, Recognition and Representation, Verso, London. 350. White, S. and Ellison, M. (2007) Wellbeing, livelihoods and resources in social practice, in Wellbeing in Deve loping Countries (eds I. Gough and J. A. McGregor), Cambridge University Press, New York, pp. 157 175. 351. Alkire, S. (2002) Valuing Freedoms: Sen’s Capabil ities Approach and Poverty Reduction, Oxford University Press, Oxford.

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352. Comin, F., Qizilbash, M. and Alkire, S. (eds) (2008) The Capability Approach: Concepts, Measures and Applications, Cambridge University Press, New York. 353. Hopper, K. (2007) Rethinking social recovery in schizophrenia: what a capabilities approach might offer. Social Science and Medicine, 65, 868 879. 354. Ware, N., Hopper, K., Tugenberg, T. et al. (2007) Connectedness and citizenship: redefining social integration. Psychiatric Services, 58, 469 474.

28 Health economics and psychiatry: the pursuit of efficiency Martin Knapp1 and Jennifer Beecham2 1

Personal Social Services Research Unit, London School of Economics, London and Centre for the Economics of Mental Health, King' s College London, London, UK 2 Personal Social Services Research Unit, University of Kent, Canterbury and Personal Social Services Research Unit, London School of Economics, London, UK

28.1

BETTER SERVICES, LOWER COSTS

Developments in social psychiatry as practised obviously do not stem solely from changes in the skills or preferences of psychiatrists. Indeed, in their gloomier moments, psychiatrists may believe that most of their actions and reactions are influenced more by the exigencies of social, economic, demographic, ideological or political imperatives than by the medical and social needs of the people they treat or support or by accepted best practices. Many factors and forces combine to influence the ways that mental health systems are organized, the services and treatments they offer and the people who actually receive those supports. One of those forces is the pressure to improve value for money, efficiency or cost effectiveness. The consequences of this emphasis on efficiency are not all welcome, but it would be foolish to reject this emphasis, partly because it is never likely to go away and partly because after all a more efficient mental health system is one that will improve the

health and well-being of more individuals from the same pot of resources. ‘Efficiency’ is a term with unfortunate connotations. Although it appears to some to be self evidently a good thing, like ‘sincerity’ or ‘honesty’, just as with the pursuit of these latter virtues, there can be unattractive consequences. . . . People do not like [efficiency] carried to the extreme where it dominates all other considerations, and especially . . . where the main purposes are the humane and just treatment of people, and often of people who are having a hard time of it anyway ([1], p. 1).

What, then, is meant by efficiency? How can it be studied? These questions are addressed in this chapter. We first briefly consider the broader relevance of an economics perspective, and then outline a theoretical framework that will facilitate understanding of the concept of efficiency. We next describe the most

Principles of Social Psychiatry, second edition Edited by Craig Morgan and Dinesh Bhugra Ó 2010 John Wiley & Sons, Ltd.

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commonly used approaches to the analysis of efficiency (particularly cost-effectiveness analysis) and

28.2

provide some illustrations. The chapter concludes with some comments on what needs to be done in the future.

THE CONTRIBUTION OF ECONOMICS

Readers of this book will most often come into contact with economics via media reports of the state of the national economy, or through their everyday purchases of goods and services in the High Street, or when getting their monthly salary payment. In these ways they are exposed to economics the topic. This must be distinguished from economics the discipline [2]. Consequently, general dissatisfaction with the direction or philosophy of macroeconomic policy for a country as a whole or the level of taxation is not sufficient justification for criticizing the principles of microeconomic theory or their application in practical analysis. One does not have to agree with the economic policies of the government of the day and what they mean for price inflation, interest rates or unemployment to advocate the sensible pursuit of efficiency in a health system. Economists working in the mental health sphere are concerned partly with the economic topics of health care expenditure limits, costs, the supply of qualified labour, market forces, purchaser provider contracts and so on but more often with the application of the discipline of economics to practise and policy issues concerning health and health care. We focus on the latter in this chapter. Consequently, economics tackles a wide range of issues, and by concentrating on efficiency in this chapter we do not mean to suppose that other areas are less important. Among the social or public policy questions that economics has successfully addressed, often in collaboration with other disciplines, are the following: .

What is the true cost of care?

.

What are the outcomes of services and treatments and how do we measure them?

.

What is the relationship between resources and outcomes?

.

What are the workforce requirements of a particular service model?

.

What are the relative costs and effectiveness of alternative courses of action?

.

Why do the costs of ostensibly similar services vary so markedly?

.

Do market forces raise efficiency? Do they enhance consumer choice?

.

What are the economic consequences of an emphasis on ‘personalization’ (through personal budgets, for example)?

.

To what extent can we recoup the costs of care from charges to service users?

.

Is ‘allocation according to need’ substantially different from ‘allocation according to ability to pay’?

.

How can we fairly allocate resources between different areas of the country?

.

Is there an economic case for investment in preventive strategies?

In addressing and attempting to answer any of these questions economics cannot replace the judgements of decision makers, but it ought to be able to inform those judgements. It can help the decision maker formulate the practice or policy questions sensibly and logically, and then provide a range of answers from which the decision maker may choose, but it is obviously not the economist’s role to determine policies. Exploitation of the interplay of economic appraisal, political priorities, clinical expertise and of course the views and preferences of the people affected is usually going to be the most sensible way to proceed in a mental health system.

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28.3

373

DEFINING EFFICIENCY

The pursuit of efficiency is predicated on the assumption hardly contentious that resources are scarce relative to the demands placed upon them. There will never be enough resources to meet all of society’s needs or wants, not because members of society are greedy, prodigal or selfish, but because need is relative and not absolute. In provision of care it seems that almost every time service boundaries are pushed forward to reach more individuals or families or to serve those people better who are already supported, so more needs are revealed and more demands stimulated. Scarcity suggests that it would be prudent to make careful use of available resources, and economics has developed as the study of allocation under conditions of scarcity. Efficiency is simply one criterion for guiding or operationalizing the careful use of resources in the face of scarcity. Efficiency refers to a situation in which the allocation of a given level of resources maximizes the outcomes of a system of care (or component part thereof) or which minimizes the resource requirements to achieve specified ends. (We will define terms like outcomes and resource requirements in a moment.) Absolute efficiency is hard to conceptualize for activities with such varied objectives as mental health care. However, while it may be impossible to say what configuration represents the most efficient utilization of resources, it ought to be possible to say whether a policy or practice change results in a more efficient utilization. Relative efficiency is an accessible concept in principle and practice. Defined in even these rather general terms, a change in clinical practice or resource allocation that results in greater efficiency, without damaging clinical or other objectives, is undeniably a good thing. The crucial qualifier here is that efficiency is not, of course, the only criterion for good resource allocation. The equity criterion refers to fairness in the distribution of outcomes, access and payments across individuals or parts of a society. Most mental health systems are inequitable: they do not distribute these outcomes or responsibilities for payment fairly, but instead (wittingly or unwittingly) allow social,

economic or underlying demographic characteristics to have an influence. Hence access to, payment for or impact of evidence-based treatment are not fairly distributed by gender, ethnicity, age, language, religion, income, socioeconomic group or place of residence. The challenge when discussing equity is in deciding what is meant by ‘fair’. It would be seen by most people as ‘unfair’ if everyone in the population had exactly the same amount of support or treatment from the mental health system, because most people have no need for such support, while a few people have very considerable needs. An equitable allocation of mental health resources would therefore usually mean better access to treatment for people with greater needs, or ensuring that those with the lowest ability to pay for their treatment are charged lower amounts than those with higher incomes. These are the two most commonly discussed aspects of equity: (i) whether individual financial contributions are linked to ability to pay, indeed whether there needs to be a redistributive effort so that individuals with lower incomes contribute proportionately lower amounts, and (ii) whether access to evidence-based treatment is linked to type and level of need. Thus, the scarcity of resources necessitates a choice that should be based at least on the twin criteria of efficiency and equity, and decision makers may also want to introduce additional criteria such as autonomy, liberty and diversity. In this chapter the focus is on efficiency.

28.3.1

A theoretical framework

Most clinical research in the mental health field includes an examination of effectiveness or outcomes, based upon a description of the objectives of the intervention being studied. These objectives are of two types. Final objectives are ends in themselves, even though there will be causal connections between them, while intermediate objectives are couched in terms of means to those ends. Providing mental health services where they are needed is really an

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intermediate objective, and so too is offering a supportive, high-quality environment in a residential facility, for these are means to achieve various desired changes in, for example, the mental and physical health of individuals. The latter are final objectives in so far as they are desired for their own sake. Other objectives might include improving individual competence and independence in the activities of daily living, promoting the well-being of relatives or informal carers, and protecting the rights of other members of society. Deficiencies in respect of these objectives are generally taken to be needs, and changes along the dimensions spanned by these objectives are usually defined as outcomes (improvements, for example, are equivalent to reductions in need). This suggests a distinction between intermediate outputs and final outcomes, depending on the objectives under discussion or study. The objectives of mental health services are usually discussed by reference to hypothesized influences on outcome. Much applied research in psychiatry is designed to test the impact on users of one or more service, drug or social situation, frequently using an experimental or carefully executed quasiexperimental design to control for extraneous influences. The range of factors with a potential influence on outcomes is broad. The personal characteristics, experiences and circumstances of individuals with mental health needs will be of particular importance, but there are also the various social and family characteristics such as the quality of a care environment and the availability of support and participant opportunities. We can introduce a more specific terminology here. Resource inputs can be defined as the tangible resources such as staff, physical capital (including housing), provisions and other consumable items that go to create service packages and help achieve the desirable outcomes. Associated with each of them is a cost, this being a shorthand term and summary measure for all these resource inputs. Nonresource inputs, by contrast, are those determinants of outcomes that are neither physical nor tangible: they are embodied in the personalities, activities, attitudes and experiences of the principal actors in the mental health care system or process. For the nonresource inputs it does not make

sense to try to define a cost. (Because these nonresource inputs do not have a cost, but exert an influence on outcomes, the discussion or study of efficiency needs to include them. Some of the nonresource inputs are correlated with, and perhaps determined by, the resource inputs, but some are determined outside the care system, and these need either to be comprehensively purged from an evaluation by rigorous design or built into the analyses.) The basic assumption we are making here is that final outcomes and intermediate outputs are determined by the level and modes of combination of the many and various resource and nonresource inputs. This immediately suggests that analogies can be drawn between the provision of mental health services and the terms, concepts and tools of economics. What we have described is what the economist would recognize as a model of production, where individual health and well-being are the products or outputs. This production of welfare perspective is not suggesting that the support and treatment of people with mental health problems is mechanistic; nor does it seek to reduce the myriad interrelationships between outcomes and treatment characteristics to simple summary formulae. The influence and relevance of any one factor on individual outcomes depends on a combination of factors, the sequence in which they appear or are experienced, and the marginality of the stimulus that they bring to the care setting. The production of welfare approach thus allows us to organize or locate research on, or discussions of efficiency within, both a theoretical framework and a clinical or service delivery context. We have described it in more detail elsewhere for other social and health care services (see, for example, [3] and [4]), and in amental health context[5]. The point to stress is that the framework requires no leap of faith, no departure from the implicit ‘models’ of service delivery underpinning mental health practice and research. With this theoretical framework we can now define efficiency with more precision.

28.3.2

Definitions of efficiency

Effectiveness, as the term is conventionally employed, refers to a simple improvement in outcome following

HEALTH ECONOMICS AND PSYCHIATRY: THE PURSUIT OF EFFICIENCY

the introduction of an additional unit of input. An effective production process is simply a process that produces or achieves something desirable. A necessary but not sufficient condition for efficiency is effectiveness. A mental health service or activity cannot be efficient if it is not effective. A closely related concept is productivity, the capacity to produce, which can be simply defined as the ratio of outcome to input. As we move from effectiveness and productivity to efficiency we need to distinguish a number of component definitions. The terms employed for them are not unique, even though the concepts are widely employed. A process is technically efficient when it produces maximum outcomes from given inputs. Price efficiency is attained when the various inputs are employed in such proportions as to produce a given level of outcome at minimum cost. A technically efficient production process that is also price efficient can be called cost-effective. A cost-effective technique might not be ‘socially efficient’. Cost effectiveness indicates only the most sensible among alternative ways of doing something; it does not tell us whether we should be doing that thing in the first place. It does not, for example, tell us whether we are better allocating money to fighting global warming or improving mental health services; nor must it ever pretend that it can. Full social efficiency is achieved when net social benefits (the overall benefits to society minus the total costs to society) are maximized. The move from effectiveness through to social efficiency thus proceeds logically: effectiveness is a necessary prerequisite for technical efficiency; cost effectiveness is defined with reference to the set of all technically efficient and price efficient activities or techniques; and social efficiency builds on these lower-level concepts. One further concept has attracted attention. Target efficiency is the efficiency with which resources are allocated to and among those for whom receipt has been judged the most cost-effective method of intervention [6]. It measures the extent to which a particular principle of equity (embodied in allocation according to need or allocation according to some individually based measure of cost effectiveness) is met in practice. Thus equity

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and efficiency are of equal importance in defining target efficiency. Two dimensions can be distinguished: horizontal target efficiency, the extent to which those people believed to be in need of support or treatment actually receive it, and vertical target efficiency, the extent to which the available resources are received by those in need. Efficiency in whatever form is therefore a statement about, or measure of, the achievements of a service or policy and the resources and other factors that combine to secure them. Some of those influential factors are difficult to measure or impossible to cost including the nonresource inputs introduced earlier but they should not be overlooked. For example, an evaluation of hospital and community locations as alternative places of treatment for a particular group of individuals would either need to measure personal preferences, the social milieu of different accommodation or day settings, staff attitudes and so on, or would need to employ a research design, such as an appropriately pragmatic randomized controlled trial, which adjusted for their influences. The nonresource inputs are crucial intervening variables between the resource inputs or costs and the outcomes or effects of mental health services. We now turn our attention to the study of efficiency in practice, describing and illustrating the most common of the ‘efficiency analyses’ used today: cost benefit, cost effectiveness, cost utility and cost function analyses. These analyses generate information needed for a variety of decisions, which can be summarized in five deceptively simple questions: .

What intervention (treatment, drug, programme of support or policy approach) is more or most appropriate in given circumstances?

.

When should the intervention be provided?

.

Where should it be provided?

.

To whom should it be provided?

.

How should it be provided?

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28.4

EFFICIENCY IN PRACTICE: MEASURES AND ANALYSES

In the fifteen years since the first edition of this book, the main techniques to appraise efficiency have become far more familiar to mental health care policy makers and practitioners. In principle these techniques which we can gather together under the general heading of cost effectiveness (although later we will want to separate them) are simple. The costs of an intervention that fall to all members of society and its effects or outcomes are measured and set alongside each other. If the outcomes are sufficiently good to warrant the costs, then the project or service will look attractive. Of course, usually two or more interventions are vying for selection, and the comparative outcome gains and costs of the two will need to be examined. Common to each technique of efficiency analysis are outcomes and costs. What are these two central components of the production of welfare approach?

28.4.1

Outcomes

Summarizing the discussion above, outcomes can be conceptualized and measured at two levels. Final outcomes reflect the changes in individual well-being (including health) along various dimensions, together with the impacts on relatives and other significant actors. By contrast, intermediate outputs are defined and measured in terms of the volume and quality of care, the use of which generates final outcomes. Other chapters discuss measurement of outcomes for psychiatric services; here we rehearse the approach commonly found in economic evaluations. Outcome measurement proceeds through two obligatory and two optional stages. Having identified the ‘well-being’ dimensions perhaps symptoms, functioning and quality of life along which outcomes are to be explored, the first stage is to develop or select scales for each dimension. At the second stage the task is to assess the impact of the intervention along each dimension over a period of time. Reference to the objectives of the intervention will help identify the dimensions of well-being and judicious use of

well-validated instruments can provide empirical measures. Thus far, the discussion of outcome measurement will be familiar to noneconomists. The two optional further stages may be less familiar, and are generally found only when economists are involved and are linked to the type of efficiency analysis undertaken. One of these further stages is to place monetary values on the outcomes; the other is to amalgamate the outcome data into a single measure. Neither is without complexity or controversy, for the information needed is difficult and costly to obtain, and laden with value judgements (although not necessarily any more than for other aspects or approaches to evaluation). There are advantages of moving to these two optional stages. First, if outcomes are measured in monetary terms they can be directly compared with costs: Does treatment X generate more benefits than it costs? Is service innovation Y worth doing? The second reduces the multidimensional changes resulting from an intervention to a single indicator. Both make the data easier to manage and the findings easier to understand, but these desirable characteristics are also the principal drawbacks. Conflation to a single measure and reduction to monetary measures wastes information, perhaps losing indicators along some of the many dimensions on which mental ill-health may have an impact. It may also unwittingly disguise the value judgements and methodological assumptions that have been made to create the measure. The Euro-Qol or EQ-5D is a commonly used single measure that has at its base a measure of people’s descriptions of their health [7]. The Health Utilities Index and the index developed from the Positive and Negative Symptoms Scale, a recently developed schizophrenia-specific measure, are other examples [8,9]. The quality adjusted life year (QALY), derived from only one of these instruments, conflates health status and longevity, aiming to assess the quality of life enjoyed in each extra life year gained from better treatment. QALYs are becoming more commonly used in evaluations of new psychiatric drugs but more slowly gaining ground in evaluations of mental

HEALTH ECONOMICS AND PSYCHIATRY: THE PURSUIT OF EFFICIENCY

health services and supports (see, for example, References [10] to [14]). Outcomes measure movement towards objectives. They need to be net measures of change so observations at one point in time are rarely sufficient. Outcomes should measure the differential effect of an intervention the ‘additional well-being’ that it generates over and above what would have happened without the intervention. This leads to four practical decisions. What kind of comparison is needed in order to measure the differential or net effect of care on individuals? How often should this differential effect be measured? For how long is it necessary to monitor these effects? How are errors and distortions associated with measurement to be minimized? These are all standard (if tricky) questions of research design that are considered at length in the evaluation and social statistics literatures. Outcome evaluation by economists is therefore no different in intent, method, design or constraint from outcome evaluation by social psychiatrists.

28.4.2

Costs

On the opposite side of the production of welfare relationship are the resource inputs, which can be summarized by their costs. These have known or hypothesized influences on the achievement of the intermediate outputs and final outcomes of interventions. Elsewhere we have discussed and illustrated a recommended set of rules for estimating the costs of mental health services [15,16]. First, costs should be measured comprehensively to range over all relevant supports and components of a treatment or care ‘package’. Second, the variations in costs that will be revealed between patients, facilities or areas of the country when using this comprehensive approach should be examined for their policy and practice insights. Third, like-with-like comparisons should be made; this may require some standardization for the influences of extraneous factors (through design or statistical manipulation) to ensure that comparable samples of patients or facilities are studied. The final rule is that cost information should be integrated where possible with information on

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patient outcomes. Of course, cost data are used for many purposes, including cost-of-illness studies (which aggregate the overall resource impact of an illness), pricing services for contracts or describing expenditure flows. However, efficiency analyses require this fourth rule, and sole reliance on cost findings in the absence of outcome data is almost never going to be adequate. Conversely, neglecting costs when making policy decisions, or when undertaking the evaluations that inform them, should also prompt questions about adequacy and, indeed, scientific validity. Illustrations of the application of these cost rules come from evaluations that address questions about the locus of care. While most people have moved from long-stay psychiatric hospitals to community locations in England, there is still a large amount of service relocation to be done in some other parts of Europe [17]. Long-stay hospitals provide, for example, shelter, food, care, treatment and daytime activities all on one site. Yet as individuals move to the community, these supports often come from a range of different providers, including families. Estimating comprehensive costs in the community means the supports actually used need to be identified, and costs compared with (say) more institutional settings using a similar scope (like-with-like comparisons). The same issues arise when comparing inpatient psychiatric treatment with treatment in a day hospital or at an outpatient clinic [18,19]. A further example comes from children’s services. Intensive community-based multisystemic therapy in foster care homes is currently being piloted and evaluated in 18 local authorities in England as an alternative to custodial care for very challenging young people, predicated on encouraging cost and outcome findings from the US [20]. With these understandings of outcomes and costs, we can now introduce the main tools of efficiency analysis employed within mental health economics. We start with cost-effectiveness analysis, setting out the stages through which an actual study would proceed. Descriptions of some other analytical techniques then follow. Drummond et al. [21] provide an excellent thorough account of cost-effectiveness analysis.

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28.4.3

Cost-effectiveness analysis

There are essentially six stages in a cost-effectiveness analysis (CEA): 1. Define the alternative interventions to be examined in the analysis. 2. List the costs and effects (outcomes) to be measured. 3. Quantify and value the costs and effects. 4. Compare the costs and effects. 5. Explore the robustness of the findings using sensitivity analyses. 6. Examine the distributional implications. These stages represent a simplification of checklists used to appraise the extent to which an economic evaluation conforms to an ‘ideal type’, perhaps for publication or inclusion in an evidence-based guideline [22,23]. At the first stage the exact nature of the policy or treatment options needs to be made explicit so that the research question is clear. Once identified, this question determines the characteristics of the study; some policy or practice issues do not lend themselves to a straightforward evaluative design. The second stage is to identify all likely costs and outcomes, drawing attention to those that might prove beyond the technology, ethics or politics of measurement. It is important to be aware of all factors necessary to implement, or likely to result from, the options being appraised, even if they do not later figure in the empirical evaluation. The next stages are to quantify and value the costs and outcomes in the manner described above. In costeffectiveness analyses there is no attempt to place monetary values on the outcomes whereas as we describe below cost-benefit analysis does attempt this. In comparing costs and effects, the efficiency rule would be to compare the difference in costs between the two interventions relative to the difference in outcomes. If one intervention is more effective and less costly than

another then it is clearly the more cost-effective of the two. If, on the other hand, one intervention is more effective but also more costly, then the decision maker must decide whether the better outcomes are worth the higher costs. An example will help to explain the challenge. Cognitive stimulation therapy (CST) was found to generate better outcomes for older people with dementia resident in care homes than care as usual, and costs for the two groups that were similar [11]. Under these conditions, where the intervention is achieving better outcomes for the same amount of money, CST represents a more efficient use of resources. To help in deciding whether to invest in a new intervention, economists use cost-effectiveness acceptability curves (CEACs) to provide additional and visually appealing information on the probability of a particular intervention being more efficient in given circumstances. In the CST study, the CEAC showed that if decision makers were willing to pay £100, for example, for a one-point additional gain on the cognition or quality of life scales, the probability of CST being cost-effective would be 55 and 85%, respectively. The decision rules underlying such analyses are not always easy to apply in practice, particularly in studies where some outcome dimensions register improvements and others indicate deterioration. It is not the task of the researcher to advocate a particular policy or treatment option. Rather, it is their task to point to the various efficiency and other consequences and to leave decisions to the politician, clinical manager or budget holder. The costs and effects calculated for the various options are likely to be subject to some error, and a good CEA would include sensitivity analyses, examining the implications of different assumptions regarding the estimation of costs, effects and so on. Modelling studies are not an ideal way to estimate efficiency but provide useful information on the likely implications of a particular course of action. Such studies rarely collect primary data, but collate information from a number of sources (mainly previous studies and routine data collections) and employ assumptions based on expert opinion where data are not available. Sensitivity analyses are important and can generate a range of possible results, obtained by varying the assumptions about costs and outcomes that have been incorporated into the model.

HEALTH ECONOMICS AND PSYCHIATRY: THE PURSUIT OF EFFICIENCY

This modelling approach was used in a study of early intervention (EI) services, which have become a central component of a comprehensive community mental health system in England. Findings suggest that using EI reduces costs by about a third over 12 months compared to standard care coordinated by a community mental health team (CMHT) [24]. This model blended data from research, audits, routine collections and expert advice. One of the aims of EI is to reduce inpatient admissions so the assumptions about the probability of initial admission and readmission were potentially key and were investigated in the sensitivity analyses. Neither a 50% increase nor decrease in the probability of an initial admission had an impact on cost, but for those receiving standard care, reducing the readmission rate by 50% led to the cost advantage for EI disappearing. Dramatic turnarounds from sensitivity analyses are rare, butthe cost and outcome assumptions should nevertheless be checked. Finally, the distributional or equity consequences of the different options should be addressed. In part, these are ‘who’ questions. To whom should care be provided? Many studies have found that costs are influenced by personal characteristics and needs, including age, gender, ethnicity, duration and severity of symptoms, personal and social functioning. In turn these cost variations could imply differential efficiency. Recent work, for example, has highlighted the considerable age discrimination in mental health services and social care [25,26], in access to mental health resources in different areas of the country [27,28] and in levels of expenditure [29]. Too much reliance on efficiency may mean that distributional findings, and equity more generally, might not receive sufficient policy attention.

28.4.4

Cost-benefit analysis

A CEA is designed to examine the technical and price efficiency of one or more mental health procedures; in contrast, a cost-benefit analysis (CBA) examines social efficiency. (Some economists would see CBA as a special case of CEA; others would disagree. We do not need to delve into that debate here.) The stages of a cost-benefit analysis exactly mirror those of a CEA except that the former places monetary values on the

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outcomes and the latter does not. The CBA technique can be used to say whether or not the benefits of a project or procedure outweigh the costs; this cannot be achieved with a CEA because the resources (costs) and their impacts (effectiveness) are measured in different units. The inherent ease with which CBA results can be understood is a major advantage for this technique, but the disadvantages include the difficulties and additional value judgements associated with the attachment of monetary values to outcomes. One recent study typifies the complications around the meaning of a CBA. This influential study explored the potential of increasing NHS expenditure on cognitive behavioural therapy to alleviate symptoms of depression, which in turn would reduce the costs of employment-related difficulties [30]. Styled as a CBA, it used data from previous epidemiological, clinical and economic research to model the economic payoffs and showed that a nation-wide investment in psychological therapists in England would pay for itself many times over. Herein lays the problem. In its ideal form a CBA includes placing a monetary value on final outcomes, i.e. changes in the welfare of participants. However, this study identified what is effectively an intermediate output return to work as the end-point of interest, and the proportion of work-days gained from cognitive behavioural therapy for depression can be valued as monetary gains to the national economy. This study provided the evidence base that led directly to the £180 million Improving Access to Psychological Therapies (IAPT). One other type of study is often mislabelled as a CBA. These studies define ‘benefit’ as expenditure avoided or cost saved, which either implies that outcomes are irrelevant or makes the strong assumption of identical outcome implications of the alternatives under consideration. These cost-offset calculations can be informative but they do not assess efficiency.

28.4.5

Cost-utility analysis

Cost-utility analysis (CUA) is the label attached to a particular data configuration: it is a cost-effectiveness analysis conducted with outcome measured in terms of individuals’ ‘utility’ a measure that captures individuals’ preferences for health states that are

380

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differentiated by life expectancy and quality of life. A common metric is the cost per QALY gained for different procedures. (We introduced the QALY, quality-adjusted life year, earlier in the chapter.) One advantage of this approach is that the same utility measure can be used across different health problems. In turn this holds the potential to compare results across treatments and disorders. The National Institute for Health and Clinical Excellence (NICE) in England and Wales advocates the use of QALYs and assesses the social efficiencyofinterventionsforalltheirclinicalguidelines against a standardized value of decision-makers’ willingness to pay for an additional QALY gain [23]. Despite its increasing popularity there remain three challenges to estimating QALYs in mental health contexts. First, although the approach provides the clinical, managerial or financial decision maker with a set of precise-looking statistics, these may disguise the complexity of service provision for people whose service needs are many and wide-ranging. Second, by using only the single outcome dimension, the effects of the interventions on the many areas on which mental health problems and their treatments may impact positively or negatively may be missed. Third, there are worries that the available generic utility-generating instruments, the best known being the EQ-5D [7], are insufficiently sensitive to the changes in symptoms and functioning typically recorded in mental health studies. This particular measure has been found not to work well in evaluations that include people with psychosis, personality disorder, child and adolescent problems and dementia [31]. We would certainly not suggest that QALYs should be excluded from economic evaluations of social psychiatry interventions, but to use such measures unthinkingly or in the absence of other measures will risk missing information valuable to providers and commissioners as they try to respond to the needs of their population within limited resources.

28.5

28.4.6

Cost functions

In most other fields where economists are active it is rarely possible to set up a controlled study. For example, it is very hard to persuade companies to be randomly allocated to different market regimes. Similarly national economies are unique, disallowing direct comparisons. Thus, applied economics research in these other areas has developed a range of multivariate statistical techniques to get around the problems of less-than-ideal study designs. With sufficient data, the techniques allow exploration of cost differences between units; in social psychiatry these units might be NHS Trusts, hospitals, areas, years, individual users and so on. A ‘statistical cost function’ is an attempt to ‘explain’ observed cost variations. It is the estimated relationship between the cost of providing a service, the outcomes, resource prices and otherfactorsthat havean hypothesized influence on cost, such as the needs of the individuals using the service, the arrangement and organization of care, and the broader local context of care [32,33]. The simple production of a welfare framework set out above provides a theoretical structure within which to suggest these potential influences and to interpret their links to costs. The cost function takes a rather different approach from CEA, CBA and CUA. It is partly a statistical technique, and has most commonly been estimated with cross-sectional data for a sample of ‘production units’ that are known or assumed to have reasonably similar objectives and to employ reasonably similar production techniques. There is no engineer’s blueprint to guide the study of cost variations, and the model does not suggest that ‘production’ is routinized or standardized, but ‘behavioural cost functions’ have been estimated to good effect for mental health facilities, for administrative areas such as municipalities and for individual users of services [25,29,34 37].

THE PURSUIT OF EFFICIENCY

Efficiency is still not a concept that is widely understood, and partly as a result it is not a concept that is warmly welcomed by professionals charged with meeting the clinical and wider needs of individuals

experiencing distressing symptoms or of families carrying a heavy burden of unpaid care. Similarly, requests for and utilization of cost information are still regarded with some suspicion. However, awareness of

HEALTH ECONOMICS AND PSYCHIATRY: THE PURSUIT OF EFFICIENCY

the need to understand what resources are used in (say) the delivery of treatment or the implementation of a new policy is considerably more widespread today than it was twenty or even ten years ago. Legislation, national service frameworks, clinical guidelines, regulatory frameworks, auditing and the introduction of the ‘internal market’ in Britain’s National Health Service have all reinforced the message that resources are not limitless. They have also emphasized that careful (which is now usually interpreted to mean ‘evidence-based’) decisions have to be taken about how to deploy those resources. As will be crystal clear from our arguments in this chapter, we do not find this trend to greater efficiency emphasis to be regrettable provided that it is implemented advisedly and managed wisely. For example, misinterpretation of what efficiency means, or inadequate measurement of the core components of outcomes and costs, or na€ıve interpretation of the evidence gathered can each mean that the pursuit of efficiency does not achieve its objectives. This is why the pursuit of efficiency in a mental health system still has some distance to travel. What, then, are the challenges for the future? One is to ensure that the concept of efficiency is widely and properly understood by all of those individuals charged with taking decisions within the mental health system. These could be major countrywide decisions about some new national policy initiative, or very local decisions about the expansion of a particular community initiative, or practice decisions about treatment modalities for people with particular configurations of need. Every one of those decisions needs to have one eye on the likely or expected outcomes gauged in terms of improvements in health and quality of life, but the other eye needs to be on the resources expended in the achievement of those outcomes. Another challenge for the future is to ensure that the accumulation of new evidence on the effectiveness of treatments, community arrangements, policy initiatives and so on is accompanied by the collection of information on the resources expended. Today most

381

clinical trials of medications include a cost-effectiveness evaluation, and increasingly so too do evaluations of psychological therapies and service arrangements. That same commitment by the research community and the bodies that support it through funding does sometimes appear to be lacking in the policy community, where grand decisions have been taken to reorganize or restructure the health system (broadly defined) in an evidence-free way. Two further challenges are linked to the component elements of any efficiency analysis or discussion: the measurement of outcomes and the measurement of costs. Outcome measures that attempt to pick up changes in symptoms, personal functioning, quality of life and so on are many and generally of a good calibre. The relatively recent emphasis on additionally measuring a generic outcome such as utility (most readily seen in the quality-adjusted life year) still has a little way to go before decision makers in mental health systems will be convinced that they have available to them a tool that will deliver reliable, sensitive, valid and meaningful indicators of achievement. On the cost side, available methods and results are generally more satisfactory, although it is still too common for empirical research to focus narrowly on the costs falling to health services and ignore the costs relating to social care, housing and other services frequently used by people with mental health needs. As these challenges suggest, there are tasks for economists and other researchers, in particular to improve measures so that they better reflect the circumstances and experiences of people with mental health problems. It also behoves policy makers, managers and practitioners at all levels to ensure that they demand and use economic evidence in their everyday work. If the overriding aim of the mental health system is to meet more needs and further improve the health and well-being of its users, then efficiency must be a key objective, because basically it means striving to achieve more from available resources.

ACKNOWLEDGEMENTS This work was undertaken within the Personal Social Services Research Unit’s core programme, funded by

the Department of Health, although all responsibility for the contents rests with the authors alone.

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REFERENCES 1. Williams, A. and Anderson, R. (1975) Efficiency in the Social Services, Basil Blackwell, Oxford. 2. Culyer, A. (1981) Economics, social policy and social administration: the interplay between topics and disciplines. Journal of Social Policy, 10, 311 329. 3. Davies, B. and Knapp, M. (1988) The production of welfare approach: evidence and argument from the PSSRU. British Journal of Social Work, 18 (suppl.), 1 11. 4. Knapp, M. (1984) The Economics of Social Care, Macmillan, London. 5. Knapp, M. and McDaid, D. (2007) Mental Health Policy and Practice Across Europe (eds M. Knapp, D. McDaid, E. Mossialos and G. Thornicroft), Open University Press, Maidenhead. 6. Bebbington, A. and Davies, B. (1983) Equity and efficiency in the allocation of the personal social ser vices. Journal of Social Policy, 12, 309 330. 7. EuroQol Group (1990) EuroQol a new facility for the measurement of health related quality of life. Health Policy, 16, 199 208. 8. Horsman, J., Furlong, W., Feeny, D. and Torrance, G. (2003) The Health Utilities Index (HUI): concepts, measurement properties and applications. Health and Quality of Life Outcomes, 1 (5), 54. 9. Lenert, L., Sturly, A., Rapaport, M. et al. (2004) Public preferences for health states with schizophrenia and a mapping function to estimate utilities from positive and negative syndrome scale scores. Schizophrenia Research, 71, 155 165. 10. Byford, S., Barratt, B., Roberts, C. et al. (2007) Eco nomic evaluation s of a randomized controlled trail for anorexia nervosa in adolescents. British Journal of Psychiatry, 191, 436 440. 11. Knapp, M., Thorgrimsen, L., Patel, A. et al. (2006) Cognitive stimulations therapy for people with demen tia: cost effectiveness analysis. British Journal of Psychiatry, 188, 574 580. 12. McCrone, P., Knapp, M., Proudfoot, J. et al. (2004) Cost effectiveness of computerized cognitive beha viour therapy for anxiety and depression in primary care: randomized controlled trail. British Journal of Psychiatry, 185, 55 62. 13. NICE (2003) Depression: Management of Depression in Primary and Secondary Care, Guideline No. 23, The British Psychological Society and Gaskell, London.

14. NICE (2004) Schizophrenia: Full National Guideline on Core Interventions in Primary and Secondary Care, The British Psychological Society and Gaskell, London. 15. Knapp, M. and Beecham, J. (1990) Costing mental health services. Psychological Medicine, 20, 893 908. 16. Beecham, J. and Knapp, M. (2001) Costing psychiatric interventions, in Measuring Mental Health Needs, 2nd edn (ed. G. Thornicroft), Gaskell, London, pp. 200 224. 17. Mansell, J., Knapp, M., Beadle Brown, J. and Beecham, J. (2007) Deinstitutionalisation and Commu nity Living Outcomes and Costs: Report of a European Study, Tizard Centre, University of Kent, Canterbury. 18. Beecham, J., Sleed, M., Knapp, M. et al. (2006) The costs and effectiveness of two psychosocial treatment programmes for personality disorder: a controlled study. European Psychiatry, 21, 102 109. 19. Priebe, S., Briscoe, J., Jones, G. et al. (2006) Effec tiveness and costs of acute day hospital treatment as compared with conventional in patient care: a rando mised controlled trial. British Journal of Psychiatry, 188, 243 149. 20. Aos, S., Phipps, P., Barnoski, R. and Lieb, R. (2001) The Comparative Costs and Benefits of Programs to Reduce Crime, Washington State Institute for Public Policy. 21. Drummond, M., Sculpher, M., Torrance, G. et al. (2005) Methods for the Economic Evaluation of Health Care Programmes, Oxford University Press, Oxford. 22. Drummond, M. and Jefferson, T. (1996) Guidelines for authors and peer reviewers of economic submissions to the BMJ. British Medical Journal, 313, 275 283. 23. NICE (2008) Guide to the Methods of Technology Appraisal, National Institute for Health and Clinical Excellence, London. 24. McCrone, P., Knapp, M. and Dhanasiri, S. (2009) Economic impact of services for first episode psycho sis: a decision model approach. Early Intervention in Psychiatry, 3, (4), 266 273. 25. Beecham, J., Knapp, M., Fernandez, J. L. et al. (2008) Age Discrimination in Mental Health Services, PSSRU Discussion Paper 2536. 26. Forder, J. (2008) The Costs of Addressing Age Dis crimination in Social Care, PSSRU Discussion Paper 2538. 27. Beecham, J. (2005) Access to mental health supports in England: crisis resolution teams and day services. International Journal of Law and Psychiatry, 28, 574 587.

HEALTH ECONOMICS AND PSYCHIATRY: THE PURSUIT OF EFFICIENCY

28. Bindman, J., Glover, G., Goldberg, D. and Chisholm, D. (2000) Expenditure of mental health care by English health authorities: a potential cause of inequity. British Journal of Psychiatry, 177, 264 277. 29. Moscone, F. and Knapp, K. (2005) Exploring the spatial pattern of mental health expenditure. Journal of Mental Health Policy and Economics, 8, 205 217. 30. Layard, R. Clark, D., Knapp, M. and Mayraz, G. (2007) Cost benefit analysis of psychological therapy. National Institute Economic Review, 202, 90 98. 31. Knapp, M. and Mangalore, R. (2007) The trouble with QALYs . . .. Epidemiologia e Psichiatria Sociale, 16, 289 293. 32. Knapp, M. (1998) Making music out of noise: the cost function approach to evaluation. British Journal of Psychiatry, 173 (suppl. 36), 7 11. 33. Dunn, G., Mirandola, M., Amaddeo, F. and Tansella, M. (2003) Describing, explaining or predicting mental

34.

35.

36.

37.

383

health care costs: a guide to regression models. British Journal of Psychiatry, 183, 398 404. Beecham, J., Chisholm, D., O’Herlihy, A. and Astin, J. (2003) Variations in the costs of child and adolescent psychiatric inpatient units. British Journal of Psychia try, 183, 220 225. Beecham, J., Green, J., Jacobs, B. and Dunn, G. (2009) Cost variation in child and adolescent psychiatric inpatient treatment. European Child and Adolescent Psychiatry, 18, 535 542. Chisholm, D., Knapp, M., Astin, J. et al. (1997) The mental health residential care study: predicting costs from resident characteristics. British Journal of Psychiatry, 170 (1), 37 42. Knapp, M., King, D., Pugner, K. and Lapuerta, P. (2004) Non adherence to antipsychotic medication regimes: associations with resource use and costs. British Journal of Psychiatry, 184, 509 516.

Part Five Social interventions

29 Team structures in community mental health Tom Burns Department of Psychiatry, University of Oxford, Oxford, UK

While social psychiatry may be difficult to define satisfactorily it is relatively easy to recognize. Wittgenstein’s observation summarizes it: ‘Words signify families of objects, rather than define classes. A hemp rope is strong despite none of the fibres running right through.’ Community psychiatry is a slippery term and community mental health teams likewise. No single definition will be always right but most of us know what we mean by the terms and recognize them when we see them. Psychiatric disorders express themselves in social relationships. Most psychiatric pathology is dominated by the patients’ behaviour and their thoughts and feelings either about themselves or about those around them. These distortions of social relationships not only characterize the active illness but may permanently alter the nature and scope of the patients’ social functioning. Fractured family relationships may leave the individual unsupported, lost educational and training opportunities may leave them impoverished, and self-doubt and anxiety may constrict access to friendship and meaningful activity. Treatment of all but the simplest and briefest

psychiatric disorders inevitably involves both care and social management. This intimate linking of the need for social interventions (whether social treatments or social care) with psychiatric treatment has become strikingly obvious with deinstitutionalization. While the treatment of the mentally ill was confined to asylums and mental hospitals the role of those institutions in meeting social needs (however imperfectly) went essentially unrecognized. Initial attention to this role focused on its detrimental effect. Russell Barton attributed much of the ‘schizophrenic deficit state’ to apathy induced by the mental hospital regime labelling it ‘institutional neurosis’ [1]. Erving Goffman was enormously influential delineating ‘total institutions’ in his Asylums [2]. Such thinking, along with increasing reports of institutional abuse of mental patients, strengthened the case of social reformers for community care. These reforms went back several decades, well before the advent of antipsychotic drugs, long before the antipsychiatry of the 1960s. Isolated examples of innovative communitybased care had been in evidence in settings as

Principles of Social Psychiatry, second edition Edited by Craig Morgan and Dinesh Bhugra
2010 John Wiley & Sons, Ltd.

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disparate as Soviet Russia, the UK, Italy, France, the Netherlands and the US. However, when deinstitutionalization became a systematic, international

29.1

THE EARLY HISTORY OF COMMUNITY MENTAL HEALTH TEAMS (CMHTS)

A team approach to community mental health care for thosewith severe or enduring disorders is inevitable; no one profession contains all the necessary skills nor could one individual provide the flexibility required. The multidisciplinary CMHT has slowly evolved to meet these needs. The UK and France led the development of such teams in the 1950s and 1960s. France’s ‘secteur’ approach [3] stressed geographical teams early but remained relatively limited since early, often highly theoretical, interest. In the UK, outreach was heralded in the mid-1950s more pragmatically with the 1953 appointment of the first two community psychiatric nurses (CPNs) in London [4] and the Worthing experiment providing home-based care [5]. The newly introduced 1959 Mental Health Act accelerated the UK development of CMHTs. This act required hospitals admitting involuntary patients to provide outpatient aftercare. It also mandated the involvement of social workers in compulsory admissions and social services provision for discharged psychiatric patients. The requirement for outpatient

29.2

follow-up necessitated the subdivisions of hospital catchment areas into manageable sectors while the increasingly closer relationship between psychiatrists and social workers helped shift the focus of care. CPNs became the backbone of UK CMHTs and took on the bulk of what later came to be referred to as case management of the long-term mentally ill. In other countries this role has more often been taken by social workers (e.g. the US, Germany, Scandinavia) or by specifically trained mental health workers. By the 1980s most high-income countries were downsizing their mental hospitals and establishing community care. The radical reforms in Italy introduced by Bassaglia in Trieste and the passing of Law 180 in 1978 ensured the prestige of the CMHT there. While the Italian experience was launched with great flair and energy it was not particularly innovative, mirroring closely that in the UK. It can, perhaps, be seen as the end of the era of ‘organic evolution’ in CMHT practice, to be followed by a more scientific and research-driven approach to development.

CHARACTERISTICS OF THE GENERIC CMHT

Although there has been a remarkable flourishing of research into the configuration and practice of CMHTs in the last 30 years (plus a striking growth in their size and resources), their basic structure and processes have remained relatively consistent.

29.2.1

priority in the 1960s, community care began to evolve into the widespread and durable form recognizable today.

Staffing

The CMHT is characterized by its multidisciplinary nature. Virtually all include psychiatrists (although this is changing in some specialized teams), nurses and social workers. The preponderance of nurses or social workers varies according to local traditions, as does the role of the psychiatrist (a team member, a

team resource or a team leader). The joint working of several disciplines ensures the availability of specialist care prescribing, personal care, help with money and accommodation but also ensures a rounded holistic approach to care with all contributing their unique perspectives to assessment. Team members generally display considerable role overlap (previously referred to as ‘role-blurring’), acknowledging the importance of continuity and therapeutic relationships. There is national and international variation in the staffing of CMHTs with clinical psychology and occupational therapy often playing important roles in Europe and specialist staff such as vocational counsellors and drug and alcohol trained staff in the US and Australia.

TEAM STRUCTURES IN COMMUNITY MENTAL HEALTH

29.2.2

Assessments and reviews

Two key structured activities of CMHTs are the assessment of new patients and the regular review of patients on their caseloads. Assessments can be conducted in a variety of forms in traditional outpatient clinics, in patients’ homes or other convenient, nonstigmatizing, locations (e.g. GP surgeries). They can be by psychiatrists alone or jointly, or by any qualified professional. Assessment practices reflect differences in resources and in the target patient group. Most CMHTs have a meeting each week where patients are reviewed by the whole team to draw on their combined expertise. Routine CMHTs will often devote 2 3 hours to such a meeting structured to review new patients, current crises plus systematic reviews of long-term patients at established intervals. These meetings serve to ensure optimal care but also mutual education and supervision. In many services their form and content has been prescribed to ensure consistent practice. In the UK the Care Programme Approach (CPA) was introduced in 1992. This required the review to be clearly recorded to include patient needs, interventions and who is responsible for them plus an agreed future review date; the documentation should be shared with the patient and their relevant carers [6].

29.2.3

Case management

Although case management is a fairly recent term, the practice of individual team members carrying a discrete caseload established itself early in CMHT evolution. Case managers (or key workers as they were often called) regularly visited, monitored and treated individuals on their caseload. As CMHTs became more sophisticated they took on coordination and review functions also. This relationship is of particular importance in CMHTs, given that many of the most ill

29.3

389

patients avoid treatment and are easily neglected or overlooked. Early research into case management [7,8] led to a greater clarity about its practice, in particular the need for a limited, actively managed, maximum caseload size. There is little agreement on the correct size of the caseload but there is agreement that it should be fixed.

29.2.4

Triage, allocation and zoning

With increasing size and complexity CMHTs have introduced a number of practices, some of which remain controversial. Generally CMHTs operate as secondary care services requiring a referral from another health professional (most commonly family doctors, but including social workers or other doctors). Direct access has usually been unsuccessful, responsible for the failure of US Community Mental Health Centres [9] and for a number of European initiatives. Early CMHTs assessed all patients referred to them, but increasingly teams triage referrals. Attempts have been made to develop structured referral criteria for this [10], but with little success, and it remains a clinical decision based on the referral letter or a brief assessment by a more junior member of the team. Triage is controversial in mental health as referral information can be incomplete and misleading and where there is some evidence, albeit indirect, that investing in thorough assessment may overall save time and resources [11,12]. Where teams do not restrict assessments to psychiatrists some have ‘allocation meetings’ to direct referrals to the appropriate team member. This practice is questionable and time-consuming. Zoning involves actively deciding which patients need more intensive input, rather than simply deciding it from day to day. Derived from research into intensive case management for highly unstable patients, it is routinely used in first-onset teams and increasingly in generic CMHTs.

RESEARCH INTO CMHT STRUCTURES

There were a number of isolated trials of early community mental health services [13 15] but Stein and Test’s landmark study of Assertive Community

Treatment [16] initiated an era of intense activity. This research into team functioning and structure has demonstrated an impressive incremental

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improvement in quality. Coid correctly castigated early researchers for obvious faults small samples, poor and inconsistent definitions þ new services highly dependent on charismatic leaders who often researched their own practice [17]. To these criticisms can be added the failure to pay attention to control services [18] and the difficulties of measuring a rapidly changing service context. It is also impossible to blind researchers or practitioners or to

29.4

control powerful external influences. Community psychiatry research is highly complex; it requires both social science and natural science methodologies simultaneously and often tries to capture a moving picture. The pre-eminence given to randomized controlled trials in modern evidence-based medicine has resulted in a misplaced faith in their results with little attention to their limitations for this task [19].

CASE MANAGEMENT (CM) AND ASSERTIVE COMMUNITY TREATMENT (ACT)

The coherent body of systematic research into community mental health teams was started by research into case management (CM). Intagliata [7] described CM’s origins in the need to coordinate a disparate range of services for multiply disabled individuals discharged from mental hospitals. The early form of CM was so-called ‘brokerage’ CM. The case manager was not necessarily a mental health professional and was responsible for organizing care, not providing it. Brokerage CM was subject to some early trials, which rapidly confirmed the evolving clinical consensus that it was ineffective. It was promptly replaced with ‘clinical case management’ where the case manager was responsible for much of the direct care (a ‘key worker’) as well as brokerage [8]. The importance of clinical case management in CMHTs was questioned with the publication of Stein and Test’s landmark study [16]. Their approach (later called assertive community treatment (ACT)) was based on a multidisciplinary team made up predominantly of clinical case managers. However, they emphasized the importance of shared clinical responsibility (deriving from outdated aetiological theories about pathological dependency in psychosis), referred to as ‘the whole team approach’. How real a difference this approach makes is open to debate, but the term ‘case management’ was subsequently restricted in research literature to services not operating as teams. Marshall and Lockwood’s Cochrane review of case management distinguished it from ACT and concluded that it is ineffective in reducing hospitalization or loss to follow-up [20]. ACT, on the other hand, was shown in a separate Marshall and Lockwood review and meta-analysis to reduce hospitalization and loss to

care significantly [21]. As a consequence ACT has spread internationally as the preferred service model for severe mental illness in many US states and Australia and has been mandated in the UK [22], establishing over 300 teams.

29.4.1

Meta-regression of home-based care

The international spread of ACT and research into it has been particularly valuable in illuminating CMHT structures. No sooner had the approach been mandated in the UK when one of the largest, and certainly the most rigorous, trial of ACT found no benefits for it [23]. This UK700 trial caused a furore, and not just because it failed to find any significant differences (patients in both groups spent a mean of 72 days in hospital over two years of follow-up); several of the trials in Marshall and Lockwood’s meta-analyses failed to find significant differences although the summed results were significant. The UK700 trial was, however, sufficiently powered to demonstrate that there was no difference in outcome. Indeed, no substantial trial of ACT in Europe (where it is called intensive case management (ICM)) had found a significant reduction in hospitalization [24 26]. The dispute about whether this reflected poor model fidelity or better controls was eventually addressed scientifically. This comprised a systematic attempt to identify the factors associated with reduced hospitalization, and in the process obtain a greater understanding of effective CMHT structure and functioning.

TEAM STRUCTURES IN COMMUNITY MENTAL HEALTH

The main finding of this meta-regression [27] was that the current practices in the use of inpatient care (i.e. the quality of the control services) explained most of the variance; this has been borne out by the failure of ACT teams established in the UK to reduce hospitalization [28]. Model fidelity was assessed for the services in the studies and yielded the remarkable finding that staffing and resources had no association with reducing hospitalization (Figure 29.1); however, ‘team processes’ did have a significant association (Figure 29.2). The multidisciplinary nature of the team (with regular reviews and shared decision making) appeared to be the effective ingredient. In short, this investigation was a strong endorsement of the traditional structure and functioning of generic CMHTs.

29.4.2

Characteristics of generic CMHTs

Given their early, slow evolution it is not surprising that there is very little empirical research into CMHT characteristics. An earlier systematic review of home

391

treatment [29] attempted to identify core ingredients. The principle investigators in 90 trials of home-based care worldwide were questioned about the nature of the teams they were testing. A group of experts had developed a checklist of 20 easily measurable key components of community care to be rated for each service studied. Over 60 replies were received spread across the studies [30]. Figure 29.3 shows the six service characteristics that were most frequently reported and the lines between them indicate their associations in a cluster analysis. This study lacks the rigour and power of the metaregression and its findings should be considered provisional. It does, however, distinguish aspects of team structure in more detail. Small caseloads indicate a caseload size of 1 : 20 or below (not microcaseloads of <1 : 10 suggested in ACT). The two ‘home contact’ factors record, first, the policy of having home visiting as a regular aspect of work and, second, the proportion of all patient contacts that were home based. ‘Multidisciplinarity’ reflects having trained professionals from several disciplines

Figure 29.1 Scatter plot of IFACT team membership subscore versus mean days per month in hospital. Each circle is proportional to the size of centre it represents. Negative treatment effect indicates that intensive case management achieved a reduction in mean days in hospital relative to the control

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SOCIAL INTERVENTIONS

Figure 29.2 Scatter plot of IFACT organization subscore versus mean days per month in hospital. Each circle is proportional to the size of centre it represents. Negative treatment effect indicates that intensive case management achieved a reduction in mean days in hospital relative to the control

in the team (not just undifferentiated case mangers or mental health workers). Two questions were asked about psychiatric provision How much was there (psychiatrist hours per 100 patients) and how did the psychiatrist work (as a consultant to the team for complex problems or as a routine member of

the team)? Integration of the psychiatrist in the team was reported as a core feature but not levels of psychiatrist resource. ‘Responsibility for health and social care’ was defined as the ability and willingness of the team to address both medical (e.g. pharmacological and psychological therapies) and social

Smaller caseloads

Regularly visiting at home

High % of contacts at home

Responsible for health and social care

Multidisciplinary teams

Psychiatrist integrated in team

Figure 29.3 Associations between service components, cluster analysis and hospitalization, in a regression analysis

TEAM STRUCTURES IN COMMUNITY MENTAL HEALTH

(e.g. housing, finance, leisure) needs without onward referral. When the 20 characteristics were regressed against reduction in inpatient care (reported in all the studies) two were found to be significantly associated regular visiting at home (i.e. the policy commitment to home-

29.5

based care) and the broad responsibility for health and social care. The former endorses the development of routine outreach such as that practised by CPNs and the latter the variety of moves to integrate social services more closely into CMHTs by co-location, secondment and so on.

CURRENT DEVELOPMENTS

Despite the continuity and durability in the structure and functioning of CMHTs they are facing a period of intense scrutiny with a range of experimentation in their form and, particularly, in their relationships with the wider health care system. How these will play out is impossible to predict. They reflect a series of pressures, including professional aspirations, the impact of new treatments, plus external influences from user groups, governments and even from pharmaceutical companies. Evidence may play some part in the direction of development, but only a limited part.

29.5.1

393

Continuity of care across the inpatient/outpatient boundary

The UK and Italy are unusual in their established practice of the CMHT retaining overall clinical responsibility for their patients while in hospital. In most services there is a clear transition of responsibility (financial and clinical). While Scandinavia has recently moved to such continuity the dominant pattern has been to emphasize the split. There is no direct experimental evidence to resolve this dilemma but indirect evidence (the low bed use by the UK and Italy) suggests that continuity facilitates efficient inpatient resource use. It also has the advantage that patients remain in contact with familiar faces when at their most ill (which they value highly [31]). Continuity across this boundary also ensures that there is continuity of a treatment model [32]. Separate inpatient teams are often more ‘medical model’ and outpatient teams more ‘psychosocial’. Several factors support the separation. These include the neglect of the quality of inpatient care by CMHTs and the increasing severity of those admitted plus the diminishing number of inpatients as CMHT practice improves and as catchment areas shrink. The UK is

experiencing a move towards dedicated inpatient teams. The issue of continuity of care in CMHTs is also eroded by the emergence of crisis resolution/ home treatment teams, promoted as gatekeepers to reduce unnecessary admissions [10,22,28]. The relative benefits of reduced hospitalization versus reduced continuity of care await evaluation.

29.5.2

Relationships of specialized teams

Assertive outreach, crisis and early intervention teams for psychosis are now widespread. The initial UK plan was for them to be a patchwork of teams with GP access directly to all three [22]. In practice (particularly outside metropolitan settings) a range of more hierarchical approaches is common, with access to the specialist teams via the generic CMHT. While this may seem predominantly an ideological issue it is more a definitional one. As the roles of these teams distinguish themselves more clearly then the need for CMHT gatekeeping may become less important.

29.5.3

Impact of governance structures and structured assessments

All health service activity is subject to vastly more governance and bureaucracy than previously. There is increased attention to careful recording in notes and also much greater use of structured assessments (e.g. risk assessments, needs assessments). This can alter the balance in team activity with more time spent in team meetings than previously. There have been several initiatives to develop structured assessments to improve clinical practice, including referral threshold assessments [10] and even tools for structuring the interaction with patients [33]. Standardized

394

SOCIAL INTERVENTIONS

assessments have yet to become regular practice in generic CMHTs but they are increasingly used in more specialized teams.

29.5.4

Specialization

The last 20 30 years have seen a significant growth in specialization in mental health care. Where once a CMHT dealt with all the adult mental health problems sent to it there are now old age and forensic teams established in most services. The development and roll-out of the functional teams (ACT, CR/HT and EIS) is less firmly anchored and time will tell how they will establish themselves. The pattern is likely to vary to reflect local needs. Highly specialist teams (e.g. eating disorder teams, rehabilitation teams, personality disorder teams) are essentially tertiary care provision and their distribution often reflects local need or leadership. The development of specialist teams does, however, bring into question some of the founding principles of CMHTs. The 1960s CMHTs were often rather anarchic and emphasized the value of role-blurring and skill-sharing. This reflected a move to stressing the common humanity of much of CMHT work. In an era before the dominance of evidence-based mental health care (EBMHC) there was a strong belief that much of the work of CMHTs could be equally conducted by any of its well-trained mental health professionals. As skills have improved and as EBMHC has

29.6

become more established, role-blurring has receded. However, the value that patients and their families place on continuity (even over clinical excellence) and the importance of the therapeutic relationship in mental health care [34] underscore the fact that technical excellence has to be balanced with a wholeperson approach.

29.5.5

Evidence-based mental health care

This chapter has focused on the structure and processes of mental health teams. Much of the literature on the subject is written as if teams improve outcomes or reduce hospitalization [20,21]. This is an understandable shorthand but often reflects a genuine belief that it is the team or its routines that are effective. They are not: teams do not cure patients; it is treatments that cure patients. The UK700 trial concluded that there should be much more of an emphasis on the treatments that are delivered [23] and that these should be researched. This makes obvious sense; an important test (perhaps the most important test) of a team structure is how successful it is in delivering effective treatments that cannot be delivered equally well in other team structures. A simple example is clozapine treatment for individuals with resistant schizophrenia who are poorly compliant with treatment. ACT teams have a demonstrable advantage in achieving this than less-intensive CMHTs.

CONCLUSIONS

While brief or uncomplicated mental health problems continue to be managed in office- or clinic-based practice (often by individual practitioners), most people with severe mental illness outside hospitals are treated within some form of multidisciplinary team. This team approach, embodied in CMHTs, evolved early in the process of deinstitutionalization in response to the range of needs exhibited by these individuals and to provide effective access. They did not arise from theoretical or scientific planning. The last 30 years has witnessed a rapidly expanding body

of research plus intense public scrutiny of CMHT practice and pressures from policy makers. CMHTs have also been buffeted by internal tensions as the involved professions have established their claims for influence. Despite these developments the well-functioning CMHT demonstrates the same basic characteristics now as when they became widespread 40 years ago. They are small enough for everyone to know each other (and their potential contributions) at a personal as well as the professional level; they

TEAM STRUCTURES IN COMMUNITY MENTAL HEALTH

maintain professional identities but share many of the common tasks; most members have their own caseload for which they take overall responsibility but ensure that their patients are well known by colleagues so that tasks and clinical decision making is shared; they have regular review meetings and have an agreed, though generally ‘flat’, hierarchy of responsibility. They have changed in becoming much more specific about caseloads (both in size and responsibility); they have clearer, more consistent, clinical and recording procedures; accountability and risk-management structures have become prominent. Lastly, they have become more clearly defined in terms of the evidencebased interventions they provide for defined clinical groups rather than just in terms of their composition or the geographical areas they serve. Their core structure has proven its durability through several decades of challenge and is likely to outlive those it is currently having to accommodate.

REFERENCES 1. Barton, R. (1959) Institutional Neurosis, John Wright, Bristol. 2. Goffman, I. (1960) Asylums: Essays on the Social Situation of Mental Patients and other Inmates, Penguin Books, Harmondsworth, Middlesex. 3. Kovess, V., Boisguerin, B., Antoine, D. et al. (1995) Has the sectorization of psychiatric services in France really been effective? Social Psychiatry and Psychia tric Epidemiology, 30, 132 138. 4. Moore, S. (1961) A Psychiatric Out patient Nursing Service. Mental Health Bulletin, Summer. 5. Carse, J., Panton, N., and Watt, A. (1958) A district mental service: the Worthing experiment. Lancet, i, 39 41. 6. Department of Health (1990) The Care Programme Approach for People with a Mental Illness Referred to the Special Psychiatric Services, Department of Health, London. 7. Intagliata, J. (1982) Improving the quality of community care for the chronically mentally disabled: the role of case management. Schizophrenia Bulletin, 8, 655 674. 8. Holloway, F. (1991) Case management for the mentally ill: looking at the evidence. International Journal of Social Psychiatry, 37, 2 13.

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9. Talbott, J. A., Clark, G. H. J., Sharfstein, S. S. et al. (1987) Issues in developing standards governing psy chiatric practice in community mental health centers. Hospital and Community Psychiatry, 38, 1198 1202. 10. Slade, M., Powell, R., Rosen, A. et al. (2000) Threshold Assessment Grid (TAG): the development of a valid and brief scale to assess the severity of mental illness. Social Psychiatry and Psychiatric Epidemiology, 35, 78 85. 11. Burns, T., Beadsmoore, A., Bhat, A. V. et al. (1993) A controlled trial of home based acute psychiatric services. I: clinical and social outcome. British Journal of Psychiatry, 163, 49 54. 12. Burns, T., Raftery, J., Beadsmoore, A. et al. (1993) A controlled trial of home based acute psychiatric services. II: treatment patterns and costs. British Jour nal of Psychiatry, 163, 55 61. 13. Grad, J. and Sainsbury, P. (1968) The effects that patients have on their families in a community care and a control psychiatric service a two year follow up. British Journal of Psychiatry, 114, 265 278. 14. Pasamanick, B., Scarpitti, F. R. and Leyton, M. (1964) Home versus hospital care for schizophrenics. Journal of the American Medical Association, 187, 177 181. 15. Braun, P., Kochansky, G., Shapiro, R. et al. (1981) Overview: deinstitutionalization of psychiatric patients, a critical review of outcome studies. American Journal of Psychiatry, 138, 736 749. 16. Stein, L. I. and Test, M. A. (1980) Alternative to mental hospital treatment. I. Conceptual model, treatment program, and clinical evaluation. Archives of General Psychiatry, 37, 392 397. 17. Coid, J. (1994) Failure in community care: psychiatry’s dilemma. British Medical Journal, 308, 805 806. 18. Burns, T. and Priebe, S. (1996) Mental health care systems and their characteristics: a proposal. Acta Psychiatrica Scandinavica, 94, 381 385. 19. Slade, M. and Priebe, S. (2001) Are randomised con trolled trials the only gold that glitters? British Journal of Psychiatry, 179, 286 287. 20. Marshall, M. Lockwood, A. (1998) Case Management for Severe Mental Disorders, Cochrane Database of Systematic Reviews, Issue 2. Art. No.: CD000050. DOI: 10.1002/14651858.CD000050. 21. Marshall, M. and Lockwood, A. (1998) Assertive Com munity Treatment for People with Severe Mental Dis orders, Cochrane Database of Systematic Reviews, Issue 2. Art. No.: CD001089. DOI: 10.1002/ 14651858.CD001089.

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22. Department of Health (1999) A National Service Frame work for Mental Health, Department of Health, London. 23. Burns, T., Creed, F., Fahy, T. et al. (1999) Intensive versus standard case management for severe psychotic illness: a randomised trial. Lancet, 353, 2185 2189. 24. Thornicroft, G., Wykes, T., Holloway, F. et al. (1998) From efficacy to effectiveness in community mental health services. PRiSM Psychosis Study 10. British Journal of Psychiatry, 173, 423 427. 25. Holloway, F. and Carson, J. (1998) Intensive case management for the severely mentally ill: controlled trial. British Journal of Psychiatry, 172, 19 22. 26. Rossler, W., Loffler, W., Fatkenheuer, B. et al. (1995) Case management for schizophrenic patients at risk for rehospitalization: a case control study. European Archives of Psychiatry and Clinical Neuroscience, 246, 29 36. 27. Burns, T., Catty, J., Dash, M. et al. (2007) Use of intensive case management to reduce time in hospital in people with severe mental illness: systematic review and meta regression. British Medical Journal, 335, 336 342. 28. Glover, G., Arts, G., and Babu, K. S. (2006) Crisis resolution/home treatment teams and psychiatric

29.

30.

31.

32. 33.

34.

admission rates in England. British Journal of Psychia try, 189, 441 445. Catty, J., Burns, T., Knapp, M. et al. (2002) Home treatment for mental health problems: a systematic review. Psychological Medicine, 32, 383 401. Wright, C., Catty, J., Watt, H. et al. (2004) A systematic review of home treatment services. Classification and sustainability. Social Psychiatry and Psychiatric Epi demiology, 39, 789 796. Burns, T., Catty, J., White, S. et al. (2007) Continuity of care in mental health: understanding and measuring a complex phenomenon. Psychological Medicine, 39, 313 323. Burns, T. (2004) Community Mental Health Teams, Oxford University Press, Oxford. Priebe, S., McCabe, R., Bullenkamp, J. et al. (2007) Structured patient clinician communication and 1 year outcome in community mental healthcare. British Journal of Psychiatry, 191, 420 426. McCabe, R. and Priebe, S. (2007) The therapeutic relationship in the treatment of severe mental illness: a review of methods and findings. International Journal of Social Psychiatry, 50, 115 128.

30 Prevention Tristan McGeorge, Sean Cross and Rachel Jenkins WHO Collaborating Centre, Institute of Psychiatry, King' s College London, London, UK

30.1

INTRODUCTION

There has been longstanding interest in prevention and a variety of classifications have arisen that have been applied to both physical and mental disorders. Health prevention strategies in general have been divided into primary, secondary and tertiary approaches [1]. Primary prevention is aimed at reducing the incidence of mental disorders in the community. It is directed at people without the disorder who are at risk of subsequently developing it. Secondary prevention aims to reduce the prevalence of a disorder by reducing its severity and duration and is directed at people who show early signs of the disorder. The goal is to shorten its duration by early treatment, thereby reducing morbidity and the consequences for others. Tertiary prevention is designed to reduce the disability associated with the particular disorder, preventing the associated sequelae of chronic illness. This chapter will focus on primary prevention, which has been further subdivided into universal, selective and indicated interventions with the latter two also known as targeted prevention [2]. Universal prevention measures are considered desirable for everyone and are implemented where the benefits clearly outweigh the risks and costs. Selec-

tive prevention strategies are considered for individuals who belong to subgroups of the population whose risk of becoming ill is above average. Indicated prevention is targeted at specific groups who are at high risk of developing a disorder. A summary of these terms can be found in Table 30.1. A further classification system has also arisen due to a perceived lack of clarity between prevention and treatment, which differentiates between treatment and maintenance interventions [3]. Under this approach, prevention interventions describes interventions that take place before the first symptoms of a psychological disorder appear. Treatment interventions are interventions initiated during an active psychological disorder and maintenance interventions include aftercare and relapse prevention programmes [4]. The resources required for the different strategies above will vary considerably. Prevention targeted at high-risk individuals produces the greatest benefit for those particular individuals, but the best benefit for the population as a whole is provided by universal measures this has been described as the ‘prevention paradox’ [5].

Principles of Social Psychiatry, second edition Edited by Craig Morgan and Dinesh Bhugra Ó 2010 John Wiley & Sons, Ltd.

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SOCIAL INTERVENTIONS

Table 30.1

Summary of primary prevention strategies

Universal Universal prevention interventions target a whole popula tion group that has not been identified on the basis of increased risk. Selected Selected prevention targets subgroups of a population whose risk of developing a mental disorder is significantly higher than average, as evidenced by biological, social or psy chological risk factors. Indicated Indicated prevention targets high risk persons who are identified as having minimal symptoms foreshadowing mental disorder or biological markers indicating predis position for mental disorder but do not meet diagnostic criteria for mental disorder at that time.

30.1.1

Targets for prevention

In identifying specific areas upon which prevention strategies may be brought to bear, it is important to distinguish between predisposing and precipitating factors namely those factors that are intrinsic to the development of a disorder compared to those instrumental to its onset. There are greater opportunities for prevention in precipitating as opposed to predisposing factors. This has led to a shift from high-risk populations to high-risk situations as a focus for prevention programmes. It is easier to identify high-risk situations than to access high-risk populations. The immediate return on the high-risk situations is likely to be greater than for high-risk populations, which may not see their return for many years [6]. At the core of prevention work is the identification of both risk and protective factors for the disorder. Attempting to reduce the former and promote the latter is integral to a preventive approach good evidence exists for the importance of both [7]. Risk and protective factors occur on many different levels individual, social, economic, environmental, cultural and their interplay has been suggested to be cumulative in moving along a chain of causation from health to increased vulnerability, through to symptoms and finally to full-blown disorder [8]. However, there is a further level of complexity. Although risk and protective factors may predispose

Table 30.2 Summarizing important processes at the onset of mental disorder Cumulative effect of multiple risk factors

þ

Lack of protective factors

þ

Interplay of risk and protective situations

Individual resilience

to, or precipitate, the onset of a mental disorder, this is not completely consistent or reproducible. Resilience in the face of multiple-risk factors and in the absence of protective factors continues to be the subject of research, particularly for the way in which stressful events at a population level may lead to different mental health outcomes at an individual level (see Table 30.2). ‘Social determinants’ has become an umbrella term for a number of different processes [9]. It includes two important processes, both of which may be the target of a prevention strategy. First, there are the environmental and psychosocial factors impacting on a causative path to mental disorder. Second, there is the way in which these risk factors are mediated by social and political processes such as access to food, housing and health care. The wider social and political context is therefore of paramount importance. Albee claimed that the major risk factor for mental illness is stress and identified the major causes of stress as poverty, gender discrimination and being born unwanted. According to him the only way to reduce the incidence of emotional disorders is through the use of primary prevention measures [10]. However, more than this, he argued for the creation of just egalitarian societies in order to prevent mental illness [11].

30.1.2

Strategies for prevention

In delivering a prevention programme the target population needs to be identified. Two main approaches are available. The first involves the identification of individuals who are exposed to multiple stressors. The second approach is to identify those individuals who have experienced particular life eventsthat place them at risk. Prevention strategies based on life event and social

PREVENTION

support theory include delivering individual social support, improving coping capacities, altering environmental settings (nidotherapy) and developing natural

30.2

support systems [12]. Evidence will now be presented for the variety of ways in which prevention strategies may be advanced with this framework in mind.

EVIDENCE FOR PREVENTION STRATEGIES

Strategies to reduce risk factors and promote protective factors are considered at four different lifetime points.

30.2.1

399

Perinatal and infancy

Prevention strategies around the time of pregnancy and birth have two obvious focal points: (i) the beginnings of life and (ii) major parental life events. Health prevention work with regard to mental disorders has been attempted through universal measures widely aimed at those who are pregnant and in a more selective way at specific groups e.g. mothersto-be who smoke or in an indicated way for those who are at high risk because of existing mental illness.

available to show that a 15 minute behavioural intervention reduced the incidence of smoking and resulted in a net gain in birth weight [17]. Good nutrition in infancy leads to healthier cognitive development, which can lead to improved educational outcome and decreased risk of mental disorder. The best evidence is for models that combine food supplementation with counselling and psychosocial care [18]. In an American study, visits during pregnancy and the first two years of life focused on parent education and social support, resulting in higher birth weights, higher IQs and lower levels of child abuse [19]. A further universal nutritional measure of global relevance is iodine supplementation, which has protected millions of children from the physical and mental health sequelae of iodine insufficiency [20].

30.2.1.1 Mental health of the newborn 30.2.1.2 There is evidence linking a number of mental disorders back to perinatal problems and early infancy. These include organic learning disabilities and functional psychiatric disorders. Examples include the link between low birth weight and depression [13] and schizophrenia [14], and between exposure to stress in the first trimester and schizophrenia [15]. Several factors increase the likelihood of low birth weight, most notably poor nutrition and substance misuse. Universal campaigns for healthy eating during pregnancy are widespread, as are specific campaigns highlighting the dangers of addictive substances, most notably alcohol and cigarettes. There is evidence of childhood mental disorders being more prevalent in those whose mothers used addictive substances during pregnancy e.g. foetal alcohol syndrome is a well-documented phenomenon and longer term neurodevelopmental difficulties such as lower intelligence, ADHD, conduct disorders and poorer school achievements have been linked to substance misuse in pregnancy [16]. Evidence is

Mental health of parents

Pregnancy and the perinatal period is a time of significant adjustment for both parents and most notably for the mother. Notwithstanding the significant joy such occasions bring, there is evidence for higher rates of common mental disorders, such as depression and anxiety, being present at this time. Universal strategies such as psychoeducative practices by health visitors and midwives are common. Robust and reliable tools have also been developed for detection of postnatal depressive symptoms, such as the Edinburgh Post Natal Depression Screen aiding promotion of early treatment of depression [21]. The treatment of a mother’s depressive episode is not only of benefit to the mother, but also to the newborn, as postnatal depressive states have a complex association with later behavioural disorders [22] as well as lower rates of childhood vaccination [23] and appropriate management of diarrhoeal diseases [24]. Active treatment of depressed mothers can also be viewed as a targeted prevention strategy for

400

SOCIAL INTERVENTIONS

depressive states in the newborn later in life. The concept of transgenerational transmission of mental disorders wider than simple genetics has validity. For example, children of depressed patients have a risk of around 50% of developing a depressive disorder themselves before the age of 20 years [25]. However, only a small amount of robust evidence exists to support the hypothesis that prevention strategies will reduce this figure [26].

30.2.2

Childhood and adolescence

Experiences in childhood and adolescence provide the foundation for adulthood and later life. Considerable attention has therefore been focused on prevention strategies aimed at this period of development. These have been directed against the range of psychiatric conditions that present in childhood and adolescence [27]. However, despite the range of prevention programmes in existence, relatively few have been utilized in routine practice [28]. The education system is important in delivering programmes for this age group [29]. It is important to recognize risk and protective factors specific to children [30]. These include familial disharmony, having a parent with a mental illness and exposure to forms of abuse [8]. Elsewhere generic risk factors for mental illness in children have been grouped into the following domains: constitutional handicaps, skill development delays, emotional difficulties, family circumstances, interpersonal problems, school problems and ecological risks such as neighbourhood disorganization, extreme poverty, racial injustice and unemployment [7]. The age range and meaning of childhood and adolescence have been defined in a number of ways [27]. Certain mental disorders are more or less common at different stages of development. The early years are characterized by the continuation of the attachment process. The onset of an attachment disorder has significant implications for later life. Prevalence studies in this age group have shown high rates of oppositional disorder, hyperkinetic disorder, and emotional disorders. Later childhood and adolescence is characterized by high rates of conduct and emotional disorders [31].

The 2004 WHO Report on the Prevention of Mental Illness divided strategies into five categories, summarized below [32].

30.2.2.1 Promoting a healthy start in life These include universal preschool educational programmes such as family reading programmes, health screening clinics, and organized recreation and television programmes. Selective interventions have focused on children from impoverished and minority families and children of low birth weight or with learning disabled mothers. Parenting initiatives such as the Webster-Stratton Incredible Years Programme [33,34] and the Australian Triple P Positive Parenting Programme [35,36] have been shown to be effective.

30.2.2.2 Reducing childhood abuse and neglect Two types of proactive strategies have proven efficacy [37]. These are home visiting programmes for high-risk mothers to prevent childhood physical abuse and self-defence programmes to prevent child sexual abuse.

30.2.2.3 Coping with parental mental illness Children of parents with mental disorders or substance misuse problems are at highest risk of developing mental illness. A range of interventions have been developed to prevent transgenerational transfer of mental illness by addressing risk and protective factors in children and their families [32]. These may target early parent child interactions, use a whole family approach in childhood and adolescence, or focus on the children themselves [26,32,38,39].

30.2.2.4 Enhancing resilience and reducing risk behaviours in schools There is evidence that social emotional learning and ecological interventions delivered through school-

PREVENTION

based programmes are effective [40]. School-based programmes include universal general skill-building programmes to develop problem-solving abilities; ecologically focused interventions that attempt to address contextual variables in the school and at home to improve functioning and prevent or reduce symptoms; and multicomponent programmes that include elements of both skill-building and ecological approaches.

30.2.2.5 Dealing with family disruption Young people who have experienced family disruption through parental divorce or death are at greater risk for a number of adverse mental health outcomes [32,41,42]. The effects of these two types of family disruption are not necessarily the same [43] and may to some extent be accounted for by a resulting change in socioeconomic circumstances [44]. Interventions for children of divorced parents have been delivered through two formats: child-focused and parent-focused programmes. There is evidence for the effectiveness of both [45 48]. Many programmes have been developed for bereaved children but few have been subject to well-controlled experimental trials [49]. Children who find themselves looked after in some way by those other than parents are of particular concern also. In the UK those within Local Authority care have been shown to have significantly higher rates of mental disorders, significantly more educational problems and a life trajectory that much more frequently includes prison [50]. A series of interventions from earlier identification of problems to further training of health and social work professionals has been suggested in a recent cross-departmental UK government report [51]. Adolescent onset depression is a cause of significant morbidity in adulthood [52]. A recent review of prevention strategies found that both selective and indicated programmes were more effective than universal approaches at preventing symptoms of depression [53]. However, despite this, prevention programmes for depression have tended to be universal rather than targeted due to their ability to reach greater numbers [54]. Research has generally shown that interventions result in a short-term reduction in

401

depressive symptoms, but the effect does not persist and nor does it result in a decrease in the incidence of depressive disorder [11]. However, one study has found that depression prevention programmes can be cost-effective in adolescents [55]. The advantages of universal versus targeted programmes in young people have been considered. A potential disadvantage of universal programmes is that, due to the relatively low prevalence of psychopathology among children, much of the effort will be spent on those who may not otherwise develop mental health problems at all ([29], p. 9).

30.2.3

Adulthood

Attempts have been made at broad universal approaches such as the promotion of a good diet, exercise and generic group activities but there is less evidence for their measured success. Beyond these general approaches, which may impact on all mental disorders, more specific universal, targeted and indicated approaches are available. Prevalence rates of depression in different countries vary significantly and may be a reflection of true differences or differences in diagnostic thresholds [56]. This therefore has an impact on any possible prevention strategy. Programmes that attempt to target group-wide self-esteem as a way of preventing the onset of depression have more evidence in school age programmes than in adults [57]. Aetiological complexities can hinder prevention programmes e.g. there is still little evidence supporting primary prevention of psychotic disorders. However, there is more evidence for secondary and tertiary prevention of psychoses [58], as well as their potential cost effectiveness [59]. There is a wider evidence base for other mental disorders. A Cochrane study summarized approaches to eating disorders. Population-wide interventions such as campaigns promoting healthy eating were less effective than targeted interventions aimed at high-risk groups including ballet dancers or models. Even greater effectiveness was seen in addressing indicated interventions to young women with subclinical diagnoses [60]. Similar evidence is available with substance misuse. Universal approaches have

402

SOCIAL INTERVENTIONS

some effect a 0.5% reduction in cigarette sales was estimated for every 10% increase in media advertising [61]. More substantial results were seen with targeted approaches. One study showed that brief GP advice resulted in 40% attempting to stop smoking and a 5% actual cessation for up to 6 months [62]. Prisoners form an adult population of concern due to the significantly elevated level of all mental health problems from common mental disorders through to personality disorders and psychosis, making this an ideal cohort for more targeted strategies [63].

measures. Additionally more targeted strategies have arisen. The increase in employee assistance programmes (EAPs) whose actual work can range from psychoeducative practices to 24-hour telephone counselling support lines may be viewed as preventive measures. The effectiveness of these approaches is demonstrated in the Caregiver Support Programme [69]. In addition, evidence in support of workplace-based counselling in reducing work stress and sickness leave is available [70].

30.2.4

Older adults

30.2.3.1 The significance of work A significant portion of the identity of an adult individual is associated in some way with work. It has been argued that two main sources of work-related mental health problems exist unemployment and enduring excessive work. Unemployment is associated with increased duration of common mental disorders [64]. The causes of this have been postulated to be multifactorial, ranging from lower levels of social networks, less cognitive stimulation, significantly reduced income and problems associated with indebtedness and higher rates of mental disorders. Indeed, debt itself has been noted to be a major risk factor for mental disorder, regardless of employment status, which opens up further possible foci of prevention work in the realm of responsible lending approaches [65]. Work stress is estimated to cost significant amounts in direct employer costs as well as working days lost in the UK, figures suggest that it runs at £3.7 billion [66] and 13 million working days [67] per annum respectively. The hazard of excessive work can result in the onset of common mental disorders, with work stress often cited as a precipitating factor. Well-being and stress are intimately influenced by the landscape of work and this is changing rapidly in the twenty-first century due to many factors, including globalization, new technologies, a shift from manufacturing to service or knowledge-related jobs, and much more fluidity in the job market, resulting in a greater sense of job insecurity [68]. Strategies for attempting to reduce the associated morbidity can be seen in universalist measures such as health and safety and worker rights

The major mental health causes of morbidity and mortality in older adults are depression and dementia, for which the majority of prevention strategies have been developed. Broadly speaking, for depression, these have included exercise [71,72], social support [73], patient education for the chronically ill and their caregivers [74,75], early screening [76], primary care interventions [77 79] and life review techniques [80,81]. Preventing cerebral trauma and reducing systolic blood pressure and serum cholesterol appears to be effective in reducing dementia [8]. Other mental health-related conditions in the elderly include anxiety disorders, alcohol abuse and prescription medicine misuse, but these have not been as well studied [82]. Primary care has been identified as being of particular significance for the prevention of mental illness in older adults [83]. A number of studies have looked at the impact of medication on dementia prevention. The results of these have not always been consistent [84]. The Cache County Study on Memory Health and Ageing examined risk and protective factors for Alzheimer’s disease [84]. The use of aspirin and NSAIDs was associated with a large decrease in the risk of dementia. Longer duration of use was associated with greater reduction in risk [84,85]. There is evidence to suggest that the medication needs to be started in middle rather than late life in order to have a beneficial effect [86]. No association was found between statin use and subsequent onset of dementia in the Cache County Study [87]. However, other studies, such as the Cardiovascular Health Study, have found a reduced rate of cognitive decline. In that particular study the effect

PREVENTION

could not be completely explained by the reduction in cholesterol effect of the statins alone [88]. Higher antioxidant intake has been shown to be associated with higher levels of baseline cognitive function. This may be greater for intake from food rather than supplemental sources [89]. The results of studies looking at the impact of HRT on dementia have been inconsistent. The WHIMS study found that the use of oestrogen plus progesterone HRT actually resulted in a doubling of the risk of dementia [90]. The Cache County Study found that prior use of HRT was associated with a reduced risk of Alzheimer’s dementia but there was no apparent benefit from current use unless it has exceeded 10 years duration [91]. Others have been unable to show a benefit from HRT in preventing dementia [92]. Some have concluded, taking into account the WHIMS study, that HRT cannot be recommended as a safe and effective strategy to prevent dementia [93]. Several large randomized controlled trials have looked at the effect of antihypertensive agents in reducing cognitive decline. These have produced conflicting results, with some showing no benefit in cognitive function for those on antihypertensive medications [94 97], while others have showed marked reductions in cognitive decline for certain agents [98 102]. It has recently been suggested that more research needs to be carried out to determine which antihypertensive agents confer greater benefits than others [103]. The preventive effects of physical exercise have been studied in relation to a number of outcomes. Observational studies have shown that physical exercise reduces the risk of cognitive decline [104 110]. This is also the case when the physical activity is limited to later life [108]. A recent randomized controlled trial showed that a six-month physical exercise programme for adults with subjective and objective memory impairment results in a modest improvement in cognition at follow-up at 18 months [106]. How-

30.3

403

ever, no RCT has yet shown that regular physical exercise actually prevents dementia [111]. Physical activity may also have a protective effect against depression in older adults [112]. However, again the research findings have been inconsistent [71]. Some have found that physical activity does not reduce subsequent depression [113 115] while others have found the opposite [116 118]. A recent study of adolescent and adult twins based on the Netherlands Twin Registry found that regular exercise is associated with lower neuroticism, anxiety and depression, and higher extraversion and sensation seeking. It also showed that exercise declines significantly with age and that in older age females exercise more than males [119]. A study conducted in older adults has indicated that aerobic exercise as opposed to anaerobic exercise has an effect on depressive symptomatology [72]. Exercise has been shown to have a beneficial effect on physical illness through a number of mechanisms such as reducing obesity [120,121], blood pressure [122 124] and diabetic status [120,125,126], among other things. This has a downstream effect given that physical illness is a major risk factor for depression in older adults. Further, social engagement has been shown to be associated with lower depression scores in older adults [127]. There is evidence in support of life review interventions such as reminiscence therapy as a means of reducing the onset of depression, particularly in those recently relocated to residential homes [128]. Indicated strategies have been found to be preferred over more selective measures. It has been suggested that indicated strategies have the best chance of detecting large groups of subjects at high risk of developing depression. However, it was acknowledged that because indicated measures require the extra effort of screening for subsyndromal depression, selective interventions might yet prove to be a good alternative.

SUICIDE PREVENTION

It is hard to be certain about the actual number of suicides globally as statistics are heavily influenced by cultural mediators and taboos. However, it has been

estimated that over 1 million people per year will die by suicide by the year 2020 [129]. Suicide has a series of well-known risk factors, the most pertinent of

404

SOCIAL INTERVENTIONS

which is the presence of mental disorder, in particular depression or schizophrenia. Some effective strategies have been identified, such as the minimization of means including coal gas reduction or certain medication restrictions [130] or increased use of antidepressant medication in the treatment of depression [131]. Comprehensive national prevention strategies can have a major impact on the incidence of such behaviour, as was demonstrated in the UK in the 1990s [132 134]. The UN has called for the establishment of more national strategies [135]. Comprehensive school targeted strategies also have an evidence base. At one study in Florida, known as the Suicide Prevention and School Crisis Management Programme, a reduction of 63% was recorded [136]. In the elderly, one of the consequences of both demen-

30.4

tia and later life depression is a high rate of suicide [137]. Older adults have been shown to have different characteristics to younger victims of suicide. They are more likely to suffer from physical illness and more commonly present to primary care with physical symptoms and depression [138]. Distress and cognitive impairment have been found to be the only two variables that consistently predict both passive and active suicidal ideation in older adults [139]. Prevention programmes that reduce the rates of cognitive impairment and depression should result in a decreased incidence of suicide in older adults. Additionally there is some evidence for the use of hotlines or crisis centres in the elderly population; 71% fewer elderly suicides in one region of Italy were recorded where such a service also provided home visiting [140].

CONCLUSION

To summarize, prevention strategies have been the subject of an increasing amount of research in relation to mental health over the last two decades. It has been recognized that they have the potential to impact positively on the health of large numbers of peoplewho are at risk of developing mental illness, substantially reducing morbidity. There remainsignificant challenges, not least arising from the complex multifactorial aetiology of mental disorders. However, the potential value is immense, and there is much that can be gained from strategies that target those aspects of the social environment that give rise to disorder over the life course.

5. 6.

7.

8.

REFERENCES 9. 1. Caplan, G. (1964) Principles of Preventive Psychiatry, Tavistock Publications. 2. Gordon Jr, R. S. (1983) An operational classification of disease prevention. Public Health Reports, 98 (2), 107 109. 3. Munoz, R. F., Mrazek, P. J. and Haggerty, R. J. (1996) Institute of medicine report on prevention of mental disorders. Summary and commentary. American Psy chologist, 51 (11), 1116 1122. 4. P€ossel, P. (2005) Strategies for universal prevention of depression in adolescents. Journal of Indian Asso

10.

11.

ciation for Child and Adolescent Mental Health, 1 (1), 2. Rose, G. (1993) Mental disorder and the strategies of prevention. Psychological Medicine, 23 (3), 553 555. Jane Llopis, E., Hosman, C., Jenkins, R. and Ander son, P. (2003) Predictors of efficacy in depression prevention programmes. Meta analysis. British Jour nal of Psychiatry, 183, 384 397. Coie, J. D., Watt, N. F., West, S. G. et al. (1993) The science of prevention. A conceptual framework and some directions for a national research program. American Psychologist, 48 (10), 1013 1022. Saxena, S., Jane Llopis, E. and Hosman, C. (2006) Prevention of mental and behavioural disorders: impli cations for policy and practice. World Psychiatry, 5 (1), 5 14. Berkman, L. F. and Kawachi, I. (2000) Social Epide miology, Oxford University Press, Oxford. Albee, G. W. (2006) Historical overview of primary prevention of psychopathology: address to the 3rd World Conference on the Promotion of Mental Health and Prevention of Mental and Beha vioral Disorders September 15 17, 2004, Auckland, New Zealand. Journal of Primary Prevention, 27 (5), 449 456. Merry, S. N. (2007) Prevention and early intervention for depression in young people a practical possibi lity? Current Opinion in Psychiatry, 20 (4), 325 329.

PREVENTION

12. Party, P. P. C. W. (2002) Prevention in Psychiatry, Royal College of Psychiatrists. 13. Mallen, C., Mottram, S. and Thomas, E. (2008) Birth factors and common mental health problems in young adults: a population based study in North Stafford shire. Social Psychiatry and Psychiatric Epidemiol ogy, 43 (4), 325 330. 14. Smith, G. N., Flynn, S. W., McCarthy, N. et al. (2001) Low birthweight in schizophrenia: prematurity or poor fetal growth? Schizophrenia Research, 47 (2 3), 177 184. 15. Khashan, A. S., Abel, K. M., McNamee, R. et al. (2008) Higher risk of offspring schizophrenia follow ing antenatal maternal exposure to severe adverse life events. Archives of General Psychiatry, 65 (2), 146 152. 16. Brown, H. and Sturgeon, S. (2005) Promoting a healthy start in life and reducing early risks, in Pre vention of Mental Disorders: Effective Interventions and Policy Options (eds C. J. L. E. Hosman and S. Saxena), Oxford University Press, Oxford. 17. Windsor, R. A., Lowe, J. B., Perkins, L. L. et al. (1993) Health education for pregnant smokers: its behavioral impact and cost benefit. American Journal of Public Health, 83 (2), 201 206. 18. World Health Organisation (WHO) (1999) A Critical Link: Interventions for Physical Growth and Psycho logical Development. 19. Olds, D. L., Eckenrode, J., Henderson Jr, C. R. et al. (1997) Long term effects of home visitation on mater nal life course and child abuse and neglect. Fifteen year follow up of a randomized trial. Journal of the American Medical Association, 278 (8), 637 643. 20. UNICEF (2002) United Nations Children’s Fund Annual Report 2002. 21. Murray, L. and Carothers, A. D. (1990) The validation of the Edinburgh Post natal Depression Scale on a community sample. British Journal of Psychiatry, 157, 288 290. 22. Ashman, S. B., Dawson, G. and Panagiotides, H. (2008) Trajectories of maternal depression over 7 years: relations with child psychophysiology and behavior and role of contextual risks. Development and Psychopathology, 20 (1), 55 77. 23. Minkovitz, C. S., Strobino, D., Scharfstein, D. et al. (2005) Maternal depressive symptoms and children’s receipt of health care in the first 3 years of life. Pediatrics, 115 (2), 306 314.

405

24. Rahman, A., Bunn, J., Lovel, H. and Creed, F. (2007) Maternal depression increases infant risk of diarrhoeal illness a cohort study. Archives of Disease in Child hood, 92 (1), 24 28. 25. Beardslee, W. R., Keller, M. B., Lavori, P. W. et al. (1988) Psychiatric disorder in adolescent offspring of parents with affective disorder in a non referred sam ple. Journal of Affective Disorders, 15 (3), 313 322. 26. Clarke, G. N., Hornbrook, M., Lynch, F. et al. (2001) A randomized trial of a group cognitive intervention for preventing depression in adolescent offspring of depressed parents. Archives of General Psychiatry, 58 (12), 1127 1134. 27. Kazdin, A. E. (1993) Adolescent mental health. Pre vention and treatment programs. American Psychol ogist, 48 (2), 127 141. 28. Offord, D. and Bennet, K. J. (2002) Prevention, in Child and Adolescent Pychiatry (eds M. Rutter and E. Taylor), Blackwell Publishing, Oxford. 29. Greenberg, M. T., Domitrovich, C. and Bumbarger, B. (2001) The prevention of mental disorders in school aged children: current state of the field. Prevention and Treatment, 4, 1 62. 30. Giesen, F., Searle, A. and Sawyer, M. (2007) Identify ing and implementing prevention programmes for childhood mental health problems. Journal of the Paediatrics and Child Health, 43 (12), 785 789. 31. RCPsych (2002) Prevention in Psychiatry: Report of the Public Policy Committee Working Party. 32. World Health Organisation (WHO) (2004) Prevention of Mental Disorders: Effective Interventions and Pol icy Options. 33. Webster Stratton, C., Reid, M. J. and Hammond, M. (2001) Preventing conduct problems, promoting social competence: a parent and teacher training partnership in head start. Journal of Clinical Child Psychology, 30 (3), 283 302. 34. Webster Stratton, C., Reid, M. J. and Hammond, M. (2001) Social skills and problem solving training for children with early onset conduct problems: Who benefits? Journal of Child Psychology and Psychiatry, 42 (7), 943 952. 35. Sanders, M. R. (2008) Triple P Positive Parenting Program as a public health approach to strengthening parenting. Journal of Family Psychology, 22 (4), 506 517. 36. Sanders, M. R. (1999) Triple P Positive Parenting Program: towards an empirically validated multilevel

406

37.

38.

39.

40.

41.

42.

43.

44.

45.

46.

SOCIAL INTERVENTIONS

parenting and family support strategy for the preven tion of behavior and emotional problems in children. Clinical Child and Family Psychology Review, 2 (2), 71 90. Hoefnagels, C. (2005) Preventing child abuse and neglect, in Prevention of Mental Disorders: Effective Interventions and Policy Options (eds C. Hosman, E. Jane Llopis and S. Saxena), Oxford University Press, Oxford. Beardslee, W., Solantus, T. and van Doesum, K. (2005) Coping with parental mental illness, in Prevention of Mental Disorders: Effective Interventions and Policy Options (eds C. Hosman and E. Jane Llopis), Oxford University Press, Oxford. Clarke, G. N., Hawkins, W., Murphy, M. et al. (1995) Targeted prevention of unipolar depressive disorder in an at risk sample of high school adolescents: a rando mized trial of a group cognitive intervention. Journal of the American Academy of Child and Adolescent Psychiatry, 34 (3), 312 321. Domitrovitch, C. E. A. (2005) Enhancing resilience and reducing risk behaviour in schools, in Prevention of Mental Disorders: Effective Interventions and Policy Options (eds C. Hosman, E. Jane Llopis and S. Saxena), Oxford University Press, Oxford. Thompson Jr, R. G., Lizardi, D., Keyes, K. M. and Hasin, D. S. (2008) Childhood or adolescent parental divorce/separation, parental history of alcohol pro blems, and offspring lifetime alcohol dependence. Drug and Alcohol Dependence, 98 (3), 264 269. Cherlin, A. J., Furstenberg Jr, F. F., Chase Lansdale, L. et al. (1991) Longitudinal studies of effects of divorce on children in Great Britain and the United States. Science, 252 (5011), 1386 1389. Mack, K. Y. (2001) Childhood family disruptions and adult well being: the differential effects of divorce and parental death. Death Studies, 25 (5), 419 443. McMunn, A. M., Nazroo, J. Y., Marmot, M. G. et al. (2001) Children’s emotional and behavioural well being and the family environment: findings from the Health Survey for England. Social Science and Med icine, 53 (4), 423 440. Sandler, I. N., Ayers, T. S., Wolchik, S. A. et al. (2003) The family bereavement program: efficacy evaluation of a theory based prevention program for parentally bereaved children and adolescents. Journal of Con sulting and Clinical Psychology, 71 (3), 587 600. Wolchik, S. A., West, S. G., Westover, S. et al. (1993) The children of divorce parenting intervention: out

47.

48.

49.

50.

51. 52.

53.

54.

55.

56.

57.

58.

come evaluation of an empirically based program. American Journal of Community Psychology, 21 (3), 293 331. Wolchik, S. A., West, S. G., Sandler, I. N. et al. (2000) An experimental evaluation of theory based mother and mother child programs for children of divorce. Journal of Consulting and Clinical Psychology, 68 (5), 843 856. Wolchik, S. A., Sandler, I. N., Millsap, R. E. et al. (2002) Six year follow up of preventive interventions for children of divorce: a randomized controlled trial. Journal of the American Medical Association, 288 (15), 1874 1881. Sandler, I., Ayers, T. and Dawson McClure, S. (2005) Dealing with family dusruption: divorce and bereave ment, in Prevention of Mental Disorders: Effective Interventions and Policy Options (eds C. Hosman, E. Jane Llopis and S. Saxena), Oxford University Press, Oxford. Meltzer, H. G., Gatward, R., Corbin, T. et al. (2003) The Mental Health of Young People Looked after by Local Authorities in England. Foresight (2008) Looked After Children. Lewinsohn, P. M., Rohde, P., Seeley, J. R. et al. (2000) Natural course of adolescent major depressive disorder in a community sample: predictors of recurrence in young adults. American Journal of Psychiatry, 157 (10), 1584 1591. Horowitz, J. L. and Garber, J. (2006) The prevention of depressive symptoms in children and adolescents: a meta analytic review. Journal of Consulting and Clin ical Psychology, 74 (3), 401 415. Shochet, I. M., Dadds, M. R., Holland, D. et al. (2001) The efficacy of a universal school based program to prevent adolescent depression. Journal of Clinical Child Psychology, 30 (3), 303 315. Lynch, F. L., Hornbrook, M., Clarke, G. N. et al. (2005) Cost effectiveness of an intervention to prevent depression in at risk teens. Archives of General Psy chiatry, 62 (11), 1241 1248. Simon, G. E., Goldberg, D. P., Von Korff, M. and Ustun, T. B. (2002) Understanding cross national differences in depression prevalence. Psychological Medicine, 32 (4), 585 594. Haney, P. and Durlak, J. A. (1998) Changing self esteem in children and adolescents: a meta analytic review. Journal of Clinical Child Psychology, 27 (4), 423 433. Hafner, H., Maurer, K., Ruhrmann, S. et al. (2004) Early detection and secondary prevention of psycho

PREVENTION

59.

60.

61.

62.

63.

64.

65.

66.

67. 68. 69.

70.

sis: facts and visions. European Archives of Psychiatry and Clinical Neuroscience, 254 (2), 117 128. Valmaggia, L. R., McCrone, P., Knapp, M. et al. (2009) Economic impact of early intervention in people at high risk of psychosis. Psychological Medicine, 39 (10), October, 1617 1626. Pratt, B. M. and Woolfenden, S.R. (2002) Interven tions for preventing eating disorders in children and adolescents. Cochrane Database of Systematic Reviews, Issue 2. Art. No.: CD002891. DOI: 10.1002/14651858.CD002891. Kemkel, D. and Chen, L. (2000) Consumer informa tion and tobacco use, in Tobacco Control in Develop ing Countries (ed. P. Jha and F. J. Chaloupka), Oxford Medical Publications, Oxford. Lancaster, T. and Stead, L. F. (2005) Individual behavioural counselling for smoking cessation. Cochrane Database of Systematic Reviews, Issue 2. Art. No.: CD001292. DOI: 10.1002/14651858. CD001292.pub2. Jenkins, R., Bhugra, D., Meltzer, H. et al. (2005) Psychiatric and social aspects of suicidal behaviour in prisons. Psychological Medicine, 35 (2), 257 269. Weich, S. and Lewis, G. (1998) Poverty, unemploy ment, and common mental disorders: population based cohort study. British Medical Journal, Clinical Research edition, 317 (7151), 115 119. Jenkins, R., Bhugra, D., Bebbington, P. et al. (2008) Debt, income and mental disorder in the general population. Psychological Medicine, 38 (10), 1485 1493. CBI (2005) Work Related Stress: A Guide. Imple menting a European Social Partner Agreement, Con federation of British Industry. HSC (2004) Helping Business Cut the Cost of Work Related Stress, Health and Safety Commission. Foresight (2008) Wellbeing and Work: Future Chal lenges, Government Office for Science. Heaney, C. A., Price, R. H. and Rafferty, J. (1995) The Caregiver Support Program: an intervention to increase employee coping resources and enhance men tal health, in Job Stress Interventions (eds L. R. Murphy, J. J. Hurrell, S. L. Sauter and G. P. Keita), American Psychological Association, Washington, DC, pp. 93 108. McLeod, J. (2001) Counselling in the Workplace: The Facts: A Systematic Study of the Research Evidence, British Association for Counselling and Psychotherapy.

407

71. Strawbridge, W. J., Deleger, S., Roberts, R. E. and Kaplan, G. A. (2002) Physical activity reduces the risk of subsequent depression for older adults. American Journal of Epidemiology, 156 (4), 328 334. 72. Penninx, B. W., Rejeski, W. J., Pandya, J. et al. (2002) Exercise and depressive symptoms: a comparison of aerobic and resistance exercise effects on emotional and physical function in older persons with high and low depressive symptomatology. Journals of Geron tology Series B: Psychological Sciences and Social Sciences, 57 (2), P124 P132 73. Harris, T., Brown, G. W., and Robinson, R. (1999) Befriending as an intervention for chronic depression among women in an inner city. 1: randomised con trolled trial. British Journal of Psychiatry, 174, 219 224. 74. Jonkers, C., Lamers, F., Bosma, H. et al. (2007) Process evaluation of a minimal psychological inter vention to reduce depression in chronically ill elderly persons. Patient Education and Counseling, 68 (3), 252 257. 75. Wolff, J. L. (2007) Guided care: education and support for informal caregivers. The Gerontologist, 47 (1), S650. 76. Ong, P. S. (2003) Late life depression: current issues and new challenges. Annals of the Academy of Med icine, Singapore, 32 (6), 764 770. 77. Wells, K., Sherbourne, C., Duan, N. et al. (2005) Quality improvement for depression in primary care: Do patients with subthreshold depression benefit in the long run? The American Journal of Psychiatry, 162 (6), 1149 1157. 78. Bortolotti, B., Menchetti, M., Bellini, F. et al. (2008) Psychological interventions for major depression in primary care: a meta analytic review of randomized controlled trials. General Hospital Psychiatry, 30 (4), 293 302. 79. Wells, K.B., Tang, L., Miranda, J. et al. (2008) The effects of quality improvement for depression in pri mary care at nine years: results from a randomized, controlled group level trial. Health Services Research, 43 (6), 1952 1974. 80. Bohlmeijer, E., Smit, F. and Cuijpers, P. (2003) Effects of reminiscence and life review on late life depression: a meta analysis. International Journal of Geriatric Psychiatry, 18 (12), 1088 1094. 81. Pinquart, M., Duberstein, P. R. and Lyness, J. M. (2007) Effects of psychotherapy and other behavioral interventions on clinically depressed older adults: a

408

82.

83.

84.

85.

86.

87.

88.

89.

90.

91.

92.

SOCIAL INTERVENTIONS

meta analysis. Aging and Mental Health, 11 (6), 645 657. Gallo, J. J. and Lebowitz, B. D. (1999) The epidemiol ogy of common late life mental disorders in the com munity: themes for the new century. Psychiatric Ser vices, 50 (9), 1158 1166. Gallo, J. J., Rabins, P. V. and Iliffe, S. (1997) The ‘research magnificent’ in late life: psychiatric epide miology and the primary health care of older adults. International Journal of Psychiatry in Medicine, 27 (3), 185 204. Tschanz, J. T., Treiber, K., Norton, M. C. et al. (2005) A population study of Alzheimer’s disease: findings from the Cache County Study on Memory, Health, and Aging. Care Management Journals, 6 (2), 107 114. Zandi, P. P., Anthony, J. C., Hayden, K. M. et al. (2002) Reduced incidence of AD with NSAID but not H2 receptor antagonists: the Cache County Study. Neu rology, 24, 59 (6), 880 886. Hayden, K. M., Zandi, P. P., Khachaturian, A. S. et al. (2007) Does NSAID use modify cognitive trajectories in the elderly? The Cache County study. Neurology, 69 (3), 275 282. Zandi, P. P., Sparks, D. L., Khachaturian, A. S. et al. (2005) Do statins reduce risk of incident dementia and Alzheimer disease? The Cache County Study. Archives of General Psychiatry, 62 (2), 217 224. Bernick, C., Katz, R., Smith, N. L. et al. (2005) Statins and cognitive function in the elderly: the Cardiovas cular Health Study. Neurology, 65 (9), 1388 1394. Wengreen, H.J., Munger, R.G., Corcoran, C.D. et al. (2007) Antioxidant intake and cognitive function of elderly men and women: the Cache County Study. Journal of Nutrition, Health & Aging, 11 (3), 230 237. Shumaker, S. A., Legault, C., Rapp, S. R. et al. (2003) Estrogen plus progestin and the incidence of dementia and mild cognitive impairment in postmenopausal women: the Women’s Health Initiative Memory Study: a randomized controlled trial. Journal of the American Medical Association, 289 (20), 2651 2662. Zandi, P. P., Carlson, M. C., Plassman, B. L. et al. (2002) Hormone replacement therapy and incidence of Alzheimer disease in older women: the Cache County Study. Journal of the American Medical Association, 288 (17), 2123 2129. Petitti, D. B., Crooks, V. C., Chiu, V. et al. (2008) Incidence of dementia in long term hormone users. American Journal of Epidemiology, 167 (6), 692 700.

93. Almeida, O. P. and Flicker, L. (2005) Association between hormone replacement therapy and dementia: is it time to forget? International Psychogeriatrics/ IPA, 17 (2), 155 164. 94. SHEP Cooperative Research Group (1991) Prevention of stroke by antihypertensive drug treatment in older persons with isolated systolic hypertension. Final results of the Systolic Hypertension in the Elderly Program (SHEP). Journal of the American Medical Association, 265 (24), 3255 3264. 95. Prince, M., Lewis, G., Bird, A. et al. (1996) A long itudinal study of factors predicting change in cognitive test scores over time, in an older hypertensive popula tion. Psychological Medicine, 26 (3), 555 568. 96. Lithell, H., Hansson, L., Skoog, I. et al. (2003) The Study on Cognition and Prognosis in the Elderly (SCOPE): principal results of a randomized double blind intervention trial. Journal of Hypertension, 21 (5), 875 886. 97. Peters, R., Beckett, N., Forette, F. et al. (2008) Incident dementia and blood pressure lowering in the Hyper tension in the Very Elderly Trial cognitive function assessment (HYVET COG): a double blind, placebo controlled trial. Lancet Neurology, 7 (8), 683 689. 98. Khachaturian, A. S., Zandi, P. P., Lyketsos, C. G. et al. (2006) Antihypertensive medication use and incident Alzheimer disease: the Cache County Study. Archives of Neurology, 63 (5), 686 692. 99. Tzourio, C., Anderson, C., Chapman, N. et al. (2003) Effects of blood pressure lowering with perindopril and indapamide therapy on dementia and cognitive decline in patients with cerebrovascular disease. Archives of Internal Medicine, 163 (9), 1069 1075. 100. Bosch, J., Yusuf, S., Pogue, J. et al. (2002) Use of ramipril in preventing stroke: double blind randomised trial. British Medical Journal, Clinical Research edi tion, 324 (7339), 699 702. 101. Forette, F., Seux, M. L., Staessen, J. A. et al. (2002) The prevention of dementia with antihypertensive treatment: new evidence from the Systolic Hyperten sion in Europe (Syst Eur) study. Archives of Internal Medicine, 162 (18), 2046 2052. 102. Forette, F., Seux, M. L., Staessen, J. A. et al. (1998) Prevention of dementia in randomised double blind placebo controlled Systolic Hypertension in Europe (Syst Eur) trial. Lancet, 352 (9137), 1347 1351. 103. Poon, I. O. (2008) Effects of antihypertensive drug treatment on the risk of dementia and cognitive impair ment. Pharmacotherapy, 28 (3), 366 375.

PREVENTION

104. Laurin, D., Verreault, R., Lindsay, J. et al. (2001) Physical activity and risk of cognitive impairment and dementia in elderly persons. Archives of Neurology, 58 (3), 498 504. 105. Lautenschlager, N. T. and Almeida, O. P. (2006) Physical activity and cognition in old age. Current Opinion in Psychiatry, 19 (2), 190 193. 106. Lautenschlager, N. T., Cox, K. L., Flicker, L. et al. (2008) Effect of physical activity on cognitive function in older adults at risk for Alzheimer disease: a rando mized trial. Journal of the American Medical Associa tion, 300 (9), 1027 1037. 107. Larson, E. B., Wang, L., Bowen, J. D. et al. (2006) Exercise is associated with reduced risk for incident dementia among persons 65 years of age and older. Annals of Internal Medicine, 144 (2), 73 81. 108. van Gelder, B. M., Tijhuis, M. A., Kalmijn, S. et al. (2004) Physical activity in relation to cognitive decline in elderly men: the FINE Study. Neurology, 63 (12), 2316 2321. 109. Hamer, M. and Chida, Y. (2009) Physical activity and risk of neurodegenerative disease: a systematic review of prospective evidence. Psychological Medicine, 39 (1), 1 9. 110. Wang, L., Larson, E. B., Bowen, J. D. and van Belle, G. (2006) Performance based physical function and future dementia in older people. Archives of Internal Medicine, 166 (10), 1115 1120. 111. Rolland, Y., Abellan van Kan, G., and Vellas, B. (2008) Physical activity and Alzheimer’s disease: from pre vention to therapeutic perspectives. Journal of the American Medical Directors Association, 9 (6), 390 405. 112. Bots, S., Tijhuis, M., Giampaoli, S. et al. (2008) Lifestyle and diet related factors in late life depres sion a 5 year follow up of elderly European men: the FINE study. International Journal of Geriatric Psy chiatry, 23 (5), 478 484. 113. Cooper Patrick, L., Ford, D. E., Mead, L. A. et al. (1997) Exercise and depression in midlife: a prospec tive study. American Journal of Public Health, 87 (4), 670 673. 114. Lennox, S. S., Bedell, J. R. and Stone, A. A. (1990) The effect of exercise on normal mood. Journal of Psy chosomatic Research, 34 (6), 629 636. 115. Weyerer, S. (1992) Physical inactivity and depression in the community: evidence from the upper Bavarian field study. International Journal of Sports Medicine, 13, 492 496.

409

116. Paffenbager, R. J., Lee, I. M. and Leung, R. (1994) Physical activity and personal characteristics asso ciated with depression and suicide in American col lege men. Acta Psychiatrica Scandinavica Supple ment, 377, 16 22. 117. Camacho, T., Roberts, R. E., Lazarus, N. B. et al. (1991) Physical activity and depression: evidence from the Alameda County Study. American Journal of Epidemiology, 134, 220 231. 118. Farmer, M., Locke, B. Z., Moscicki, E. K. et al. (1988) Physical activity and depressive symptoms: the NHANES I Epidemiologic Follow up Study. Amer ican Journal of Epidemiology, 128 (6), 1340 1351. 119. De Moor, M. H., Beem, A. L., Stubbe, J. H. et al. (2006) Regular exercise, anxiety, depression and per sonality: a population based study. Preventive Medi cine, 42 (4), 273 279. 120. Garrow, J. S. (1986) Effect of exercise on obesity. Acta Medica Scandinavica. Supplementum, 711, 67 73. 121. Bouchard, C., Depres, J. P. and Tremblay, A. (1993) Exercise and obesity. Obesity Research, 1 (2), 133 147. 122. Blackburn, H. (1986) Physical activity and hyperten sion. Journal of Clinical Hypertension, 2 (2), 154 162. 123. Erikssen, J., Forfang, K. and Jervell, J. (1981) Cor onary risk factors and physical fitness in healthy middle aged men. Acta Medica Scandinavica. Supple mentum, 645, 57 64. 124. Cooper, K. H. (1982) Physical training programs for mass scale use: effects on cardiovascular disease facts and theories. Annals of Clinical Research, 14 (suppl. 34), 25 32. 125. Gill, J. M. and Cooper, A. R. (2008) Physical activity and prevention of type 2 diabetes mellitus. Sports Medicine, 38 (10), 807 824. 126. Colberg, S. R. (2007) Physical activity, insulin action, and diabetes prevention and control. Current Diabetes Reviews, 3 (3), 176 184. 127. Glass, T. A., De Leon, C. F., Bassuk, S. S. and Berk man, L. F. (2006) Social engagement and depressive symptoms in late life: longitudinal findings. Journal of Aging and Health, 18 (4), 604 628. 128. Haight, B. K., Michel, Y. and Hendrix, S. (1998) Life review: preventing despair in newly relocated nursing home residents short and long term effects. Interna tional Journal of Aging and Human Development, 47 (2), 119 142.

410

SOCIAL INTERVENTIONS

129. Murray, C. J. L. and Lopez, A. D. (1996) The Global Burden of Disease: A Comprehensive Assessment of Mortality and Disability from Diseases, Injuries, and Risk Factors in 1990 and Projected to 2020: Summary. Harvard School of Public Health on behalf of the World Health Organization and the World Bank, Cam bridge, Massachusetts. 130. Leenars, A. (2001) Controlling the environment to prevent suicide, in Suicide, An Unnecessary Death (ed. D. Wasserman), Martin Dunitz. 131. Montgomery, S. A., Dunner, D. L. and Dunbar, G. C. (1995) Reduction of suicidal thoughts with paroxetine in comparison with reference antidepressants and placebo. European Neuropsychopharmacology: The Journal of the European College of Neuropsychophar macology, 5 (1), 5 13. 132. Department of Health (1992) Health of the Nation, Department of Health, London. 133. Department of Health (1999) Our Healthier Nation, Department of Health, London. 134. Foresight (2008) Mental Capital and Wellbeing: Final Report. Reductions in Suicide A UK Success Story, Chapter 4, p. 160. London.

135. UN (1999) Prevention of Suicide Guidelines for the Formation and Implementation of National Strate gies, United Nations, New York. 136. Zenere 3rd, F. J. and Lazarus, P. J. (1997) The decline of youth suicidal behavior in an urban, multicultural public school system following the introduction of a suicide prevention and intervention program. Suicide and Life Threatening Behaviour, 27 (4), 387 402. 137. Conwell, Y., Duberstein, P. R. and Caine, E. D. (2002) Risk factors for suicide in later life. Biological Psy chiatry, 52 (3), 193 204. 138. Tadros, G. and Salib, E. (2007) Elderly suicide in primary care. International Journal of Geriatric Psy chiatry, 22 (8), 750 756. 139. Ayalon, L., Mackin, S., Arean, P. A. et al. (2007) The role of cognitive functioning and distress in suicidal ideation in older adults. Journal of the American Geriatrics Society, 55 (7), 1090 1094. 140. De Leo, D., Dello Buono, M. and Dwyer, J. (2002) Suicide among the elderly: the long term impact of a telephone support and assessment intervention in northern Italy. British Journal of Psychiatry, 181, 226 229.

31 Principles of social intervention Richard Warner University of Colorado and Colorado Recovery, Boulder, USA

Social interventions are those interventions that are not primarily biophysical or psychological in nature. Biophysical interventions include medications, electroconvulsive therapy, psychosurgery, physical restraints (and, in the past, insulin coma therapy and any number of Victorian whirling, douching, wrapping, heating, cooling and electrical treatments). In the future they may include gene therapy. Psychological interventions are individually oriented forms of psychotherapy. The site for these interventions is usually a practitioner’s office or a hospital. The location of social interventions is often outside the hospital or office and in the community. Social interventions require a knowledge of the client’s social, cultural and political economic world and address problems in those domains.

31.1 31.1.1

To develop an understanding of the principles underlying social interventions it is helpful to look at the great historical movements in psychiatry that have stimulated the invention and reinvention of social and environmental methods that aid the recovery of people with mental illness. These movements include moral treatment, which was a product of the late eighteenth century Enlightenment; the mental hygiene movement of early twentieth century America; the post-World War II social psychiatry revolution in northern Europe; and modern approaches to psychosocial rehabilitation, which have become allied to the late twentieth century recovery model. Let us take a brief look at these movements and see what they teach us. The principles that they illuminate are itemized in Table 31.1.

HISTORICAL PRECEDENTS

Moral treatment

The York Retreat was opened in 1796 by the Society of Friends as a reaction against the inhumanity of the contemporary treatment of the insane, after one of its members died in the York Asylum under circumstances that suggested neglect or ill-treatment.

A Swiss visitor’s description of the Retreat reveals, ‘It is not at all the idea of a prison that it suggests, but rather that of a large farm; it is surrounded by a great walled garden. No bars, no grilles on the windows’ ([1], p. 47). Under the direction of William Tuke, a 60-year-old merchant, a style of nonmedical care was developed that, like Pinel’s action in striking the

Principles of Social Psychiatry, second edition Edited by Craig Morgan and Dinesh Bhugra Ó 2010 John Wiley & Sons, Ltd.

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Table 31.1

Principles of social interventions in psychiatry

Treatment approach Multidisciplinary, flexible, empowering Reduced reliance on drug treatment User/consumer participation in treatment Treatment location Local and accessible In the community Treatment setting Small, domestic, normalizing Encouragement of individual self control Reduction of coercion and confinement Involvement of the larger community Collaboration with other social agencies Fighting stigma Political advocacy Respect for human rights The importance of client communities Empowerment: transfer of power from service providers to service users The value of work Therapeutic optimism Understanding biological, psychological, social, cultural and political economic factors

chains from the inmates of the Bic^etre in 1793, came to be called moral treatment. Believing that most deranged people could be rational if not provoked by harsh treatment or cruelty, Tuke encouraged the exercise of patients’ self-control as an alternative to the use of external restraint. Punishment was avoided, but privileges were awarded to those who conformed to the attendants’ wishes. Chains were never used and straight waistcoats rarely. Patients were expected to dress in their best clothes and take part in their usual social activities tea parties, reading, writing, sewing and gardening. Work was felt to be essential in fostering patients’ self-control and self-esteem. Drugs were seldom used, and exercise, warm baths and a generous diet of ‘meat, bread and good porter’ were felt to be most useful in quieting patients and ensuring sleep [2]. Moral treatment became widely used in British private madhouses and the advertising handbills of

the proprietors of these establishments boasted of high cure rates if patients were admitted early in their illness. The optimism generated by the results observed with early intervention and the use of moral treatment became an important stimulus for the growth of the British asylum movement. Although moral treatment in British asylums was generally apparent in name only, in early nineteenth century American institutions the method was often practised with most of the basic principles intact, resulting in high rates of recovery, later derided by asylum superintendants, who had abandoned the approach, as the ‘cult of curability’ [2]. Central to the revolutionary methods of Tuke and others was the redefinition of the insane person from a beast to a human with rational capacity. Before the advent of moral treatment, even George III, during his bouts of insanity, was chained, beaten, starved and intimidated with threats, as if he were an animal whose instincts must be governed [3]. Tuke’s patients, though human, were not yet adult; they were seen as ‘children who have too much energy and put it to dangerous uses’ ([1], p. 49). Other principles of moral treatment that emerge are the use of small, domestic, normalizing, treatment environments rather than institutions; the encouragement of individual self-control leading to the reduction of coercion, confinement and physical restraint; the value of work; treating the person with respect to help maintain his or her self-esteem; a decreased reliance on drug treatment; and the importance of therapeutic optimism.

31.1.2

Mental hygiene movement

During the late nineteenth century, institutional confinement and therapeutic nihilism dominated the care of the mentally ill. However, in the early twentieth century therapeutic optimism was rediscovered, in the American mental hygiene movement, along with the principles of community involvement, combating stigma, multidisciplinary collaboration and participation by people with mental illness themselves. In 1908, Clifford Beers, a young businessman who had been repeatedly institutionalized with manic

PRINCIPLES OF SOCIAL INTERVENTION

depressive illness published A Mind That Found Itself, exposing the horrors of asylum conditions. He captured the support of prominent psychiatrists and spurred a movement to institute reforms in mental hospital care, educate the public about mental illness and support preventive interventions such as better childrearing. His efforts, and those of his associates, led to the foundation of child guidance clinics and the National Association for Mental Health [4,5]. Beers [6] claimed that the mental hygiene movement led the general public to regard mental illness as ‘a disease and not as a disgrace’ (p. 743) and that it had brought psychiatrists into collaboration ‘with leaders in education, law, religion and in social work’ (p. 743).

31.1.3

Northern European social psychiatry revolution

The Great Depression brought a period of increased reliance on institutional confinement and physical methods of treatment, but, beginning in 1945, British psychiatrists reported an improved pattern of care for hospitalized mentally ill people compared with conditions a decade earlier. They observed an increased number of open wards, more freedom for patients, the abolition of restraint and a decreased use of seclusion. These reforms led to a reduction in patients’ aggressiveness and incontinence [7]. In 1949, Bell unlocked all the wards of Dingleton Hospital in the Borders of Scotland, launching an open-door movement in psychiatry that swept the Western world in the following years. These changes, we should note, preceded the introduction of the first antipsychotic medication in 1954. Contemporary psychiatrists in Britain and Norway observed improvements in outcome for patients exposed to the enhanced hospital settings and noted that the eventual introduction of antipsychotic drug treatment had relatively little effect on patients who were receiving the benefits of these environmental conditions; it was in unreformed hospitals and treatment units that the drugs were seen to offer their greatest impact [2,8,9]. Beginning in 1946, British psychiatrists developed new patterns of institutional living called ‘therapeutic

413

communities’. In these hospital units, therapists and patients worked together to create an environment in which traditional institutional authority was broken down patients participated in the government of the ward, uniforms were abandoned and staff and patient roles blurred. Initially, these novel treatment units were for patients with personality disorders, but, in due course, the idea was introduced into wards for people with psychosis. At Littlemore Hospital, in Oxford, and Dingleton Hospital, in Melrose, throughout the 1960s, therapeutic communities were established in multiple wards throughout the hospital. On the general adult unit in Littlemore Hospital, staff and some 60 psychiatric patients participated in daily community meetings that established ward policy, evaluated new admissions, held interviews with patients’ families, prescribed treatment and authorized discharges. The hospital reforms, innovations and therapeutic optimism were geared to early discharge and community treatment. Long-term institutionalized patients developed social competence and were placed in hostels, returned to their families or set up in family-style, group homes. Psychiatrists and nurses left the hospital to visit patients in their homes and consult with family physicians and community mental health workers. Day hospitals became widely used in Britain in the 1950s, and home treatment programmes and sheltered workshops were established in Holland and Britain [2,10,11]. Many of the ‘innovations’ of the post-war social psychiatry revolution were rediscoveries of the moral treatment approaches. Reduced coercion and confinement, the abolition of restraint, the emphasis on patient self-control, therapeutic optimism, work therapy and early discharge were all features of moral treatment. However, whereas in the York Retreat the insane person was redefined from bestial to child-like, in the therapeutic community he/she advanced to adult status perhaps not always a fully rational adult but, certainly, adult [2]. The novel contribution of the postwar social psychiatry revolution was the concept of empowerment in the therapeutic community the patient became a person with much more power in the institutional setting than he/she had ever had before.

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31.2

MODERN REHABILITATION MODELS

Curiously, this concept of empowerment indeed, the entire therapeutic community model was being simultaneously and independently developed in the United States, but, in this instance, in the community, not in the hospital. Fountain House, the first psychosocial clubhouse, was founded in New York City in 1948 by ex-patients of Rockland State Hospital, initially as a place to gather and eat, then growing into something more comprehensive. Members (people with mental illness) and staff worked together to run the operations of the clubhouse, put out the newsletter, prepare meals, staff the reception desk or serve in the thrift shop. Developing an international reputation, Fountain House received hundreds of visitors a year, established a training programme, launched a national clubhouse expansion programme and, finally, founded the International Center for Clubhouse Development in 1994. By 2006 there were 197 certified clubhouses in the USA and 116 in 26 other countries around the world [12]. Foremost among the components of the model are democratic decision making and governance and the ‘work-ordered day’ a structured eighthour day in which members and staff work side by side on clubhouse work. There are no member-only or staff-only meetings and no psychiatric treatment on premises. The clubhouse is a space owned by the members, not the treatment system [13 15]. Empowerment, treating the person with mental illness with respect, absence of coercion (membership must be voluntary) and the importance of work, these are the principles embodied in the clubhouse model. The emphasis on work is evident in the employment programmes generated by psychosocial clubhouses. Initially, these work programmes took the form of transitional employment programmes in which temporary (three- to nine-month) part-time job placements were found for members in local businesses. Job coaches learned how to do the job, trained the member and provided long-term support to him or her in the position. More recently, these placements have taken the form of continuous supported employment, in which the job placement is permanent. The approach has grown into a successful model with broader reach than the clubhouse.

Supported employment, and its recent refinement, individual placement and support (IPS), has been proven effective in maintaining people with mental illness in competitive work in a large number of studies conducted in North America and, more recently, Europe [16]. The core principles of the model include a focus on competitive, rather than sheltered, employment; rapid job search, instead of extended pre-employment assessment and training; integration of the vocational and treatment services; paying attention to clients’ job preferences; and providing time-unlimited, individual job support [17]. Inherent in this approach are some important principles of social intervention involving the community (in this case, employers) in assisting the social integration of people with mental illness; using a noninstitutional approach (no sheltered workshops); and showing respect for the person’s preferences and strengths. Another vocational model that has gained strength in recent decades is the social firm. Social firms, or affirmative businesses as they are known in North America, are businesses created with a dual mission to employ people with disabilities and to provide a needed product or service. The model was developed for people with psychiatric disabilities in northern Italy in the 1970s and, by diffusion, has gained prominence throughout Europe and Australasia. Independent of European influence, affirmative businesses have also developed in North America and East Asia. Over a third of employees in social firms are people with a disability or labour-market disadvantage. Every worker is paid a fair market wage, accommodations are made for disabled workers’ needs, and all employees have the same rights and obligations. Hard to achieve, but important nevertheless, the business must operate eventually as a viable concern, free of subsidy. Advantages of the socialfirm model include opportunities for empowerment and the development of a feeling of community in the workplace [18]. The post-war period has also provided the opportunity for the development of a number of alternatives to the hospital for acute psychiatric treatment. Small, noncoercive, open-door, domestic settings

PRINCIPLES OF SOCIAL INTERVENTION

providing essentially the same services as a psychiatric hospital unit have been operating for decades in many places around the world, including Boulder, Colorado; Vancouver, British Columbia; Trieste, Italy; and cities in the Netherlands [19]. Crisis homes private family homes that take in people with acute psychiatric problems while they receive treatment services from the mental health system have been developed in Colorado and Wisconsin in the USA, in Sydney, Australia, and elsewhere [19].

31.3

Assertive community treatment teams and mobile crisis home treatment teams in many countries around the world have provided in-home treatment to acutely disturbed clients [20,21]. The principals of social interventions inherent in all these alternatives to hospital treatment include the perceived advantages of small, domestic, noncoercive settings, the avoidance of institutional care and the involvement of the local community in providing care and fostering social integration.

RECOVERY MODEL

As recognition has grown in recent years of the importance of social integration for people with mental illness if they are to achieve a good outcome from illness, many of the principles underlying social interventions have received support from a social movement called the recovery model. The model, which is influencing service development in Britain, the US and elsewhere [22], refers both to the subjective experiences of optimism, empowerment and interpersonal support experienced by people with mental illness, their carers and service providers, and to the creation of services that engender a positive attitude towards recovery and a support for human rights. The roots of the recovery model may be found in both the service-user/consumer movement and professionals involved in psychiatric rehabilitation. Consumer activists have reinforced the drive towards empowerment, collaboration, and recognition of human rights. Rehabilitation professionals, on the other hand, have emphasized the need for services that recognize the value of work and the sense of community in the lives

31.4 31.4.1

415

of people with mental illness, and the importance of environmental factors in helping people with psychiatric disorders achieve their best functioning potential [23]. The model calls for the provision of education about psychiatric disorders as a way to empower users/ consumers to collaborate with service providers in managing their own illnesses. Collaborative models, such as the psychosocial clubhouse and educational programmes that involve both professionals and consumers as teachers, are seen as important elements of recovery-oriented services. The model has generated renewed interest in fighting stigma and the creation of user-run services that offer advocacy, mentoring and peer support via such mechanisms as user-run ‘warmlines’ (peer-to-peer supportive chatlines) and drop-in centres [24,25]. At this point we may discuss in more detail the principles of social intervention that have emerged from these social psychiatry movements of the past two centuries.

PRINCIPLES

Treatment approach

31.4.1.1 Multidisciplinary, flexible and empowering services Being mentally ill in the developed world can be close to a full-time job attending treatment; meeting with the vocational counsellor; applying for disability

benefits, food stamps and rent subsidy; appealing against the rejection of benefits; taking care of a household and managing a personal budget without the necessary skills; and, for some, looking for housing after being evicted or responding to criminal charges. Clearly, to help a disabled client make his/ her way through this maze, a multidisciplinary team of nurses, case managers, social workers, psychologists

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SOCIAL INTERVENTIONS

and others is needed. The psychiatrist is a member of the multidisciplinary team, but not necessarily the leader. He or she needs to understand the important roles of the other team members to avoid being marginalized. Clients themselves should be partners in the treatment plan and the service should be flexible enough to adapt to clients’ needs and preferences.

technicians and residential counsellors in order to enhance patient collaboration in the treatment process [2]. It is becoming more routine to ask people with mental illness, if they approve, to include family members in discussions about their treatment. Consumers, family members and mental health professionals negotiate what plan works for all involved, rather than leaving the psychiatrist to prescribe all aspects of treatment.

31.4.1.2 Reduced reliance on drug treatment As in the York Retreat, a treatment team with a social orientation may have a reduced emphasis on drug treatment: the focus may be on such interventions as family support and education, substance abuse counselling, life skills training or vocational rehabilitation. Eliminating all the patient’s symptoms with medication may not be an appropriate goal if higher doses of medication reduce his or her working capacity. A multicentre study in Finland revealed that clinics that used a family-centred treatment approach in psychosis with minimal use of antipsychotic medication were able to achieve outcomes that were equal to those obtained in clinics relying on drug treatment [26]. Residential programmes using minimal doses of antipsychotic drugs with people in early psychosis have demonstrated outcomes equal to those of standard, drug-oriented, hospital treatment [27,28].

31.4.2

Treatment location

31.4.2.1 Local and accessible treatment An important principle of the provision of psychiatric services is that they should be local and accessible. In Trieste, Italy, outpatient clinics and day centres are dispersed throughout the city, within walking distance of the homes of most clients. Easily accessible provision of services is, of course, difficult in sparsely populated parts of the world, like much of the American West, but the development of local residential treatment facilities as alternatives to admission to the state hospital, several hours drive away, can be a valuable resource. The problem of providing psychiatric and medical resources to far-flung areas is also eased by the availability of remote video evaluation and treatment by professionals located in urban centres.

31.4.1.3 User/consumer participation in treatment

31.4.2.2 In the community

The recovery model is sounding the death-knell for paternalism in the treatment of people with mental illness. Whereas a psychiatrist, a few years ago, might have said to her patient, ‘I’d like you to take this medication. I think it is the right one for your condition’, today, after explaining why she has arrived at a certain diagnosis, she might invite the patient to join her in looking at a computer website listing side effects to different medications so that they can, together, select the most suitable one. Beyond that, many mental health agencies are hiring people with a history of serious mental illness in various treatment roles as case manager aides, job coaches, pharmacy

Social interventions often offer treatment in the community, using real-life settings for training and other services. People with serious mental illness often have difficulty transferring learning from one social situation to another (‘generalizing’). The most effective learning takes place in the setting where it is to be applied subsequently [29]. In one recent study, people with schizophrenia showed greater and faster improvement in functioning when their classroombased social skills training was augmented with community-based training [30]. Examples of modern programmes that take advantage of in vivo learning are supported employment and its hybrid, individual

PRINCIPLES OF SOCIAL INTERVENTION

placement and support, in which client/workers are trained and supported by job coaches at the worksite.

31.4.3

Type of treatment setting

417

placed in restraints and be relieved of responsibility for his or her actions (and life in general). Such a person, admitted to a private family crisis home in Madison [31], for example, would not dream of indulging in such behaviour, as this is not what is expected of a ‘guest’.

31.4.3.1 Small, domestic, normalizing settings Most people, if they need treatment for an acute psychiatric problem, would prefer to be in a small, noncoercive, domestic-style treatment setting, rather than in an alienating institutional environment like a hospital. They would prefer, for example, an acute residential treatment facility, such as Cedar House in Boulder or Venture in Vancouver [19]. These settings are open-door, genuinely in the community and more normalizing they allow the user to stay in touch with his or her friends, relatives, work and social life. They are flexible and more able to adapt to the needs of the individual user and they involve the residents in running their own environment, an empowering element of the treatment programme. The cost of treatment is much lower and the pace of treatment is not as fast as hospital treatment, allowing the use of lower doses of medication and more time for the person to recover.

31.4.3.2 Encouragement of individual self-control The user’s preference for the noninstitutional setting has an important effect on outcome. Residents in the domestic alternative must call upon their inner resources, exercise self-control and accept responsibility for their actions and for the management of their environment. The noncoercive nature of the setting requires staff to deal with a person in crisis through human contact rather than physical restraint. These differences in the relationship between the person and the environment, and the staff and their charges, are the essence of moral treatment a call upon the person with mental illness to exercise ‘moral restraint’ and upon the staff to help the person in this effort. As an illustration, a person with borderline personality disorder, when admitted to hospital, not uncommonly will beat his or her head against the wall in order to be

31.4.3.3

Reduction of coercion and confinement

Avoiding the use of unnecessary coercion is also important for patients admitted to a locked hospital ward. In the 1970s and 1980s, the use of physical restraints and seclusion was widespread in US psychiatric units and hospital emergency rooms, and the experience often dominated the patient’s view of his or her illness. A 1979 study revealed that nearly half of the patients on an acute admission unit in California were locked in seclusion for a period of time [32]. When patients at a US psychiatric hospital were asked to draw pictures of themselves and their psychosis, over a third spontaneously drew a picture of the seclusion room; a year later, for many, the frightening experience of seclusion still symbolized their illness [33]. In the 1980s, a quarter of all patients evaluated in a psychiatric emergency room in Cincinnati, Ohio, were placed in restraints [34]. Physical restraints were frequently used on psychiatric wards, not for violent behaviour but ‘nonconformity to community rules’ ([35], p. 182) and ‘behavior disruptive to the therapeutic environment’ ([36], p. 1211). US federal regulations, introduced in the 1990s, imposed restrictions on the use of restraints and seclusion in psychiatric inpatient units and led to a dramatic reduction in their use. US psychiatrists are now obliged to see a patient within an hour of ordering the use of restraints or seclusion, night or day. Consequently, unit staff across the country have learned new methods of dealing with the agitated patient [2].

31.4.4

Involving the larger community

Central to social and community psychiatry is the task of involving the larger community in helping people with mental illness. The goals of the mission are

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twofold offering treatment and rehabilitation to individuals with mental illness and re-educating the community to reduce stigma, discrimination and the social exclusion of people with mental illness. Community mental health personnel expect to work with family members, employers, landlords, police, lawyers, general health care providers and others, to gather information; provide education, support and treatment; resolve problems; coordinate care; set up employment or accommodation; advocate for the client; and respond in emergency situations. Beyond the requirements of individual treatment, multiagency collaborative programmes can greatly expand the value of services.

31.4.4.1 Collaboration with other social agencies Enhanced services with cost savings can be realized when the mental health service collaborates with other social agencies. In Boulder County, Colorado, for example, there are a number of successful collaborative programmes. The Community Infant Project fights child abuse and neglect by creating teams of visiting nurses, peer parenting trainers, paediatricians, psychiatrists and counsellors from the public health department, social services and the mental health centre. A programme called IMPACT diverts adolescents with behaviour problems from juvenile detention and foster care, maintaining them in their family homes by pooling funds and personnel from criminal justice, social services and mental health. A team called PACE, staffed with probation officers and substance abuse and mental health professionals, works collaboratively with the district attorney, the courts and the gaol to transfer people with mental illness and substance abuse problems from the gaol into community care and rehabilitation [2]. Though multiagency collaborative programmes are administratively difficult to establish, they hold out great prospects for the future of psychiatry.

31.4.4.2 Fighting stigma Reports from the US Surgeon General [37] and World Health Organization [38] cite stigma as one of the

greatest obstacles to treating mental illness. Despite efforts since the 1950s to reduce prejudice against the mentally ill, stigma, discrimination and misconceptions about mental illness are pervasive. Citizen-driven ‘not-in-my backyard’ campaigns obstruct the placement of residential facilities. The perception of stigma by people with psychosis is associated with enduring negative effects on their self-esteem, wellbeing, mental status and access to work [39]. Public and professional opinions about mental illness adversely affect its detection and outcome. In the last decade several large-scale campaigns have been launched in Britain, Australia and, by the World Psychiatric Association, in 20 countries around the world [40]. For community mental health personnel, the important lesson from these endeavours is that it is feasible to produce a measurable response by selecting a local target group and providing training and awarenessbuilding. Target groups for this work should be homogeneous and accessible. Landlords, for example, are not an accessible group since they do not meet as a group or use a common media outlet. Employers are more accessible because one can identify the largest local employers and target their human resource departments. The police are accessible, as they receive regular in-service training. In a number of projects, antistigma interventions have produced positive changes in awareness, knowledge and attitudes among, for example, police, judges and high school students [39]. Community mental health workers may consider it worthwhile to provide regular education to police officers, given that their function in bringing acutely mentally ill people in for treatment makes them underrecognized and undertrained mental health service providers.

31.4.4.3 Political advocacy Social psychiatry is entwined with social policy. People with mental illness in many developed countries, for example, are confronted by disincentives to employment created by the disability benefits system. If they begin to work, they are likely to lose more from their disability pension, rent subsidies and other benefits than they can possibly earn. As a result,

PRINCIPLES OF SOCIAL INTERVENTION

vocational rehabilitation efforts are severely hampered, and people with psychiatric disability are likely to end up leading aimless lives, excluded from the workforce. Not all disability benefits systems, however, offer such severe disincentives [41,42]. Many other social policies, including discriminatory insurance and employment statutes, create obstacles to treatment, work and the social integration of people with mental illness. Mental health professionals and advocates are often involved in tackling these issues.

31.4.5

Respect for human rights

If people with mental illness are to be included in society with full rights as citizens, then national disability discrimination laws must give parity to people with physical and mental disabilities. Such laws in the US, Britain and elsewhere have been framed primarily with the physically disabled in mind and attempts to use them to benefit people with mental illness have been disappointing [43]. Policies related to insurance and disability benefits should deal with people with physical and mental disabilities equally. Currently, in the US, for example, the amount that people disabled by blindness are entitled to earn before they lose their Social Security Disability Income is substantially greater than for those with mental illness. Laws that impede people with mental illness from voting or serving on juries should be modified with a presumption of competence [43]. At a service level, mental health professionals can inform clients, employers and landlords of the mentally disabled person’s rights to accommodation in the workplace and antidiscrimination rights in general. The use of involuntary treatment is not an issue on which consensus is likely to be found soon. Many user/consumers cleave to a libertarian view that questions the validity of psychiatric diagnosis and the medicalization of altered mental states and that rejects all forms of involuntary psychiatric treatment. Adoption of this view would mean that mental illness can never be invoked as an excuse for criminal behaviour and would lead to many people with mental illness being confined to gaol [44,45]. Some have proposed that a partial solution to this problem, promoting parity for the human rights of people with mental

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disability, would be the development of a capacity law that applies equally to people with physical and mental illness whenever they are incapable of independent decision-making [46].

31.4.6

Importance of client communities

The belief that people with mental illness should have the same rights as other citizens carries with it some unwanted baggage that they should aspire to the same goals as other citizens and identify with mainstream culture, the concept of normalization. We have no trouble accepting the existence of many subcultures within mainstream society Chinatown, soccer moms, gun clubs and synagogues but mental health professionals, with the best of intentions, often do not recognize the validity of the subculture in which people with serious mental illness find themselves. Users of mental health services tend to be friends with, share concerns with and spend time with other people with similar disorders. Professionals who devise and construct treatment and rehabilitation programmes for people with mental illness, however, frequently assume that ‘mainstreaming’ separating the user/ consumers from others with mental illness and ‘integrating’ them into the mainstream community is the ideal. The developers of the individual placement and support (IPS) model of vocational rehabilitation, for example, hold dear the principle that ‘competitive employment’ is the goal. This may mean that the client who is placed in a competitive work position may be the only person at that worksite with mental illness. IPS proponents would not readily accept the social firm model, in which a third to a half of the workforce are people with psychiatric disability. A social firm manager in Trieste, Italy, however, fondly refers to the sense of community among the disabled workers as ‘una piccola famiglia allargata’ a small extended family [18]. The principle that emerges from the recognition that people with mental illness often belong to a supportive subculture in which can they share experiences and worldviews and not feel at a disadvantage is that we should recognize the validity of our clients’ life choices and not force upon them decisions made by those in mainstream culture. Recognition of the

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SOCIAL INTERVENTIONS

value of the client subculture can lead to the development of programmes that strengthen ties between members, build community infrastructure and create mutual support mechanisms [47]. Such programmes include user/consumer ‘warm-lines’, for mutual support during times of stress, and consumer-run drop-in centres. A residential programme based on mutual support, developed in Santa Clara County, California, consisted of clustered apartments with a centrally located community centre and paid staff, often consumers themselves, who acted as community organizers rather than clinicians [48]. These types of programmes are promoted by adherents to the recovery model because of the empowerment opportunities they offer to members of the subculture [24].

31.4.7

Empowerment

People with mental illness are among the least powerful members of society. At times they may lose their civil rights and be detained for treatment against their will. Even when treated voluntarily they may find themselves in a parent child relationship with the treatment provider, considered incapable of rational decision making. Why is it important to reverse this process and attempt to restore the person’s sense of power? To answer this question, it is important to appreciate that people with mental illness become disempowered, not only by involuntary confinement or paternalistic treatment but also by their own acceptance of the social stereotype of the mentally ill person. Patients who accept that they suffer from a mental illness feel internally driven to conform to a conventional image of incapacity and worthlessness, becoming more socially withdrawn and adopting a disabled role. As a result, their symptoms persist and they become dependent on treatment providers and others in their lives. Thus, insight into one’s illness may be rewarded with poor outcome [2]. This view is supported by a study of people with serious mental illness that found that those who accepted that they were mentally ill had lower self-esteem and lacked a sense of control over their lives: those who found mental illness most stigmatizing had the worst self-esteem and the weakest sense of mastery (namely, an external locus of control) [49]. The study

suggests that patients can only benefit from accepting that they are ill if they feel empowered, but that the internalized stigma stands in the way of empowerment. A recent 15-year naturalistic follow-up study of people with schizophrenia provides further evidence that empowerment is an aide to recovery. The research found that over a third of the subjects, many of them in a sustained period of recovery from the illness, were no longer taking antipsychotic medication, and that these patients were more likely to have had an internal locus of control when evaluated five to ten years earlier [50]. Another recent study of over 100 people with schizophrenia, using path analysis, demonstrated that an internalized sense of stigma is associated with avoidant coping (similar to an external locus of control), social avoidance and depression: these relationships were mediated by the effect ofinternalized stigma on hope and self-esteem [51]. The conclusion we should draw is that empowerment of people with mental illness is as important as helping them find insight into their illnesses. Traditionally, however, much more effort has been expended by mental health professionals on the latter than on the former.

31.4.8

Value of work

There are good reasons to suppose that working might promote recovery from schizophrenia and other psychoses, including improved social integration, normalizing peer relations and enhanced self-image. Work is a natural adult activity and a source of identity. A job can bring increased income, expanded social contacts and a sense of meaning in life, while unemployment carries risks of alienation, apathy, substance abuse, ill health and isolation [17,52,53]. When treatment systems focus on work as an outcome, they become more oriented towards the individual’s strengths and potential [17]. The proponents of moral treatment strongly advocated the importance of work in recovery from mental illness. Today, their view has substantial research support. Outcome from schizophrenia worsens [2] and hospital admissions for working-age people with psychosis increase [54] during economic downturns. Since the early 1990s, controlled studies have identified a number of benefits for subjects with serious

PRINCIPLES OF SOCIAL INTERVENTION

mental illness who are working. Participation in an effective vocational programme or having paid employment is associated with fewer psychiatric hospital admissions [55 58], reduced health care costs [57,59] and decreased positive and negative symptoms of psychosis [56,60 62]. Successful work programmes lead to increased quality of life [56,63 66], improved self-esteem [62,64,67 69], enhanced functioning [58,63,66] and an expanded social network [70]. It is important to note that a common concern of clinicians that patients with mental illness may become more disturbed under the stress of working has not proven true. Hospital admissions, symptoms and suicide attempts do not increase when patients are involved in effective work rehabilitation schemes [42,62].

31.4.9

Therapeutic optimism

The recovery model calls for optimism about outcome from serious mental illness, and such optimism is supported by available data. A meta-analysis of over a hundred outcome studies in schizophrenia conducted in the developed world during the twentieth century [2] assessed whether subjects were in or out of hospital at follow-up, and whether they had achieved ‘social recovery’ (economic and residential indepen-

31.5

421

dence and low social disruption) or ‘complete recovery’ (loss of psychotic symptoms and return to the pre-illness level of functioning). The data were analysed in 15- or 20-year consecutive time periods corresponding to major economic and social changes. The analysis revealed a substantial rate of recovery from schizophrenia throughout the century around 20% complete recovery and 40% social recovery. Both these rates were substantially lower during the Great Depression, and they did not improve with the advent of antipsychotic medication in 1954. It emerges that one of the most robust findings about schizophrenia is that a substantial proportion of those who present with the illness will recover completely or with good functional capacity, with or without medical treatment. This is not the view of schizophrenia that was advanced by Emil Kraepelin or is currently held by many psychiatrists. Unfortunately, practising mental health professionals do not have opportunities to follow patients who recover, as they drop out of treatment; this results in a negative clinician bias about outcome. Based on the research data, however, it is reasonable to advise relatives of people who have recently developed schizophrenia that the diagnosis is not all bad news. Schizophrenia is an illness that grows less severe with time. The patients with the illness who present the greatest problems are those who are younger and early in the illness.

KNOWLEDGE OF BIOLOGICAL, PSYCHOLOGICAL, SOCIAL AND POLITICAL–ECONOMIC FACTORS

Mental health professionals interested in social psychiatry strive to have an understanding of the effect of biological, psychological, social and political economic factors on the onset, course and outcome of mental illness. They may need to know, for example, how urban versus rural living influences the likelihood of developing schizophrenia; how life-event stress affects the onset of psychotic illness; how work, social inclusion or family involvement affects outcome from psychosis; or about the effect of maternal depression on the occurrence of depression in children in the household. They may seek some understanding of a broad area of study epidemiology, quality of life assessment, cultural anthropology, ethnography, poli-

tical science and the history of mental illness and its treatment. Few can have deep knowledge of all of these areas, but it is valuable to know that the principles of social intervention in psychiatry draw upon this broad knowledge base.

REFERENCES 1. Jones, K. (1972) A History of the Mental Health Services, Routledge & Kegan Paul, London. 2. Warner, R. (2004) Recovery from Schizophrenia: Psy chiatry and Political Economy, 3rd edn, Brunner Rou tledge, Hove.

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3. Scull, A. (1981) Moral treatment reconsidered: some sociological comments on an episode in the history of British psychiatry, in Madhouses, Mad doctors, and Madmen: The Social History of Psychiatry in the Victorian Era (ed. A. Scull), University of Pennsylva nia Press, Philadelphia, Pennsvlvania. 4. Rosen, G. (1968) Madness in Society: Chapters in the Historical Sociology of Mental Illness, Harper & Row, New York. 5. Bromberg, W. (1975) From Shaman to Psychothera pist: A History of the Treatment of Mental Illness, Henry Regnery, Chicago, Illinois. 6. Beers, C.W. (1932) Salient features of the mental hygiene movement. Psychiatric Quarterly, 6, 743. 7. Freudenberg, R. K., Bennet, D. H. and May, A. R. (1959) The relative importance of physical and community methods in the treatment of schizophrenia. International Congress of Psychiatry, Zurich, 1957, Fussli. ¨ degard, O ¨ . (1964) Pattern of discharge from Norwe 8. O gian psychiatric hospitals before and after the introduc tion of the psychotropic drugs. American Journal of Psychiatry, 120, 772 778. 9. Rathod, N. H. (1958) Tranquillisers and patients’ envir onment. Lancet, i, 611 613. 10. Jones, M. (1968) Social Psychiatry in Practice, Penguin, Baltimore. 11. Clark, D. H. (1974) Social Therapy in Psychiatry, Penguin, Baltimore. 12. ICCD (2006) International Clubhouse Directory, October 2006, International Center for Clubhouse Development, New York. 13. Beard, J. H., Propst, R., and Malamud, T. J. (1982) The Fountain House model of psychiatric rehabilitation. Psychosocial Rehabilitation Journal, 5, 47 53. 14. Mandiberg, J. M. (2000) Strategic Technology Transfer in the Human Services: A Case Study of the Mental Health Clubhouse Movement and the International Diffusion of the Clubhouse Model, Doctoral disserta tion, Department of Organizational Theory, University of Michigan, East Lansing, Michigan. 15. Macias, C., Barriera, P., Alden, M. and Boyd, J. (2001) The ICCD benchmarks for clubhouses: a practical approach to quality improvement in psychiatric reha bilitation. Psychiatric Services, 52, 207 213. 16. Bond, G. R., Drake, R. E. and Becker, D. R. (2008) An update on randomized controlled trials of evidence based supported employment. Psychiatric Rehabilita tion Journal, 31, 280 290.

17. Bond, G. R. (2004) Supported employment: evidence for an evidence based practice. Psychiatric Rehabilita tion Journal, 27, 345 359. 18. Warner, R. and Mandiberg, J. (2006) An update on affirmative businesses or social firms for people with mental illness. Psychiatric Services, 57, 1488 1492. 19. Warner, R. (ed.) (1995) Alternatives to the Hospital for Acute Psychiatric Treatment. American Psychiatric Press, Washington, DC. 20. Stein, L. I. and Test, M. A. (1980) Alternatives to mental hospital treatment. I. Conceptual model, treat ment programme and clinical evaluation. Archives of General Psychiatry, 37, 392 397. 21. Heath, D. S. (2005) Home Treatment for Acute Mental Disorders: An Alternative to Hospitalization, Routledge, New York. 22. Ramon, S., Healy, B. and Renouf, N. (2007) Recovery from mental illness as an emergent concept and practice in Australia and the UK. International Journal of Social Psychiatry, 53, 108 122. 23. Jacobson, N. and Curtis, L. (2000) Recovery as policy in mental health services: strategies emerging from the states. Psychiatric Rehabilitation Journal, 23, 333 341. 24. Jacobson, N. and Greenley, D. (2001) What is recov ery? A conceptual model and explication. Psychiatric Services, 52, 482 485. 25. Shean, G. D. (2007) Recent developments in psycho social treatments for schizophrenic patients. Expert Review of Neurotherapeutics, 7, 817 827. 26. Lehtinen, V., Aaltonen, J., Koffert, T. et al. (2000) Two year outcome in first episode psychosis treated according to an integrated model. Is immediate neu roleptisation needed? European Psychiatry, 15, 313 320. 27. Mosher, L. R. (1995) The Soteria Project: the first generation American alternatives to psychiatric hospi talization, in Alternatives to the Hospital for Acute Psychiatric Treatment (ed. R. Warner), American Psy chiatric Press, Washington, DC, pp. 111 129. 28. Ciompi, L., Dauwalder, H. P., Maier, C. et al. (1992) The pilot project ‘Soteria Berne’. Clinical experiences and results. British Journal of Psychiatry, 161 (suppl. 18), 145 153. 29. Liberman, R. P., Glynn, S., Blair, K. E. et al. (2002) In vivo amplified skills training: promoting generalization of independent living skills for clients with schizophre nia. Psychiatry, 65, 137 155.

PRINCIPLES OF SOCIAL INTERVENTION

30. Glynn, S. M., Marder, S. R., Liberman, R. P. et al. (2002) Supplementing clinic based skills training with manual based community support sessions: effects on social adjustment of patients with schizo phrenia. American Journal of Psychiatry, 159, 829 837. 31. Bennett, R. (1995) The crisis home program of Dane County, in Alternatives to the Hospital for Acute Psychiatric Treatment (ed. R. Warner), American Psy chiatric Press, Washington, DC, pp. 227 235. 32. Binder, R. L. (1979) The use of seclusion and restraint on an inpatient psychiatric unit. Hospital and Commu nity Psychiatry, 30, 266 269. 33. Wadeson, H. and Carpenter, W. T. (1976) The impact of the seclusion room experience. Journal of Nervous and Mental Disease, 163, 318 328. 34. Telintelo, S., Kuhlman, T. L. and Winget, C. (1983) A study of the use of restraints in a psychiatric emer gency room. Hospital and Community Psychiatry, 34, 164 165. 35. Soloff, P. H. (1978) Behavioural precipitants of restraint in the modern milieu. Comprehensive Psychiatry, 19, 179 184. 36. Mattson, M. R. and Sacks, M. H. (1978) Seclusion: uses and complications. American Journal of Psychiatry, 135, 1210 1213. 37. US Department of Health and Human Services (1999) Mental Health: A Report of the Surgeon General. US Department of Health and Human Services, Substance Abuse and Mental Health Services Administration, Center for Mental Health Services, National Institutes of Health, National Institute of Mental Health, Rock ville, Maryland. 38. World Health Organization (WHO) (2001) Mental Health 2001 Mental Health: A New Understanding and Hope, World Health Organization, Geneva. 39. Warner, R. (2005) Implementation of local anti stigma projects in the world psychiatric association pro gramme to reduce stigma and discrimination. Psychia tric Services, 56, 570 575. 40. Arboleda Flo´rez, J., and Sartorius, N. (2008) Under standing the Stigma of Mental Illness: Theory and Interventions, John Wiley & Sons, Ltd, Chichester. 41. Warner, R. (2000) The Environment of Schizophrenia: Innovations in Practice, Policy and Communications, Brunner Routledge, London. 42. Burns, T., Catty, J., Becker, T. et al. (2007) The effec tiveness of supported employment for people with

43.

44.

45.

46.

47.

48.

49.

50.

51.

52. 53.

54. 55.

423

serious mental illness: a randomized controlled trial. Lancet, 370, 1146 1152. Thornicroft, G. (2006) Shunned: Discrimination against People with Mental Illness, Oxford University Press, Oxford. Sayce, L. (2000) From Psychiatric Patient to Citizen. Overcoming Discrimination and Social Exclusion, Macmillan Press, London. Amering, M. and Schmolke, M. (2009) Recovery in Mental Health: Reshaping Scientific and Clinical Responsibilities, Wiley Blackwell, Chichester. Dawson, J. and Szmukler, G. (2006) Fusion of mental health and incapacity legislation. British Journal of Psychiatry, 188, 504 509. Mandiberg, J. M. (1999) The sword of reform has two sharp edges: normalcy, normalization, and the destruc tion of the social group. New Directions for Mental Health Services, 83, 31 44. Mandiberg, J. M. (1995) Can interdependent mutual support function as an alternative to hospitalization? The Santa Clara County Clustered Apartment Project, in Alternatives to the Hospital for Acute Psychiatric Treatment (ed. R. Warner), American Psychiatric Press, Washington, DC, pp. 193 210. Warner, R., Taylor, D., Powers, M. and Hyman, J. (1989) Acceptance of the mental illness label by psy chotic patients: effects on functioning. American Jour nal of Orthopsychiatry, 59, 398 409. Harrow, M. and Jobe, T. H. (2007) Factors involved in outcome and recovery in schizophrenia patients not on antipsychotic medications: a 15 year multifollow up study. Journal of Nervous and Mental Disease, 195, 406 414. Yanos, P. T., Roe, D., Markus, K., and Lysaker, P. H. (2008) Pathways between internalized stigma and out comes related to recovery in schizophrenia spectrum disorders. Psychiatric Services, 59, 1437 1442. Warr, P. (1987) Work, Unemployment and Mental Health, Oxford University Press, Oxford. Dunn, E. C., Wewiorski, N. J. and Rogers, E. S. (2008) The meaning and importance of employment to people in recovery from serious mental illness: results of a qualitative study. Psychiatric Rehabiliation Journal, 32, 59 62. Brenner, M. H. (1973) Mental Illness and the Economy, Harvard University Press, Cambridge, Massachusetts. Drake, R. E., Becker, D. R., Beisanz, B. A. et al. (1996) Day treatment versus supported employment for

424

56.

57.

58.

59.

60.

61.

62.

SOCIAL INTERVENTIONS

persons with severe mental illness: a replication study. Psychiatric Services, 47, 1125 1127. Bell, M. D., Lysacker, P. H. and Milstein, R. M. (1996) Clinical benefits of paid work activity in schizophrenia. Schizophrenia Bulletin, 22, 51 67. Warner, R., Huxley, P., and Berg, T. (1999) An evalua tion of the impact of clubhouse membership on quality of life and treatment utilization. International Journal of Social Psychiatry, 45, 310 321. Brekke, J. S., Ansell, M., Long, J. et al. (1999) Intensity and continuity of services and functional outcomes in the rehabilitation of persons with schizophrenia. Psychiatric Services, 50, 248 256. Bond, G. R., Dietzen, L. L., McGrew, J. H. and Miller, L. D. (1995) Accelerating entry into supported employ ment for persons with severe psychiatric disabilities. Rehabilitation Psychology, 40, 75 94. Anthony, W. A., Rogers, E. S., Cohen, M. and Davies, R. R. (1995) Relationships between psychia tric symptomatology, work skills, and future voca tional performance. Psychiatric Services, 46, 353 358. McFarlane, W. R., Dushay, R. A., Deakins, S. M. et al. (2000) Employment outcomes in family aided asser tive community treatment. American Journal of Orthopsychiatry, 70, 203 214. Bond, G. R., Resnick, R. E., Drake, R. E. et al. (2001) Does competitive employment improve nonvocational outcomes for people with severe mental illness? Journal of Consulting and Clinical Psychology, 69, 489 501.

63. Mueser, K. T., Becker, D. R., Torrey, W. C. et al. (1997) Work and nonvocational domains of functioning in persons with severe mental illness: a longitudinal analysis. Journal of Nervous and Mental Disease, 185, 419 426. 64. Holzner, B., Kemmler, G., and Meise, U. (1998) The impact of work related rehabilitation on the quality of life of patients with schizophrenia. Social Psychiatry and Psychiatric Epidemiology, 33, 624 631. 65. Bryson, G., Lysaker, P. and Bell, M. (2002) Quality of life benefits of paid work activities in schizophrenia. Schizophrenia Bulletin, 28, 249 257. 66. Mueser, K. T., Clark, R. E., Haines, M. et al. (2004) The Hartford study of supported employment for persons with severe mental illness. Journal of Consulting and Clinical Psychology, 72, 479 490. 67. Brekke, J. S., Levin, S., Wolkon, G. H. et al. (1993) Psychosocial functioning and subjective experience in schizophrenia. Schizophrenia Bulletin, 19, 599 608. 68. Kates, N., Nikolaou, L., Baillie, B. and Hess, J. (1997) An in home employment program for people with mental illness. Psychiatric Rehabilitation Journal, 20, 56 60. 69. Casper, E. S. and Fishbein, S. (2002) Job satisfaction and job success as moderators of the self esteem of people with mental illness. Rehabilitation Counseling Bulletin, 26, 33 42. 70. Angell, B. and Test, M. A. (2002) The relationship of clinical factors and environmental opportunities to social functioning in young adults with schizophrenia. Schizophrenia Bulletin, 28, 259 271.

32 Social interventions for psychosis David Kingdon,1 Yoshihiro Kinoshita1 and Stefan Gleeson2 1 2

School of Medicine, University of Southampton, Southampton, UK Hampshire Partnership Foundation NHS Trust, Southampton, UK

What is a social intervention? Are there specific interventions for psychosis? If a social intervention is one that is designed directly to alter social circumstances, any that modify accommodation, relationships and finances would be included. Psychological interventions could be considered a specific form of social intervention in that they involve developing a relationship with a therapist as a necessary part of the process involved. However, conventionally these are considered separately. Further details can be found for psychological interventions elsewhere [1,2]. International (e.g. World Health Organization) and government policies could also be described as social interventions and vary considerably internationally. There is increasing convergence on developing community alternatives to hospital provision and these will be discussed. Broader aspects of the development and variation in policy is, however, beyond the scope of this chapter. Social interventions are rarely, if ever, specifically or exclusively for people with psychosis.

They are usually responses to social needs and diagnosis is rarely directly relevant. Interventions described are therefore broadly for people with enduring mental health conditions, e.g. severe anxiety or depression, personality issues (e.g. related to childhood abuse) and bipolar disorder as well as schizophrenia, schizoaffective disorder and delusional disorder. Psychosis may only be a transient feature of these groups. Psychosocial determinants of psychosis are described elsewhere in this book (see Chapter 15), but are very relevant to the implementation of social interventions. Psychosis can be precipitated by trauma, drug use and significant life events in individuals with stress sensitivity, and psychosocial interventions are increasingly being tailored to these factors. Communication about them needs to be clear and use destigmatizing alternatives, as this is more acceptable to patients [3] and has less negative associations [4].

Principles of Social Psychiatry, second edition Edited by Craig Morgan and Dinesh Bhugra Ó 2010 John Wiley & Sons, Ltd.

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32.1 Research in this area has been limited in terms of randomized controlled trials (RCTs) but any such evidence available will be discussed. RCTs can often be difficult to establish for social interventions as controlling social circumstances may be problematic and so RCTs may not be the most appropriate form of evidence. Exclusion of patients who do not consent to RCTs, lack of long-term follow-up and limitations from inclusion criteria can seriously limit

32.2

EVIDENCE generalizability of RCTs. Qualitative, observational, before-and-after and case-control studies can provide valuable information. They have the advantage of being more inclusive of patient groups, can provide more extended follow-up periods and can be more generalizable. Rigorous attempts to control extraneous factors and the use of credible comparisons may lead to valuable information despite lack of randomization.

AREAS OF INTERVENTION

Basic social needs include somewhere to live, resources to be able to feed and clothe oneself (and participate in society), meaningful activity and participation in relationships with others. When people in receipt of mental health services are asked about what they want from them, it tends to be assistance with these domains rather than specifically treatment of psychological symptoms. Such symptoms may interfere with their ability to meet their daily needs and distress them but, especially once immediate distress can be alleviated, treatment of symptoms is often secondary. The terms we use to describe individuals in receipt of care will reflect the setting in which the care is occurring: in hospital, patient; in supported accommodation, resident; in community settings, clients or simply people.

recovered from psychotic episodes return to work but stigma, lack of appropriate support and persistent symptoms may prevent others doing so and lead to reliance on family support. Where such support is not available, homelessness can ensue and surveys consistently find many people with psychosis among homeless populations. Interventions focus on identifying and providing appropriate support for this group through ‘street homeless’ teams, which assertively work where homeless people are, using case management methods. Their ways of working concentrate on engagement and provision of practical support, including access to benefits and housing alongside appropriate treatment [5].

32.2.2 32.2.1

Accommodation

Availability and quality of accommodation can be a major issue for people with psychosis. They may live with families, independently alone or with nonfamily members, in supported or staffed accommodation or in hospital. Most people in most cultures will live with families even where large hospitals continue to exist. Independent living depends on available resources such as work or social welfare benefits. Such systems are not available or very limited in scope in many countries. Many people who have

Hospitalization

Change in accommodation, temporarily and permanently, or provision of it for people who are homeless, is commonly used to improve well-being. This can involve changes involving respite care, hospitalization or provision of supported accommodation. Evidence for the overall effectiveness of hospitalization is difficult to obtain in comparison with community treatment as patients who are very behaviourally disturbed or at risk to self or others are excluded from studies on ethical and practical grounds. The setting in which admissions for acute psychosis occur vary from specialist units in general hospitals or

SOCIAL INTERVENTIONS FOR PSYCHOSIS

mental hospitals to general medical wards in some countries. The use of open general medical wards versus specialist units for acute psychoses has been reviewed [6] and is the practice in many parts of the developing world, including the Caribbean. There is no robust evidence for or against this practice and some non-randomized evidence suggests that this may be appropriate to areas where few such admissions occur, e.g. rural and sparsely populated areas. It may also become an increasing consideration as alternatives to admission become more widely available. It is common practice internationally for children with mental health problems to be admitted to general paediatric wards. There has been a controlled evaluation of wards in general hospitals versus mental hospital acute care and this concluded that there was ‘no evidence in these patients of a transfer of chronicity to the psychiatric hospital, but patients with longer periods of treatment were noted to change hospital from both the general hospital unit to the psychiatric hospital, and in the reverse direction’ [7]. Substantial reductions in length of stay have occurred over the past few years, raising concerns that this may be jeopardizing quality of care. However, no significant difference has been found in hospital readmissions using planned short stays (varying from one week to 28 days) compared to standard and lengthier care at one year [8]. Neither do short hospital stays confer any greater ‘loss to follow-up’ than standard care. More post-discharge day care may be required for participants who have short stays but people from the short stay groups seem more likely to be employed at two years. Therefore it seems that a planned short-stay policy does not encourage a ‘revolving door’ pattern of admission and disjointed care for people with serious mental illness. Studies reviewing day hospitalization as an alternative to inpatient care have revealed similar findings, with reductions in requirements for inpatient stay and subsequent reduction in costs [9]. However, these studies apply only to those where significant risk of harm to self or others does not exist and increasingly acute admission wards have reached the position where only such patients are bought into hospital. The use of acute wards for respite care or treatment in a protected setting is now unusual. Respite care is still made available by some services but this is much more

427

likely to be in residential care settings or with paid carers.

32.2.3

Community support

Community mental health teams (CMHTs) have developed in many countries to provide support to enable discharge from and prevent readmission to hospital. These usually consist of nurses, social workers, occupational therapists and psychiatrists. A generic CMHT is: . . .a multidisciplinary team of mental health staff which has a lead responsibility for the provision of specialist assessment, treatment and care to a defined population, often defined by geographical catchment area or primary care registration. Such a team will usually provide the full range of functions necessary at the specialist care level, including initial assess ment of general adult patients referred from other agencies and teams, consultation to primary care staff on the management of patients, the initial provision of treatment during the onset of a disorder or the early stages of a relapse, and the continuing care of patients with longer term disabilities. Generic teams may be supplemented by particular specialist teams, for example for early intervention, for home treatment in crisis, or for the assertive community treatment, but the main provision of care for the majority of patients is to be provided by specialist mental health services [10].

Support to people living in their own homes and for their carers may be provided in crisis or to avert crisis [11,12], with coordination such as that provided by the Care Programme Approach in the UK [13]. Effectiveness of CMHT management is being gradually established [10]. In a Cochrane Review, hospital admission rates have been found to be significantly lower in CMHT groups compared with standard care. Admittance to accident and emergency services, contact with primary care and contact with social services did not reveal any statistical difference between comparison groups. There was no statistically significant difference in death by suicide and in suspicious circumstances although, overall, fewer deaths occurred in CMHT groups. No significant differences

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were found in the number of people leaving the studies early. Significantly fewer people in CMHT groups were not satisfied with services compared with those receiving standard care. Community mental health team management is not inferior to non-team standard care in any important respects and is superior in promoting greater acceptance of treatment [10]. Specialized forms of community teams are also developing internationally. These focus on specific groups, e.g. 24-hour home treatment services for crisis intervention, assertive outreach for patients who have been difficult to engage with services and early intervention teams for individuals presenting with possible psychotic symptoms (see Reference [14]). Assertive outreach does improve engagement but does not seem to affect symptoms or, in the UK, hospitalization [15]. Early intervention services for psychosis have had limited evaluation but there is some evidence supporting their development in Australia and the UK [16].

32.2.4

Supported accommodation

Dedicated housing schemes whereby people with severe mental illness are located within one site or building with assistance from professional workers have potential for great benefit as they provide a ‘safe haven’ for people in need of stability and support. This, however, may be at the risk of increasing depen-

32.3

MEANINGFUL ACTIVITY

For most people, what they do with themselves in the day is important to their socialization, self-esteem and financial situation. This may include work but can involve other activities such as attendance at day centres, social groups, family gatherings, hobbies and sports and other leisure activities.

32.3.1

dence on professionals and prolonging exclusion from the community. There is an urgent need to investigate the effects of supported housing on people with severe mental illness using randomized trials [17]. In many countries, there remain large mental hospitals providing continuing care to patients with mental disorders. The closure of Friern Barnet and Claybury hospitals in London provided an opportunity to make a comparison between supported care in community and hospital settings. Arising from this, there have been a series of studies undertaken by the Team for the Assessment of Psychiatric Services (TAPS) demonstrating support for transfer of these patients to community settings in terms of quality of life, social networks and resource utilization. Even the most difficult to place, with issues of hostility and other problematic social behaviours, make substantial gains, allowing many to be placed in community homes [18]. Patients were very appreciative of their new surroundings, with over 80% wishing to remain in their community homes. There was no increase in patients becoming homeless or being imprisoned. Friendships and contact with their local community increased although there was some reduction in contact with relatives. There was no change in psychiatric symptoms or social behaviour [19]. This remained the case at 5 years [20]. It was also found that smaller compared to larger group homes improved development of friendships and intimacy [21].

Day care

Day care can take a variety of forms: traditionally it involves a day centre to which patients come for a range of activities including social and therapeutic activities. Some have involved patients in leadership

roles, e.g. Club Houses (see Chapter 31). More dispersed day care, which involves activities displaced to local community settings, is also occurring more frequently. Evidence that day care is an effective intervention is very sparse despite the widespread availability of day centres for people with mental health problems [22]. The very existence of so many day centres could be taken to attest to their popularity and effectiveness and many clients will assert this. However, evidence is needed rapidly while such care still exists as their vulnerability to closure is significant where resources are increasingly scrutinized and weighed against existing research support.

SOCIAL INTERVENTIONS FOR PSYCHOSIS

32.3.2

Vocational rehabilitation for severe mental illness

Unemployment is one of the most common problems up to 95% [23] among individuals who suffer from a severe mental illness (SMI) such as schizophrenia and bipolar disorder [24], although most clients with SMI declare that they want to work [25]. Factors associated with mental illness that have been shown to predict a high rate of unemployment include cognitive impairment, positive and negative psychotic symptoms, fear of losing benefits, stigma and lack of access to services [26]. Vocational rehabilitation models have been developed to improve work outcomes of individuals with SMI [27]. Prevocational training assumes that indi-

32.4

429

viduals with severe mental illness need a period of preparation before being assigned to competitive employment, i.e. a job paid at the market rate and for which anyone can apply. This model includes sheltered workshops, transitional or trial employment, volunteer placement, skills training and other preparatory activities. These programmes consist of the traditional, stepwise and ‘train then place’ approach [27]. Supported employment programmes place clients quickly and train them on competitive jobs without extended preparation. This employment model has received the most empirical support [28]. Rapid job search and attainment by matching clients to jobs based on their interests and skills takes place prior to teaching them new skills to prepare for future jobs [29].

FINANCIAL SUPPORT

Debt is common in those with psychosis (up to 33%) [30,31]. Mental health practitioners have been exhorted to make routine financial assessments, including assessment of mental capacity [32]. Malnutrition, homelessness and premature death can be attributed to the inability to use funds to provide for basic needs [33]. Organizations (e.g. Citizen’s Advice Bureau) can assist with debt counselling and banks/ creditors can be more accepting where they are aware that mental health problems are present. Advocacy in these situations from nonstatutory bodies or health and social care professionals can be effective in assisting with these issues. Interventions that more generally raise income levels include welfare benefit systems. However, these vary considerably internationally and may differentially benefit those with physical as opposed to mental conditions. Support with basic income for food, clothing, heat and housing is usually provided in the developed world but elsewhere dependence on families for financial support can overburden them and influence relationships. Finance to support mobility and daily activities, e.g. going to a gym, or for enhanced care may be more difficult to obtain, although in the UK a Disability Living Allowance provides enhancement to income with major beneficial effects on disabled people’s quality of life.

Direct payments were introduced in the UK in April 1997 following a campaign by disabled people to allow them to determine how best to meet their social activity and support needs. The government stated that all care coordinators need to be able to offer direct payments [34]. Furthermore, The purpose of direct payments is to give recipients control over their own life by providing an alternative to social care services provided by a local council. A financial payment gives the person flexibility to look beyond ‘off the peg’ service solutions for certain housing, employment, education and leisure activ ities as well as for personal assistance to meet their assessed needs. This will help increase opportunities for independence, social inclusion and enhanced self esteem [35].

However, figures of uptake for direct payments among those with a mental illness are around 5%, with much lower figures suspected (but unknown) for psychosis [36]. Finally, there is evidence of aggressive targeting of those on low incomes, including patients with schizophrenia, by financial institutions, leading to high personal debts. Provision to protect the person from exploitation or reckless spending can include

430

SOCIAL INTERVENTIONS

appointeeship of a specified individual, e.g. voluntarily passing control of affairs to a relative. An attorney or (where substantial sums are involved) bodies such as the Court of Protection in the UK may be appointed

32.5

RELATIONSHIPS

Interventions to improve relationships are usually not systematized but involve care workers encouraging and supporting individuals, with varying success, in extending social networks including the use of befriending schemes [38]. More formal interventions are those focusing on individual social skills training or family work.

32.5.1

to manage affairs on the patient’s behalf where they do not have the required mental capacity to make financial decisions (which can be assessed through a variety of tools) [37].

Social skills training

An early approach to the treatment of psychosis involved the application of behavioural theory and methods with the aim of normalizing behaviour, improving communication or modifying speech. Given the complex, often debilitating effects of psychosis, social skills training was developed as a strategy derived from behavioural and social learning traditions. It was designed to help people gain or regain social skills and confidence in social situations, reduce social distress, improve quality of life and aid symptom reduction and relapse prevention. Social skills training programmes begin with a detailed assessment and behavioural analysis of individual social skills, followed by individual and/or group interventions using positive reinforcement, goal setting, modelling and shaping. Initially, smaller social tasks (such as responses to non-verbal social cues) are worked on, and gradually new behaviours are built up into more complex social skills such as conducting a meaningful conversation. Social skills training appears to be effective as a discrete intervention in improving outcomes in schizophrenia when compared with generic social and group activities, but the evidence shows little if any consistent advantage over standard care. Although this psychosocial treatment has become popular in the US since the 1980s it has had much less support in

the UK. In part this has been a result of doubts in the UK about the evidence that social skills training generalizes from the treatment situation to real social settings. While a recent review [39] indicated effects for social functioning, symptom severity and relapse, this may be attributed to the inclusion of studies that are beyond the scope of the current definition of social skills used in the present review (e.g. a number of papers were included that assessed employmentbased interventions).

32.5.2

Family work

Family work was developed in order to address high expressed emotion (EE). The most effective interventions include cognitive behaviour therapy (family or individual), education about schizophrenia (symptoms, behaviour such as inactivity), problem-solving and exploration of family reactions to illness, including guilt and anger [40]. Goals of intervention include an alliance with carers, enhancing their capacity to anticipate/solve problems, reduce their expressions of anger and guilt, encouraging relatives to set appropriate limits, reducing any adverse family atmosphere, maintaining reasonable expectations for patient performance and attaining desirable changes in relatives’ behaviour and belief systems [41]. A Cochrane Review by Pharoah et al. [42] found that family interventions not only reduce relapse rates (RRs) (RR 0.71), but also decrease rehospitalization (RR 0.78), aid medication compliance (RR 0.78) and do not affect the tendency of individuals and families to drop out of care. With regard to a first episode of psychosis, a Danish study by Jeppesen et al. [43] found reduced family subjective burden of illness and increased treatment satisfaction but did not

SOCIAL INTERVENTIONS FOR PSYCHOSIS

improve knowledge of schizophrenia; nor was high EE reduced to low EE. In China, families shoulder the burden of community care for 90% of the 4.5 million people with schizophrenia who live with them. A randomized controlled trial of 101 patients conducted in China by Li and Arthur [44] found that family psychoeducation led to a

32.6

significant improvement in symptom scores, psychosocial functioning and improvement in knowledge about schizophrenia in the intervention group compared to control subjects. Another intervention study conducted in China showed that family work reduced relapse rates in patients with schizophrenia living with a relative with high levels of expressed emotion [45].

SOCIAL INTERVENTIONS IN PSYCHOSIS: CURRENT TRENDS

In the past decade, there have been two major developments that have strongly influenced social intervention in psychosis, the focus on recovery and on social inclusion.

32.6.1

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Recovery

The concept, model, vision and recovery ‘movement’ properly originates from the work of the Tukes at York some 200 years ago, when patients were offered kindness, respect and hope of recovery [46]. Recovery has been promoted through several papers since then, including those by Anthony [47], who emphasized that a person may recover though the illness is not cured. The difference in perspective was from change in ‘illness’ (medical) to change in ‘person’ (social). The National Institute for Mental Health in England outlined four consecutive stages of recovery: dependent/unaware, dependent/aware, independent/aware and finally interdependent/aware [48]. Patients move from states of denial, confusion and helplessness due to mental illness through recognition of strengths and weaknesses, services available, acquisition of recovery skills and finally to goal setting, developing interdependent relationships and taking control. The change from unaware to aware is described as a ‘turning point’ in an individual’s life [49]. A late recovery effect has been found in over half of participants in one key longitudinal study (the International Study of Schizophrenia [50]), giving grounds for therapeutic optimism in schizophrenia. The US and New Zealand were the first countries to embrace and develop recovery models including: the Wisconsin model that emphasizes hope, relationships and self apart from illness [51]; the PACE model

(Personal Assistance in the Community Living) developed by patients for the Massachusetts National Empowerment Centre, which focuses on empowering patients to choose their own personal assistants to help in a variety of ways [52] (see direct payments above); and, finally, the Wellness Recovery Action Plan (WRAP) developed by Copeland [53] to improve quality of life through self-management skills. These include crisis planning, identifying early warning signs of impending psychosis, triggers and daily maintenance list of things to do to keep well. In the UK, recovery developed from antidiscriminatory legislation [54] and consumerist initiatives [55]. It has led to, among other things, the development of Support, Time and Recovery (STR) workers who assist service users’ personal goals for recovery [35]. Qualitative field studies have explored recovery from the patient’s perspective. A study by Pitt et al. [56] discovered a range of definitions used by patients, including realizing that there is life ‘beyond mental illness’. He identified key themes, including rebuilding: the self, life (social support and participation) and hope for a better future (including personal change). On the other hand, a study measuring outcome preferences in 1200 patients with schizophrenia found the strongest preferences were for reducing confusion and increasing energy, with the least on social life and reducing side effects [57]. Further analysis revealed two clusters of patients: those with a symptom orientation (n ¼ 615) with more severe psychopathology, lower quality of life scores and greater alcohol use; and a ‘recovery cluster’ of patients (n ¼ 666) with greater interest in social relations, work and a desire for increased personal energy, who scored higher on global well-being and significantly lower on

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the positive subscale score of the Positive and Negative Syndrome Scale (PANSS). Psychosocial interventions may therefore need to be tailored to severity of illness and individual patients’ conceptions of recovery. A number of studies have expanded the conceptual framework of recovery, including that of Mancini [58], who posits that those interventions that ‘shore up’ and restore autonomy are critical to recovery. Mountain and Shah [59] point to a reconciliation of the medical, clinical and social rehabilitation models, through a redefinition of health as not just the absence of disease but including the ‘ability to respond to challenges and restore a state of balance’ (with an emphasis on coping and strengths). Resnick et al. [60] listed life satisfaction, hope, empowerment and knowledge about illness and services as being key components of recovery. Holloway [61] points out that these are by no means agreed as uniquely significant, although hope and empowerment probably are. Roberts and Wolfson [55] suggest recovery-oriented practitioner interventions, which include: (a) practitioners changing role from expert to a ‘coach’ offering skills to the patient who is seen as an ‘expert by experience’; (b) offering hope through acceptance, understanding, believing in people’s abilities and attending to their priorities; (c) timing responses carefully, e.g. not necessarily challenging delusions in the early stages of psychosis; (d) negotiating rather than imposing medication; and (e) risk sharing rather than risk avoidance. A recovery plan might include a list of strengths (qualities, relationships, interests, taking medication, work history, activities of daily living), priority areas (housing, mental health, functioning, work, physical health, legal), barriers to goals, negotiating what to achieve and when and ensuring there are measurable outcomes (working out how the client will know when the goal has been or is being achieved). In New Zealand, staff in mental health services are being trained in ‘recovery competencies’, which include recognition by practitioners of people’s own expertise, resourcefulness, how to reduce stigma and how to access community services [62].

32.6.2

Social inclusion

The social exclusion experienced by those with a psychosis in terms of stigma, reduction in access to

social participation, relationships and work is often longer and more disabling than the symptoms themselves [63]. Social interventions designed to bring about social inclusion need to address this ‘enforced lack of participation’ [64], and address the following characteristics of social exclusion as listed by Morgan et al. [65]: (i) lack of participation in mainstream social, cultural, economic and political activities; (ii) its multiple dimensions (e.g. low income, poor housing, isolation); (iii) dynamic nature (i.e. people’s level of participation will vary over time); and (iv) multilevel causes (at the level of individual, household, community and institutions). In the UK a broad movement promoting social inclusion arose specifically to target stigma including the National Social Inclusion Programme managed by the National Institute for Mental Health (England) and the antistigma ‘Time to Change’ programme run by the Institute of Psychiatry in London and a coalition of mental health charities (www.movingpeople.org.uk). The National Social Inclusion Programme targets stigma, the role of health/social care in reintegration, employment, local community participation, basics (housing, finance, transport) and implementation [63]. Initiatives have been designed to address service user needs and the gap in public knowledge and understanding. There is evidence that similar programmes aimed at reducing stigma in Scotland have had a positive impact on attitudes [66]. At local level, mental health practitioners in the UK are requiredtopromote recovery and socialinclusionfor their service users by (a) offering individually tailored support by recognizing the ‘patient as expert’ in identifying their own needs, (b) offering choice in their health and social needs with access to sports, arts, spiritual help and employment support and (c) actively supporting service user and carer involvement in commissioning and delivery of services. Support, time and recovery (STR) workers and graduate primary care mental health workers are part of this process. Mental health practitioners need to examine their own assumptions regarding acceptance of people with mental health problems as equal citizens [67]. There is still resistance, for example, to service user involvement at the service delivery level, suggesting that such acceptance is not a given [68]. Second, psychiatrists need to widen their vision and be aware that people

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with mental health problems, in spite of symptoms or diagnosis, should be able to make a valued contribution to their communities. In one study, 40% of people with mental health problems who had been in open employment had been told by a mental health professional that they would never work again. This erodes hope and diminishes opportunity. On the other hand, those employed have fewer relapses, regardless of severity of diagnosis [69]. While alleviation of symptoms does not necessarily result in reinstatement of former valued roles and relationships [63], it does require a different approach and can mean returning to work despite not having fully recovered (see Table 32.1) [70]. In terms of knowledge and training, mental health practitioners need to be aware of the rights of patients under the Disability Discrimination Act [71] in the UK or other countries’ equivalents. In the UK, this Act outlaws discrimination against disabled people in education, employment and public transport and includes a duty on employers and education providers to make ‘reasonable adjustments’ to facilitate access to services. Psychiatrists can write letters to employers and can address patient fears that looking for employment, including unpaid work, will trigger a benefits review or loss. They need to be aware that medication side effects like drowsiness can rule out certain jobs, that work Table 32.1 Implications of a social inclusion agenda for mental health services Past emphases and goals To ‘cure’ people by treating illnesses, reducing symptoms (cognitive and emo tional problems), skills deficits and dysfunctions To identify problems Care for the patient Change the individual to fit in Prescribe what is good for people

New social inclusion agenda To help people with mental health problems do the things they want to do, live the lives they want to lead and access opportunities that nondisabled citizens take for granted Identify strengths and possibilities Opportunity for the individual Change the environment to support the person; adjust ments to facilitate access Enable people to control their own lives and the support they receive

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leads to improved not worse mental health and that the longer people remain out of work the worse the prognosis. This is because work provides a sense of worth, identity and financial security. Psychiatrists can redress assumptions by occupational health, social and employment (‘Jobcentre Plus’ in the UK) staff who may have low expectations of patients’ ability to work. Interventions for promotion of social inclusion for mental disorders (such as psychosis) thus include targeting key areas (see Table 32.2). There is also a growing recognition of the need for socially inclusive services that address a host of subgroups of service users. These include young people with early psychosis, the homeless and marginalized, and those with complex needs. Bertolotte and McGorry [73] noted that despite available interventions that could reduce relapses by more than 50%, not all patients have access to them, and ‘when they do, it is not always in a timely and sustained way’ (p. 116). A vision was drawn up including: ‘respect of the right to recovery and social inclusion... respect of the strengths and qualities of young people with a psychosis, their families and communities, encouraging expectations . . .’ and, finally, ‘services that actively partner young people and their families . . .’ [73]. A campaign was launched by a coalition of government and NHS representatives, mental health, drug and homeless charities to address the complex needs group of patients who do not easily fall into one or other service (see www.homeless.org.uk for weblink). Areas to be addressed include: reconnecting clients with families, making service care plans more personal, addressing rights and responsibilities, increasing service user involvement, addressing stigma and discrimination. Finally, the ‘choice agenda’ may also be seen as part of the initiative for greater social inclusion. In mental health it may be a means of understanding life and treatment choices rather than health service location/ convenience, which are features of the ‘choice agenda’ amongst nonpsychiatric patients [74]. There is evidence to suggest that encouraging people to consider how they should be supported during relapses results in fewer compulsory admissions [75]. Limits to choice in psychosis include the use of compulsory treatment in high-risk cases, where illness severity impairs the capacity to exercise choice [76]. Furthermore, there are problems with the concept of

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Table 32.2

Interventions for the promotion of social inclusion

Individual service user needs . Work in partnership and convey hope through exploring goals, strengths, unrealized potential, psychosocial situation, opportunities for community participation, promotion of autonomy and well being . Support access to general medical services, including health promotion . Provide choice over patients’ care to reduce the misconception that having a mental health problem means one is incompetent Medication reviews . Optimizing drugs to reduce stigma. Excessive doses can have major effects on patients’ quality of life and on how they present themselves with increased weight, tremor and movement disorders interfering with their own, and others’, perception of themselves. Lethargy reduces involvement in leisure and employment activities Psychological approaches . Psychological interventions should be more actively promoted by psychiatrists . Unduly negative perceptions of schizophrenia can impair recovery yet many patients can make substantial recoveries [50]. ‘Normalizing’ schizophrenia can again be crucial to hope of recovery Management and leadership . Redesigning mental health day services to promote community participation . Changing the impersonal, passive atmosphere of the mental health service environment itself; most pressingly, acute admission wards . Actively support safe alternatives to hospitalization (which fosters chronicity and stigma) including early intervention services, culturally sensitive interventions and promotion of access to services in schools, colleges and primary care Social inclusion in training . The General Medical Council (GMC) UK, has been: training medical students to consider social factors and encouraging curricula to reflect community medicine . The evidence base for this should be included at every level (psychiatric, continuing professional development) of training and they should receive training from people who experience mental health problems and their carers Other social interventions by practitioners include: . Promoting participation via social networks, training/education, benefits, advocacy [72], leisure activities in mainstream settings; linking people with vocational/disability employment advisors; referring people to guides on stigma, employment, social networks . Early intervention services can prevent patients losing their jobs after their first psychotic episode . Working closely with the criminal justice system; police training on mental health . Local and national campaigns: including campaigns to promote mental health such as those run by the Royal College of Psychiatrists (‘Changing minds’)

choice, where restricted resources offer none (low income countries, local inequalities of care) or where higher advantaged and more vocal patient groups exercise their choice to the opportunity cost of the

32.7

less well off [74]. Some have also exercised caution in presenting patients with an array of choices that can bewilder and lead to high levels of stress and anxiety [77].

SUMMARY

In relation to psychosis, and indeed all mental disorders, social interventions are a key and neglected component of mental health services. They involve work on areas that are central to patients’ expressed wishes and needs

for help: finances, accommodation, meaningful activity and relationships. Research into these areas is still limited, but such as there is suggests that they can be highly effective and are welcomed by patients.

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REFERENCES 1. Wright, J. H., Turkington, D., Kingdon, D. G. and Basco, M. R. (2009) Cognitive Behavior Therapy for Severe Mental Illness: An Illustrated Guide, APPI, Washington, DC. 2. Turkington, D., Kingdon, D. and Weiden, P. J. (2006) Cognitive behavior therapy for schizophrenia. Amer ican Journal of Psychiatry, 163, 365 373. 3. Kingdon, D., Gibson, A., Kinoshita, Y., Turkington, D., Rathod, S., and Morrison, A. (2008) Acceptable termi nology and subgroups in schizophrenia: an exploratory study. Social Psychiatry and Psychiatric Epidemiol ogy, 43, 239 243. 4. Kingdon, D. G., Vincent, S., Kinoshita, Y. and Turkington, D. (2008) Destigmatising schizophrenia: Does changing terminology reduce negative attitudes? Psychiatric Bulletin, 32, 419 422. 5. Hwang, S. W., Tolomiczenko, G., Kouyoumdjian, F. G. et al. (2005) Interventions to improve the health of the homeless: a systematic review. American Journal of Preventive Medicine, 29 (4), 311 319. 6. Hickling, F. W., Abel, W., Garner, P. and Rathbone, J. (2007) Open general medical wards versus specialist psychiatric units for acute psychoses. Cochrane Data base of Systematic Reviews, (4), Art. No.: CD003290. DOI: 10.1002/14651858.CD003290.pub2 7. Copas, J. B., Freeman Browne, D. L. and Robin, A. A. (1977) Treatment settings in psychiatry. The use of hospital services: long term follow up. British Journal of Psychiatry, 130, 365 369. 8. Alwan, N. A., Johnstone, P., and Zolese, G. (2008) Length of hospitalisation for people with severe mental illness. Cochrane Database of Systematic Reviews, (1), Art. No.: CD000384. DOI: 10.1002/14651858. CD000384.pub2 9. Marshall, M., Crowther, R., Maraz Serrano, A. et al. (2003) Day hospital versus admission for acute psy chiatric disorders. Cochrane Database of Systematic Reviews, 1, Art. No.: CD004026. 10. Malone, D., Marriott, S., Newton Howes, G. et al. (2007) Community mental health teams (CMHTs) for people with severe mental illnesses and disordered personality. Cochrane Database of Systematic Reviews, (3). Art. No.: CD000270. DOI: 10.1002/ 14651858.CD000270.pub2 11. Merson, S., Tyrer, P., Onyett, S. et al. (1992) Early intervention in psychiatric emergencies: a controlled clinical trial. Lancet, 339, 1311 1314.

435

12. Burns, T., Beadsmoore, A., Bhat, A.V. and Oliver, A. (1993) A controlled trial of home based acute psychia tric services: I. Clinical and social outcome. British Journal of Psychiatry, 163, 49 54. 13. Kingdon, D. (1994) Care programme approach: recent government policy and legislation. Psychiatric Bulle tin, 18, 68 70. 14. Department of Health (2001) Mental Health Policy Implementation Guide, http://www.dh.gov.uk/en/ Publicationsandstatistics/Publications/PublicationsPolicy AndGuidance/DH 4009350 (Accessed May 2009). 15. Killaspy, H. (2007) Assertive community treatment in psychiatry. British Medical Journal, 335, 311 312. 16. Garety, P. A., Craig, T. K., Dunn, G. et al. (2006) Specialised care for early psychosis: symptoms, social functioning and patient satisfaction: randomised controlled trial. British Journal of Psychiatry, 188, 37 45. 17. Chilvers, R., Macdonald, G. M. and Hayes, A. A. (2006) Supported housing for people with severe men tal disorders. Cochrane Database of Systematic Reviews, (4), Art. No.: CD000453. DOI: 10.1002/ 14651858.CD000453.pub2 18. Trieman, N. and Leff, J. (2002) Long term outcome of long stay psychiatric in patients considered unsuitable to live in the community. TAPS Project 44 [erratum appears in British Journal of Psychiatry, July 2003, 183, 80 81], British Journal of Psychiatry, 181, 428 432. 19. Leff, J., Trieman, N. and Gooch, C. (1996) Team for the Assessment of Psychiatric Services (TAPS) Project 33: prospective follow up study of long stay patients dis charged from two psychiatric hospitals. American Journal of Psychiatry, 153 (10), 1318 1324. 20. Leff, J. and Trieman, N. (2000) Long stay patients discharged from psychiatric hospitals. Social and clin ical outcomes after five years in the community. The TAPS Project 46. British Journal of Psychiatry, 176, 217 223. 21. Dayson, D., Lee Jones, R., Chahal, K. K. et al. (1998) The TAPS Project 32: social networks of two group homes . . . 5 years on. Team for the Assessment of Psychiatric Services. Social Psychiatry and Psychiatric Epidemiology, 33 (9), 438 444. 22. Catty, J. S., Bunstead, Z., Burns, T. et al. (2001) Day centres for severe mental illness [update of Cochrane Database Systematic Reviews, 2001, (2), Art. No.: CD001710; PMID: 11406000]. Cochrane Database of Systematic Reviews, (1), Art. No.: CD001710.

436

SOCIAL INTERVENTIONS

23. Burns, T., Catty, J., Becker, T. et al. (2007) The effec tiveness of supported employment for people with severe mental illness: a randomised controlled trial [see comment]. Lancet, 370 (9593), 1146 1152. 24. Mueser, K. T., Salyers, M. P. and Mueser, P. R. (2001) A prospective analysis of work in schizophrenia. Schizo phrenia Bulletin, 27 (2), 281 296. 25. Shepherd, G., Murray, A. and Muijen, M. (1994) Rela tive Values: The Different Views of Users, Family Carers and Professionals on Services for People with Schizophrenia, Sainsbury Centre for Mental Health, London. 26. Bond, G. and McDonel, E. (1991) Vocational rehabilita tion outcomes for persons with psychiatric disabilities: an update. Journal of Vocational Rehabilitation, 1, 9 20. 27. Twamley, E. W., Jeste, D. V. and Lehman, A. F. (2003) Vocational rehabilitation in schizophrenia and other psychotic disorders: a literature review and meta ana lysis of randomized controlled trials. Journal of Ner vous and Mental Disease, 191 (8), 515 523. 28. Crowther, R., Marshall, M., Bond, G. and Huxley, P. (2001) Vocational rehabilitation for people with severe mental illness [Review, 96 references]. Cochrane Data base of Systematic Reviews, (2), Art. No.: CD003080. 29. Mueser, K. T., Clark, R. E., Haines, M. et al. (2004) The Hartford study of supported employment for persons with severe mental illness [see comment]. Journal of Consulting and Clinical Psychology, 72 (3), 479 490. 30. Office for National Statistics (2002) The Social and Economic Circumstances of Adults with Mental Dis orders, The Stationery Office, London. 31. Jenkins, R., Bhugra, D., Bebbington, P. et al. (2008) Debt, income and mental disorder in the general popu lation. Psychological Medicine, 38, 1485 1493. 32. Marson, D., Savage, R. and Philips, J. (2005) Financial capacity in persons with schizophrenia and serious mental illness: clinical and research ethics aspects. Schizophrenia Bulletin, 32 (1), 81 91. 33. Frank, J. and Degan, D. (1997) Conservatorship for the chronically mentally ill: review and case series. Inter national Journal of Law and Psychiatry, 20, 97 111. 34. Department of Health (2006) Direct Payments for People with Mental Health Problems: A Guide to Action, Care Services Improvement Partnership, Feb ruary 2006, Department of Health, London. 35. Department of Health (2003) Mental Health Policy Implementation Guide, Support, Time and Recovery (STR) Workers, Department of Health, London.

36. Department of Health (2007) Putting People First: A Shared Vision and Commitment to the Transformation of Adult Social Care, Department of Health, London. 37. Fitch, C., Chaplin, R., Trend, C. and Collard, S. (2007) Debt and mental health: the role of psychiatrists. Advances in Psychiatric Treatment, 13, 194 202. 38. Kingdon, D. G., Turkington, D., Collis, J. and Judd, M. (1989) Befriending: cost effective community care. Psychiatric Bulletin, 13, 350 351. 39. Kurtz, M. M. and Mueser, K. T. (2008) A meta analysis of controlled research on social skills training for schizophrenia. Journal of Consulting and Clinical Psy chology, 76 (3), 491 504. 40. Barrowclough, C., Tarrier, N., Lewis, S. et al. (1999) Randomised controlled effectiveness trial of a needs based psychosocial intervention service for carers of people with schizophrenia. British Journal of Psychia try, 114, 505 511. 41. Thornicroft, G. and Susser, E. (2001) Evidence based psychotherapeutic interventions in the community care of schizophrenia. British Journal of Psychiatry, 178, 2 4. 42. Pharoah, F., Mari, J., Rathbone, J. and Wong, W. (2006) Family intervention for schizophrenia. Cochrane Data base of Systematic Reviews, (4), Art. No.: CD000088. 43. Jeppesen, P., Petersen, L. and Thorup, A. (2002) Inte grated treatment of first episode psychosis: effect of treatment on family burden: OPUS trial. Paper pre sented at the Third International Early Psychosis Con ference, Copenhagen, Denmark, September 2002. 44. Li, Z. and Arthur, D. (2005) Family education for people with schizophrenia in Bejing, China. British Journal of Psychiatry, 187, 339 345. 45. Xiong, W., Phillips, M. R., Hu, X. et al. (1994) Family based intervention for schizophrenic patients in China: a randomised controlled trial. British Journal of Psy chiatry, 165, 239 247. 46. Tuke, S. (1813) Description of the Retreat, Reprinted 1996, introduction by K. Jones, Process Press, London. 47. Anthony, W. A. (1993) Recovery from mental illness: the guiding vision of the Mental Health Service in the 1900s. Psychosocial Rehabilitation Journal, 16, 11 23. 48. National Institute for Mental Health in England (2004) Emerging Best Practice in Mental Health Recovery, NIMHE, London. 49. Andresen, R., Oades, L. and Caputi, P. (2003) The experience of recovery from schizophrenia: towards

SOCIAL INTERVENTIONS FOR PSYCHOSIS

50.

51.

52.

53. 54.

55.

56.

57.

58.

59.

60.

61.

62.

63.

64.

an empirically validated stage model. Australian and New Zealand Journal of Psychiatry, 37, 586 594. Harrison, G., Hopper, K., Craig, T. et al. (2001) Recov ery from psychotic illness: a 15 and 25 year interna tional follow up study. British Journal of Psychiatry, 178, 506 517. Jacobson, N. and Greenley, D. (2001) What is recov ery? A conceptual model and explication. Psychiatric Services, 52, 482 485. Ahern, L. and Fisher, D. (2002) Evidence based practices and recovery. Psychiatric Services, 53, 632 633. Copeland, M. E. (2002) Wellness Recovery Action Plan, Peach Press, West Dummerston, Vermont. Department of Health (2001) The Journey to Recovery The Government’s Vision for Mental Healthcare, Department of Health, London. Roberts, G. and Wolfson, P. (2004) The rediscovery of recovery: open to all. Advances in Psychiatric Treat ment, 10, 37 49. Pitt, L., Kilbride, M., Nothard, S. et al. (2007) Researching recovery from psychosis: a user led pro ject. Psychiatric Bulletin, 31, 55 60. Rosenheck, R., Stroup, S., Keefe, R. et al. (2005) Measuring outcome priorities and preferences in peo ple with schizophrenia. British Journal of Psychiatry, 187, 529 536. Mancini, A. (2008) Self determination theory: a frame work for the recovery paradigm. Advances in Psychia tric Treatment, 14, 358 365. Mountain, D. and Shah, P. (2008) Recovery and the medical model. Advances in Psychiatric Treatment, 14, 242 244. Resnick, S., Rosenheck, R. and Lehman, A. (2004) An exploratory analysis of correlates of recovery. Psychia tric Services, 55, 540 547. Holloway, F. (2008) Is there a science of recovery and does it matter? Advances in Psychiatric Treatment, 14, 245 247. O’Hagan, M. (2001) Recovery Competencies for New Zealand Mental Health Workers, Mental Health Com mission, Wellington. Social Exclusion Unit (2004) Mental Health and Social Exclusion: Social Exclusion Unit Report, Office of the Deputy Prime Minister, London. Barry, B. (2002) Social exclusion, social isolation, and the distribution of income, in Understanding Social

65.

66.

67.

68.

69. 70.

71.

72.

73.

74.

75.

76.

77.

437

Exclusion (eds J. Hills, J. Le Grand and D. Piachaud), Oxford University Press, Oxford, pp. 13 29. Morgan, C., Burns, T., Fitzpatrick, R. et al. (2007) Social exclusion and mental health: conceptual and methodological review. British Journal of Psychiatry, 191, 477 483. Scottish Executive (2004) Well? What Do You Think? The Second National Scottish Survey of Public Atti tudes to Mental Health, Well Being and Mental Health Problems, Scottish Executive, Edinburgh. Gleeson, S. and Kingdon, D. (2008) Social inclusion: what psychiatrists can do about it. A Life in the Day Mental Health and Social Inclusion, 12 (2), 28 31. Tait, L. and Lester, H. (2005) Encouraging user invol vement in mental health services. Advances in Psychia tric Treatment, 11, 168 175. Warner, R. (1985) Recovery from Schizophrenia, Rou tledge, London. Kingdon, D. G., Ramon, S., Perkins, P. et al. (2005) Social inclusion for psychiatrists, in New Ways of Working for Psychiatrists (National Institute for Men tal Health in England and Royal College of Psychia trists), Appendix 3(c), Department of Health, London, pp. 98 107. Sayce, L. and Boardman, J. (2003) The Disability Discrimination Act, 1995. Implications for psychia trists. Advances in Psychiatric Treatment, 9, 397 404. Department of Work and Pensions DWP Desk Guide: http://www.dwp.gov.uk/medical/hottopics/dwp desk aid time line 2003 4.pdf. Bertolotte, J. and McGorry, P. (2005) Early intervention and recovery for young people with early psychosis: consensus statement. British Journal of Psychiatry, 187, s116 s119. Valsraj, K. and Gardner, N. (2007) Choice in mental health: myths and possibilities. Advances in Psychiatric Treatment, 13, 60 67. Henderson, C., Flood, C., Leese, M. et al. (2004) Effect of joint crisis plans on use of compulsion in psychiatric treatment: single blind RCT. British Medical Journal, 329, 136 138. Holloway, F. (2007) Choice: wake up and smell the coffee! Advances in Psychiatric Treatment, 13, 68 69. Bate, P. and Robert, G. (2005) Choice, more can mean less. British Medical Journal, 331, 1488 1489.

33 Social management of common mental disorders Patricia R. Casey Department of Psychiatry, Mater Misericordiae University Hospital, University College Dublin, Republic of Ireland

Writing a chapter on the Social Management of Common Mental Disorders (CMDs) is a significant challenge since the evidence base referring to social treatments for CMDs is sparse as a literature search will quickly reveal. Within psychiatry, the term ‘psychosocial’ is used liberally, and while the ‘psycho-’ component is clear and has been well researched, particularly in the area of psychological therapies, the ‘social’ element has remained largely as mere lip-service to an appealing aphorism. When asked what the social element of treatment involves, the common answer is that it relates to housing,

33.1

welfare benefits and poverty, and that it falls more within the remit of social work, social policy and politics than psychiatry. Schizophrenia is the exception. in which social interventions have become associated with altering the immediate environment in which the patient lives and so focuses broadly on the emotional temperature of the family, known as Expressed Emotion (EE). So, while it seems that social treatment is concerned with the changing aspects of the patient’s environment rather than symptoms or functioning specifically, a clear definition of ‘social treatment’ as applied to CMDs is lacking.

WHAT IS SOCIAL MANAGEMENT?

Heretofore psychiatric treatments have focused exclusively on the individual receiving an intervention from a mental health professional with the goal of reducing distress or functional impairment using either pharmacological or psychological techniques alone or in combination. However, it has become increasingly recognized that this is a narrow view and that the social context of symptoms should also be taken into account

since this can influence the aetiology, severity and duration of the disorder. Social interventions by definition have a public health dimension developed at national policy level [1] that relate to prevention. Included here are public education and antistigma campaigns as well as the training of general practitioners in the recognition and management of CMDs. Measures to enhance social

Principles of Social Psychiatry, second edition Edited by Craig Morgan and Dinesh Bhugra Ó 2010 John Wiley & Sons, Ltd.

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capital are now part of government policy [2] aimed at improving the mental health of the population, while the provision of therapists who will deliver brief interventions at community or primary care level to the large numbers of the general population is another facet of this preventive drive. Workplace interventions to identify those at risk from or with psychiatric disorders have also been developed. Since these relate to prevention they are beyond the scope of this chapter and are considered in Chapter 30. For the purpose of this chapter social treatments are defined as those interventions that aim to alter the patient’s social environment when it has contributed in some specific way to the psychiatric disorder or can be delivered easily to large numbers in their own social

33.2

milieu without recourse to secondary psychiatric services. The latter might include cognitive therapy, ordinarily regarded as a standard psychological intervention; yet when delivered, for instance, via the internet, its reach will be much more extensive. A further question is, what is meant by environment? Clearly a number of people living in proximity to another, be it a rural neighbourhood or a town, constitute an environment, but what of two people living together? Can this be said to be a social environment? According to some influential figures, such dyads are legitimate subjects for the study of environmental influences on illness [3] and so bring family interventions within the ambit of social interventions.

WHAT ARE COMMON MENTAL DISORDERS?

Common mental disorders (CMDs) include unipolar/ major depression, anxiety disorders and stress disorders (adjustment disorder) but for obvious reasons exclude psychotic disorders. CMDs will be the subject of this chapter, in so far as there is evidence to support social interventions in their management. The six-month prevalence of major depression in the Epidemiological Catchment Area study (ECA) [4] was 2.2% across five sites and the later National Comorbidity Survey (NCS) [5], a replication study, found a 12-month prevalence of 6.6% and a lifetime prevalence of 16.2%. In Edmonton, Canada, the one-month prevalence was 3.2% and in Christchurch, New Zealand 5.3% [6]. TheNational HouseholdSurvey of Britain [7] identified a one-week prevalence of 2.1% and the Outcome of Depression International Network

33.3

(ODIN) [8] found a one-month period prevalence of 8.5% with a range from 2.6 to 17.1% depending on the site. Turning to panic attacks, a lifetime prevalence of 22.7% and for panic disorder with and without agoraphobia of 1.1 and 3.7%, respectively, has been reported [9], while for generalized anxiety disorder rates of slightly over 3% were found in the ECA [4] and National Comorbidity Survey [5]. Rates for adjustment disorder have not been measured in most of the largescale epidemiological surveys. In the ODIN study [8] a prevalence of 1% was found, although higher rates of 2.3% have been found in the elderly [10]. Being the fourth most common cause of healthrelated disability and projected to rise to second place in coming decades, depression is the disorder that has attracted the most attention.

FAMILY THERAPY

The use of family therapy in treating common mental disorders is based on the theory that the system in which the person lives has a role in generating and/or in maintaining symptoms in this respect it represents a social intervention par excellance. Therefore, family therapy aims to improve the interactions between or among family members so that family functioning improves. The goal is thus focused less

directly on symptoms and more on changing destructive communication and behaviour between and within family members and through that route reducing symptoms. In particular, family therapy has been used in the treatment of depression. This issue, however, is complicated by the variety of family therapies that exist. These include psychoeducational, behavioural and psychoanalytical models as well as

SOCIAL MANAGEMENT OF COMMON MENTAL DISORDERS

systemic, structural, solution-focused, narrative and post-Milan models. This diversity makes studies about the benefits of family therapy difficult to interpret. The use of family therapy specifically in treating depressive illness was the subject of a systematic review [11] in which the authors included not just major depression but also those with depressive symptoms not meeting specific criteria for a formal diagnosis of this condition. The primary outcome examined was reduction in total symptom score using a range of rating scales; secondary outcomes included family functioning, other symptom changes (e.g. hopelessness, suicidal ideation, anxiety), general functioning, quality of life and a range other possible outcomes. Four levels of evidence from 1 (good) to 4 (none) were identified. Of the 43 studies identified only six met the criteria for inclusion, and the heterogeneity between these did not allow pooling of data so as to calculate an effect size, nor did it allow any judgement as to the preferred form of family therapy. While there were some good studies, the authors concluded that the evidence overall was at level 3 (limited or conflicting) but it rose to level 2 (moderate) when reduction in depressive symptoms was considered and when improvement in family functioning was the outcome. Family therapy also reached level 2 in comparison to no treatment or waiting list controls. Compared with pharmacotherapy, there was limited evidence (level 3) of equal efficacy for combined family therapy and pharmacotherapy when compared to pharmacotherapy alone. The authors concluded that the use of other psychological interventions for which there is a better evidence base is preferable to family therapy, notwithstanding its widespread use. This study demonstrates the value of systematic reviews in challenging received wisdoms, but it also demonstrates the limitations imposed on those working in an evidence-based environment. For example, questions that arise are whether pharmacotherapy on its own compares favourably with family therapy alone, a question that is often asked in clinical settings.

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Expressed emotion, with its three components of emotional overinvolvement, criticism and hostility, is generally associated with severe and enduring mental illnesses such as schizophrenia [12]. There is also a literatureonits importanceonthe outcomeofdepressive illness, although this has received much less attention. If EE is a variable influencing outcome, it follows that family therapy might have a role in reducing some or all of its three components and that ultimately this would influence outcome. An early study [13] found that coupletherapywasmoreacceptablethanpharmacotherapy to a group of depressed patients living with a critical partner and that the reduction in symptoms was maintained at 2 years post-treatment. However, the relationship between EE and relapse is complex, as was shown in a study [14] of older adults with depression. While high EE overall was not associated with relapse, there was an interaction with the relationshipto the patients.Among adult childrencaring for older patients, high EE status was significantly associated with relapse at one year and fewer achieving complete or sustained recovery, while spouses with high EE showed a trend towards lower relapse rates and higher rates of complete and sustained recovery. However, another study [15] found that the direction of the association was the reverse ofwhat the earlier theory had suggested. Patients and their partners were interviewed separately at three-monthly intervals over one year, and while the nature of the association could not definitively be established, it appeared that continuing criticism was the result of continuing depression, while the relationship between these was mediated by the relative’s understanding of the illness. This view was reinforced byarecent10-year follow-up[16], which questionedthe significance of EE and perceived criticism since neither was associated with outcome. At this point it is not possible to confirm the early findings of the prognostic significance of high EE on the outcome of depression. If furtherstudiesdemonstrateacausallinkwithdepression outcome then family therapy will once again have therapeutic potential.

BIBLIOTHERAPY

The demand for psychological treatments is high and cannot be met by the current level of psychological

services that are available. An attempt to overcome this deficit was the creation of a new grade of

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therapist the primary care graduate mental health worker (PCGMHW). These are psychology graduates with 1 year’s training in delivering brief therapies. The expectation is that psychological therapies will thus become more accessible for larger numbers of people. This approach within primary care was trumped by proposals put forward by Professor Leyard, a health economist with the London School of Economics, who in 2005 recommended increasing the numbers of therapists trained in delivering brief therapies by 10 000 and working from treatment centres rather than from primary or secondary care. He envisaged that these would train under the tutelage of clinical psychologists and that they would have suitable background training in social work, psychiatric nursing and so on. Each centre, he envisaged, would serve a population of 250 000, with about 20 therapists in each. However, if these ambitious developments do not materialize or do not live up to expectations, there will continue to be a role for various forms of self-help and guided self-help. One form of self-help that is widely and readily accessible and available to anybody who wants it is bibliotherapy. This self-help intervention has been in use since the 1990s when a study of 500 American mental health professionals found that 70% ‘prescribed’ a book between the face-to-face sessions and that 86% reported this to be beneficial to their patients. It is defined as the reading of self-help or related material so as to speed up recovery. However, a bewildering plethora of terminologies have developed around bibliotherapy that includes standalone, adjunctive, minimal contact, guided, predominantly self-help and self-administered self-help (see Table 33.1). These seemingly trivial distinctions are important when examining the benefits or otherwise of various studies, since there are likely to be differences between the various categories, just as there are differences between antidepressant therapies. Being mindful of these distinctions is important because, unsurprisingly, there is a suggestion that therapies involving some professional contact are superior to pure self-help [17]. The vast array of self-help books available for a range of psychiatric conditions presents a challenge for doctors, especially general practitioners. Studies of self-help approaches have been carried out for the

Table 33.1 Types of bibliotherapy Stand alone self help Adjunctive self help Pure self help Predominantly self help

Minimal contact self help Guided self help (a form of minimal contact self help)

Used without any other therapy Used in combination with pharmaco or psychotherapy Exclusively self administered (check this definition) Minimum of professional assistance but initial evaluation to develop a rationale for the reading recommended Occasional professional contact Professional help from a PCGMHW along with bibliotherapy

common disorders like depression and anxiety, but these are limited in number and some have methodological problems. The majority are based on cognitive approaches and the focus has been on the short-term clinical effectiveness rather than on the long-term impact, and none have considered cost effectiveness. A systematic review [18] of eight studies of self-help for anxiety and depressive disorder in primary care found that, while most identified some benefits from self-help, the studies were methodologically limited and recommended further research. The involvement of PCGMHWs in guided self-help received a boost when the National Institute for Clinical Excellence (NICE) Guidelines [19] on the management of depression recommended their use as part of a ‘stepped care’ model. Stepped care is a form of health care delivery that has two components, the first being that it is least restrictive in terms of inconvenience, cost to the patient and therapist time. The second element is that it is self-correcting [20]; in other words, if the basic intervention is unsuccessful then the therapist will identify this and recommend more complex traditional treatments. How well does guided self-help work? Such a model has intuitive appeal and some meta-analyses have found a large effect size [21]. However, many of these studies were carried out on nonclinical populations [22], often recruited through newspaper advertisements, so the populations to whom the interventions

SOCIAL MANAGEMENT OF COMMON MENTAL DISORDERS

were delivered may be very different from those seen in clinical practice. A recent study [23] attempted to address this by selecting a population referred from primary care with a diagnosis of depression and/or anxiety. The aim was to explore whether guided selfhelp delivered by a paraprofessional similar to the PCGMHW provided additional benefits for those who were randomized to this intervention over and above being on a waiting list for a psychological intervention. In total, 114 individuals were randomized, and those

33.5

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receiving the intervention showed satisfactory adherence to, and reported satisfaction with, the treatment. However, at three-month post-treatment follow-up there was no benefit from the intervention in terms of the outcome measures such as anxiety or depression scores. Social function did improve although the authors were unable to interpret this finding since it did not come about through symptom reduction. Overall the results were reported as demonstrating no benefit from guided self-help.

PSYCHOEDUCATION

Considering our definition of social interventions it can be argued that casting a net widely into the general population so as to ‘catch’ the few (or many, depending our one’s perspective) who have common mental disorders is also a form of social intervention. An example of this is the development of easily accessible psychoeducational workshops that would provide psychological interventions for those who previously might not have consulted their primary care physicians or, if they had, might not have been offered psychological interventions due to service limitations. These have been outlined in a number of studies described below. Typically, these workshops focused on ‘stress’ and on ‘depression’. The former were successful [24] and well attended, appearing to reach a group who had not consulted their doctors with these problems previously. They were also associated with a reduction in symptoms and so were deemed, overall, to be effective. On the other hand, the workshops on depression [25] were poorly attended and many of those who participated had already been referred to specialist services. Accordingly the focus changed and a workshop entitled ‘How to improve your selfconfidence’ was initiated [26]. These typically lasted one day and those with stressrelated problems were invited to attend free of charge. They were widely advertised in leisure centres, libraries, community centres and so on, and catered for up to 25 people. So as to avoid stigmatization and overcome the reluctance of many to seek help, they were held in a public facility such as a leisure centre. No exclusion criteria were applied and a telephone number was provided for those wanting further infor-

mation. The workshops, using cognitive techniques, were run by two clinical psychologists and two assistants. Those wishing to participate were assigned to the intervention group or to the waiting list control group. Even allowing for an attrition rate of 33%, the results were positive and at three-month follow-up indicated a significant reduction in General Health Questionnaire (GHQ) and Beck Depression Inventory (BDI) scores and an increase in self-esteem scores compared with the waiting list controls. Overall, 45% of the experimental group, compared with 8% of the control group, improved. However, several questions are raised by population-based psychoeducation interventions such as those described above: 1. Do these interventions capture those who need treatment in the first instance, that is those whose distress is excessive or whose functioning is impaired? 2. If these interventions reach those needing treatment, does it reach those who otherwise would remain untreated? 3. Among those receiving treatment, is the impact sustained beyond three months so that additional treatment from general practitioners or from secondary services are unnecessary? The first question is difficult to answer since diagnoses were not made and all who wished were invited to attend. In addition, the instruments used, i.e. the BDI and GHQ, are not diagnostic, but screens and

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measures of severity, so it is possible that the group was a diagnostically heterogenous one of varying symptom severity, ranging from those with distress due to acute or long-standing life stressors to those with major depression and generalized anxiety. That said, three-quarters of the participants scored as probable cases on the GHQ, suggesting that at least a proportion may have needed treatment. The second is partly answered by the data from this study in that it showed that 39% had not attended their general practitioners with these symptoms, but no data on the level of intervention offered to those who did consult were presented, so the real level of need may be underestimated. Finally, the follow-up period of only three months meant that whether the improvement was sustained and therefore reduced the need for treatment from other sources could not be measured.

33.6

A more modest variant of this was a study [27] that compared group psychoeducation with one-toone problem-solving therapy and with treatment as usual using a sample identified as depressed from the general population. Diagnosis was made using a two-stage screening method. Since participants were identified in a structured manner, the population offered the intervention was more diagnostically homogeneous than in the studies cited above. The results showed that group psychoeducation and oneto-one intervention reduced the proportion who were depressed by 14 and 17%, respectively, compared with treatment as usual. These differences, observed at six months, were not maintained at one-year followup. Moreover, the one-to-one intervention was more acceptable than the group intervention with 63 and 44%, respectively, completing treatment.

INTERNET-BASED INTERVENTIONS

While computer-based interventions have been available for some years, the use of the internet as a resource is relatively recent, and although widely available, is still not universal, particularly for some groups of patients such as the elderly or those who have financial or other social problems. However, the growing interest in internet-based treatments and their potential for reaching large numbers warrants their inclusion in this chapter. So far, studies are few in number and have small sample sizes. Four therapeutic strategies have been identified as follows: .

Pure self-help.

.

Predominantly self-help a therapist explains the rationale and teaches how to use the tool.

.

Minimal-contact therapy active involvement of a therapist but less than in traditional therapy, e.g. by email.

.

Predominantly therapist-administered but in conjunction with self-help material.

Most of the studies have utilized minimal-contact therapy, and the approach is invariably based on

cognitive-behavioural principles. Structured interviews often accompany the trial. A concern is the level of control over the websites, and obviously those that are fully open have little control applied and so can be used for pure self-help, although in trials, sites are generally password-protected, allowing some control of the material that is used. In addition, concerns about side effects have been voiced, which include fears that internet interventions may increase nonresponse rates to subsequent live treatments. Studies have been carried out on those with panic disorder, social anxiety disorder and post-traumatic symptoms, and while they are few in number and have small sample sizes, results were most promising in the treatment of panic disorder. At the time of writing two studies of internet interventions for the treatment of depression were identified and the results of both were positive, with high completion rates. The reader is referred to recent comprehensive reviews [28,29] on this topic, with both sounding notes of cautious optimism and calling for further research in efficacy, effectiveness and cost effectiveness. A recent initiative has been the development of web-based problem-solving techniques for those with depressive, anxiety or work stress symptoms. The study [30] included 213 subjects recruited through

SOCIAL MANAGEMENT OF COMMON MENTAL DISORDERS

the mass media who were randomized to the fourweek minimal-contact therapy or to a waiting list control group. Anxiety, depression and quality of life improved in all active treatment groups, but this was

33.7

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less pronounced in those with work-related stress and more pronounced in those with greater severity of symptoms at baseline. Clearly studies such as this need to be replicated.

RESILIENCE ENHANCING AS TREATMENT

It is manifestly true that life’s stressors cannot be predicted, and for this reason there is little optimism that psychiatric illnesses induced by these, such as adjustment disorder and depressive illness, can be prevented. An alternative perspective is that the manner of dealing with these stressors is what determines the appropriateness or pathology of the response. Hence there is a growing interest in resilience and on ways in which this can be harnessed so as to prevent or reduce the impact of adversity on the individual. Resilience is defined as the ability to bounce back to one’s original level of emotional well-being after encountering difficulties, negative events, hard times or adversity [31]. Several psychosocial factors have been identified as facilitating resilience, including a sense of self-esteem, patience and cognitive flexibility, curiosity, humour in the face of difficulties, religious (or spiritual and altruistic) activities, social supports (including role models and mentors), active coping (exercise and training) and a belief that problems can be solved [32]. Some of these, such as active coping and religious practice, lie in the domain of prevention and will not be considered further here. Enhancing resilience is increasingly seen as having potential among those at risk for or experiencing common mental disorders. Therefore, approaches that improve coping strategies, social supports and selfesteem might reduce the likelihood of developing psychiatric disorder. One study [33] examined the effect on stress-related symptoms of resilience training in two four-hour sessions of resilience enhancement. The target population was university students, randomly assigned to either the intervention group or waiting list control. The results, comparing the preand post- intervention scores on a number of measures, indicated that the intervention group had higher resilience scores, enhanced coping skills in areas such as problem solving and reduced avoidance behaviour, higher scores on protective factors such as self-

esteem, positive affect and self-leadership, and lower scores on depression and stress scores. The findings suggest that resilience-enhancing techniques may be useful as part of stress management and/or stress prevention programmes. Social supports are among the most widely studied elements of resilience, and their presence has been linked to protection against depression and to reduced functional impairment, as well as to improved outcome with treatment. On the other hand, social isolation and low levels of social support have been linked to an increased risk of a multiplicity of disorders, in particular depression, stress, post-traumatic stress disorder, dysthymia and adverse emotional reactions to physical illness. While there is a significant volume of research on the relationship between social supports and distress or depression, these studies have mainly been carried out on selected populations, such as those with serious physical illness or who have been diagnosed with depression. Most are cross-sectional in design, thus only allowing for the evaluation of associations rather than for examination of potential causal relationships. More recent studies that have addressed these methodological concerns have confirmed the stressbuffering effects of social support and social networks, but have moved from the broad assessment of social support/networks to examining the place of specific types of support in buffering (modifying the impact of) specific stressors. One such study [34] found that work-related stress was buffered specifically by the number of neighbours with whom the respondants had frequent contact, while the effects of chronic stress, indicated by receiving disability allowance, were buffered by having a high number of neighbours and receiving instrumental support. Linked to social supports is the question of volunteer befriending of those with depression. There are several reasons why this, rather than other forms of

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social support, might have a superior impact on outcome. There is the knowledge that somebody cares enough to visit voluntarily and without being paid. There is also the flexibility of visiting times and locations; finally, the mutual disclosure of friendship and even the sharing of difficulties might enhance self-worth and self-confidence. This was examined in a randomized controlled trial of chronically depressed women [35] and while longer duration of befriending was associated with greater remission rates (up to 76%) those who only saw a social worker but not the volunteer also did well, with a 70% remission rate compared with a 39% remission rate in the control group. However, the sample size was small, with 43 in each group, and there was no control for possible confounders or for the effects of other simultaneous interventions as the analysis of data was bivariate. If life events have the capacity to trigger depressive episodes, then the possibility that subsequent events that are positive or aids that assist in coping with negative events will reduce symptom severity must be

33.8

considered. Positive events and ‘difficulty reducing’ strategies have been termed ‘fresh start experiences’, and these putative contributors to remission in chronic depression along with befrienders have been incorporated into a more substantial investigation of their roles relative to each other. This study [36], an extension of the earlier one [35], clearly identified fresh start experiences as the key predictors of remission (odds ratio 6.92) and while befriending continued to play a role (odds ratio 4.09) it was less prominent than other variables such as attachment type and the absence of any further negative events. Whether depressive symptoms in this context are always indicative of depressive episodes or whether they are best regarded as adjustment disorders [37] is an interesting and important question that is outside the scope of this chapter, although there is a case for including adjustment disorders among the common mental disorders, particularly in the context of social interventions, notwithstanding the paucity of research in this area. For a more detailed exposition on social support the reader is referred to Chapter 35.

CONCLUSION

The evidence base for social therapies on their own is limited and could be described as ‘soft’. While various interventions such as family therapy, internet treatments and bibliotherapy, as well as aspects of resilience-enhancing interventions, provide some evidence of efficacy and effectiveness, further studies and where possible systematic reviews are required.

REFERENCES 1. Paton, J., Jenkins, R. and Scott, J. (2001) Collective approaches for the control of depression in England. Social Psychiatry and Psychiatric Epidemiology, 36, 423 428. 2. Department of Health (2001) Making It Happen: A Guide to Mental Health Promotion, TSO, London, pp. 46 50. 3. Leff, J. P. (1993) Principles of Social Psychiatry, Black well Scientific Publications, Oxford, pp. 3 11.

4. Myers, J. K., Weissman, M. M., Tischler, G. L. et al. (1984) Six month prevalence of psychiatric disorders in three communities. Archives of General Psychiatry, 41, 971 982. 5. Kessler, R., Berglund, P., Demler, O. et al. (2003) The epidemiology of major depressive disorder: results from the nationalcomorbidity survey replication study. Journal of the American Medical Association, 289, 3094 3105. 6. Weissman, M. M., Bland, R. C., Canino, G. J. et al. (1996) Cross national epidemiology of major depres sion and bipolar disorder. Journal of the American Medical Association, 276 (4), 293 299. 7. Jenkins, R., Lweis, G., Bebbington, P. et al. (1997) The National Psychiatric Morbidity surveys of Great Britain initial findings from the household survey. Psychological Medicine, 27, 775 789. 8. Ayuso Matoes, J. L., Vazquez Barquero, J. L., Dow rick, C. et al. (2001) Depressive disorders in Europe: prevalence figures from the ODIN study. British Jour nal of Psychiatry, 179, 308 316. 9. Kessler, R., Chiu, W. T., Jin, R. et al. (2006) The epidemiology of panic attacks, panic disorder

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10.

11.

12.

13.

14.

15.

16.

17.

18.

19.

20.

and agarophobia in the National Comorbidity Survey Replication. Archives of General Psychiatry, 63, 415 424. Maercker, A., Forstmeier, S., Enzler, A. et al. (2008) Adjustment disorder, post traumatic stress disorder, and depressive disorders in old age: findings from a community survey. Comprehensive Psychiatry, 49 (2), 113 120. Henken, H. T., Huibers, M. J. H., Churchill, R. et al. (2007) Family Therapy for Depression (Review), Cochrane Database of Systematic Reviews: Reviews 2007 Issue 3.Chichester, UK: John Wiley & Sons, Ltd. DOI: 10.1002/14651858.CD006728. 2007. Vaughan, C. and Leff, J. P. (1976) The influence of family and social factors on the course of psychiatric illness. A comparison of schizophrenic and depressed neurotic patients. British Journal of Psychiatry, 129, 125 137. Leff, J. P., Vearnals, S., Wolff, G. et al. (2000) The London Depression Intervention Trial. British Journal of Psychiatry, 177, 95 100. Hinrichsen, G. A. and Pollack, S. (1997) Expressed emotion and the course of late life depression. Journal of Abnormal Psychology, 106 (2), 336 340. Hayhurst, H., Cooper, Z., Paykel, E. S. et al. (1997) Expressed emotion and depression. A longitudinal study. British Journal of Psychiatry, 171, 439 443. Kronmuller, K. T., Backenstrass, M. and Victor, D. (2008) Expressed emotion, perceived criticism and 10 year outcome of depression. Psychiatry Research, 159 (1 2), 50 55. Newman, M., Ericson, T., Przeworski, A. et al. (2003) Self help and minimal contact therapies for anxiety disorders: Is human contact necessary for ther apeutic efficacy? Journal of Clinical Psychology, 59, 251 274. Bower, P., Richards, D. and Lovell, K. (2001) The clinical and cost effectiveness of self help treatments for anxiety and depressive disorders in primary care: a systematic review. British Journal of General Practice, 51 (471), 838 845. National Collaborating Centre for Mental Health (2005) Management of Depression in Primary and Secondary Care. (National Clinical Practice Guideline 23), National Institute for Clinical Excel lence, London. Bower, P. and Gilbody, S. (2005) Stepped care in psychological therapies. Narrative literature review. British Journal of Psychiatry, 186, 11 17.

447

21. Gregory, R., Canning, S., Lee, T. et al. (2004) Cognitive bibliotherapy for depression: a meta analysis. Profes sional Psychology: Research and Practice, 235, 275 280. 22. Den Boer, P., Wiersma, D., and Van Den Bosch, R. (2004) Why is self help neglected in the treatment of emotional disorders. A meta analysis. Psychological Medicine, 34, 959 971. 23. Mead, N., McDonald, W., Bower, P. et al. (2005) The clinical effectiveness of guided self help versus wait ing list control in the management of anxiety and depression: a randomised controlled trial. Psychologi cal Medicine, 35, 1633 1643. 24. Brown, J. S. L., Cochrane, R. and Hancox, T. (2000) Large scale stress management workshops for the general public: a controlled evaluation. Behavioural and Cognitive Psychotherapy, 28, 139 151. 25. Watkins, E., Elliott, S., Stanhope, N. et al. (2000) Meeting the needs for psychological treatment of peo ple with common mental disorders. An exploratory study. Journal of Mental Health, 9, 445 456. 26. Brown, J. S. L., Elliott, S. A., Boardman, J. et al. (2004) Meeting the unmet need for depression services with psycho educational self confidence workshops: preli minary report. British Journal of Psychiatry, 185, 511 515. 27. Dowrick, C., Dunn, G., Ayuso MAtoes, J. L. et al. (2000) Problem solving treatment and group psychoe ducation for depression: multicentre randomised con trolled trial. Outcomes of Depression International Network (ODIN) Group. British Medical Journal, 321 (7274), 1450 1454. 28. Andersson, G., Bergstrom, J., Carlbring, P. et al. (2005) The use of the internet in the treatment of anxiety disorders. Current Opinion in Psychiatry, 18, 73 77. 29. Pull, C. (2008) Self help internet interventions for mental disorders. Current Opinion in Psychiatry, 19, 50 53. 30. Van Straten, A., Cuijpers, P. and Smits, N. (2008) Effectiveness of a web based self help intervention for symptoms of depression, anxiety and stress: rando mised controlled trial. Journal of Medical Internet Research, 10 (1), e7. 31. Connor, K. M. and Davidson, J. R. (2003) Development of a new resilience scale: the Connor Davidson Resi lience Scale (CD RISC). Depression and Anxiety, 18, 76 82. 32. Southwick, S. M., Vythilingam, M. and Charney, D. S. (2005) The psychobiology of depression and resilience

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to stress: implications for prevention and treatment. Annual Review of Clinical Psychology, 1, 255 291. 33. Steinhardt, M. and Dolbier, C. (2008) Evaluation of a resilience intervention to enhance coping strategies and protective factors and decrease symptomatology. Journal of American College Health, 56 (4), 445 453. 34. Olstad, R., Sexton, H. and Sagaard, A. J. (2001) The Finnmark Study. A prospective population study of social support buffer hypothesis, specific stressors and mental distress. Social Psychiatry and Psychiatric Epidemiology, 36 (12), 582 589. 35. Harris, T., Brown, G. W. and Robinson, R. (1999) Befriending as an intervention for chronic depression

among women in an inner city. 1. Randomised controlled trial. British Journal of Psychiatry, 174, 219 224. 36. Harris, T., Brown, G. W. and Robinson, R. (1999) Befriending as an intervention for chronic depression among women in an inner city. 2: role of fresh start experiences and baseline psycho social factors in remission from depression. British Journal of Psychia try, 174, 225 232. 37. Casey, P. R., Dowrick, C. and Wilkinson, G. (2001) Adjustment disorders: fault line in the psychiatric glossary. British Journal of Psychiatry, 179, 479 481.

34 Problem-solving therapy for people with personality disorders Mary McMurran,1 Christine Maguth Nezu1 and Arthur M. Nezu2 1 2

Department of Psychiatry, Institute of Mental Health, University of Nottingham, Nottingham, UK Department of Psychology, Drexel University, Philadelphia, Pennsylvania, USA

34.1

INTRODUCTION

Personality disorder is defined in the Diagnostic and Statistical Manual of Mental Disorders [1,2] as ‘an enduring pattern of inner experience and behaviour that deviates markedly from the expectations of the individual’s culture, is pervasive and inflexible, has an onset in adolescence or early adulthood, is stable over time, and leads to distress or impairment’ (p. 629). The personality disorders and their key characteristics are listed in Table 34.1. The prevalence of personality disorder identified in a recent study of a representative sample of the UK general population, using a structured clinical interview, was 4.4% overall, with men more likely to have a personality disorder (5.4%) than women (3.4%) [3]. The prevalence of each personality disorder type identified in Coid et al.’s study is presented in Table 34.1. People with personality disorder suffer high levels of distress, suicide, self-harm, addiction, family breakdown and social exclusion. They place a high burden of cost on primary care, costing almost twice as much as people without [4]. Therefore, the devel-

opment of effective treatments for people with personality disorders has the potential to reduce distress, social problems and health care costs. The importance of this has been recognized by the UK Department of Health in their document, Personality Disorder: No Longer a Diagnosis of Exclusion [5]. While the existence of provision for people with personality disorder in intensive inpatient services and in forensic services was acknowledged, what was identified as missing in many areas was a community-based service for people with personality disorders. The guidance was that all Health Service Trusts should develop multidisciplinary, specialist personality disorder treatment teams, whose functions would be to develop ways of working with patients with personality disorder and to support health service staff whose caseload includes people with personality disorder. Clearly, these specialist teams require a repertoire of effective treatments for working with people with personality disorder. The purpose of this chapter is to describe in detail one

Principles of Social Psychiatry, second edition Edited by Craig Morgan and Dinesh Bhugra Ó 2010 John Wiley & Sons, Ltd.

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Table 34.1

Prevalence of DSM IV personality disorder in a UK sample [3]

Personality disorder

Key characteristics

Cluster A Paranoid Schizoid Schizotypal Cluster B Antisocial Borderline Histrionic Narcissistic Cluster C Avoidant Dependent Obsessive compulsive Any personality disorder Personality disorder unspecifieda

Prevalence (%)

Distrust, suspiciousness Socially and emotionally detached Unusual perceptions, odd beliefs, socially anxious Disregards the rights of others Unstable mood, relationships and self image Excessively emotional, attention seeking Grandiose, lacks empathy, needs admiration Socially inhibited, feels inadequate, oversensitive Clinging, submissive Perfectionist, inflexible

1.60 0.70 0.80 0.06 1.20 0.60 0.70 0.00 0.00 2.60 0.80 0.10 1.90 4.40 5.70

a

Unspecified personality disorder was where the individual met 10 or more criteria for personality disorder overall but did not meet the criteria for any specific diagnosis.

particular therapy problem-solving therapy. Before focusing on this therapy, however, a broader picture

34.2

of psychosocial treatments for people with personality disorder will be given.

TREATMENTS FOR PEOPLE WITH PERSONALITY DISORDER

In the opinion of service users, clinicians and academics, treatment services for people with personality disorder should aim to reduce the stigma associated with the diagnosis and improve the individual’s quality of life [6]. The preferred service is one that is community-based and offers psychological interventions. Treatment and support may need to be offered long-term and so it is likely that a range of therapeutic activities will be required to meet the needs of service users. This is illustrated in a recent Department of Health project, which supported and evaluated a number of pilot community-based services for people with personality disorder [7]. These pilot projects provided a range of psychological and psychosocial interventions to help people with personality disorder improve their coping skills, social functioning and quality of life, and also provided assistance for service users to access a wide range of community-based activities, education and employment. Rather than impose interventions upon the client, these new

services promoted informed choice from a range of options. These multicomponent services illustrate the different levels of intervention and support that comprise a holistic, supportive and client-centred service: psychological, social and occupational interventions are all important. Psychological interventions were observed to prepare people to make the best use of social and occupational opportunities. Specific psychological interventions will be described more fully next, but with due recognition of the wider provision required for people with personality disorders.

34.2.1

Psychological treatments

A recent systematic review of randomized controlled trials of psychological treatments for people with personality disorders found both cognitive-behavioural and psychodynamic therapies to be effective for people with personality disorders [8]. This accords

PROBLEM-SOLVING THERAPY FOR PEOPLE WITH PERSONALITY DISORDERS

with earlier meta-analyses of treatment outcomes for personality disorders which showed a strong positive effect of treatment (Cohen’s d1 0.80 to 1.39), with both cognitive-behavioural and psychodynamic approaches showing good effects [9,10]. Dialectical behaviour therapy (DBT) is the most widely evaluated treatment, primarily with women with borderline personality disorder. DBT is based on the premise that the borderline personality disorder is typified by a failure to regulate emotions. Emotional dysregulation is understood to have developed as a result of a biologically based emotional vulnerability in combination with an invalidating environment, which is one where the child’s private experiences are denied, contradicted or punished by significant others [11,12]. A combination of group and individual therapies, over a period of around a year, focus on enhancing motivation to engage, building self-acceptance, developing distress tolerance, teaching skills for emotion regulation and improving interpersonal effectiveness. Positive effects in randomized controlled trials have been to reduce self-harming behaviours, reduce substance use and improve global adjustment [13 15]. Furthermore, those in DBT are significantly more likely to remain in treatment compared with those in treatment as usual [15]. One important aspect of DBT concerns its focus on ongoing peer supervision and support for DBT therapists [11]. For therapists working with persons diagnosed with personality disorder, it can be frustrating and disappointing frequently to confront patterns of extreme emotional instability, suicidal and aggressive therapy-interfering behaviours, and volatile reactions to the therapist [11]. In groups of people with any personality disorder, psychodynamic interventions have effectively reduced depression and improved quality of life [16], and also reduced symptoms and target complaints [17]. Bateman and Fonagy [18,19] compared psychoanalytically oriented psychotherapy with partial hospitalization of

1

451

18 months duration with general psychiatric treatment for people with borderline personality disorder. They found that the treatment group became less depressed, decreased self-harming behaviours, reduced their days in hospital and improved their social functioning, whereas the control group did not change or even deteriorated. The treatment group maintained these gains and showed some further improvement at followup 18 months after treatment. Cognitive-behavioural treatments, which modify maladaptive core beliefs and teach emotional and interpersonal coping skills, have proven effective in reducing obsessive and avoidant beliefs in those with avoidant personality disorder [20], improving emotion control in those with borderline personality disorder [21] and improving social functioning [22]. Contingency management has enabled the transfer of drug abusers with antisocial personality disorder into routine care [23]. Psychoeducation, along with pharmacological interventions, reduced relapse rates in groups of people with any personality disorder [24]. One randomized controlled trial that appeared in the literature too late to appear in Duggan et al.’s [8] systematic review was combined psychoeducation plus a brief problem-solving therapy called Stop & Think! This intervention was effective in improving social functioning and anger control in community adults with any personality disorder [25]. Since there is evidence that problem-solving therapy is effective for people with personality disorder, our focus will now turn to describing this intervention in more depth and describing its adaptation for this particular client group. This is not to imply that problem-solving therapy is superior to any other therapy it is simply one evidence-based therapy that clinicians may choose to offer and clients may choose to receive. However, problem-solving therapy does have the potential to be offered widely in community mental health services, and thus it is of high relevance to readers of this book.

Cohen’s d is an effect size statistic calculated by subtracting the post treatment mean from the pre treatment mean and dividing by the pooled standard deviations. An effect size of .20 is considered small, .50 medium, and .80 large.

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34.3

PROBLEM-SOLVING THERAPY

Problem-solving therapy is a cognitive-affectivebehavioural intervention that promotes the application of effective problem-solving skills to solving problems in everyday living [26]. The theory and practice of problem-solving therapy was originally outlined by D’Zurilla and Goldfried [27] and has since been refined and revised by Thomas J. D’Zurilla, Arthur M. Nezu and Christine Maguth Nezu [28 30]. Recent meta-analyses of problem-solving therapy outcome studies document its effectiveness for people with a wide range of mental and physical health problems [31 33]. Our own research indicates that problem-solving therapy is an effective intervention for people with personality disorders [25]. To set the scene, we will begin by describing the conceptual underpinnings of the problem-solving therapy. We will then outline the relevance of problem-solving therapy to people with personality disorders. Finally, we will present evidence suggesting that problem-solving therapy can help people with personality disorders to function better.

34.3.1

Social problem solving

Social problem solving is ‘the self-directed cognitiveaffective-behavioral process by which an individual attempts to identify or discover solutions to specific problems encountered in everyday living’ ([28], p. 11). The use of the descriptor ‘social’ identifies this type of problem solving as that which is applied to the wide variety of stressful problems encountered in the course of everyday living [28]. Problems may be acute or chronic; they may be small daily hassles or large complex life problems; and they may manifest as internal distress or conflict with others. While the wider political and economic context is an important framework for understanding an individual’s problems, the focus here is on problems in living that originate from the individual in interaction with his or her social environment. All interpersonal situations are influenced by individual characteristics, such as the temperament, emotion regulation skills, commu-

nication skills, goals and values of all the persons involved. Difficulties can arise when there are temperament clashes, goal conflicts or skills deficits. There is abundant evidence of an association between social problem-solving deficits and psychological distress, physical ill-health, substance misuse, hostility and aggression, and mental health problems [34 37]. Assisting people to develop better social problem-solving skills can protect against these adverse outcomes by increasing the likelihood of achieving an effective solution to life’s problems. An effective solution is: ‘one that achieves the problemsolving goal (i.e. changes the situation for the better and/or reduces the distress that it produces), while at the same time maximizing other positive consequences and minimizing negative consequences . . . to others as well as oneself’ ([28], p. 13). Thus, a solution that disregards the welfare of other people is not an effective solution. As an example, consider a situation where, in an intimate relationship, a person feels jealous of his or her partner’s friendships with others. One solution that may reduce the unpleasant feelings of jealousy is to control the partner’s social activities through intimidation. While this may reduce feelings of jealousy, there are obvious negative consequences for the partner; hence the solution cannot be defined as effective. Effective solutions might include more equitable relationship contracting and a closer examination of the causes of jealous feelings. Empirical studies of problem-solving processes have identified two dimensions that determine problem-solving outcomes: problem orientation and problem-solving style [28]. Problem orientation refers to the individual’s personal beliefs, attitudes, emotional reactions and efficacy expectations with regard to problems in living. A positive problem orientation is the tendency to appraise problems as a challenge, show optimism about the likelihood of solving problems, believe that one has the ability to solve problems, acknowledge that problem solving requires time and effort, and attempt to cope with the problem rather than avoid it. A negative problem orientation is the tendency to view problems as a threat, believe that problems cannot be solved, doubt one’s own ability to

PROBLEM-SOLVING THERAPY FOR PEOPLE WITH PERSONALITY DISORDERS

solve problems and, when problems arise, to experience frustration and significant upset rather than viewing negative emotions as a source of information. A positive problem orientation facilitates adaptive problem-solving efforts and a negative orientation inhibits problem-solving attempts. Problem-solving style refers to the activities that people engage in when attempting to cope with problems in living. Three styles have been identified, one being adaptive and two maladaptive. Rational problem solving is the constructive problem-solving style that involves the systematic application of those skills that enhance the likelihood of discovering an effective solution or coping response. These skills are defining the problem accurately, setting specific, desirable and attainable goals, generating a range of options for goal attainment, weighing up the costs and benefits of each option, developing a promising solution plan and evaluating the plan after it is implemented. By contrast, an impulsivity/carelessness style is characterized by impulsive, hurried and careless attempts at problem resolution, and an avoidance style is characterized by procrastination, passivity and overdependence on others to provide solutions. Both such styles are dysfunctional, usually leading to unsuccessful problem resolution. Good social problem-solving skills consist of the ability to recognize problems when they arise and be realistic about their impact upon oneself, define the problem clearly and accurately, set goals for change, produce a diversity of possible solutions, anticipate outcomes, devise effective action plans that have stepwise stages and carry out those action plans to solve problems effectively. These are the skills taught in problem-solving therapy. However, problem-solving skills may be learned but not applied successfully unless the individual feels optimistic about finding solutions to problems and confident in his or her ability to work towards realizing these solutions. Therapy must work to decrease the person’s negative problem orientation and develop a positive orientation; without attention to these cognitive-emotional matters, therapy is unlikely to be effective [31,33]. Engaging people with personality disorders in treatment is a major challenge [38]. The social problemsolving approach enhances engagement by offering an accessible framework for change (i.e. the approach

453

appeals to common sense), supporting people in the experience of successful problem solving (i.e. increasing the likelihood of reinforcement of the developing skills) and encouraging independence rather than reliance on therapy (i.e. promoting self-efficacy). Problem-solving therapy is suited to people with personality disorder because the focus is on reducing personal distress and improving social functioning. These outcomes are considered to be of paramount importance in personality treatment [6]. Furthermore, social dysfunction has been empirically identified in several studies as an integral component of personality disorder [39 41]; hence the emphasis on social functioning that underpins problem-solving therapy is highly relevant to the treatment of personality disorder. The aim in therapy is to help people recognize their strengths and limitations and work with these to learn new skills that will enable them to cope more effectively with life’s problems. Problem-solving therapy helps clients to adopt a more realistically positive orientation to problem solving, cope better with the negative emotions that hinder effective problem solving and adopt a rational problem-solving style that will lead to outcomes that improve social functioning and reduce distress.

34.3.2

Social problem solving and personality disorder

In our research, the assessment we have used is the Social Problem-Solving Inventory Revised (SPSIR) [42]. The SPSI-R measures problem-solving orientations and styles: Positive Problem Orientation (PPO), Negative Problem Orientation (NPO), Rational Problem Solving (RPS), Impulsivity/Carelessness Style (ICS) and Avoidance Style (AS). A total Social Problem Solving (SPS) score may be calculated from these scales. Effective social problem solving is indicated by higher scores on PPO, RPS and SPS, and lower scores on NPO, ICS and AS. Using the SPSI-R, we have found that people with personality disorders, both community adults presenting for treatment and detained personality disordered offenders, reported less desirable scores on all SPSI-R scales compared with a functional sample of mature students (see Table 34.2). Overall, women community

454

SOCIAL INTERVENTIONS

Table 34.2

Mean scores and standard deviations on the Social Problem Solving Inventory

SPSI R Positive problem orientation Negative problem orientation Rational problem solving Impulsivity/carelessness style Avoidant style Social problem solving

Revised for UK samples

Personality disordered Personality Male personality community women disordered community disordered offenders Male mature (N ¼ 93)a men (N ¼ 80)a (N ¼ 72)b students (N ¼ 70)c 4.37 (3.69) 29.15 (8.16) 19.52 (17.16) 21.14 (9.58) 15.38 (7.14) 6.64 (3.40)

6.36 (4.38) 25.35 (8.34) 24.20 (17.53) 19.64 (9.00) 14.56 (6.31) 7.92 (3.41)

9.29 (4.63) 22.33 (8.65) 29.19 (18.08) 23.32 (8.88) 15.25 (6.48) 8.52 (3.57)

12.82 (4.14) 10.95 (6.79) 44.78 (12.60) 10.97 (5.84) 8.25 (5.42) 13.39 (2.51)

a

Unpublished data from Huband et al.’s [25] sample. Unpublished data from the Personality Disorder Treatment Unit, Arnold Lodge, Leicester. c Data from McMurran et al. [43]. b

personality disorder clients show more dysfunction than any other group. We have also examined the relationship between the SPSI-R social problem-solving scales and specific personality disorder characteristics, assessed using dimensional scores on the International Personality Disorders Examination (IPDE) [44] in 179 community adults in treatment for personality disorder [45]. The prevalence of specific personality disorders in this sample is presented in Table 34.3, showing that those presenting for treatment in the community had difficulties associated primarily with borderline and avoidant personality disorders. None of the SPSI-R scales predicted Cluster A personality disorder characteristics. In Cluster B, the impulsivity/carelessness style was the common thread, consistent with the dramatic, emotional or erratic description of these disorders. Borderline personality disorder scores were predicted by high ICS and low AS; histrionic personality disorder scores were predicted by high ICS; and narcissistic personality disorder scores were predicted by high ICS and high PPO. We expected antisocial personality disorder scores to be associated with an impulsivity/carelessness style, but this was not evident in our data. In Cluster C, negative problem orientation was a common predictor of avoidant and dependent personality disorder scores, consistent with the anxious nature of these disorders. Avoidant personality disorder scores were also predicted by low ICS. Obsessive-compulsive personality disorder characteristics were not predicted by any SPSI-R scale.

Further work is necessary in examining the specific social problem-solving strengths and weaknesses associated with each personality disorder type, particularly those types that were rarely represented in the sample under study. However, these preliminary data tell us two things. First, people with Cluster B disorders, and particularly people with borderline traits, are likely to benefit from a focus on an impulsivity/carelessness style of problem solving. Chang et al. [46] investigated the relationship between social Table 34.3 Frequencies of presence and absence of diagnoses for each personality disorder (N ¼ 173; 73 men, 100 women) [45] Present

Cluster/diagnosis

Absent

Men Women Total Men Women Total Cluster A Paranoid Schizoid Schizotypal Cluster B Antisocial Borderline Histrionic Narcissistic Cluster C Avoidant Dependent Obsessive compulsive Not otherwise specified

8 1 1

11 2 0

19 3 1

51 70 70

71 89 97

122 159 167

10 23 0 2

9 59 3 1

19 82 3 3

59 33 73 69

83 27 91 99

142 60 164 168

32 2 9

42 6 10

74 8 19

33 65 46

38 84 71

71 149 117

18

17

35

55

83

138

PROBLEM-SOLVING THERAPY FOR PEOPLE WITH PERSONALITY DISORDERS

problem solving and positive psychological functioning in a student sample using the Ryff [47] measure of psychological well-being. High ICS scores were significantly and negatively related to several domains: personal growth, purpose in life, positive relations with others, autonomy and self-acceptance. An impulsivity/carelessness style of social problem solving is, therefore, important to address in therapy for people with Cluster B disorders and improvements in selfconcept and interpersonal functioning would be expected outcomes. Second, people in Cluster C, and particularly those with avoidant traits, are likely to benefit from a focus on a negative problem orientation. This relates to feelings of fear, pessimism and inadequacy when faced with life’s problems. The importance of dispelling this negative cognitive-emotional orientation was evident from evaluation of our treatment outcome data: reducing a negative problem orientation was the best predictor of good outcome [48]. It is to a description of this treatment that we will now turn.

34.3.3

‘Stop & think!’ a problem-solving approach to working with people with personality disorder

One therapeutic approach to developing the skills of social problem solving that has been evaluated with people with personality disorder is Stop & Think! [49]. Based firmly on research into social problem solving and upon soundly evaluated therapies [28,30,50], this group intervention aims to teach the skills of good social problem solving. These are: (1) problem recognition learning to recognize that negative emotions are signals that a problem exists and responding to negative emotions by using them to inform and proceed with a rational, problem-solving approach; (2) problem definition learning to define a problem clearly and accurately; (3) goal setting learning to specify the desired outcomes; (4) generation of alternatives learning to be creative and generate a range of possible ways to achieve the set goals; (5) decision-making learning to examine the likely positive and negative consequences to both self and others of each potential solution and to select those

455

actions most likely to lead to an effective solution; and (6) evaluation learning to review the degree of success of the action plan, so that the problem-solving process is reinforced by success and so that corrective action may be taken where necessary. In Stop & Think! these steps are translated into six key questions that guide the problem-solving process in clinical practice: (1) Feeling bad? (2) What’s my problem? (3) What do I want? (4) What are my options? (5) What is my plan? (6) How am I doing? In Stop & Think! sessions the focus is on each participant’s current concerns, aiming not only to solve existing problems but also to teach people the problem-solving strategy. Stop & Think! was piloted first with personality disordered offenders detained in a UK regional secure unit, with consequent improvements in patients’ SPSI-R scores [51,52]. In a survey of patients’ opinions, Stop & Think! was viewed overall as a helpful intervention [53]. More recently, the effectiveness of Stop & Think! with community adults with personality disorder has been evaluated in a randomized controlled trial [25]. In this trial, Stop & Think! was preceded by up to four individual psychoeducation sessions. In psychoeducation, the client’s personality disorder diagnosis is clarified and linked with the problems in functioning experienced by the individual [54]. This component developed from information that people in treatment for personality disorder may not have been informed of their diagnosis or have been helped to understand how their diagnosis related to their emotional and behavioural problems [55]. Psychoeducation is an educative and motivational component that precedes problem-solving therapy and together these components are called PEPS therapy psychoeducation and problem-solving therapy. The value of PEPS therapy was then examined by allocating 176 men and women with any personality disorder in the community to either treatment or a waiting list control. The treated group received, on average, nine Stop & Think! group sessions and a further three individual sessions, the purpose of which was to support the implementation of action plans. Using an intention-to-treat analysis, at 6-month follow-up post-treatment the treated group showed significantly better functioning on the primary outcome measure the Social Functioning Questionnaire

456

SOCIAL INTERVENTIONS

Table 34.4

Mean scores on psychometric tests for treatment and control groups (standard deviations in parentheses) Endpoint

Measure SFQ SPSI R STAXI

Range

Intervention

N

Control

N

a

12.09 (4.54) 9.62 (4.05) 45.1 (16.5)

74 75 76

13.74 (3.78) 7.12 (3.42) 51.2 (16.5)

72 70 55

0 24 0 20 0 96 a

Difference 1.05 2.09 6.1

d 0.25 0.56 0.37

a

Higher scores represent greater dysfunction.

(SFQ) [56], which measures functioning in the domains of home, work, leisure and relationships. Improvement in social functioning is of key importance in that this has been identified in several studies as an integral component of personality disorder (e.g. see Reference [39]). Treated participants also showed better status on two secondary outcome measures the SPSI-R total social problem-solving score and anger expression, as measured by the State-Trait Anger Expression Inventory (STAXI-2) [57]. More detail is presented in Table 34.4. Further analysis showed that, after controlling for baseline social functioning, the best predictor of improvement was a positive change in the SPSI-R scale, NPO [48]. This research shows that a relatively brief intervention based on psychoeducation and social problemsolving therapy is a promising intervention for people with personality disorders. Commentators on the randomized controlled trial have identified the study as

34.4

important in four ways [58,59]. First, the intervention was brief, this being more acceptable to many patients than lengthier interventions, with the likelihood of reducing drop-out and also being more acceptable to services with limited resources. Second, the intervention was delivered in real clinical settings; hence its likely effectiveness in everyday practice was indicated. Third, it was offered to people with any personality disorder or combination of personality disorders, so it was inclusive rather than exclusive. Fourth, it was delivered by nonspecialist staff; hence it would be possible to deliver it relatively cheaply. These advantages notwithstanding, there is a need for further investigation into the respective contributions of psychoeducation and social problem-solving therapy in achieving good outcomes and an examination of the maintenance of gains over a longer-term follow-up period. A larger, multisite randomized controlled trial of Stop & Think! is now under way.

CONCLUSION

Problem-solving therapy is one apparently effective treatment approach that has potential value as one of the components within the broader range of services that people with personality disorder require. Improving the capability of staff to work with people with personality disorders is a national priority [60]. Training, based on a Stop & Think! therapy manual [61], is well developed. Additionally, the problem-solving process can be used by clinicians as a conceptual framework to assist in case formulation and the development of treatment strategies [29]. Using the problem-solving approach in this way, the clinician or therapist has a ‘problem’, namely the difficulties presented by the client, and the ‘solution’ is to devise

a treatment plan that will help the client achieve the desired treatment outcomes. The problem-solving process leads the clinician through activities to assist with understanding the problem, identifying intermediate and ultimate treatment goals, and evaluating progress towards goals. This approach may have value for staff who feel in need of training to work with people with personality disorders [62]. Through future research, we hope to identify specific deficits in social problem solving that relate to particular personality disorders, so that we can adjust our intervention better to meet the needs of clients. This will require attention to issues associated with reluctance to access and engage in

PROBLEM-SOLVING THERAPY FOR PEOPLE WITH PERSONALITY DISORDERS

treatment, emotion regulation problems that present an obstacle to effective problem solving, maladaptive goal profiles (i.e. choice of goals that are not inherently rewarding or goals that conflict with each other) and difficulties pursuing goals to a satisfactory outcome. It is through further research such as this that problem-solving therapy can be developed and refined to suit the needs of individuals with personality disorder better.

REFERENCES 1. American Psychiatric Association (APA) (1994) Diag nostic and Statistical Manual of Mental Disorders, 4th edn, APA, Washington, DC. 2. American Psychiatric Association (APA) (2000) Diag nostic and Statistical Manual of Mental Disorders, 4th edn, text revision, APA, Washington, DC. 3. Coid, J., Yang, M., Tyrer, P. et al. (2006) Prevalence and correlates of personality disorder in Great Britain. British Journal of Psychiatry, 188, 423 431. 4. Rendu, A., Moran, P., Patel, A. et al. (2002) Economic impact of personality disorders in UK primary care attenders. British Journal of Psychiatry, 181, 62 66. 5. National Institute for Mental Health in England (2003) Personality Disorder: No Longer a Diagnosis of Exclu sion, Department of Health, London. 6. Crawford, M., Price, K., Rutter, D. et al. (2008) Dedi cated community based services for adults with per sonality disorder: Delphi study. British Journal of Psychiatry, 193, 342 343. 7. Crawford, M. and Rutter, D. (2007) Lessons learned from an evaluation of dedicated community based services for people with personality disorder. Mental Health Review Journal, 12, 55 61. 8. Duggan, C., Huband, N., Smailagic, N. et al. (2007) The use of psychological treatments for people with personality disorder: a systematic review of rando mized controlled trials. Personality and Mental Health, 1, 95 125. 9. Liechsenring, F., Rabung, S. and Liebing, E. (2004) The efficacy of short term psychodynamic psychotherapy in specific psychiatric disorders: a meta analysis. Archives of General Psychiatry, 61, 1208 1216. 10. Perry, J. C., Banon, E., and Ianni, F. (1999) Effective ness of psychotherapy for personality disorders. Amer ican Journal of Psychiatry, 156, 1312 1321.

457

11. Linehan, M. M. (1993) Cognitive Behavioral Treat ment of Borderline Personality Disorder, Guilford Press, New York. 12. Linehan, M. M. (1993) Skills Training Manual for Treating Borderline Personality Disorder, Guilford Press, New York. 13. Koons, C. R., Robins, C. J., Tweed, J. L. et al. (2001) Efficacy of dialectical behavior therapy in women veterans with borderline personality disorder. Behavior Therapy, 32, 371 390. 14. Turner, R. M. (2000) Naturalistic evaluation of dialec tical behavior therapy oriented treatment for Border line personality disorder. Cognitive and Behavioral Practice, 7, 413 419. 15. Verheul, R., van den Bosch, L. M., Koeter, M. W. et al. (2003) Dialectical behaviour therapy for women with borderline personality disorder: 12 month, randomised clinical trial in the Netherlands. British Journal of Psychiatry, 182, 135 140. 16. Kool, S., Dekker, J., Duijsens, I.J. et al. (2003) Efficacy of combined therapy and pharmacotherapy for depressed patients with or without personality disor ders. Harvard Review of Psychiatry, 11, 133 141. 17. Winston, A., Laikin, M., Pollack, J. et al. (1994) Short term psychotherapy of personality disorders. American Journal of Psychiatry, 151, 190 194. 18. Bateman, A. and Fonagy, P. (1999) Effectiveness of partial hospitalization in the treatment of borderline personality disorder: a randomized controlled trial. American Journal of Psychiatry, 156, 1563 1569. 19. Bateman, A. and Fonagy, P. (2001) Treatment of borderline personality disorder with psychoanalyti cally oriented partial hospitalization: an 18 month follow up. American Journal of Psychiatry, 158, 36 42. 20. Emmelkamp, P. M. G., Benner, A., Kuipers, A. et al. (2006) Comparison of brief dynamic and cognitive behavioural therapies in avoidant personality disorder. British Journal of Psychiatry, 189, 60 64. 21. Gratz, K. L. and Gunderson, J. G. (2006) Preliminary data on an acceptance based emotion regulation group intervention for deliberate self harm among women with borderline personality disorder. Behavior Ther apy, 37, 25 35. 22. Evans, K., Tyrer, P., Catalan, J. et al. (1999) Manual assisted cognitive behaviour therapy (MACT): a ran domized controlled trial of a brief intervention with bibliotherapy in the treatment of recurrent deliberate self harm. Psychological Medicine, 29, 19 25.

458

SOCIAL INTERVENTIONS

23. Brooner, R. K., Kidorf, M., King, V. L. and Stoller, K. (1998) Preliminary evidence of good treatment response on antisocial drug abusers. Drug and Alcohol Dependence, 49, 249 260. 24. Colom, F., Vieta, E., Sanchez Moreno, J. et al. (2004) Psychoeducation in bipolar patients with comorbid personality disorders. Bipolar Disorders, 6, 294 298. 25. Huband, N., McMurran, M., Evans, C. and Duggan, C. (2007) Social problem solving plus psychoeducation for adults with personality disorder: a pragmatic ran domised controlled trial. British Journal of Psychiatry, 190, 307 313. 26. Nezu, A. M. (2004) Problem solving and behavior therapy revisited. Behavior Therapy, 35, 1 33. 27. D’Zurilla, T. J. and Goldfried, M. R. (1971) Problem solving and behavior modification. Journal of Abnor mal Psychology, 78, 107 126. 28. D’Zurilla, T. J. and Nezu, A. M. (2007) Problem Solving Therapy: A Positive Approach To Clinical Intervention, 3rd edn, Springer Publishing Co., New York. 29. Nezu, A. M., Nezu, C. M. and Cos, T. A. (2007) Case formulation for the behavioural and cognitive thera pies: a problem solving perspective, in Handbook of Psychotherapy Case Formulation, 2nd edn (ed. T. D. Ells), Guilford Press, New York. 30. Nezu, A. M., Nezu, C. M. and D’Zurilla, T. J. (2007) Solving Life’s Problems: A 5 Step Guide to Enhanced Well Being, Springer Publishing Co., New York. 31. Bell, A. C. and D’Zurilla, T. J. (2007) Problem solving therapy for depression: a meta analysis. Clinical Psy chology Review, 29, 348 353. 32. Cuijpers, P., van Straten, A. and Warmerdam, L. (2007) Problem solving therapies for depression: a meta ana lysis. European Psychiatry, 22, 9 15. 33. Malouff, J. M., Thorsteinsson, E. B. and Schutte, N. S. (2007) The efficacy of problem solving therapy in reducing mental and physical health problems: a meta analysis. Clinical Psychology Review, 27, 46 57. 34. Herrick, S. M. and Elliott, T. R. (2001) Social pro blem, solving abilities and personality disorder char acteristics among dual diagnosed persons in substance abuse treatment. Journal of Clinical Psychology, 57, 75 92. 35. Keltikangas J€arvinen, L. and Pakaslahti, L. (1999) Development of social problem solving strategiesand changes in aggressive behavior: a 7 year follow up from childhood to late adolescence. Aggressive Beha vior, 25, 269 279.

36. Matthys, W., Cuperus, J. M. and van Engeland, H. (1999) Deficient social problem solving in boys with ODD/CD, with ADHD, and with both disorders. Jour nal of the American Academy of Child and Adolescent Psychiatry, 38, 311 321. 37. Nezu, A. M., Wilkins, V. M. and Nezu, C. M. (2004) Social problem solving, stress, and negative affective conditions, in Social Problem Solving: Theory, Research, and Training (eds E. C. Chang, T. J. D’Zurilla and L. J. Sanna), American Psychological Association, Washington, DC, pp. 49 65. 38. McMurran, M., Huband, N. and Duggan, C. (2008) A comparison of treatment completers and non comple ters of an inpatient treatment programme for male personality disordered offenders. Psychology and Psy chotherapy: Theory, Research and Practice, 81, 193 198. 39. Nur, U., Tyrer, P., Merson, S. and Johnson, T. (2004) Relationship between clinical symptoms, per sonality disturbance, and social function: a statistical enquiry. Irish Journal of Psychological Medicine, 21, 19 22. 40. Seivewright, H., Tyrer, P. and Johnson, T. (2004) Per sistent social dysfunction in anxious and depressed patients with personality disorder. Acta Psychiatrica Scandinavica, 109, 104 109. 41. Skodol, A. E., Pagano, M. E., Bender, D. S. et al. (2005) Stability of functional impairment in patients with schizotypal, borderline, avoidant, or obsessive com pulsive personality disorder over two years. Psycholo gical Medicine, 35, 443 451. 42. D’Zurilla, T. J., Nezu, A. M. and Maydeu Olivares, A. (2002) Manual for the Social Problem Solving Inven tory Revised, Multi Health Systems, North Tona wanda, New York. 43. McMurran, M., Blair, M. and Egan, V. (2002) An investigation of the correlations between aggressive ness, impulsiveness, social problem solving, and alco hol use. Aggressive Behavior, 28, 439 445. 44. Loranger, A. W. (1999) International Personality Dis order Examination (IPDE), Psychological Assessment Resources, Odessa, Florida. 45. McMurran, M., Duggan, C., Christopher, G. and Huband, N. (2007) The relationships between per sonality disorders and social problem solving in adults. Personality and Individual Differences, 42, 145 155. 46. Chang, E. C., Downey, C. A. and Salata, J. L. (2004) Social problem solving and positive psychological

PROBLEM-SOLVING THERAPY FOR PEOPLE WITH PERSONALITY DISORDERS

47.

48.

49.

50.

51.

52.

53.

functioning: looking at the positive side of problem solving, in Social Problem Solving: Theory, Research, and Training (eds E. C. Chang, T. J. D’Zurilla and L. J. Sanna), American Psychological Association, Washington, DC, pp. 99 116. Ryff, C. D. (1989) Happiness is everything, or is it? Explorations on the meaning of psychological well being. Journal of Personality and Social Psychology, 57, 1069 1081. McMurran, M., Huband, N. and Duggan, C. (2008) The role of social problem solving in improving social functioning in therapy for adults with personality dis order. Personality and Mental Health, 2, 1 6. McMurran, M., Egan, V., and Duggan, C. (2005) Stop & Think! Social problem solving therapy with personal ity disordered offenders, in Social Problem Solving and Offending: Evidence, Evaluation, and Evolution (eds M. McMurran and J. McGuire), John Wiley & Sons, Ltd, Chichester. D’Zurilla, T. J. and Nezu, A. M. (1999) Problem Solving Therapy: A Social Competence Approach to Clinical Intervention, 2nd edn, Springer Publishing Co., New York. McMurran, M., Egan, V., Richardson, C. and Ahmadi, S. (1999) Social problem solving in mentally disor dered offenders: a brief report. Criminal Behaviour and Mental Health, 9, 315 322. McMurran, M., Fyffe, S., McCarthy, L. et al. (2001) ‘Stop & Think!’ Social problem solving therapy with personality disordered offenders. Criminal Behaviour and Mental Health, 11, 273 285. McMurran, M. and Wilmington, R. (2007) A Delphi survey of the views of adult male patients with person ality disorders on psychoeducation and social problem

54.

55.

56.

57.

58.

59.

60.

61.

62.

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solving therapy. Criminal Behaviour and Mental Health, 17, 293 299. Banerjee, P., Duggan, C., Huband, N. and Watson, N. (2006) Brief psychoeducation for people with person ality disorder: a pilot study. Psychology and Psychother apy: Theory, Research and Practice, 79, 385 394. D’Silva, K. and Duggan, C. (2002) The development of a psycho educational programme for personality dis ordered patients. Psychiatric Bulletin, 26, 268 271. Tyrer, P., Nur, U., Crawford, M. et al. (2005) The social functioning questionnaire: a rapid and robust measure of perceived functioning. International Journal of Social Psychiatry, 51, 265 275. Spielberger, C. D. (1999) STAXI 2: State Trait Anger Expression Inventory 2, Psychological Assessment Resources, Inc., Odessa, Florida. Crawford, M. J. (2007) Editorial. Can social problem solving deficits among people with personailty disorder be reversed? British Journal of Psychiatry, 190, 203 204. Paris, J. (2007) Commentary. Problem solving therapy improves social functioning in people with personality disorder. Evidence Based Mental Health, 10, 121. National Institute for Mental Health in England (2003) Breaking the Cycle of Rejection: The Personality Dis order Capabilities Framework, Department of Health, Leeds. McMurran, M. (2008) Stop & Think! Problem Solving Therapy for People with Personality Difficulties, Unpublished manual, University of Nottingham, UK. Webb, D. and McMurran, M. (2007) Nursing staff attitudes towards patients with personality disorder. Personality and Mental Health, 1, 154 160.

35 Social support Traolach S. Brugha Department of Health Sciences, University of Leicester and New Academic Unit, Leicester General Hospital, Leicester, UK

35.1

INTRODUCTION

There is evidence that social support is important for physical and psychological health as well as for survival [1,2]. There have been few clinical trials to evaluate the effects on health of enhancing personal social support networks. The need for an experimental and evaluative approach to the topic needs to be emphasized. In this chapter I set out some of the recommended principles of psychosocial management to be considered by practitioners and others concerned specifically with the health problems of those who suffer from psychiatric disorder. Methods relevant to the topic of

35.2

social support networks will be referred to, including environmental, social, interpersonal and cognitive techniques. More detailed background information and guidance can be found elsewhere [3]. It is likely that deficiencies in social support networks are the result of a combination of environmental, interpersonal and intrapersonal causes, operating over long periods of time [4]. Intervention is therefore, perhaps, more likely to succeed where both the person and his or her social network can be considered the targets of intervention.

BROAD AND NARROW DEFINITIONS OF SUPPORT AND SUPPORT NETWORKS

Social support can be defined as ‘those aspects of social relationships thought to confer a beneficial effect on physical and psychological health’ [5]. To this must be added that it is not so much the ‘wide variety of material needs that reach individuals through the action of others’ that may be important, but it is rather the ‘specific “personal” provisions of social relationships and particularly their more sub-

jective components, for example confiding, intensity, and reciprocity of interaction and reassurance of worth’ that particularly merit study [5]. Thus the definition has a hypothetical status. Social support is a heterogeneous concept [6,7]; therefore specific definitions of support must be used in research and in clinical practice to facilitate measurement reliability [8]. Among the psychologically

Principles of Social Psychiatry, second edition Edited by Craig Morgan and Dinesh Bhugra
2010 John Wiley & Sons, Ltd.

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or psychiatrically unwell, measurement may well be contaminated by symptoms [9,10]. Social networks and social support appear to be influenced by a variety of environmental and constitutional factors including, perhaps, genetically inherited temperamental characteristics such as sociability [11], developmental factors such as extreme and early social disruption and deprivation [12], as well as by such environmental factors as ‘where you work’ [13] and who you end up with as your ‘life partner’, family and friends [14]. Deficits in social support are associated with an increased risk of developing symptoms that can be described as psychological dysfunction or ‘neurotic’ [15]. Personality factors [16,17] are also likely to play a significant part in the development of

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these disorders although the case for this was probably overstated in earlier studies [18]. Recovery from symptoms of anxiety and depression [19] and from psychiatric disorder such as clinical depression is significantly predicted by levels of social support assessed prospectively [20]. It is also quite possible that different aspects of support are important at different times and for different groups of people [19,21]. For example, onset factors may differ from factors that influence recovery [22]. While perceived deficits in social support are particularly associated with a negative course, it appears that other aspects of social relationships that are not necessarily perceived as deficient have a significant influence on future levels of clinically significant symptoms [21].

THE PRINCIPLES OF PSYCHOSOCIAL MANAGEMENT

Although the overall role of social factors in the aetiology of psychiatric disorder remains ‘unproven’, it is now clear that deficits in social support [20] and stressful life events [23] play a significant role in the aetiology and pathogenesis of clinical depression. Their aetiological importance does not seem to be significantly affected by whether or not a particular episode of depression includes ‘biological symptoms’ [20,24]. Perhaps the most important principle to bring home to patients and their relatives is that conditions like depression are probably influenced by a multiplicity of factors, both physical and psychosocial, which when added together may lead to illness. Therefore successful treatment will frequently depend on a combined physical (biological) and psychosocial approach [25]. In this regard, psychiatrists who follow a social orientation often make use of a combination of drug treatments, psychotherapy and socioenvironmental ‘manipulation’ in dealing with a case that might not otherwise yield to just one of these approaches [26]. Difficulties may arise in trying to apply both a social and a personal approach. A traditional counselling or psychotherapeutic approach may well require that the therapist and patient deal only with what the patient or client brings to the therapy setting, never meeting outside it. Similarly, a strict social approach might require that the therapist meet only with the patient/ client and their partner, family or (very rarely indeed)

their extensive social network, the therapist refusing to see the patient on their own. However, both the person and their social environment may require exploration and modification at the same time [25]. It could be argued that giving the patient too many different kinds of experiences and instructions might lead to confusion. For example, giving a patient a social skills training package at the same time as conducting an intervention at the level of that patient’s family may leave the patient confused as to where exactly the problem exists. On the other hand, there is a surprising lack of evidence that different treatment methods produce detectable differences in their effects in relation to depressive disorders [27,28]. This may well be due to common components of all psychotherapies, including the experience of a warm, positive and supportive personal relationship [29], clearly pertinent to the present topic. Thus there is no reason why helping a patient to improve their sources of support cannot be combined with a stress management package. Equally, in order to ‘win over’ the patient to the value of support from people who have previously been perceived to be disinterested, a cognitive strategy that challenges such negative beliefs and results in a positive perception of the value of such an attitude may also be effective. The treatment strategy must of course bewith the full consent of the patient, whose confidentiality must

SOCIAL SUPPORT

always be fully respected. In their network therapy, Speck and Ruevni [30] made it clear from the beginning of sessions that secrets, confidences and collusions

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were not allowed and that confidences would be broken routinely. Whichever policy is chosen, it must be clear what the policy is before sessions begin.

WHICH SOCIAL SUPPORT VARIABLES SHOULD BE CHANGED?

When beginning any intervention, it helps to be clear about the problems to be worked on and the objectives to be aimed for. The importance of perceived satisfaction with social support is common to most observational studies [1,19]. Thus people who complain of being unsupported are more likely to be psychologically unwell concurrently and in the short-term future. Satisfaction or dissatisfaction with support presupposes a recognition that one needs support. It may well be that seeking support is in itself a bad prognostic indicator, irrespective of whether or not it is obtained. Equally, it may be argued that not being aware of its possible value may ‘turn off’ the supporters. However, feeling that others are not helpful [31] may well go along with being socially isolated. Social integration not relying too heavily on just one or two individuals at a high level of intensity also appears to be important. Social ties are relatively easy to ask about and would seem to be a much more straightforward topic for a patient to focus on. However, as we have already seen, patients with small social networks are not only less likely to recover from depression but may also be unaware of their affiliative needs [21]. Patients who may perhaps have found close social ties unsatisfactory in the past may resent the suggestion that amends need to be made. The needs of men and of women may differ, and possibly on quite traditional, even ‘sexist’, lines [19,21]. For example, it may be more important to men to have ‘informal’ social contact with other men to whom they can relate easily, preferably outside the competitive setting of the workplace (or indeed the home). However, some men may find it difficult to seek and make use of such opportunities for informal contact. Men may suffer more than women when an intimate social relationship such as marriage breaks down [32]. Some women may be better off when retaining independence in their social lives, beyond a specific intimate relationship, thus allowing them the

freedom to maintain a number of supportive relationships with close relatives and good friends [19]. Just being in the presence of people can be as important as sharing specific confidences and other personal transactions. Certain individuals may not welcome a more personal interest being taken in them by others. We do not yet know enough to be able to say whether it is best to accept such people as they are or to encourage more active social participation. Growing recognition and knowledge of the autism spectrum is adding to our understanding [33] of the importance of such individual differences. It would be a mistake to think that such ‘silent company’ represents an indication that a minimal degree of social contact is not welcome. Indeed, there is a danger in getting concerned about silence, and in the training of social care workers it is important to point out that silence is not necessarily a sign of hostility or anger. Clearly, however, an introverted style is bound to work against greater social integration and adaptation. Such individuals may be harbouring increasingly irrational concerns and fears about their role in their social world. In order to help them to develop better support from others, such people probably should be encouraged to make particular efforts to show others their appreciation for the company they are offered. Practical or instrumental support may be important but so too is equity an equal exchange of favours [34] and so too is the symbolic importance of ‘what giving or receiving really tells me about what the other person feels about me’. One should distinguish between rescuing someone who is ‘helpless’ and in genuine hardship, on the one hand, and, on the other hand, doing something for someone who has the means to obtain what is being offered, and thus running the danger of fostering dependence. This can be an issue for carers, including those of us with professional responsibility for others. The needs of natural supporters or carers (traditionally female members of the family) are increasingly

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recognized in law if not often provided for [35,36]. Often the unmet needs of carers are material, e.g. for welfare assistance, for respite care (a break from a chronically ill or dependent patient) or for information and advice. However, contact with staff and emotional burden are also important targets of assistance [36]. Issues of power and control should be monitored; both for the patient and for the natural supporter, cooperation and freedom to choose what is wanted

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should not be overlooked. There are implications for growth through a psychotherapeutic relationship as much as for wider social issues of control in society, the workplace and the home [37]. Competitiveness and dominance will often be apparent in group settings, but the competitive person may be unaware of the danger of isolating himself or herself from the support of others. Issues of control may also be important in high expressed emotion (EE) families.

THE NEED FOR EXPERIMENTAL STUDIES

The somewhat unpredictable nature of any attempts to help people by enhancing or in some way modifying their support systems must be acknowledged. At least two arguments can be made for conducting intervention development and randomized intervention trials in which interpersonal functioning and social support (or factors thought to buffer the effects of uncontrollable adverse life events) are modified experimentally. First, there are the difficulties in population-level accurate measurement of exposure and outcome. Second, analysis of the effects of interventions in populations and communities could lead on more rapidly to improvements in public health following widespread implementation. Although there continues to be optimism about the future potential of observational research to help us better understand the interplay of environmental, genetic and developmental influences on complex mental disorders [38], as in the rest of medicine, there can be little doubt that more reliable and potentially useful findings are unlikely to follow unless research efforts are also directed with at least equal determination to the use of ethically acceptable experimental research designs. Both laboratory experiments and field trials have been described. Laboratory experimental studies on normal volunteers have shown reduced anxiety [39] and enhanced performance at a problem-solving task [40] following a series of supportive statements and reduced perceived stressfulness of a laboratory task [41] when completed in the presence of a friend. In the first reported study designed to use social support to improve mental health [42] a controlled experimental intervention study was conducted on

highly anxious primiparous mothers identified during a survey. The experimental treatment consisted of either lay or professional assistance, in the expectation that improvement in the treated mothers would be attributable to the therapeutic ingredient of social support. Social support was assessed by means of the Interview Schedule for Social Interaction (ISSI), a standardized interview. The intervention cases did show a significant improvement on state and trait anxiety, in contrast to the controls, but there was no evidence that this was due to a change in the reported levels of social support. In another pioneering prevention intervention study, only those subjects (middle aged and working class women in the community) who responded to ‘network stimulation’ seemed to benefit [43,44]. Social support interventions may not work when evaluated in clinical trials because pre-trial intervention development was inadequate. Evidence of this comes from examining unsuccessful programmes: a community intervention that failed to get elderly persons to improve their social support systems [45] and shortcomings in developing effective postnatal depression prevention interventions. To reduce risk factors for postnatal depression previously verified in a cohort survey of 507 women in their first pregnancy [46], an existing parental-support-enhancing manualized intervention programme was adapted for pregnant women at increased risk of postnatal depression. Then 209 pregnant women were randomized to receive the adapted intervention ‘preparing for parenthood’ (PFP) antenatally [47] delivered by mental health professionals in secondary care. With the

SOCIAL SUPPORT

intention to treat analyses, assignment to PFP had no significant impact on the score levels of the main risk factors, including a measure of social support networks [48], nor on depression at 3 months postnatally [47]. A similar larger trial in the same population provided by research therapists also failed to benefit mothers [49]. However, results [50] of a new larger cluster randomized controlled trial in mothers following childbirth does suggest that retraining health visitors in psychological approaches to postnatal symptoms of depression may enhance their ability to support women and prevent later postnatal depression [51]. A randomized controlled experiment conducted on 928 unemployed respondents in Michigan, who agreed to be randomized either to receive an information pack (control group) or to participate in eight 3-hour group training sessions over a two-week period, was designed to prevent the development of depression and to increase reemployment levels [52]. Analyses were based on ‘intention to treat’, and although many respondents declined to participate in

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the interventions there was a significant beneficial effect at one, four and 28 months post-intervention on depression. Explicit social support aspects of the training package were described as supportive behaviours by trainers, such as expressions of empathy, validation of participants concerns and feelings, encouragement of coping. Group exercises were also designed to ‘provide opportunities and reinforcement of participants’ supportive behaviours towards each other’ [52]. However, as the intervention contained many different components, this rendered less certain a final inference about the treatment specificity of a social support effect (the other ingredients being a job search skill-training component and an emphasis within the group on the anticipation of possible setbacks or barriers to job seeking, termed ‘inoculation against setbacks’). It is of public health significance that a similar programme has been implemented nationally in Finland to combat the catastrophic increase in unemployment in the early 1990s that followed the collapse of the previously dominant Soviet economy.

PERSONAL INTERVENTIONS: THE PSYCHOTHERAPEUTIC APPROACH

Psychotherapeutic approaches, i.e. interventions directed at the patient rather than at supporters, can be of several kinds. A cognitive psychotherapeutic approach may be designed to alter dysfunctional attitudes and beliefs about the value of close personal relationships with others. A social skills training package may be designed to overcome skills deficits that may be restricting a patient from developing or making effective use of more supportive relationships. Interpersonal psychotherapy (IPT) for depression, by providing the patient with a social relationship that is safe to learn within, may also lead to enhanced skills in obtaining additional sources of support from others. These three kinds of strategies have also been discussed in relation to helping the lonely and socially isolated [53]. The example of IPT merits closer consideration. A detailed training manual has been published [54]. By providing the patient with a social relationship that is safe to learn within, IPT may also lead to enhanced skills in obtaining additional sources of support from

others. IPT was developed by workers who had previously found that exit life events were associated with an increased risk of depression [55]. IPT is conducted in a one-to-one, psychotherapeutic setting, with timetabled sessions, in which exploratory and interpretative rather than prescriptive (as in cognitive and behavioural therapies) techniques are employed. Thus it is closely based on traditional psychotherapy, which emphasizes the importance of the client therapist relationship, or transference. The subject matter of IPT is of particular relevance. The initial assessment focuses on frequency and quality of social interaction, personal expectations of key social relationships, areas of dissatisfaction and finally on what the patient wants from each social relationship. Many of these variables are covered in standard social network inventories [48]. Grief and loss, disputes, changes in roles and deficits such as loneliness are also examined. The IPT process has been shown to overlap very little in its content with cognitive psychotherapeutic methods [56], but there do not appear to be significant

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differences in their relative effects on outcome [27]. In a report on the efficacy of IPT as a maintenance treatment for recurrent depression, the process of therapy was studied also through ratings of audio taped sessions with the guidance of a Therapy Rating Scale, which rated, for example, the therapist’s exploration of the patient’s social network with respect to a particular problem experienced by the patient (such as depression) [57]. The study showed that when the patient and therapist were successful in maintaining a high level of interpersonal focus, monthly maintenance sessions of IPT had a substantial prophylactic benefit. Prior analyses from the National Institute of Mental Health Treatment of Depression Collaborative Research Program also indicated that patients’ expectancies of treatment effectiveness and the quality of the therapeutic relationship predicted clinical improvement. These data were reanalysed to examine the hypothesis that the link between treatment expectancies and outcome would be mediated by patients’ contribution to the alliance [58]. Among 151 patients who completed treatment, this hypothesis was supported, suggesting that patients who expect treatment to be effective tend to engage more constructively in sessions, which helps bring about symptom reduction [58]. A 16-week bilingual controlled clinical trial compared a group receiving interpersonal psychotherapy for antepartum depression to a parenting education control programme [59,60]. Fifty outpatient antepartum women who met DSM-IV criteria for major depressive disorder were randomly assigned to interpersonal psychotherapy or a didactic parenting education programme. Recovery criteria were met in 60% of the women treated with interpersonal psychotherapy, according to a global clinical impression (CGI) score of < or ¼ 2, and in 15.4% of control women. Interpersonal psychotherapy may also protect against the risk of recurrence due to stressful life events [61]. A study compared the role of life events in predicting time to index episode onset under conditions of no or variable treatment versus the role of life events in predicting the time to recurrence during maintenance interpersonal psychotherapy. Eightythree women with recurrent major depression participated in acute IPT treatment followed by 2 years of maintenance IPT. Although severe life events were

significantly associated with time-to-index episode onset, there was little evidence of an association between events experienced during maintenance treatment and the time to recurrence. These results provide evidence that IPT may decrease the potency of life events in provoking recurrence. The content of cognitive behavioural psychotherapy (CBT) for depression does focus frequently on cognitions about the self, in relation to other key persons. Classic examples of faulty cognitions are rating oneself as less able than others in the absence of confirmatory evidence, and, for example, thinking that ‘they wouldn’t be interested in me or they wouldn’t like me anyway’. In an open process study of 17 depressed and anxious patients undergoing CBT that was designed to disaggregate the interpersonal and technical effects of cognitive therapy (countering negative cognitions), Persons and Burns [62] found that both changes in automatic thoughts and in the patent’s relationship with his therapist made significant contributions to mood changes. Burns and Nolen-Hoeksema [63] found that therapeutic empathy has a moderate-to-large causal effect on recovery from depression in a group of 185 patients treated with CBT. Patients of therapists who were the warmest and most empathic improved significantly more than the patients of therapists with the lowest empathy ratings, when controlling for initial depression severity, homework compliance and other factors. An exposition of the possible use of cognitive behavioural therapy (CBT) in addressing problems in social support has been provided by Parry [31]. In addition to identifying and challenging cognitions that may lead to support from others being devalued, unused or abused, this form of CBT focuses specifically on teaching new skills in eliciting and making use of support from others. There is also growing evidence that assigning a oneto-one depression care manager significantly contributes to effective primary care treatment of depression. For example, in a notable randomized controlled trial of collaborative care management of late-life depression intervention patients had access for up to 12 months to a depression care manager who was supervised by a psychiatrist and a primary care expert and who offered education, care management and support of antidepressant management by the patient’s primary

SOCIAL SUPPORT

care physician or a brief psychotherapy for depression Problem-Solving Treatment in Primary Care [64]. A total of 1801 patients aged 60 years or older with major depression (17%), dysthymic disorder (30%), or both (53%), were studied. At 12 months, 45% of interven-

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tion patients had a 50% or greater reduction in depressive symptoms from baseline compared with 19% of usual care participants. Intervention patients also experienced greater rates of depression treatment and more satisfaction with depression care.

ENVIRONMENTAL INTERVENTIONS

The implication of the term ‘environmental intervention’ is that intervention should be targeted on others (the partner, family, wider social network, the community). In marital therapy, a range of interpretive and prescriptive methods have been described and evaluated [65 67]. The frequency and quality of interaction and attention are central issues in counselling a couple with sexual dysfunction. In family therapy, issues of control and the freedom to engage in ageappropriate social relationships outside the family can also be key matters for discussion, acceptance and for change within the maturing family. Social network intervention has been described [30,68]. Erickson’s paper [68] is a useful source of additional reference material, helpfully discussed. The paper by Speck and Rueveni [30] is essentially a detailed description of the problems and the therapeutic sessions that took place with a ‘schizophrenic family’. A particularly positive aspect of this approach may lie in the more positive expectations and understanding of the network towards the disabled individual: a truly supportive community. Others have also discussed therapy beyond the dyad or family [53,69 71]. Pattison et al. [69] argued that family therapy should extend beyond the nuclear family because the extended psychosocial kinship

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system was a normal source of help and support to families facing stress and challenge. He then provided a more elaborated formulation of social system therapy taking into account the structure of the psychosocial kinship system, with different kinds of intervention depending on the level or type of system at which intervention seemed to be needed. The aim of any therapy was to ‘achieve communication and congruence of goals amongst all the people with whom the patient may have contact’. Thus the patient would be better able to utilize the resources available in the system. Halevy-Martini et al. [72] emphasized that an important final stage in network therapy is the shifting of the locus of control from the therapeutic team to the network itself. Group psychotherapy [73] represents an interesting bridge between personal and environmental approaches. Closed groups, in which interaction outside therapy sessions is strongly disapproved of, clearly belong in the former category and yet are partly based on the premise that insight and learning comes best through an open sharing with others and the support, understanding and listening that they provide in the group setting. On the other hand, in open groups there is little or no reason to discourage the development of social relationships that may have begun within the group, provided confidentiality is respected.

COMMUNITY SUPPORT SYSTEMS

The use of the term ‘community’ may be misleading because the objective of such ‘support systems’, or services, is to identify and solve medical, psychological and social problems, which are then managed at an individual or family level. In contrast to this, intervention with problem communities at a community or macro-social level (e.g. through welfare

legislation based on developments in social policy) is discussed briefly in the next section. The PCMH [74] in the United Stated promoted a policy to foster natural support systems in the wider community. The topic takes us into a much more general aspect of community and social psychiatry, discussed elsewhere [5]. This topic is also covered in

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other chapters in this book (in particular see Chapters 29 and 31) and will be referred to only briefly here. The term ‘system’ is intended to denote the principle that the provision of physical, social and psychological needs to individuals who are ill or disabled, and therefore at risk of being unable to fend for themselves, is well organized, managed and coordinated. In order that such services or systems function effectively the specific medical, psychological, social and welfare (material) needs of patients and their carers in the community must be assessed [76 82] and any identified needs met. In the presence of clinically significant mental illness, problems in functioning that could contribute to social isolation, such as an inability to initiate, form and maintain social interaction, lack of use of public and recreational amenities, and observed slowness and underactivity, should be identified. Such disabilities may be remedied and a variety of interventions may be helpful. Such interventions include social stimulation, training in social interaction skills, guided practice in the use of public and recreational amenities, befriending schemes [83] or a sheltered environment with appropriate social contact (particularly where training or prompting to exercise skills has failed). Support and advice for relatives and carers is also an important additional ingredient of such a support system. The provision of services should be based on the promotion and maintenance of independence (and the discouragement of dependence) in service users, with the additional advantage that attendance at a service

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can bring the user into contact with a wider range of potential companionship and mutual support. According to Holloway (in Reference [84]), users of day care services mentioned social contact as the most important and valued aspect of such services for them. Recognizing the social dimension from the point of view of individual service users is important but difficult. Staff may identify social relationships that do not exist (in the view of the patient). Therefore patients’ own perceptions and views should be sought. This is a particularly important issue where the transfer of one or a group of patients to a different service facility is being decided upon. More work is needed on the effectiveness of selfhelp groups, particularly in view of their widespread use and popularity [85]. A number of descriptions of informal and voluntary support systems for the chronically mentally ill living in the community have been described by Mitchell and Birley [86], Cutler and Beigel [87] and Shannon and Morrison [88]. Support for the supporters (or carers) will include advice, education about the illness and practical assistance with material and welfare problems, which may greatly relieve the burden on a carer and thus indirectly benefit the patient. The interventions that have been developed for the families of high EE patients with schizophrenia incorporate a number of these methods and have been shown to be of consistent benefit to the patients of these families in clinical trials [89] (see also Chapters 9, 31 and 32).

COMMUNITY-BASED INTERVENTIONS

An attempt to appraise the effectiveness of case-level (client-centred) and community-level social care has been provided in a review of the social work literature by Matilda Goldberg [90]. While it was possible to identify an example of a case-level evaluation that showed measurable improvements in outcome for identifiable individuals (community survival), it proved more difficult to find such evidence in community-oriented practice, although the latter may have the advantage of influencing earlier referral of individuals at risk (presumably an analogue of population screening). A guide to the application of net-

work techniques for use by social workers has been produced by Seed [91]. Rook [53] discussed ways in which the community environment and the structure of the working environment could be modified so as to enhance and facilitate more social interaction for the lonely. Similarly, ‘unintentional network building’ can follow from projects that give people who are isolated in the community a task that can only be carried out by cooperation, sharing and thus meeting in the form of new social groups, as in groups with charitable and voluntary tasks.

SOCIAL SUPPORT

The role of the ‘community worker’ acting in a specific neighbourhood (or a cluster of physically related residential units) is discussed by Parry [92], who also contrasts such formal interventions with the potential contribution to community functioning of ‘natural helpers’ such as bartenders and hairdressers. Milne and Mullin [93] reported on a successful structured training programme in which hairdressers were trained in the provision of social support to their customers. The programme was evaluated experimentally and its success was indicated by enhanced experimental group customers’ ratings of the perceived helpfulness of their hairdressers. Mother-tomother befriender schemes in Leicester (Homestart) and in South London (Newpin) were described by Van der Eyken and Pound et al. (in Reference [94]) and by Cox et al. [95]. Aspects of this approach have been

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implemented in the present decade in some government-funded Sure Start programmes [96]. Heller [71] argued that certain social contexts and community structures may enhance support, giving as an example providing the unemployed paid work, which may be viewed as far more ‘supportive’ than providing a ‘support group’. Enhancing individual skills and competencies may not be of value because cultural norms and adverse social conditions serve to maintain undesirable behaviour. This particularly seems to apply to those who, because of their gender, ethnic status, age or low socioeconomic group status, are prevented from using what would otherwise be more effective interpersonal strategies. This then leads to the need for research and in due course social policies at the macro-community level.

THE CLINICAL APPROACH

Clinical and psychosocial assessment can and should be conducted together. Within psychiatry, our knowledge of the biological, developmental and psychosocial basis of psychopathological disorders makes it easier for us to adapt our style of social assessment to individuals who, for any of these underlying reasons, may respond in extremely unusual ways to enquiries about their social support systems. For example, symptoms such as pathological guilt, subjective retardation, irritability, simple ideas of self-reference and magical thinking, which may be elements of the clinical picture, may significantly affect the quality and quantity of social interaction between a patient and his or her social network, as well as significantly distorting the record of these events that the patient can provide. Equally, this principle may also extend to other members of the network who are distressed or have problems in psychological functioning. Although such clinical problems may distort the quality of information obtainable concerning a patient’s support system, this in no way reduces the importance of pursuing such information with care and attempting to act on it in a positive way. A second important issue that must be considered, in relation to possible intervention strategies, is the extent to which a patient’s vulnerability to stress or the

nature of his or her psychopathology may contraindicate any significant attempts to increase social stimulation (with its inevitable demands) from others. Some examples of this might include patients suffering from acute exacerbations of symptoms with a persecutory content or those with fundamental social handicaps that greatly limit their capacity to interact with others, as, for example, occurs in cases of Asperger syndrome [97]. Outlined here is a procedure for eliciting the psychosocial variables that indicate lack of social support during the clinical assessment of each patient. It is based on research interviewing experience with patients and with symptom-free subjects together with experience gained in clinical practice. A description of the social support system can begin by adding to information already gathered about the family focusing on the location of members, their frequency of contact and the kinds of transactions that occur, and then moving on to a consideration of the strength of social relationships in terms of ‘felt attachment’, the ability and tendency to confide and the degree to which these qualities appear to be reciprocated. Where the patient is married or has a close sexual relationship, particular attention is given to the social relationship with this partner under these headings. (It may also be worthwhile to

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interview such a confidant and establish whether the illness has had a negative impact on their own sources of support.) The enquiry then moves out towards the wider social network of close friends, neighbours and work associates (particularly if they are also regarded as ‘friends’, ‘acquaintances’, ‘mates’, etc.). Again, it seems useful to enquire about recent social interaction, its nature and context, and in particular whether there have been planned social events involving these others, which are not a necessary part of work, or routine events in the community (e.g. church attendance). Where, as is often the case, a major significant life event has occurred recently, the transmission of information between other members of the network concerning such events can also be enquired about. There are two elements to the enquiry about social support: the first concerns itself with action taken by the patient (help- and support-eliciting, where this seems to be appropriate) and the second concerns the behaviour and action of others. With reference to material aid (tangible support), it can be particularly revealing to enquire about the degree to which transactions of this kind have actually occurred in both directions (sometimes termed ‘equity’ in a dyadic social relationship). In trying to achieve a judgement about the quality of emotional support, it is important to ask questions that reveal something of the capacity of those involved to identify sources of distress, to tolerate unpleasant news and the feelings that go with it, and to empathize with the person who is distressed. A variety of both open and closed questions should be employed, the latter being used to focus, on the one hand, on how easy or difficult it is for the patient to listen to someone else who has something distressing to discuss and, on the other hand, to ask whether one felt that the other person was really listening and was interested in something important that one wished to discuss. Examples of interaction should always be asked for. When the questions focus on what actually happened during a recent crisis, they may reveal a great deal about other potentially important elements such as coping style, personality and the degree to which elements of an individual’s psychopathology directly impinge on social interaction. The belief that one is not being listened to or that one’s ideas and feelings

are not being acknowledged may also be associated with conflict. It may be easier to identify negative interaction by approaching it with questions about the ‘listening qualities’ of others, in addition to questions about the extent to which others try to exert social control over oneself. Not surprisingly, conflict and a tendency for competitiveness may go hand in hand. The nature of the enquiry into current social relationships detailed here differs from traditional social enquiries and ‘clinical histories’ in one important and perhaps obvious way: the absence of a historical and biographical perspective. This emphasis on the ‘here and now’ is not unintentional. The first justification for it is that most of the available evidence concerning associations between social relationship deficits and psychiatric disorder are based on this kind of ‘present state’ enquiry (although contextual information used in rating the threat of life events would appear to be an exception, perhaps). Second, this emphasis on the ‘present state’ of social relationships frees the patient and therapist to look at new ways of increasing the number and quality of available supportive relationships now and in the near future. In contrast, an excessive emphasis on the historical and biographical background to relationships, which may inevitably bring to light painful negative interpersonal experiences in the past, may serve to emphasize and reinforce powerful arguments and beliefs in the patient that go against the possibility of change.

35.10.1

Clarifying targets of intervention

Based on this kind of information about the patient’s own current social network and supports and clinical condition, it should be possible to produce a ‘social formulation’ that summarizes their difficulties and possible routes for action. A clearly listed set of manageable objectives with a realistic time frame in which to review their outcome should be recorded at this stage.

35.10.2

Developing and implementing a plan of intervention

A set of aims both for the patient’s social functioning and for those in the wider social network should be

SOCIAL SUPPORT

recorded. Common to all such plans is the aim of bringing about an improvement in the patient’s own perception of the quality of transactions with others, particularly with those with whom it is appropriate to share information about feelings, worries and hopes. In addition, not only does the quality of confiding social relationships appear to matter but an extension of the range of different kinds of social relationships and their functions (sometimes referred to as multiplex relationships) should be aimed for, as these also appear to be indicative of a better level of functioning. Specific methods should be set out that are designed to try to achieve these aims (bearing in mind the need to consider both the short-term and long-term effects on the course of the psychiatric disturbance). The methods used will be familiar to those working in the field of rehabilitation: training and skill enhancement, monitoring of goals and making use of feedback from others. For those who do not or cannot respond to these learning strategies, sheltered social amenities and the use of visual and verbal reminders and cues by staff or relatives should be provided, possibly on a long-term basis. The clinician (or social worker, psychologist, occupational therapist, nurse) must be open to the potential value of changing both the patient’s social perceptions and behaviour, and also to the value of modifying the behaviour and perceptions of others in the network. Examples of the kind of action to be taken can range from a relatively brief set of guidelines to the patient on how to make better use of potential social resources in their existing network now to a more detailed series of counselling sessions, incorporating both insight building and specific directions on social behaviour and social interaction with others. Such a series of counselling sessions will also provide the important opportunity both for monitoring the results of directive advice and the possibility of modifying it, in order to increase the patient’s effectiveness in transactions with others. There may, of course, be some parallels between this approach and that of social skills and problem-solving training [98], although the important distinction between them lies in the way the approach is tailored specifically to the particular social relationships that the patient is developing with others in their network. There is evidence that patients with depres-

471

sion are to a small extent less socially skilled than normal controls but, interestingly, normals tend to overestimate their own personal skills whereas depressives tend to provide a more accurate account of themselves in this respect [99]. Therefore it may be unwise to emphasize the question of social interaction skills, except perhaps to reassure depressed patients that they have a tendency to be overpessimistic about their difficulties in this respect. It may be necessary also to intervene directly through others by working with a couple, the family or a primary care or occupational health-based practitioner such as a nurse. Social isolation due to the stigma of being labelled a psychiatric patient can be overcome by making direct links with employers, key figures in personnel departments or employee organizations. Where these strategies are effective, they may lead others in the social network to change their ideas (or perhaps more specifically their own expectations) about the patient. The adoption of a more realistic and also a less negative set of attitudes may well be therapeutic, as shown in the experimental work of Leff and Vaughan [100] on expressed emotion.

35.10.3

Evaluating and maintaining outcomes

Information acquired initially about the social support system should be rechecked regularly, possibly as often as each meeting with the patient. This provides important information about achieving targets and also serves to remind the patient about what they need to be concentrating their own efforts on. Progress achieved will also be a source of encouragement. In studies by Parker and Barnett [42,101] an attempt to improve social support did lead to significant symptom reduction. One should not give up just because the patient does not seem to be reaching the psychosocial targets that have been set at the start of therapy. A positive outcome, in the absence of consistent evidence of an alteration in the supposed aetiological variable, may also be true of cognitively based psychotherapies [27]. Perhaps an intense, supportive relationship with the therapist is, for many patients, a sufficient remedy in itself, regardless of what technique has been used [102].

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Clinical outcome must also be monitored. It may be that any benefits of support enhancement are long term and for this and other reasons it is important to

35.11

establish some system, perhaps through collaboration with a primary health care practitioner, for monitoring long-term clinical outcome.

CONCLUSION

The nature of support and the factors that appear to influence it make up a complex system that involves environmental as well as personal components. A distinction is made between the value of emotional support provided by personal social relationships and the practical support that long-term and socially disadvantaged psychiatric patients need from formal ‘social support systems’, which are typically community based in the present era. The main aim of this chapter has been to discuss clinical and psychosocial management, which is implicitin thework and functioningofmany clinicaland social agencies of human care. Thus it aims to provide some background to the work of such services. The need for evaluation of support enhancing interventions has been emphasized throughout.

REFERENCES 1. Brugha, T. S. (1991) Support and personal relation ships, in Community Psychiatry: The Principles (eds D. Bennett and H. Freeman), Churchill Livingston, London, pp. 115 161. 2. House, J. S., Landis, K. R. and Umberson, D. (1988) Social relationship and health. Science, 241, 540 545. 3. Brugha, T. S. (1995) Social support and psychiatric disorder: recommendations for clinical practice and research, in Social Support and Psychiatric Disorder: Research Findings and Guidelines for Clinical Prac tice, 1st edn (ed. T. S. Brugha), Cambridge University Press, Cambridge, pp. 295 334. 4. Brugha, T. (ed.) (1995) Social Support and Psychiatric Disorder: Research Findings and Guidelines for Clini cal Practice, Cambridge University Press, Cambridge. 5. Brugha, T. (1988) Social support. Current Opinion in Psychiatry, 1, 206 211. 6. Cobb, S. (1976) Social support as a moderator of life stress. Psychosomatic Medicine, 38, 300 314. 7. Cassel, J. (1976) The contribution of the social envir onment to host resistance. American Journal of Epidemiology, 104, 107 123.

8. Brugha, T., Sturt, E., MacCarthy, B. et al. (1987) The interview measure of social relationships: the descrip tion and evaluation of a survey instrument for assessing personal social resources. Social Psychiatry, 22, 123 128. 9. Brugha, T. (1988) Social psychiatry, in The Instru ments of Psychiatric Research (ed. C. Thompson), John Wiley & Sons, Ltd, Chichester. 10. Brugha, T. S. (1995) Social support and psychiatric disorder: overview of evidence, in Social Support and Psychiatric Disorder: Research Findings and Guidelines for Clinical Practice, 1st edn (ed. T. S. Brugha), Cambridge University Press, Cambridge, pp. 1 40. 11. Monroe, S. M. and Steiner, S. C. (1986) Social support and psychopathology: interrelations with pre existing disorder, stress and personality. Journal of Abnormal Psychology, 95, 29 39. 12. Rutter, M. and Quinton, D. (1984) Long term follow up of women institutionalised in childhood: factors promoting good functioning in adult life. British Journal of Developmental Psychology, 2, 191 204. 13. Repetti, R. (1987) Individual and common compo nents of the social environment at work and psycho logical well being. Journal of Personality and Social Psychology, 52, 710 720. 14. Cutrona, C. E. (1989) Ratings of social support by adolescents and adult informants: degree of correspon dence and prediction of depressive symptoms. Journal of Personality and Social Psychology, 57, 723 730. 15. Henderson, A. S., Byrne, D. G. and Duncan Jones, P. (1981) Neurosis and the Social Environment, Aca demic Press, Sydney. 16. Brewin, C. R., MacCarthy, B. and Furnham, A. (1989) Social support in the face of adversity: the role of cognitive appraisal. Journal of Research in Per sonality, 23, 354 372. 17. Brewin, C. R. (1995) Cognitive aspects of social support processes, in Social Support and Psychiatric Disorder: Research Findings and Guidelines for Clin ical Practice, 1st edn (ed. T. S. Brugha), Cambridge University Press, Cambridge, pp. 96 116.

SOCIAL SUPPORT

18. Duncan Jones, P., Fergusson, D. M., Ormel, J. and Horwood, L. J. (1990) A model of stability and change in minor psychiatric symptoms: results from three longitudinal studies. Psychological Medicine, Mono graph Supplement, 18, 1 28. 19. Brugha, T. S., Weich, S., Singleton, N. et al. (2005) Primary group size, social support, gender and future mental health status in a prospective study of people living in private households throughout Great Britain. Psychological Medicine, 162 (4), 774 780. 20. Brugha, T., Bebbington, P., MacCarthy, B. et al. (1987) Social networks, social support and the type of depres sive illness. Acta Psychiatrica Scandinavica, 76, 664 673. 21. Brugha, T. S., Bebbington, P. E., MacCarthy, B. et al. (1990) Gender, social support and recovery from depressive disorders: a prospective clinical study. Psychological Medicine, 20 (1), 147 156. 22. Goldberg, D., Bridges, K., Cook, D. et al. (1990) The influence of social factors on common mental disor ders: destabilisation and restitution. British Journal of Psychology, 156, 704 713. 23. Kendler, K. S., Hettema, J. M., Butera, F. et al. (2003) Life event dimensions of loss, humiliation, entrap ment, and danger in the prediction of onsets of major depression and generalized anxiety. Archives of Gen eral Psychiatry, 60 (8), 789 796. 24. Bebbington, P. E., Brugha, T., MacCarthy, B. et al. (1988) The Camberwell collaborative depression study. I. Depressed probands: adversity and the form of depression. British Journal of Psychiatry, 152, 754 765. 25. Brugha, T. (1991) Human ethology. Current Opinion in Psychiatry, 4, 313 319. 26. Clare, A. W. (1980) Psychiatry in Dissent, 2nd edn, Tavistock, London. 27. Beckham, E. D. (1990) Psychotherapy of depression research at a crossroads: directions for the 1990s. Clinical Psychology Review, 10, 207 228. 28. Stiles, W. B., Barkham, M., Mellor Clark, J. and Connell, J. (2008) Routine psychological treatment and the Dodo verdict: a rejoinder to Clark et al. (2007). Psychological Medicine, 38 (6), 905 910. 29. Stiles, W. B., Shapiro, D. A. and Elliott, R. (1986) Are all psychotherapies equivalent? American Psycholo gist, 41 (2), 165 180. 30. Speck, R. V. and Ruevni, U. (1969) Network therapy a developing concept. Family Process, 8, 182 191.

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31. Parry, G. (1995) Social support processes and cogni tive therapy, in Social Support and Psychiatric Dis order: Research Findings and Guidelines for Clinical Practice, 1st edn (ed. T. S. Brugha), Cambridge Uni versity Press, Cambridge, pp. 279 294. 32. Seedat, S., Scott, K. M., Angermeyer, M. et al. (2009) Cross national associations between gender and men tal disorders in the World Health Organization World Mental Health Surveys. Archives of General Psychiatry, 66, 785 795. 33. Wing, L. (1997) The autistic spectrum. Lancet, 350 (9093), 1761 1766. 34. Schafer, R. and Keith, P. M. (1980) Equity and depres sion among married couples. Social Psychology Quar terly, 43, 430 435. 35. Fadden, G., Bebbington, P., and Kuipers, L. (1987) Caring and its burdens: a study of the spouses of depressed patients. British Journal of Psychology, 151, 660 667. 36. MacCarthy, B., LeSage, A., Brewin, C. R. et al. (1989) Needs for care among the relatives of long term users of day care: a report from the Camberwell high contact survey. Psychological Medicine, 19, 725 736. 37. Gilbert, P. (1989) Human Nature and Suffering, Lawrence Erlbaum, London. 38. Rutter, M. (2002) The interplay of nature, nurture, and developmental influences: the challenge ahead for mental health. Archives of General Psychiatry, 59 (11), 996 1000. 39. Bowers, C. A. and Gesten, E. L. (1986) Social support as a buffer of anxiety: an experimental analogue. American Journal of Community Psychology, 14, 447 451. 40. Sarason, I. G. and Sarason, B. R. (1986) Experimen tally provided social support. Journal of Personality and Social Psychology, 50, 1222 1225. 41. Lakey, B. and Heller, K. (1988) Social support from a friend, preceived support, and social problem solving. American Journal of Community Psychology, 16, 811 824. 42. Parker, G. and Barnett, B. (1987) A test of the social support hypothesis. British Journal of Psychiatry, 150, 72 77. 43. Benum, K., Anstorp, T., Dalgard, O. S. and Sorenson, T. (1987) Social network stimulation. Health promo tion in a high risk group of middle aged women. Acta Psychiatrica Scandinavica, Supplementum, 76 (337), 1 41.

474

SOCIAL INTERVENTIONS

44. Dalgard, O. S., Anstorp, T., Benum, K. and Sorensen, T. (1995) Social network stimulation. Health promo tion in a high risk group of middle aged women, in Social Support and Psychiatric Disorder. Research Findings and Guidelines for Clinical Practice (ed. T. S. Brugha), University Press, Cambridge, pp. 197 212. 45. Heller, K., Thompson, M., Trueba, P. E. et al. (1991) Peer support telephone dyads for elderly women: Was this the wrong intervention? American Journal of Community Psychology, 19, 1 74. 46. Brugha, T. S., Sharp, H. M., Cooper, S. A. et al. (1998) The Leicester 500 Project. Social support and the development of postnatal depressive symptoms, a prospective cohort survey. Psychological Medicine, 28 (1), 63 79. 47. Brugha, T. S., Wheatley, S., Taub, N. A. et al. (2000) Pragmatic randomised trial of antenatal intervention to prevent postnatal depression by reducing psychosocial risk factors. Psychological Medicine, 30, 1273 1281. 48. Brugha, T. S., Sturt, E., MacCarthy, B. et al. (1987) The Interview Measure of Social Relationships: the description and evaluation of a survey instrument for assessing personal social resources. Social Psychiatry, 22 (2), 123 128. 49. Morrell, J., Spilby, H., Stewart, P. et al. (2000) Costs and benefits of community postnatal support workers: a randomised controlled trial. Health Technology Assessment, 4 (6), 1 88. 50. Morrell, C. J., Slade, P., Warner, R. et al. (2009) Clinical effectiveness of health visitor training in psychological interventions for postnatal women a pragmatic cluster randomised trial in primary care. British Medical Journal, 338, 30 45. 51. Morrell, C. J., Warner, R., Slade, P. et al. (2009) Psychological interventions for postnatal depression randomised controlled trial and economic evaluation (PONDER). Health Technology Assessment, 30 (30), 1 176. 52. Price, R. H., van Ryn, M. and Vinokur, A. D. (1992) Impact of a preventive job search intervention on the likelihood of depression among the unemployed. Jour nal of Health and Social Behaviour, 33, 158 167. 53. Rook, K. (1984) Promoting social bonding: strategies for helping the lonely and socially isolated. American Psychologist, 39, 1389 1407. 54. Klerman, G. L., Weissman, M. M., Rounsaville, B. J. and Chevron, E. S. (1984) Interpersonal Psychother apy of Depression, Basic Books, New York.

55. Paykel, E. S., Myers, J. K., Dienelt, M. N. et al. (1969) Life events and depression. A controlled study. Archives of General Psychiatry, 21 (6), 753 760. 56. Elkin, I., Shea, T., Watkins, J. T. et al. (1989) National Institute of Mental Health Treatment of Depression Collaborative Research Program. General effective ness of treatments. Archives of General Psychiatry, 46, 971 982. 57. Frank, E., Kupfer, D. J., Wagner, E. F. et al. (1991) Efficacy of interpersonal psychotherapy as a mainte nance treatment of recurrent depression. Contributing factors. Archives of General Psychiatry, 48, 1053 1059. 58. Meyer, B., Pilkonis, P. A., Krupnick, J. L. et al. (2002) Treatment expectancies, patient alliance, and out come: further analyses from the National Institute of Mental Health Treatment of Depression Collaborative Research Program. Journal of Consulting and Clinical Psychology, 70 (4), 1051 1055. 59. Koh, K. B., Kim, C. H. and Park, J. K. (2002) Pre dominance of anger in depressive disorders compared with anxiety disorders and somatoform disorders. Journal of Clinical Psychiatry, 63 (6), 486 492. 60. Spinelli, M. G. and Endicott, J. (2003) Controlled clinical trial of interpersonal psychotherapy versus education program for depressed pregnant women. The American Journal of Psychiatry, 160 (3), 555 562. 61. Harkness, K. L., Frank, E., Anderson, B. et al. (2002) Does interpersonal psychotherapy protect women from depression in the face of stressful life events? Journal of Consulting and Clinical Psychology, 70 (4), 908 915. 62. Persons, J. and Burns, D. (1985) Mechanisms of action of cognitive therapy: the relative contributions of technical and interpersonal interventions. Cognitive Therapy and Research, 9, 539 5518. 63. Burns, D. and Nolen Hoeksema, S. (1992) Therapeutic empathy and recovery from depression in cognitive behavioral therapy: a structural equation model. Journal of Consulting and Clinical Psychology, 60, 441 449. 64. Unutzer, J., Katon, W., Callahan, C. M. et al. (2002) Collaborative care management of late life depression in the primary care setting: a randomized controlled trial. Journal of the American Medical Association, 288 (22), 2836 2845. 65. Crowe, M. (1976) Behavioural treatments in psychia try, in Recent Advances in Clinical Psychiatry (ed. K. Granville Grossman), Churchill Livingston, London. 66. Hahlweg, K., Revenstorf, D. and Schindler, L. (1984) The effects of behavioural marital therapy on couples

SOCIAL SUPPORT

67.

68. 69.

70.

71. 72.

73. 74.

75.

76.

77.

78.

79.

communication and problem solving skills. Journal of Consulting and Clinical Psychology, 52, 553 566. Leff, J., Vearnals, S., Brewin, C. R. et al. (2000) The London depression intervention trial. Randomised controlled trial of antidepressants v. couple therapy in the treatment and maintenance of people with depression living with a partner: clinical outcome and costs. British Journal of Psychiatry, 177, 95 100. Erickson, G. (1984) A framework and themes for social network intervention. Family Process, 23, 187 198. Pattison, E. M., De Francisco, D., Wood, P. et al. (1975) A psychosocial kinship model for family ther apy. American Journal of Psychiatry, 132, 1246 1251. Pattison, E. M. (1977) A theoretical empirical base for social system therapy, in Current Perspectives in Cultural Psychiatry (eds E. F. Feulks, R. M. Wintrob, J. Westenmayer and A. R. Favazza), Spectrum Pub lications, New York, pp. 217 253. Heller, K. (1990) Social and community intervention. Annual Review of Psychology, 41, 141 168. Halevy Martini, J., Hemley Van Der Velden, E. M., Ruhf, L. and Schoenfeld, P. (1984) Process and strat egy in network therapy. Family Process, 23, 521 533. Yalom, I. D. (1975) The Theory and Practice of Group Psychotherapy, Basic Books, New York. Presidents Commission on Mental Health. Task Panel on Community Support Systems (1978) Report of the Task Panel on Community Support Systems, in Task Panel Reports; submitted to the President’s Commis sion on Mental Health, US Government Printing Office, Washington, DC. Morris, I. and Bennett, D. (1983) Support and reha bilitation, in Theory and Practice of Rehabilitation (eds F. N. Watts and D. H. Bennett), John Wiley & Sons, Ltd, Chichester. Brewin, C., Wing, J., Mangen, S. et al. (1987) Prin ciples and practice of measuring needs in the long term mentally ill. Psychological Medicine, 17, 971 981. Brewin, C., Wing, J., Mangen, S. et al. (1987) Needs for care among the long term mentally ill: a report from the Camberwell high contact survey. Psycholo gical Medicine, 18, 457 468. Brewin, C. R., Wing, J. K., Mangen, S. P. et al. (1988) Needs for care among the long term mentally ill: a report from the Camberwell High Contact Survey. Psychological Medicine, 18, 457 468. Brugha, T., Wing, J., Brewin, C. et al. (1988) The problems of people in long term psychiatric day care:

80.

81.

82.

83.

84.

85.

86.

87.

88.

89.

90.

91. 92.

93.

475

an introduction to the Camberwell high contact survey. Psychological Medicine, 18, 443 456. MacCarthy, B., Wing, J. K., Lesage, A. et al. (1989) Needs for care among the relatives of long term users of day care. Psychological Medicine, 19, 725 736. Wing, J. K. (1990) Meeting the needs of people with psychiatric disorders. Social Psychiatry and Psychia tric Epidemiology, 25, 2 8. Phelan, M., Slade, M., Thornicroft, G. et al. (1995) The Camberwell Assessment of Need: the validity and reliability of an instrument to assess the needs of people with severe mental illness. British Journal of Psychiatry, 167 (5), 589 595. Kingdon, D. G., Turkington, D., Collis, J. and Judd, M. (1989) Befriending: cost effective community care. Psychiatric Bulletin, 13, 350 351. Wainwright, T., Holloway, F. and Brugha, T. (1988) Day care in an inner city, in Community Care in Practice (eds A. Lavender and A. Holloway), John Wiley & Sons, Ltd, Chichester. Galanter, M. (1988) Zealous self help groups as adjuncts to psychiatric treatment: a study of recovery. The American Journal of Psychiatry, 145, 1248 1453. Mitchell, S. F. and Birley, J. L. T. (1983) The use of ward support by psychiatric patients in the community. British Journal of Psychiatry, 142, 9 15. Cutler, D. L. and Beigel, A. (1978) A church based program of community activities for chronic patients. Hospital and Community Psychiatry, 29, 497 501. Shannon, P. J. and Morrison, D. L. (1990) Who goes to GROW? Australian and New Zealand Journal of Psychiatry, 24, 96 102. Kuipers, L. and Bebbington, P. (1988) Expressed emo tion research in schizophrenia: theoretical and clinical implications. Psychological Medicine, 18, 893 909. Goldberg, E. M. (1987) The effectiveness of social care. A selective exploration. British Journal of Social Work, 17, 595 614. Seed, P. (1990) Introducing Network Analysis in Social Work, Jessica Kingsley, London. Parry, G. (1988) Mobilizing social support, in New Developments in Clinical Psychology, vol. II (ed. F. N. Watts), John Wiley & Sons, Ltd, Chichester. Milne, D. and Mullin, M. (1987) Is a problem shared a problem shaved? An evaluation of hairdressers and social support. British Journal of Clinical Psychology, 26, 69 70.

476

SOCIAL INTERVENTIONS

94. Newton, J. and Craig, T. K. J. (1981) Prevention, in Community Psychiatry (eds D. H. Bennett and H. L. Freeman), Churchill Livingston, Edinburgh. 95. Cox, A. D., Pound, A., Mills, M. et al. (1991) Evalua tion of a home visiting and befriending scheme for young mothers: Newpin. Journal of the Royal Society of Medicine, 84, 217 220. 96. Wheatley, S., Brugha, T. S., Shapiro, D. and Berryman, J. C. (2003) PATA PATA: midwives’ experiences of facilitating a psychological intervention to identify and treat mild to moderate antenatal and postnatal depression. MIDIRS Midwifery Digest, 13 (4), 523 530. 97. Wing, L. (1981) Asperger’s syndrome: a clinical account. Psychological Medicine, 11, 115 129. 98. Catalan, J., Gath, D. H., Anastasiades, P. et al. (1991) Evaluation of a brief psychological treatment for emotional disorders in primary care. Psychological Medicine, 21, 1013 1018.

99. Lewinsohn, P. M., Mischel, W., Chaplin, W. and Barton, R. (1980) Social competence and depression: the role of illusory self perceptions. Journal of Abnor mal Psychology, 89, 203 212. 100. Leff, J. and Vaughan, C. (1982) Patterns of response and style of coping in high EE and low EE relatives of psychiatric patients, in Expressed Emotion in Families, Its Significance for Mental Illness (eds J. Leff and C. Vaughan), Guildford, New York. 101. Barnett, B. and Parker, G. (1995) A test of the social support hypothesis, in Social Support and Psychiatric Disorder: Research Findings and Guidelines for Clin ical Practice (ed. T. S. Brugha), Cambridge University Press, Cambridge, pp. 213 239. 102. Cross, D. G., Sheehan, P. W., and Khan, J. A. (1982) Short and long term follow up of clients receiving insight oriented therapy and behaviour therapy. Jour nal of Consulting and Clinical Psychology, 50, 103 112.

36 Modern social networking and mental health Keir Jones,1 James Woollard2 and Dinesh Bhugra3 1 2 3

South London and Maudsley NHS Foundation Trust, London, UK Surrey and Borders Partnership NHS Foundation Trust, Leatherhead, UK NIH Biomedical Research Centre and Institute of Psychiatry, King' s College London, London, UK

36.1

INTRODUCTION

Human beings are social animals, and the extent, nature and quality of interpersonal interactions are shaped by a range of factors, including broader social structures, cultural practices and personality. For a considerable part of human history, social groups tended to be generally small and restricted to local environments, simply because it was difficult to travel long distances and move beyond the relatively narrow confines of immediate settlements. Social networks would, in the main, have been constructed through a web of family relations, marriage, neighbours and peers. These interpersonal relationships would often be long lasting and communication would, no doubt, have been face to face. With globalization (see Chapter 12) and intense migration across the globe, along with the increase in communication electronically and otherwise, an individual in a modern society has the option of relationships with a disparate and geographically scattered

network of people. These networks may include individuals known only for short periods of time, and only ever via telecommunication links, such as the internet. Social relationships can be formed and sustained without the need for face-to-face interaction (or the need for handwritten letters, with delivery times of days and weeks). Sustaining such long-distance relationships is now possible due to the development of a range of new technologies, in particular mobile phones and the internet, which allow extensive and essentially limitless national and international communication. The aim of this brief chapter (set alongside Chapter 35, ‘Social Support’) is to discuss how and why social networks are changing and how this change influences our notions of social support. We also look at how these changes in social networks influence social and personal expectations, which in turn affect societies in general and, more specifically, affect the mental health of individuals. The effects of these modern

Principles of Social Psychiatry, second edition Edited by Craig Morgan and Dinesh Bhugra Ó 2010 John Wiley & Sons, Ltd.

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technologies, in particular internet-based social networks, on the nature of human communication will

36.2

also be explored, along with the clinical relevance of these technological changes.

WHAT HAS HAPPENED AND WHY?

As social groups developed historically, societies were based around tight networks of family relations, friends and colleagues who shared a geographically restricted area and who lived their lives in a relatively public arena. Hofstede (1980) classified societies either as sociocentric (also known as collectivist) or egocentric (also known as individualistic). However, major technological and social advances, particularly over the past 5 10 years, have resulted in a dramatic shift in the construction of society and of social networks, particularly in the West, although no nation is entirely immune from this change. Other factors, such as gender equality, increasing personal mobility with cheap car and air travel and general prosperity, have contributed to people becoming increasingly aspirational and mobile. They are no longer physically confined to the community of their origin. These changes have arguably resulted, simultaneously and paradoxically, in more transient, private and atomized local communities and broader social networks consisting of complex, diverse and international networks of individuals. These networks can be seen at two levels: first at a local level where the contact may be more physical and solid and face to face, and then at a cyber level where the contact may be fluid, ephemeral and also anonymous. In short, with the rapid development of computer technology, a seemingly instinctive demand for new and substituting methods of maintaining social networks has developed. A variety of options for social and cyber networking have exploded into the public domain, enthusiastically adopted by younger generations. As the development of rail, roads and rapid means of transport changed the way people communicated with each other through the introduction of mass travel and postal contacts changed patternsofsocialinteractioninthenineteenthcentury,so the technology of the latter half of the twentieth century has further transformed the structures and functions of social networks. The development of mobile phone technologyinstantlyallowedeaseofcontactwithknown

acquaintances irrespective of their location and activity. In addition, the internet developed from a minor academic, military and niche technology to a user friendly, highly prized and increasingly unavoidable communication tool across the globe, giving unprecedented access to a variety of activities. As the general public began to ‘surf the net’ in their millions, different and easier methods of communicating and sharing information developed, including chat rooms, user groups, web forums, virtual reality worlds and sites specifically dedicated to ‘social networking’. Some of the most important and interesting tools that have developed include: 1. Web forums, blogs, chat rooms. These are usually based around a particular theme or topic and often bring together users who do not know one another but share a common interest. Instant messaging (IM) is a form of online communication where it is possible to talk in real time with friends or acquaintances and can both form a part of a web or chat forum, a social networking site or act as an independent communication tool, such as the Microsoft Network Messenger. 2. Social networking sites, e.g. Facebook, MySpace, Bebo. These have grown exponentially in recent years. Most involve having a ‘profile’ including a photograph and then a list of ‘friends’ or contacts, with which individual profiles are linked. These are used to maintain existing friendships by keeping profiles updated with recent personal information and allowing the exchange of messages. Users can also make new contacts through special interest groups and use the site to advertise real-life personal or work events. The recent popularity of ‘Twitter’, a social messaging interface allowing brief updates of daily activities in real time, makes it likely that increasingly people will keep in contact with the mundane, in the moment, activities of friends and others. The nature, extent and

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quality of social support available through these sites is almost entirely unknown. 3. Virtual reality worlds and gaming, e.g. Second Life, World of Warcraft (WoW). These domains remain more niche in appeal, in that they have not crossed into the mainstream consciousness in the same way that social networking sites have, but they still have a devoted and growing following of millions of people worldwide and may become increasingly popular as broadband technology expands. These involve a user navigating a virtual ‘world’ either with the predominant function being a range of social and business (e.g. Second Life) or social and gaming (e.g. WoW) opportunities. Users create an ‘avatar’ an animated character that can

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be of any gender, race, age or appearance. They navigate the virtual world and interact with other users in organized social structures. As well as business and educational forums, Second Life is being used increasingly to promote charity activity, user self-help groups (including a range of mental health support groups e.g. see Reference [1]) and even government-sponsored health services attempting to access an otherwise hidden adolescent population (e.g. see Reference [2]).

Together, these three methods of communicating provide an entire new way of interacting, building and maintaining global social networks.

WHY ARE THESE CHANGES RELEVANT TO MENTAL HEALTH?

Clearly, as mental health professionals, it is always important to understand the context of our patients’ lives and difficulties. As social networking via the internet and mobile phones becomes an integral part of modern life, we must understand these structures and the strengths and difficulties they pose in order to ensure we can give appropriate advice and exploit them for patient benefit. Understanding the language and etiquette of online social networking allows a professional to understand how it can become a risk or protective factor for mental health problems. Specifically, those with mental health problems now seek, in increasing numbers, information and support from online resources and support networks. Therefore, rather than see them as a separate and uncontrollable entity, we must ensure that there are informative, accurate and safe options readily available. Shared experiences of their ill-health and

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expectations from therapeutic encounters, along with ease of access to knowledge that was previously preciously held by professionals, have meant that the quality of therapeutic encounters is changing. On a more practical level, internet-based social networking sites and virtual realities may provide some exciting opportunities for exchanging ideas internationally, coordinating research and special interest groups, and maintaining collaborative relationships with other professionals worldwide. There is growing interest in a range of forms of internet-based clinical practice (e.g. see Reference [3]) and, with careful preparation, it may be possible to manipulate the new media for patient benefit. The discussion that follows aims to present, on the one hand, some of the potential benefits of internetbased social networks and, on the other, some of the concerns that have been raised in the research literature and media.

INTERNET-BASED SOCIAL NETWORKS: SOME ADVANTAGES

1. Ease of staying in touch (increasing cohesion). A major motivating factor in the development of mobile phones and social networking sites on the internet is to make ‘staying in touch’ easier; i.e.

rather than making us more distant and disparate, it brings us closer together. They may allow us to keep in contact with valued friends and family members more easily and for longer, at reduced

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costs. Internet-based community groups have become commonplace, and many real-life social and interest groups conduct their affairs through a website or email list. This means that people often expect an immediate response to queries that in the past could have taken weeks or even months. This of course (and encroaching on discussion of disadvantages) may be an additional source of stress for the recipient. 2. Bringing disparate groups together. A further potential advantage of modern social networking methods is the ability to bring disparate groups together. These may be minority groups, patient groups, special interest groups or just the socially isolated. Millions of people round the world now use the internet as a source of support, friendship, information and even romantic relationships.

advice [2] and an Australian charity provided chat-room-based sexual and mental health consultations [6]. The Terence Higgins Trust also provides anonymous advice regarding HIV and AIDS through some social networking sites. 5. Information and education. Both patients and mental health professionals have access through the internet to limitless information. This can take any form, from formal research papers right through to ‘blogs’ (a sort of internet diary) to alternative or spiritual constructions of disease.

3. Support networks/user groups. Following on from the previous point, the number of organized support and user groups online has exploded. From more simple website-based message boards to virtual reality weekly meetings, the range and variety of patient/service user groups is immense [4].

6. Transcending prejudice. On the internet, a person may essentially present themselves how they wish, usually through written text, and these interactions may be freer from prejudices that many may face in person. At one extreme, an entire ‘second’ or ‘parallel life’ can be created on the internet. The individual can be who they would wish to be, rather than who he/she really is, thereby creating a dissonance in their identity. Social class, status, ethnicity, disability, sexuality may all prove to be less of a barrier in any social interaction. People can withhold or disclose personal information, as they wish.

4. Anonymity. The anonymous nature of many internet interactions can be advantageous, particularly for conditions that experience more prejudice, such as mental and sexual health [5]. For example, the Spanish Health Service recently launched a virtual-reality-based clinic for sexual health

7. Safety. Many people feel much safer and more secure carrying a mobile phone. One can also argue that sometimes being able to conduct meetings, social interactions and even dating on the internet may be safer than attempting to meet unknown people or possibly using more risky methods.

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INTERNET-BASED SOCIAL NETWORKS: SOME CONCERNS

1. Reduction of face-to-face contact. A major concern with modern social networking raised repeatedly in the media is that it replaces faceto-face interaction. Indeed, the psychological effects of this are still being debated currently in the media, with concerns raised that this reduction of interpersonal time is damaging our physical and mental health (e.g. see Reference [7]). The UK Guardian newspaper quoted a ‘leading neuroscientist’ as saying that ‘. . . social network

sites risk infantilising the mid-twenty first century mind, leaving it characterised by short attention spans, sensationalism, inability to empathise and a shaky sense of identity [8]. There is limited research addressing this point, although the risks of excessive use are well documented [1, 9]. However, meanings and implications of face-to-face contact also change with an increasing use of ‘webcams’, allowing users to see one another.

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2. Lack of quality assurance. A further issue with modern networking and support groups is the quality of available social support and information. For example, research has highlighted the inadequacies of much of the available material within the mental health field [10]. Inappropriate advice and information may lead to inadvisable actions, e.g. stopping medication without full consultation with a specialist health professional.

children and adolescents using mobile phones and the internet to harass others in what could be more covert or intense than traditional bullying. A recent large survey of secondary school pupils conducted in the UK [13] suggested that between 5 and 10% of pupils reported being cyberbullied during the last school term, and that victims were less likely to inform others than were victims of more traditional bullying.

3. Ease of access to dangerous or detrimental information. Following a similar line, it is possible to access an infinite amount of information and peer advice, but this may include potentially very damaging advice. Particularly pertinent in mental health, this includes the large number of suicide sites that discuss effective methods. There have even been a few cases where young people have taken their own lives while live on a webcam [11].

6. Addiction. There has been a growing discussion of the addictive nature of virtual media, in particular chat rooms, cybersexual encounters, and virtual worlds and interactive gaming such as Second Life or World of Warcraft (e.g. see References [1] and [14]). Concern has been raised that some individuals use them compulsively at the expense of their real-life functioning. There is also growing evidence that young people with underlying mental illness are particularly vulnerable to excessive or compulsive dependence on the internet [9, 15].

4. Risks associated with anonymity. The anonymous and user-controlled internet profiles run the risk of deception. The most high-profile cases of this involve adults pretending to be teenagers and ‘grooming’ other young people for sexual satisfaction, to obtain photographs, or even to arrange reallife meetings, although recent research suggests this may be a relatively infrequent phenomenon [12]. There is also the potential risk of people posing as professionals or experts within a given field. 5. Cyberbullying. The term ‘cyberbullying’ has been coined to describe the observed phenomena of

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7. The communication underclass. All these new computer-based technologies require a degree of information technology literacy and access to the appropriate equipment. Increasing reliance by charities and support networks on the internet runs the risk of creating a ‘communication underclass’, i.e. individuals who for whatever reason do not have the skills or finances to access such media. Some of the individuals who could most benefit may no longer be able, or know how, to access the help they need.

CONCLUSION

In the last ten years, rapid changes in the way we communicate with one another have taken place. These have come about partly because of the available technology, but mainly because of a shift in local, community-based social circles to much more atomized but global networks. The advent of mobile phone and internet communications and particularly the growth of internet user forums, virtual reality and social net-

working sites have important repercussions for mental health in the most general sense. It is increasingly important for mental health professionals to have a basic understanding of the shifts in social networks and the mediums that are available, and how they may be influencing the health of patients and the population at large. As the computer-literate generation grow up, the importance of internet-based technologies will

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continue to increase and the effects of social networks will expand ever further. There are both major benefits and challenges presented by the new technologies and some of these have been discussed in this chapter. There is, then, a whole programme of research needed to understand and respond to these dramatic and inexorable changes in how we communicate, connect and share information. While no one has the power to halt these developments, a greater understanding of them is vital if mental health professionals are to influence the way they develop into the future to safeguard the health of patients and to utilize these developments in the most advantageous way to achieve clinical and professional goals. As yet most of the perceived advantages and disadvantages are hypothetical; research in this area is, at present, very thin. The long-term effect of this major populationwide shift in social networking remains to be seen.

REFERENCES 1. Gorini, A., Gaggioli, A., Vigna, C. and Riva, G. (2008) A second life for eHealth: prospects for the use of 3 D virtual worlds in clinical psychology. Journal of Med ical Internet Research, 10 (3), 21. 2. The Guardian Newspaper (2008) Teenagers to take embarrassing ailments to Second Life doctors, http:// www.guardian.co.uk/technology/2008/may/10/secon dlife.spain. 3. Wootton, R., Yellowlees, P. and McLaren, P. (eds) (2003) Telepyschiatry and e Mental Health, Royal Society of Medicine Press, London. 4. Grohol, J. (2004) The Insider’s Guide to Mental Health Resources Online, The Guilford Press, New York. 5. Leach, L. S., Christensen, H., Griffiths, K.M. et al. (2007) Websites as a mode of delivering mental health informa tion: perceptions from the Australian public. Social Psy chiatry and Psychiatric Epidemiology, 42 (2), 167 172.

6. Hallett, J., Brown, G., Maycock, B. and Langdon, P. (2007) Changing communities, changing spaces: the challenges of health promotion outreach in cyberspace. Promotion and Education, 14 (3), 150 154. 7. ITN News (2009) Get Off Facebook and Get a Life, http://uk.news.yahoo.com/4/20090220/tuk get off facebook and get a life dba1618.html. 8. The Guardian Newspaper (2009) Facebook and Bebo Risk ‘Infantilising’ the Human Mind, http://www.guar dian.co.uk/uk/2009/feb/24/social networking site changing childrens brains. 9. Yen, J. Y., Ko, C. H., Yen, C. F. et al. (2007) The comorbid psychiatric symptoms of internet addiction: attention deficit and hyperactivity disorder (ADHD), depression, social phobia, and hostility. Journal of Adolescent Health, 41 (1), 93 98. 10. Nemoto, K., Tachikawa, H., Sodeyama, N. et al. (2007) Quality of internet information referring to mental health and mental disorders in Japan. Psychiatry and Clinical Neurosciences., 61 (3), 243 248. 11. The Times (2008) Horror as Teenager Commits Suicide Live Online, http://www.timesonline.co.uk/tol/news/ world/us and americas/article5203176.ece. 12. Ybarra, M. L. and Mitchell, K. J. (2008) How risky are social networking sites? A comparison of places online where youth sexual solicitation and harassment occurs. Pediatrics, 121 (2), 350 357. 13. Smith, P., Mahdavi, J., Carvalho, M. et al. (2008) Cyberbullying: its nature and impact in secondary school pupils. Journal of Child Psychology and Psy chiatry, 49 (4), 376 385. 14. Southern, S. (2008) Treatment of compulsive cybersex behaviour. Psychiatric Clinics of North America, 31 (4), 697 712. 15. Ha, J.H., Kim, S.Y., Bae, S.C. et al. (2007) Depression and internet addiction in adolescents. Psychopathol ogy, 40 (6), 424 430. 16. Hofstede, G., (1980) Culture’s Consequences: Inter national Differences in Work Related Value. Newbury Park, CA: Sage.

37 The psychiatric–child protection interface: research to inform practice Colin Pritchard School of Health and Social Care, Bournemouth University, Bournemouth, UK

One of the basic markers of any civil society is its capacity to look after its most vulnerable members. Children’s basic needs are often affected by a number of factors including poor parenting, abuse (physical and sexual) and bullying at school. The protection of children using the legal system provides a safety net. However, since ‘child protection’ became more specialized in the 1970s, a clear understanding of the importance of the psychiatric child protection interface has been lost. Each service’s priorities can and often do create a potential conflict of interest between professionals acting primarily in the interests of either an adult patient or an at-risk child. This confusion is

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compounded by differing explanations for psychosocial pathology, especially when complicated by substance abuse and/or underlying personality disorders. These conditions tend to be associated with violent and abusive sexual behaviour. At the extremes of child neglect and abuse is the death of a child, with a disproportionately high frequency of mentally ill parental assailants. The psychiatric dimension in this interaction is consequently far greater than previously realized. A better understanding of the psychiatric child protection interface will enable us to reduce the fatal toll, make children safer and prevent some future psychiatric problems.

DILEMMAS IN PSYCHIATRY AND CHILD PROTECTION: A CASE EXAMPLE

A fictionalized account of a recent problematic childcustody case is used here to illustrate the relevant issues. This case set consultant paediatrician and psychiatrist against each other, as an estranged wife sought to prohibit her ex-husband, a patient with a

history of psychiatric illness, having access to their children, aged eight and ten. The paediatrician emphasized that as the father had been violent towards his wife and the children had witnessed verbal threats of violence against their mother and

Principles of Social Psychiatry, second edition Edited by Craig Morgan and Dinesh Bhugra Ó 2010 John Wiley & Sons, Ltd.

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her new partner, contact between the father and the children was causing serious distress, resulting in marked deterioration in their school work, increasing anxiety, sleep disturbances, enuresis and a worsening relationship with peers. The paediatrician recommended that the court enforce the mother’s application to stop her husband’s right to access. On the other side, the consultant psychiatrist presented evidence of major progress in the stability of the 45year-old father, who was devoted to his children, and argued that loss of access would make him a real suicide risk, given his previous history of serious suicide attempts. The father had been diagnosed as suffering from Munchausen syndrome while in his late twenties, but he had shown no symptoms of this for the past five years. Furthermore, although the father had been violent towards his wife, there was no evidence of violence towards his children and there was a bond of real affection between them. The paediatrician and psychiatrist each argued that their primary responsibility was to their respective clients. The psychiatrist asserted that the ‘paramount’ interests of the children were not being served by loss of contact with an undoubtedly loving father and that the children’s current problems were resolvable,

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while the risk of suicide by the father outweighed other considerations. Conversely, the paediatrician maintained that the children’s emotional and physical condition was being jeopardized by a father who was still intermittently using drugs and alcohol and whose threats of violence should be taken seriously. The tragic events unfolded over the last weekend before the court case when the father killed his children and then himself. This illustrates how the psychiatric child protection interface is often misunderstood. There is considerable evidence that at the extremes of child abuse, resulting in the death of a child, a vast majority of assailants are family members, predominantly those in parenting roles [1,2], of whom many have underlying mental health problems [3 6]. However, the psychiatric child protection interface often remains unacknowledged [4,7]. This was epitomized in a confidential audit of violence and mental disorder in the UK, in which it appears that the age and relationship of the victims to the mentally disordered assailants was not recorded or at least not reported [8 10]. A proper understanding of this relationship is crucial in developing prevention and intervention strategies.

BACKGROUND

In the UK, under the Infanticide Act, mothers who kill their babies (<1 year) are considered to be mentally disordered and unfit to plead, the assumption being that the mother must be experiencing a post-partum psychosis. Before the early 1960s, the concept of ‘child abuse’ was not widely known and it was not until Kempe et al. [11] alerted the Western world to ‘baby battering’ that the issue started to receive wider public attention. In the UK, the Maria Colwell enquiry in 1973 highlighted something of the extent of the problem, with great emphasis being placed on the most extreme outcome of child abuse, i.e. the death of the child [1,12,13]. There has been a tendency to play down both mental health and social (i.e. poverty) factors in child abuse, especially in relation to ‘emotional’ abuse, which can often have relatively worse long-term

effects on the development of children and adolescents. This was reflected in a so-called definitive review of child abuse in the British Journal of Social Work, which made no mention of any issues relating to mental health [14], despite there being evidence that inappropriate and exploitative child/parent/adult relationships can be particularly corrosive to the child’s mental health development [2,15,16]. However, the psychiatric child protection interface is far more subtle and extensive than just dealing with mentally disordered perpetrators of abuse (in all its forms). It is this complexity that is explored in examining the impact of psychiatric disorder upon the child living with a mentally ill parent, along with the impact of child neglect and abuse as a factor in subsequent mental disorder and psychosocial pathology.

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ATTACHMENT AND DEVELOPMENT

The attachment and developmental problems often experienced by children of a mentally ill parent are supported by the ‘Every Child Matters’ Agenda in the UK, which seeks to integrate all services relevant to children to ensure their five main needs are met: ‘being healthy, staying safe, enjoying and achieving, making a positive contribution and economic well-being’ [17]. Psychosocial health and development, leading to every child achieving their full potential, are undoubtedly important. Various factors play a role in attachment and development, as discussed below.

37.3.1

Neurodevelopment

The negative effects of maternal, family and socioeconomic stressors upon the child’s neurological development are now being empirically demonstrated. Maternal stresses retard the neurological development of the under one-year-old baby, affecting both brain development and subsequent behaviour [18 20]. With our greater ability to measure and monitor subtle and previously indiscrete reactions, it is now possible to investigate the biological underpinnings for Bowlby’s theories of attachment and for links between early abuse and later depression. For example, there is now research suggesting that high levels of cortisol in response to stress may increase risk of depression [21 23], with the intriguing possibility that this increased stress responsivity stems from experiences of abuse in childhood [24]. Equally there are wellestablished neurodevelopmental markers associated with the aetiology of schizophrenia, such as those found in studies of parental infection, of obstetric complications and of how visual disturbances in early childhood predict schizophrenic-spectrum disorders in adulthood [25,26]. A remarkable longitudinal study of 12 infants of mothers with schizophrenia compared

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with 12 controls identified early relative neurological dysmaturition in six of the index group, of whom five went on to develop a schizophrenic-spectrum disorder as an adult [27]. The study included examinations at 2, 6 and 13 months and psychological testing at ages 10, 15 and 22 years, with follow-up to age 27 35 years. This suggests that a mother with a schizophrenia-spectrum disorder and her child should receive maximum support and assistance as early as possible. Although these numbers are small, the trends do indicate that phychiatrists and clinicians need to be aware of parenting issues. Similarly, studies concerned with parental alcohol and/or substance abuse have shown an association with delayed or impaired neurological development and possible links with later attention-deficit and hyperactivity (ADHA) syndrome in children [28,29].

37.3.2

Psychosocial

Psychosocial factors are also relevant. To take a small number of indicative examples: (i) Pollock and Percy [30] examined 40 pregnant women and their attitudes to their developing foetus. They found that negative attitudes were associated with poor attachment but not with reported intention to harm the foetus; (ii) an intriguing example of global maternal stress came from the Netherlands where, following the Nazi invasion in 1940, significantly higher rates of subsequent schizophrenia were found among people born that year [31]; (iii) the Ice Storm in Canada in 2000, which caused enormous disruption, was associated with poor cognitive development in children [32], which was still identifiable (in comparisons with control cohorts) five and a half years later [32]. These select examples indicate that social and cultural contexts are important in understanding the impact of environment on child development.

THE IMPACT OF LIVING WITH MENTALLY DISORDERED PARENTS

Manfred Bleuler [33], in a classic and influential paper, asked what was it like to live with a psychotic

parent? Children sometimes have to cope with acute disturbances in their parents, reversing the child/

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adolescent parent role, to care and protect their parents from the potential consequences of their disturbed behaviour [34,35]. Thus there is a need for mental health services to initiate support for children coping with the ‘burden of mental disorder’ [35,36], with an urgent need to develop partnerships across services [37]. This is complicated by the fact that children born to mothers with psychosis are exposed to multiple risks: genetic predisposition, suboptimal development and the burden of having to confront mental illness daily [38]. The detrimental effects on child development are confirmed by a number of studies. For example, Wan et al. [39], in a study of 38 Manchester women with perinatal mental illness (13 with schizophrenia and 25 with affective disorders) admitted to a Mother and

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Baby Unit found that mothers with schizophrenia were reported as having poorer interactions with their children. A British study followed 239 mothers with schizophrenia and 693 mothers with affective disorders over 8 years to examine the quality of their parenting [40]. These authors found that the mothers with schizophrenia had higher ratings for poor parenting skills and, crucially, psychosocial problems, using social services criteria, when compared with affective disordered mothers. However, if the former had a well partner and a supportive relationship or belonged to a higher social class, then the outcome was better. Thus, even in the presence of schizophrenia, social factors remain important, and given adequate and appropriate support those with a serious mental disorder can be effective mothers.

CHILD SEX ABUSE AND SUBSEQUENT OUTCOMES

The impact of child neglect and abuse into adulthood has been reported from many cultures. Baloobal et al. [41] noted a link between child sexual abuse and people attending an adult psychiatric clinic in the West Indies. Gladstone et al. [42] in Australia and Peleikis et al. [43] in Norway also reported an association between sexual abuse as a child and depression and anxiety states as adults. From an investigation of 263 adolescent females who had reported ‘unwanted sexual experiences’, Kogan [46] found that the age at which disclosure became possible was crucially affected by the relationship to the perpetrator the closer the relationship, the greater the delay in admitting their distress. While most studies of child sexual abuse report that the child is more disturbed by a ‘within-family’ assailant than by an ‘extra-family’ abuser, the majority of men charged with a sex offence against a child are ‘extra-family’ molesters, leading us to the conclusion that ‘within-family‘ abuse is underreported in official crime statistics. This may be because once the abuse is discovered in the family, it is often stopped, so the family is reluctant to go to the authorities [1]. A link between earlier child abuse and suicidal behaviour has been widely reported [47,48]. Makhija [49] noted the crossover between child abuse,

child and adolescent maladjustment and subsequent psychosocial problems, including substance abuse and its link with suicide. A key feature to emerge is the young person’s markedly low ‘self-esteem’. Salzinger et al. [50] investigated severe physical abuse of pre-adolescents in a study of 75 young people at ages 10 and 16 years and found a strong association with depression and suicidal behaviour. Thus there is an urgent need for clinicians to be aware of the long-term impact of severe physical maltreatment on susceptibility to mental illness. There is, moreover, evidence that adolescents who run away from home and adolescents who become homeless are more likely to have experienced sexual victimization in childhood [51 54]. A complicating factor in all these associations is the overlap between socioeconomic disadvantage and psychopathology, as well as physical injury [55 60]. Freisthler et al. [61] studied 1646 children to explore the relationship between socioeconomic markers and childhood injuries. They found disproportionate numbers among those living in poverty, with substance abusing parents, and from ethnic minority groups a de facto surrogate indicator for poverty, especially in the US [62]. It may well be that there is a degree of underreporting, as suggested by Everson et al. [63], who examined 350 adolescents (11 13 years) who had

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been identified as at risk of abuse before the age of two. When compared with ‘official’ records of abuse,

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the adolescents’ self-reported rates were 4 to 6 times higher than the child protection records.

PERSONALITY DISORDERS: THE CHASM BETWEEN PSYCHIATRY AND CHILD PROTECTION

Neglecting and abusing parents often came from an intergenerational cycle of being neglected, abused and sometimes from residential homes where abuse may have occurred [1,2,15,16,64 66]. Poverty, with all its negative health features, also plays a role, thereby complicating both aetiological and intervention factors. Broadly, child protection practitioners are inclined to view problematic parents as being on a temporal continuum from previously disadvantaged ‘victims’ to becoming in turn inadequate and eventually neglecting or/and abusing parents. From disruptive behaviours in childhood an individual may progress to antisocial behaviour and criminal activity. This then causes social services to have serious concerns about these young men and women in their own right as well as possible future inadequacies in their role as parents, causing a vicious cycle of deprivation [54,67 71].

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Psychiatric perspectives on personality disorder

Personality disorders are discussed at length elsewhere in this volume (see Chapters 19 and 34). Is personality disorder a ‘learned’ or inherent behaviour, shaped by the environment, albeit with possible genetic predisposition [72]? The evidence suggests an interaction of all these factors. Suffice to say that the most useful practical aspect of the concept of personality disorder is the relative stability of socalled borderline personality disorder [73]. There are obvious gender differences, as highlighted by Coid et al. [74] and Yang and Coid [75]. In these studies, men were more likely to meet criteria for antisocial personality disorder as per ICD 10, and more likely to be violent and misuse substances, whereas women appeared to have more anxiety states. These authors further found that psychiatric morbidity explained

22% of the gender difference with regard to violence. Crucially, while the rates for alcohol, drug dependence and antisocial personality disorder were relatively low, only 7, 4 and 4%, respectively, they disproportionately contributed to a higher risk of violence 23, 15 and 15%, respectively [74,75]. This gender differential was also seen in a study of anxiety sensitivity in 245 monozygotic and 193 dizygotic twins. Women were more influenced by a combination of environmental and genetic factors, whereas men were more influenced by environmental factors [76]. This could mean that there are gender/ genetic predispositions that interact with environmental influences. Frick and White [77] suggested that ‘callous unemotional’ traits were important in the development of aggressive and antisocial behaviours, which are seen in an important subgroup of antisocial and aggressive youth. However, Pardini et al. [78], in a follow-up of 120 highly aggressive 5th graders over a year, reported that such traits, although fairly stable, were not immutable as callous unemotional children exposed to lower levels of physical punishment and higher levels of parental warmth and support showed later decreases in the levels of these traits and antisocial behaviour. Conversely, children with ‘low warmth’ parents had increased callous unemotional traits, again showing the nurture nature interaction. This indicates that there are suitable interventions and educational packages that can be used to modify outcomes in the longer term.

37.6.2

Developmental perspectives on personality disorder

As noted earlier, the relationship between childhood abuse and eventual adult personality disorders has been confirmed in several studies [79 85]. A Finnish

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‘From Boy to Man’ study traced 2556 boys aged 8 in 1981 until early adulthood, focusing upon externalized (conduct disorder) and internalized (anxiety disorder) psychopathology, based upon military, health and offender records [86]. These authors found that boys with both externalized and internalized disorders had the worst outcomes in that they had high rates of criminal behaviour and mental disorders. Although these boys represented only 4% of the total sample, they were responsible for 26% of all crimes and as many as 62% had subsequent mental disturbances. Internalized problems alone had the relatively best outcomes and the authors recommend that if these children can be identified early enough, it should be possible to break this vicious cycle [86]. A follow-up study from the Isle of Wight on adolescent psychopathology traced former disturbed adolescents into mid-life. While 10% of individuals had reported severe sexual or physical abuse and had higher rates of subsequent adult mental disorders, a substantial minorityofabusedindividualsreportednomentalhealth problems. This apparent ‘resilience’ was reportedly

37.7

related to perceived parental care (self-esteem), adolescent peer relationships and eventual adult relationships, and personality styles [87]. This reflects Quinton and Rutter’s[65]classicoutcomestudyofformeradolescent females in children’s orphanages. In this study, those with positive key personal relationships did as well as their social peers as mothers, whereas those without any significant relationships went on to repeat neglectful parenting styles. Johnson et al. [52,53], in a communitybased study of 593 families, traced children from 6 to 14 16 years old. They found strong correlations betweenlowparentalaffectionandantisocialbehaviour, borderline personality disorder and other mental disorders. Those exposed to harsh parenting were at especially high risk for personality disorder, passive aggressive traits and schizotypy. While there was a degree of overlap, broadly affectionless parenting was associated with more personality problems, but it was having harsh aggressive parents that was particularly linked to later antisocial and aggressive personality disorder types [52,53]. Therefore, it ought to be possible to intervene early enough and improve some if not all of these outcomes.

CHILD VICTIM TO ABUSER

Briere et al. [81] found, from a sample of 1442 in the US that 14% of men and 32% of women satisfied some criteria for sexual abuse. The respondents did not identify whether the abuse was within the family or outside the family. The authors therefore assumed that sexual abuse was relatively common in the general population. However, these rates should be treated with caution in terms of negative outcomes on children, as much of the abuse is often ‘casual’ and does not continue over time or involve the child in a corruptive and manipulative way. It has been found that many extra-family abusers have predominantly casual sexual contact with many different children, often only a one-offs, which helps them avoid detection [1,5]. It has been argued that male children who are the victims of previous abuse are particularly likely to become abusers, although this is not a universal

finding [79,80,82,83,88 91]. A British study found that almost half of convicted child sex offenders in South East London had reported experiences of sexual victimization, which was also associated with a greater range of psychological disturbance [92]. An earlier study compared a large number of criminal histories of validated cases of childhood sexual abuse with cases of physical neglect or abuse, and with a matched socioeconomic control group. This found that there was little difference between the control and index groups for later delinquency and adult crime, but the previous victims of child sexual abuse had a considerably higher rate of arrest for sexual crimes than controls [83,89 91]. Burton [90] compared 74 male prisoners who had been involved in a sex crime against a child with 53 matched nonsexual abusing prisoners and noted that it was possible to identify

THE PSYCHIATRIC–CHILD PROTECTION INTERFACE: RESEARCH TO INFORM PRACTICE

76% of the child sex abusers as being earlier victims of sexual abuse and physical neglect. Thus, there is a serious link between being a victim and becoming a perpetrator [15,71,93]. Perhaps the most convincing study of the journey from abused to abuser is that of Salter et al. [94], who prospectively assessed childhood experiences in a longitudinal study over 7 19 years and included 224 male victims of child sexual abuse. Based upon criminal convictions, 12% of the victimized men

37.8

489

were found guilty of a sexual offence, mainly against a child and predominantly outside the family. They had experienced three times the material neglect, lack of supervision and witnessing of serious intrafamilial violence and seven times the rate of being cruel to animals as children. A majority of abused children do not go on to become abusers, but particular patterns in their childhood appear to be associated with a greater risk of becoming perpetrators in later life [94].

EXTREMES OF THE PSYCHIATRIC–CHILD PROTECTION INTERFACE

In many countries, including Britain, ‘child protection’ in the public mind is to do with its failures [95]. At the time of writing, the case of Baby P, whose mother, cohabiter and male lodger were responsible for the child’s death, caused a massive outcry, as did the killing of the two Mullings-Swell children by their mother who had a psychotic disorder [96,97]. Although the extremes of child neglect and abuse is a death of a child [13,15,98], the causative and contributory factors are many. A majority of the perpetrators are family members, mainly parent figures (85 90%) [1,99 101]. Cavanagh et al. [102] explored in detail 26 cases of fatal child abuse by a father. The fathers were poorly educated, underemployed and had significant criminal histories. A majority, 62%, were ‘stepfathers’, although only four perpetrators were married to the child victims’ mothers, confirming earlier observations of a decade of child homicide assailants [5]. A psychiatric dimension in cases of the deaths of children is even more central than in the neglect and abuse continuum. In a two-year study of UK convicted male child sex abusers, it was possible to identify three behavioural types. A majority (54%) had no other police convictions other than a sexual offence against children and were designated as ‘sex only’ offenders. The second group were all convicted of nonsexual crimes in addition to at least one sex offence against a child, designated as ‘multicriminal’ child sex abusers. The final group were convicted of nonsexual crimes and had at least

one conviction for serious violence, and were thus described as ‘violent multicriminal’ child sex abusers [103]. An analysis of a decade of child homicides distinguished between within-family or extra-family assailants [1,5].

37.8.1

Within-family assailants

Of this group of assailants, 82% were parent figures and these could be categorized as: parents with a likely mental disorder, mothers on the At Risk of Abuse Register (ARAR) and stepfathers/cohabitees with a pervious conviction for violence. The most frequent within-family assailants were mentally ill mothers (MIMs) 44%, followed by ARAR mothers 33%, followed equally by mentally ill blood fathers 22% and stepfathers/cohabitees 22%. This initial analysis, showing 66% of assailants to have been mentally ill, was a matter of concern, as it might add to the stigma surrounding those with a mental disorder [1,72]. However, an epidemiological analysis of rates of killings rather than absolute frequency produced a very different pattern. The MIM homicide rate, at 100 per 100 000, was half that of mothers on the ARAR. The presence of a ‘violent’ man, i.e. a stepfather/cohabitee with a previous conviction for violence, was 4 times more common than an MIM. However, all these men were jointly charged with their female partners, who in each case were also on the ARAR, because at the trial it was not possible to

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determine which parent was primarily responsible for the death of the child [104]. Interestingly, in most cases the mother was given a 2- to 3-year sentence but the violent father-figure was given 12 to 15 years, indicating whom the judge thought was the main assailant. It is noteworthy that the best predictor of subsequent violence is an earlier violent offence [105,106]; hence both psychiatric and child protection services need to know about any previous convictions of nonblood father-figures living with children under 5 years.

37.9

37.8.2

Extra-family assailants

These were all male violent multicriminal child sex abusers (VMCCSAs) and although they were the smallest group of assailants, their epidemiological rate was 80 times that of the MIM. Clearly, in terms of risk and rate of child murder VMCCSAs are significantly more of a physical threat to children than MIM [1,100]. These men raise serious ethical issues in how they should be dealt with that need to be discussed and resolved.

IS THE PSYCHIATRIC DIMENSION PREDOMINANT?

A majority of parents who killed their children were mentally ill: all the blood fathers and a fifth of the MIM killed themselves after killing their child, while another fifth of mothers were involved in a nonfatal suicide event. This is the classic suicide after murder dyad [107 109]. Murder-suicide has been reported in many cultures [110,111]. The VMCCSA are men who, almost by definition, are seriously personality disordered and may be described as ‘callous unemotional’ types [77,78], with the origins of their dysfunction lying in their backgrounds [74,75,79 85]. Yet they may be ‘mentally competent’, aware that what they did to their victims was wrong and not the result of some deluded and/or hallucinatory state or the exercising of sexual fantasies [112,113]. Nevertheless, interventions to reduce reoffending have had some moderate success [114 116]. Earlier research into child protection measured the violent deaths of children, to determine whether

37.10

there was any indication of improved child protection [62,117 119]. UNICEF [120] argued that child mortality is an indicator of how a society meets the needs of its children and the accepted view is that violent deaths of children are the extreme consequence of child neglect and abuse [1,13,98]. In an intriguing study of ‘unnatural causes’, of death in Danish children, carried out in conjunction with the British National Confidential Enquiry team, Webb et al. [121] noted that the highest observed risk of violent death to children came from parents, especially if they had a previous psychiatric history. Of course, the strength of the psychiatric dimension may come down to how one defines ‘personality disorder’ and its origins, as many themselves experienced neglect and abuse [74,75,79 85], or what might be described as earlier ‘failed’ child protection. Thus it appears unequivocal that the psychiatric child protection interface is of vital importance to safeguarding children.

MORE PSYCHIATRIC COMPLEXITY

In the Wessex study it was shown that all blood parents who killed one (or more) of their children had a high level of subsequent suicide, but none of the extrafamily assailants were known to be involved in suicidal behaviour [1]. One unexpected factor was the high level of suicide amongst the ‘sex only’ child sex abusers [5]. This led to an analysis of a regional

suicide register, based upon Coroner’s information, to compare suicide rates in the general population, those related to mental disorder and any linked to child sex abuse, both as victims and perpetrators [122,123]. Although the Coroner’s court records did not have comprehensive information on previous child sex abuse of suicide victims, nonetheless there was no

THE PSYCHIATRIC–CHILD PROTECTION INTERFACE: RESEARCH TO INFORM PRACTICE

equivocation about the accuracy of the suicide rates of the child abusers. Female victims of sexual abuse had four times the suicide rates of the general population, male victims six times that of their peers, but both victim groups had far less than mental-disorder related suicides. However, the child sex perpetrators’ suicides, all of whom were ‘sex only’ offenders, had a rate four times that of the mentally disordered [122]. While half of these men’s suicides surrounded either the disclosure of their offence or occurred at the beginning of their trials, the apparent ‘remorse’ may, and it is stressed may, be an important treatment indicator. A key

37.11

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intervention with sex abusers is to challenge their denial that their behaviour harms their victims. Treatment to reduce these men’s reoffending rates has improved but there is still a need for further advances [114 116]. Perhaps the most complex and controversial area of psychiatric child protection is the ‘Munchausen syndrome by proxy’ [124], now designated ‘fabricated induced illness syndrome’. Although relatively rare, it has been reported in more than 20 countries [125,126]. Further detailed analysis of these cases and their clinical findings is necessary in order to understand the implications of such a diagnosis.

CONCLUSIONS

The association between mentally disorder and within-family assailants has been noted over the past two decades [3,4,6,113,127 131]. Recently, Friedman et al. [129] noted that the vast majority of adult psychiatrists never explore the issue of whether a patient with psychosis who has children ever thought of harming their child. This may be because, as with suicide ideation, there is a reluctance to inadvertently put the idea in the person’s head. Yet it would seem that where the patient with a psychosis or personality disorder has children at home, especially if the patient is also involved in substance abuse, the risk to their child should be a serious consideration. With careful, sensitive, unthreatening or intrusive exploration about possible ideas of self-harm, the psychiatrist must also explore any violent feelings the patient may have about their family members. In reviewing the Wessex work, it seemed clear that if adult psychiatrists with patients with psychosis or personality disorder had asked themselves ‘is there a child protection issue here’ and social workers had asked themselves whether there was a mental health problem, many of the children who did may not have died [1,72]. About half the eventual parent assailants showed significant early warning signs, though some showed overt levels of disturbance that involved their children barely a week or so before the fatal event, giving the professionals virtually no chance to intervene [1,128].

Health and social care should work with domestic violence and child protection services in assessing the potential risk to children [10] but often this advice is ignored, despite the seminal work of Falkov [4] and the disproportionately high level of mentally disturbed parents involved with the unnatural deaths of children, as found by the NCI team [40,121]. Reflecting on the range of research that highlights the importance of the psychiatric child protection interface, what undermines this essentially integrated approach is the degree of specialization and subspecialization in medicine. This is exemplified by the tacit Cartesian separation of mind and body and the tendency for psychiatry to want to find ‘the cause’ or a specific ‘medical’ explanation. The best in modern psychiatry is a meeting of the sciences and arts, as it seeks to understand how individuals respond to developmental and trigger events in their personal and social contexts. The psychiatric child protection interface should be a model not only for psychiatry but also for the rest of medicine, as it reminds the practitioner that the particular client/patient with whom they are working is at a specific time point along a continuum in their lives. The neglected and abused child is the parent of the future, while today’s parent patient affects their family. The potential strength of modern psychiatry in adopting a biopsychosocial model, with a treatment armoury ranging from CBT to psychopharmacology, is enhanced when it adopts a developmental

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perspective, asking what does the current patient situation potentially contribute to the next generation’s vulnerability and how can we intervene? The key appears to be ‘breaking the cycle’ in the chain that leads to the impaired development, neglect and abuse of the child, adding to the next generation’s problems. If we can improve our understanding of the psychiatric child protection interface, it should help to reduce those rare but high-profile tragedies and could contribute to reducing future psychosocial pathology that wastes both lives and resources. REFERENCES 1. Pritchard, C. (2004) The Child Abusers: Research and Controversy, Open University Press. 2. Howe, D. (2005) Child Neglect and Abuse: Attach ment, Development and Intervention, Palgrave McMillan, London. 3. Bourget, D. and Labelle, A. (1992) Infanticide and filicide. Psychiatric Clinics of North America, 15 (3), 661 673. 4. Falkov, A. (1996) Study of Working Together. Part 8. Reports of Fatal Abuse and Parental Psychiatric Disorders: An Analysis of 100 Area Child Protection Committee Reviews, HMSO, London. 5. Pritchard, C. and Bagley, C. (2001) Suicide and murder in child murderers and child sexual abusers. Journal of Forensic Psychiatry, 12, 269 286. 6. Christiansen, S., Rollmann, D., Leth, P. and Thomsen, J. L. (2007) Children as victims of homicide 1972 2005. Ugeskr Laegar, 169, 4040 4074. 7. Reder, P. and Duncan, S. (1997) Adult psychiatry a missing link in the child protection network. Child Abuse Review, 6, 35 40. 8. Appleby, L., Shaw, J. and Amos, T. (1997) National Confidential Inquiry into suicide and homicide by people with mental illness. British Journal of Psychia try, 170, 579 580. 9. Shaw, J., Hunt, A., Flynn, S. et al. (2006) Rates of mental disorder in people convicted of homicide. National Clinical survey. British Journal of Psychia try, 188, 143 147. 10. CSP (2008) Independent Homicide Investigation: The National Confidential Inquiry into Suicide and Homi cide by People with Mental Illness, Centre for Suicide Prevention, University of Manchester, Manchester.

11. Kempe, C. H., Silverman, F. N., Steele, B. F. et al. (1962) The battered child syndrome. Journal of the American Medical Association, 181 (1), 17 24. 12. Bluglass, K. (1988) Infant Deaths Cause, Categories and Consequences, Blackwell, Oxford. 13. NSPCC (2002) Campaign on Child Abuse Deaths, NSPCC, London. 14. Munro, E. (1998) Improving social worker’s knowl edge base in child protection. British Journal of Social Work, 28, 89 105. 15. Corby, B. (2006) Child Abuse: Towards a Knowledge Base, 3rd edn, Oxford University Press, Oxford. 16. Crosson Tower, C. (2007) Understanding Child Abuse and Neglect, Routledge, London. 17. HM Government (2003) Every Child Matters: Change for Children, HMSO, London. 18. Noble, K. G., McCandliss, B. and Farah, M. J. (2007) Socio economic gradients predict individual differ ences in neurocognitive abilities. Development Science, 10, 464 480. 19. Talge, N. M., Neal, C. and Glover, V. (2007) (ESTRPSW unit) Fetal and neo natal experience influ ence on child and adolescent development. Journal of Child Psychology and Psychiatry, 48, 245 261. 20. Kishiyama, M. M., Boyce, W., Jimenez, A. and Perry, L. M. (2008) Socio economic disparities affect pre frontal function in children from low and high socio economic status. Journal of Cognitive Neurosciences, 27, 1106 1115. Epub ahead of publication. 21. Lupie, S. J., King, S., Meaney, M. and McEwen, B. S. (2001) Can poverty get under your skin? Basal cortisol levels and cognitive function in children from low and high socio economic status. Developmental and Psy chopathology, 13, 653 676. 22. Cerqueira, J. J., Mailiet, S., Almeida, B. and Susa, N. (2007) The prefrontal cortex as a key target of the maladaptive response to stress. Journal of Neu roscience, 14, 2781 2788. 23. Blair, C., Granger, D., Kivlinghan, K. et al. (2008) Maternal and child contribution to cortisol responses to emotional arousal in young children from low income rural communities. Developmental Psychol ogy, 44, 1095 1109. 24. Bradley, R., Binder, E., Espstein, M. et al. (2008) Influence of child abuse on adult depression: mod eration by the cortiotropin releasing hormone recep tor gene. Archives of General Psychiatry, 65, 190 200.

THE PSYCHIATRIC–CHILD PROTECTION INTERFACE: RESEARCH TO INFORM PRACTICE

25. Brown, A. S. (2006) Prenatal infection as a risk factor in schizophrenia. Schizophrenia Bulletin, 32, 200 202. 26. Schubert, E. W., Henriksson, K. N. and McNeil, T. F. (2005) A prospective study of off spring of women with psychosis. Acta Psychiatrica Scandinavica, 112, 385 393. 27. Fish, B. and Kendler, K. S. (2005) Abnormal infant neuro development predicts schizophrenia spectrum disorders. Journal of Child and Adolescent Psycho pharmacology, 15, 348 361. 28. Coles, C. D., Platzman, K. A., Raskind Hood, C. L. et al. (1997) A comparison of children affected by prenatal alcohol exposure and attention deficit hyper activity disorder. Alcohol Clinical and Experimental Research, 21, 150 161. 29. Ornoy, A. (2003) The impact of intra uterine exposure versus environment in neuro developmental toxicity. Toxicology Letter, 11, 171 181. 30. Pollock, P. H. and Percy, A. (1999) Maternal antenatal attachment style and potential fetal abuse. Child Abuse and Neglect, 23, 1345 1357. 31. van Os, J. and Selten, J. P. (1998) Prenatal exposure to maternal stress and subsequent schizophrenia: the May 1940 invasion of the Netherlands. British Journal of Psychiatry, 172, 183. 32. Laplante, D. P., Brunet, A., Schmitz, N. et al. (2008) Project Ice Storm: prenatal maternal stress affects cognitive and linguistic functioning in 5 12 year old children. American Academy of Child and Adolescent Psychiatry, 47, 1063 1072. 33. Bleuler, M. (1974) Offspring of schizophrenics. Schi zophrenia Bulletin, 8, 93 107. 34. Melle, I. and Johansen, R. (2002) The invisible chil dren when mother or father has schizophrenia. Tidskar Norge Laegeforen, 30, 2299 2302. 35. Valaikalayil, A., Paulson, L. and Tibbo, P. (2004) Burden in adolescent children of parents with schizo phrenia. The Edmonton High Risk Project. Social Psychiatry and Psychiatric Epidemiology, 39, 528 535. 36. Ostman, M. and Hansson, I. (2002) Children in families with a severe mentally ill member: prevalence and need for support. Social Psychiatry and Psychia tric Epidemiology, 37, 243 248. 37. Williams, R. and Pritchard, C. (2006) Breaking the Cycle of Educational Alienation, Open University Press.

493

38. Cazas, O. (2007) Psychotic women and motherhood: What risks for the child? Gynaecology, Obstetrics and Fertility, 35, 1055 1059. 39. Wan, M. W., Salmon, M., Riordan, D. et al. (2007) What predicts mother infant interaction in schizo phrenia. Psychological Medicine, 37, 537 546. 40. Abel, K. M., Webb, R. T., Salmon, M. et al. (2005) Prevalence and predictors of parenting outcomes in a cohort of mothers with schizophrenia admitted for joint mother and baby psychiatric care in England. Journal of Clinical Psychiatry, 66, 808 809. 41. Baloobal, N. S., Lallas, S., Chai, M. and Smith, C. (2007) Childhood sexual abuse amongst outpatients attending a psychiatric clinic: case controlled study. West Indian Medical Journal, 56, 152 158. 42. Gladstone, G. L., Parker, G., Mitchell, P. et al. (2004) Implications of childhood trauma for depressed women: an analysis of pathways from childhood sex ual abuse to deliberate self harm and victimisation. American Journal of Psychiatry, 161, 1417 1425. 43. Peleikis, D. F., Mykletun, A. and Dahl, A. A. (2004) The relative influence of childhood sexual abuse and other family background risk factors on adult adver sities in female outpatients treated for anxiety disor ders and depression. Child Abuse and Neglect, 28, 61 76. 44. Street, K., Whitlingum, P., Cairns, P. and Ellis, M. (2008) Is adequate parenting compatible with maternal drug use: a 5 year follow up. Child Care and Health Development, 34, 204 206. 45. Wu, S. S., Ma, C., Carter, R. et al. (2004) Risk factors in infant maltreatment: a population based study. Child Abuse and Neglect, 28, 1253 1264. 46. Kogan, S. M. (2004) Disclosing unwanted sexual experiences: results from a national sample of adoles cent women. Child Abuse and Neglect, 28, 147 165. 47. Hawton, K., Roberts, J. and Goodwin, G. (1985) The risk of child abuse amongst mothers who attempt suicide. British Journal of Psychiatry, 146, 486 489. 48. Beckinsale, P., Martin, G. and Clark, S. (1999) Sexual abuse and suicidal issues in Australian young people: an intrim report. Australian Family Physician, 28, 405 406. 49. Makhija, N. J. (2007) Childhood abuse and adolescent suicidality: a direct and indirect link through alcohol and substance abuse. Internal Journal of Adolescent Medicine Health, 19, 45 51.

494

SOCIAL INTERVENTIONS

50. Salzinger, S., Rosario, M., Feldman, R. and Ng Mak, D. S. (2007) Adolescent suicidal behaviour: associa tions with pre adolescent physical abuse and selected and protective risk factors. Journal of American Academy of Child and Adolescent Psychiatry, 46, 859 866. 51. Tyler, K., Whitbeck, L., Hoyt, D. and Cauce, A. (2004) Risk factors for sexual victimisation among male and female homeless and runaway youth. Journal of Inter personal Violence, 19, 503 520. 52. Johnson, J. G., Cohen, P., Chen, H. et al. (2006) Parenting behaviours associated with risk of off spring personality disorder during adulthood. Archives of General Psychiatry, 63, 579 587. 53. Johnson, R. J., Rew, L. and Kouzekanani, K. (2006) Gender differences in victimised homeless adoles cents. Adolescence, 41, 39 53. 54. Pritchard, C. and Williams, R. (2009) Comparison of former looked after children and excluded from school adolescents as young men: subsequent suicide and criminality. Journal of Social Work, 14, 285 307. 55. Gulliver, P., Dow, N. and Simpson, J. (2005) The epidemiology of home injuries to children under five in New Zealand. Australian and New Zealand Journal of Public Health, 29, 29 34. 56. Moore, A. (2005) Changing patterns of childhood mortality in Wolverhampton. Archives of Diseases of Childhood, 90, 687 691. 57. Reimers, A. and Laflamme, L. (2005) Neighborhood social and socio economic composition and injury risks. Acta Paediatrica, 94, 1488 1494 58. Schnitzer, P. G. and Ewigman, B. G. (2005) Child deaths resulting from inflicted injuries: household risk factors and perpetrator characteristics. Pediatrics, 116, 687 693. 59. Bjornstig, U., Bjornstig, J., Ahlm, K. et al. (2006) Violent deaths in all children in Northern Sweden. International Journal of Circumpolar Health, 65, 28 34. 60. Gill, J. R., Morotti, R., Tranchisa, V. and Mena, H. (2008) Delayed homicides due to infant head injury initially reported as natural deaths. Pediatric and Developmental Pathology, 11, 39 45. 61. Freisthler, B., Gruenwald, P., Ring, L. and Lascala, E. A. (2008) An ecological assessment of the population and environment correlates with childhood accidents, and child abuse injuries. Alcohol. Clinical and Experi mental Research, 32 (11), 1969 1975.

62. Pritchard, C. and Sharples, A. (2008) Violent deaths of children in England and Wales compared to the major developed countries 1974 2002: possible evidence for improving child protection? Child Abuse Review, 17, 297 312. 63. Everson, M. D., Smith, J., Hussey, J., English, D. et al. (2008) Concordance between adolescent reports of childhood abuse and child protective services records. Child Maltreatment, 13, 14 26. 64. Oliver, J. (1988) Successive generations of child mal treatment. British Journal of Psychiatry, 153 (3), 543 553. 65. Quinton, D. and Rutter, M. (1988) Parenting Break down: The Making and Breaking of Inter Generational Links, Avebury, Aldershot. 66. Boetang, P. (2000) Foreword, in National Strategy for Neighbourhood Renewal, Policy Action Team, HMSO, London. 67. Audit Commission (2004) Misspent Youth Revisited, London, Home Office. 68. Pritchard, C. (2001) The psychosocial impact of child abuse: re discovering the poverty and psychiatric dimensions. Community Mental Health, 1 (1), 1 8. 69. Pritchard, C. (1991) Levels of risk of abuse in sixty families on an ‘At Risk’ register: towards a tentative outcome result. Research Policy and Planning, 9 (2), 19 26. 70. Pritchard, C. and Williams, R. (2001) A three year comparative longitudinal study of a school based social work family service to reduce truancy, delin quency and school exclusions. Journal of Social Wel fare and Family Law, 23, 1 21. 71. Pritchard, C. and Cox, M. (2007) Comparisons of problematic behaviour of 10th and 11th year Southern English adolescents. Part 1. Trends in gender beha viour. International Journal of Adolescent Medicine Health, 19, 127 140. 72. Pritchard, C. (2006) Mental Health Social Work: Evidence Based Practice, Routledge, Abingdon and New York. 73. Chanen, A. M., McCutcheon, L., Jovey, M. et al. (2007) Prevention and early intervention for boarder line personality disorder. Medical Journal of Austra lia, 187, S18 S21. 74. Coid, J., Yang, M., Roberts, A. and Singleton, N. (2007) Violence and psychiatric morbidity in a national household population: a report from the

THE PSYCHIATRIC–CHILD PROTECTION INTERFACE: RESEARCH TO INFORM PRACTICE

75.

76.

77.

78.

79.

80.

81.

82.

83.

84.

British Household Survey. American Journal of Epi demiology, 164, 1199 1208. Yang, M. and Coid, J. (2007) Gender differences in psychiatric morbidity and violent behaviour among a household population in Great Britain. Social Psychiatry and Psychiatric Epidemiology, 42, 599 605. Taylor, S., Jang, K., Stewart, S. and Stein, M. (2008) Etiology of the dimensions of anxiety sensitivity: a behavioural genetic analysis. Journal of Anxiety Dis order, 22, 899 914. Frick, P. J. and White, S. F. (2008) Research review: the importance of ‘callous unemotional’ traits for devel opmental models of aggressive and anti social beha viour. Journal of Child Psychology and Psychiatry, 49, 359 375. Pardini, D., Lochman, J. and Powell, N. (2007) The development of the ‘callous unemotional’ traits and anti social behaviour in children: Are there shared and/ or unique predictors? Journal of Clinical Child Ado lescent Psychology, 36, 319 333. Johnson, J. G., Smailes, E., Cohen, P. et al. (2000) Associations between four types of childhood neglect and personality disorders: findings of a community based longitudinal study. Journal of Personality Dis order, 14, 171 187. MacMillan, H., Fleming, J., Streiner, D. L. et al. (2001) Childhood abuse and lifetime psychopathology in a community sample. American Journal of Psychiatry, 158, 1878 1883. Bierer, L. M., Yehuda, R., Schmeidler, J. et al. (2003) Abuse and neglect in childhood: relationship to per sonality disorder diagnosis. CNS Spectator, 8, 724 734. Battle, C. L., Shea, T., Johnson, D. M. et al. (2004) Childhood maltreatment associated with adult personality disorders: longitudinal personality disorder study. Journal of Personality Disorder, 18, 193 211. Bandelow, B., Krause, J., Wedekind, D. et al. (2005) Early traumatic events, parental attitudes, family his tory and birth risk factors in patients with border line personality disorders and health controls. Psychiatry Research, 15, 169 179. Lee, R., Geracioti, T., Kasckow, J. and Coccaro, E. F. (2005) Childhood trauma and personality disorder: positive correlation with adult CSF corticotrophin releasing factor concentrations. American Journal of Psychiatry, 162, 995 997.

495

85. Grover, K., Carpenter, L., Price, L. et al. (2007) The relationship between childhood abuse and adult per sonality disorder symptoms. Journal of Personality Disorder, 21, 442 447. 86. Sourander, A., Jensen, P., Davis, M. et al. (2007) Who is at greatest risk of adverse long term outcomes? The Finnish from a boy to a man study. Journal of Amer ican Academy of Child and Adolescent Psychiatry, 46, 1148 1161. 87. Colleshaw, S., Pickles, A., Rutter, M. et al. (2007) Resilience to adult psychopathology following child hood maltreatment: evidence from a community sam ple. Child Abuse and Neglect, 31, 211 229. 88. Cox, R. and Holmes, W. (2001) A study of the cycle of abuse amongst child molesters. Journal of Child Sex ual Abuse, 10, 111 118. 89. Briere, J. and Elliott, D. M. (2003) Prevalence and psychological sequelae of self reported childhood physical and sexual abuse in a general population sample of men and women. Child Abuse and Neglect, 27, 1205 1222. 90. Burton, D. L. (2008) An explanatory evaluation of the contribution of personality disorder and childhood victimisation to the development of sexually abusive behaviour. Sexual Abuse, 20, 102 115. 91. Stirling, J., Amaya Jackson, L. and Amaya Jackson, I. (2008) Understanding the behavioural and emotional consequences of child abuse. Pediatrics, 122, 667 673. 92. Craissati, J., McClurg, G. and Browne, K. (2002) Characteristics of perpetrators of child sex abuse who have been sexually abused as children. Sexual Abuse, 14, 225 239. 93. Pritchard, C., Diamond, I., Fielding, M. et al. (1986) Incidence of drug and solvent abuse in ‘normal’ 4th and 5th year comprehensive school children. Some socio behavioural characteristics. British Journal of Social Work, 16 (3), 1 11. 94. Salter, D., McMillan, D., Richards, M. et al. (2003) Development of sexually abusive behaviour in sexu ally victimised males: a longitudinal study. Lancet, 361, 471 476. 95. Parton, N. (2004) From Maria Colwell to Victoria Climbe. Reflections on public inquiries into child abuse. Child Abuse Review, 13 (1), 80 94. 96. Toynebee, P. (2008) This frenzy of hatred is a disaster for children at risk. Guardian, 17 November, p. 35.

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SOCIAL INTERVENTIONS

97. Carter, H. and Laville, S. (2008) Doctor alerted police to distressed mother hours before the killings. Guar dian, 14 November, p. 14. 98. Kempe, C. and Kempe, H. (1998) Child Abuse, University of Chicago Press, Chicago, Illinois. 99. Naso, C., Jenkins, A. and Younger, D. (2008) A study of drug detection in post mortem paediatric population. Journal of Forensic Science, 53, 483 490. 100. Pritchard, C. and Sayers, T. (2008) Exploring potential extra family child homicide assailants in the UK and estimating their homicide rate: perception of risk and the need for debate. British Journal of Social Work, 38, 290 307. 101. Wilson, A. L. (2008) The state of South Dakota’s child 2007, Part II: death during childhood. South Dakota Medicine, 61, 47 51. 102. Cavanagh, K., Dobash, R. and Dobash, R. P. (2007) The murder of children by fathers in the context of child abuse. Child Abuse and Neglect, 31, 731 746. 103. Pritchard, C. and Bagley, C. (2000) Multi criminal and violent groups among child sex offenders: a heuristic typology in a 2 year cohort of 374 men in two English counties. Child Abuse and Neglect, 24, 579 586. 104. Wilczynski, A. and Morris, A. (1993) Parents who kill children. Criminal Law Review, 8, 31 36. 105. Braithwaite, R. (2001) Managing Aggression, Routle dge, London. 106. Collins, R. (2008) Violence: A Micro Sociological Theory, Princeton University Press, Princeton, New Jersey. 107. Coid, J. (1983) The epidemiology of abnormal homi cide followed by suicide. Psychological Medicine, 13, 855 860. 108. Logan, J., Hill, H. A., Black, M. et al. (2008) Char acteristics of perpetrators in homicide followed by suicide incidents: National Violent Deaths Reporting System 17 US States 2003 05. American Journal of Epidemiology, 168, 1056 1064. 109. Shackelford, T., Weekes Shackleford, A. and Beasley, S. L. (2008) Filicide suicide in Chicago. Journal of Interpersonal Violence, 23, 589 599. 110. Chan, C. Y., Beh, S. and Broadbent, R. G. (2004) Homicide suicide in Hong Kong. Forensic Science International, 10, 261 267. 111. Gupta, B. D. and Singh, O. G. (2008) A unique trend in murder suicide in the Jamnagar region of Gurarat: a

112.

113.

114.

115.

116.

117.

118.

119.

120.

121.

retrospective study of 5 years. Journal of Forensic Legal Medicine, 15, 250 255. Beauregard, E., Stone, M., Proulx, J. and Michaud, P. (2008) Sexual murders of children: developmental, pre crime, crime and post crime factors. International Journal of Offender Therapy and Comparative Crim inology, 52, 253 269. Richard Devantoy, S., Chocard, A., Boyer Richard, A. et al. (2008) Homicide and psychosis: criminological particularities of schizophrenics, paranoics and mel ancholics. A review of 27 expertises. Encephele, 34, 322 329. Becket, R., Beech, A., Fishers, D. and Fordham, A. S. (1994) Community Based Treatment Programme for Sex Offenders: An Evaluation of Seven Treatment Programmes, Home Office, London. Keeling, J. A., Rose, J. L. and Beech, A. R. (2007) Comparing sexual offenders efficacy: mainstream sex offenders and sex offenders with special needs. Jour nal of Intellectual and Development Disability, 32, 117 124. McGrath, R. J. M., Livingston, J. and Falk, G. (2007) Community management of sex offenders with intel lectual disabilities: characteristics, services and out comes. Intellectual Development and Disability, 45, 391 398. Pritchard, C. (1992) Changes in children’s homicide in England and Wales and Scotland 1973 1988 as an indicator of effective child protection: a comparative study of Western European statistics. British Journal of Social Work, 22 (6), 663 684. Pritchard, C. (1996) Indicators of effective child pro tection: a re analysis of international child homicide 1973 92 in a reply to Lindsey and Trocme, and Macdonald. British Journal of Social Work, 26, 545 563. Pritchard, C. and Sharples, A. (2008) All causes and violent deaths of children (0 14) in England and Wales 1974 2002 compared to the other major Western nations: indicators of improved child protection? International Journal of Child Health and Human Development, 1, 85 96. UNICEF (2001) Child Deaths by Injury in Rich Nations, Florence, Innocenti Research Centre, Report No. 2, United Nations Children Fund. Webb, R. T., Pickles, A., Appleby, L. et al. (2007) Death by unnatural causes during childhood and early adulthood in off spring of psychiatric patients. Archives of General Psychiatry, 35, 74 82.

THE PSYCHIATRIC–CHILD PROTECTION INTERFACE: RESEARCH TO INFORM PRACTICE

122. Pritchard, C. and King, E. (2004) Comparing child sex abuse related and mental disorder related suicide in a six year cohort of regional suicides. The impor tance of the child protection psychiatric interface. British Journal of Social Work, 34, 181 197. 123. Pritchard, C. and King, E. (2005) Suicide in typologies of male child sex abusers. Archives of Suicide Research, 9, 35 44. 124. Meadow, R. (2002) Different interpretations of Munchausen syndrome by proxy. Child Abuse and Neglect, 26, 501 508. 125. Feldman, M. and Brown, R. (2002) Munchausen syndrome by proxy in an international context. Child Abuse and Neglect, 26, 509 524. 126. McClure, R., Davies, P., Meadow, S. and Sibert, J. (1996) Epidemiology of Munchausen’s Syndrome by Proxy: non accidental poisoning and suffocation. Archives of Diseases of Childhood, 75, 57 61.

497

127. d’Orban, P. (1990) Female homicide. Irish Journal of Psychological Medicine, 7 (1), 64 70. 128. Stroud, J. (2003) Psychosocial Antecedents of Women Who Have Killed Children, PhD Thesis, Goldsmiths College, University of London. 129. Friedman, S. H., Hrouda, D., Holden, E. et al. (2005) Child murder committed by severely mentally ill mothers: an examination of mothers found not guilty by reason of insanity. Journal of Forensic Science, 50, 1466 1471. 130. Dil, L. M., Dorelejers, T. and Schovers, R. A. (2008) Filicide; psychiatric disorders in parents who murder their children: a review of the literature. Tijdschir Psychiatrie, 50, 263 272. 131. Kauppi, A., Kumpulainen, K., Karkola, K. et al. (2008) Maternal depression and filicide case study of ten mothers. Archives of Women’s Mental Health, 11, 201 206.

Part Six Global mental health

38 Mental health in Europe: learning from differences Mirella Ruggeri and Maria Elena Bertani Department of Medicine and Public Health, University of Verona, Italy

38.1

INTRODUCTION

One in four of European citizens will suffer from a mental health problem during their lifetime. More than 27% of adult Europeans are estimated to experience at least one form of mental ill-health during any one year, the most common being anxiety disorders and depression [1]. In Europe mental disorders account for 20% of disability and, according to the World Health Organization [2], by the year 2020, depression is expected to be the highest ranking cause of disease in the developed world. In spite of these data, the organization and funding for mental health services is widely heterogeneous throughout Europe and can be considered far from satisfactory. Europe itself is a puzzle of different cultures, socioeconomic conditions, environmental situations and health organizations. This notwithstanding, the last decades of the twentieth century and the beginning of the twentyfirst have witnessed an historic attempt to unify this continent under common principles and initiatives, while respecting each state’s autonomy. The constitution of the European Union has taken place in four major steps which have had a profound

influence in depicting the priorities and the problems for mental health in Europe: (1) the Maastricht treaty in 1992 founded the European Union (EU) with the inclusion of 12 Member States: Belgium, France, Germany, Luxemburg, Holland, Denmark, Ireland, Italy, United Kingdom, Greece, Spain and Portugal; (2) in 1995 Sweden, Finland and Austria entered the EU; (3) in 2004 Cyprus, Estonia, Latvia, Lithuania, Malta, Poland, Czech Republic, Slovakia, Slovenia and Hungary entered the EU; and (4) Bulgaria and Romania finally entered in 2007. Thus, in 2009 the European Union was constituted by 27 State Members, while a further 25 States belonged to the geographic area of Europe. In the World Health Report entitled Mental Health: New Understanding, New Hope, the WHO provided 10 recommendations for action [2]. These cover a variety of topics ranging from care for the mentally ill in primary health services, the availability of psychotropic drugs, stakeholder involvement, the importance of education and human resources to the issue of integration with other services, and monitoring and research. At the WHO European Ministerial Conference on

Principles of Social Psychiatry, second edition Edited by Craig Morgan and Dinesh Bhugra Ó 2010 John Wiley & Sons, Ltd.

502

GLOBAL MENTAL HEALTH

Mental Health, held in Helsinki in January 2005, the Mental Health Declaration for Europe (http://www. euro.who.int/document/mnh/edoc06.pdf) and the Mental Health Action Plan for Europe (http://www. euro.who.int/document/mnh/edoc07.pdf) were signed and endorsed on behalf of ministers of health of the 52 Member States in the European Region. These key documents give impetus to the development of mental health care in the European region and aim to support the implementation of policies and activities to improve mental health promotion, prevention, care and treatment. They centre on 12 key areas of action: (1) promoting mental well-being for all; (2) demonstrating the centrality of mental health; (3) tackling stigma and discrimination; (4) promoting activities sensitive to vulnerable life stages; (5) preventing mental health problems and suicide; (6) ensuring access to good primary care for mental health problems; (7) offering effective care in community-based services for people with severe mental health problems; (8) establishing partnerships across sectors; (9) creating a sufficient and competent workforce; (10) establishing good mental health information; (11) providing fair and adequate funding; and (12) evaluating effectiveness and generating new evidence. In June 2008, the European Commission (EC) hosted a High-Level Conference to discuss the establishment of a new European Pact for Mental Health (http://ec.europa.eu/health/ph determinants/life style/ mental/docs/pact en.pdf). The new approach recognizes that the primary responsibility for action still rests with Member States and other stakeholders, but envisages an active role for the Commission to inform, complement and encourage actions by these players, building coalitions for action across different sectors, with a focus on five key themes: (1) prevention of suicide and depression, (2) youth and education, (3) workplace settings, (4) the mental health of older people and (5) combating stigma/social exclusion. If successful, this Pact process, with its emphasis on facilitating multisector dialogue and cooperation

38.2

between stakeholders in both the public and private sectors, may provide a useful blueprint for those seeking to collaborate to reform mental health systems elsewhere [3]. This chapter comprises seven parts, focusing on the main characteristics of mental health policies, legislation, funding, service organization, resources, promotion of mental health and some other key data aimed to link quantity of service provision with quality and patient outcomes; it also enlightens the networking capabilities that exist in Europe in the field of mental health. In doing this we will explore differences within and between five main groups of European countries: Group A: constituting the 15 countries that entered the EU by 1995; Group B1: constituting the 10 countries from eastern Europe that entered the EU between 2004 and 2008; Group B2: constituting Cyprus and Malta, which entered the EU in 2004 but, for geographical and historical reasons, should more appropriately be considered in a different group from B1; Group C1: constituting the 19 eastern and southern European countries of the EU region that are not in the EU; Group C2: constituting Andorra, Iceland, Israel, Monaco, Norway, San Marino and Switzerland, which also did not enter the EU but, for geographical and historical reasons, should more appropriately be considered in a different group from C1. The main axes for this work will be the data reported and adapted from the Mental Health Atlas [4] plus further information derived from the literature and various Web-based searches.

FUNDS, RESOURCES AND COSTS OF MENTAL HEALTH SERVICES

Within Europe there is a high variability in income among countries. Figure 38.1 shows the proportion of

countries in the low (L), low-medium (LM), highmedium (HM) and high (H) ranges of Gross Domestic

MENTAL HEALTH IN EUROPE: LEARNING FROM DIFFERENCES

Group A

Group B1

Group B2

15 countries that entered into the EU within 1995

10 countries from eastern Europe that entered in the EU in 2004-2008

Cyprus and Malta that entered the EU in 2004 but for geographical and historical reasons considered in a different group from B1

High income High medium income Low medium income Medium income Low income

Group C1 19 eastern and southern European countries of the EU region that are not in the EU

503

Group C2 constituted by Andorra, Iceland, Israel, Monaco, Norwegia, San Marino, Switzeland also did not enter the EU but, for geographical and historical reasons, should more appropriately be considered in a different group from C1.

Figure 38.1 Income characteristics in the countries belonging to the European region (World Bank). Data are taken from Reference [4], modified

Product (GDP) according to World Bank estimations in each of the five groups of European Countries given above. As shown in Figure 38.1 and detailed in Tables 38.1 and 38.2, large disparities are found throughout Europe: in fact, among the EU Member States, only Bulgaria and Romania are in the low-medium income group, while the other eastern countries are in the medium-high, with the exception of Slovenia, which is in the high income group. In contrast, among European countries that do not belong to the EU, five have a low income (Albania, Kyrgystan, Moldova, Tajikistan and Ubekistan). In comparison with other regions of the world, the availability of resources for mental health care in Europe is generally at the highest level, after the US. For example, in the European region, the specified budget for mental health care as a proportion of the total health budget was <1% in only 2% of countries, whereas this proportion was 17% across the world (all regions), which implies that a dramatic funding shortage in mental health care applies to European countries much less frequently than in other regions of the world [4]. However, resource levels vary widely within the European region, with a number of eastern European countries in a more difficult situation concerning mental health funds [5]. As evidence from Tables 38.1 and 38.2 (left-hand columns) shows, six EU Member States (Austria, Greece, Spain, Estonia, Poland and Slovenia) and 9 further countries outside the EU (Belarus, Bosnia-Herzegovina, Iceland, Russian Federation, San Marino Republic, Tajikistan, Turkey, Turkmenistan, Ukraine and Switzerland) did

not have a specific budget dedicated to mental health in 2005. Overall, when a specific budget was dedicated to mental health, there was a large variability among countries. In the EU Member States the range varies from 0.0 to 13.4% of the total health budget, with a mean of 5.8% in states that entered the EU before 1995, this being the highest value found among the different groups of countries within the European region. As Figures 38.2 and 38.3 show, in the five different groups of countries within the European region, there are remarkable differences concerning the proportion of the health budget dedicated to mental health (see Figure 38.2). Figure 38.3 shows that, when considering the proportion of per capita total expenditure on health and the budget for mental health, the differences between Group A countries, on the one hand, and Groups B1 (eastern countries belonging to the EU) and C1 (western and southern European countries not belonging to the EU) countries, on the other, are even more remarkable, due to the very low health budget per capita assigned in the latter two groups. The data confirm that share of health care funding is heterogeneous and, basically, that initiatives designed are generally underfunded. The question of equitable funding was recently addressed by the EC-supported Mental Health Economics European Network (www. mheen.org), which sought to estimate the level of health care expenditure on mental health across 32 European countries. It came to the conclusion that available funds were modest at best, despite the ever-increasing evidence of cost-effective interventions [6,7].

504

Income (World Bank)

Funds for health (% GDP)

Funds for MH (%health budget)

Total number of beds (10 000 inhabitants)

(a) Austria Belgium Denmark Finland France Germany Greece Ireland Italy Luxemburg Netherlands Portugal Spain Sweden UK Mean (range)

H H H H H H H H H H H H H H H

8 8.9 8.4 7 9.6 10.8 9.4 6.5 8.4 6 8.9 9.2 7.5 8.7 5.8 8.2 (6 10.8)

No 6 P P 8 P No 6.8 3.5 13.4 7 2.3 No 11 10 5.8 (0 13.4)

6.5 22.1 0.7 10 12 7.5 8.7 9.43 4.63 10.5 18.7 7.5 4.4 6 5.8 8.9 (0.7 22.1)

(b) Bulgaria Czech Republic Estonia Hungary Latvia Lithuania Poland Romania Slovakia Slovenia Mean (range)

LM HM

4.8 7.4

2.5 3

8.3 11.4

HM HM HM HM HM LM HM H

5.5 6.8 6.4 6 6.1 6.5 5.7 8.4 6.3 (4.8 8.4)

No 8 6.3 7 No 3 5 No 3.5 (0 8)

H H

8.1 8.8 8.4

7 10 8.5

Country

(c) Cyprus Malta Mean

Beds in MH (10 000 inhabitants)

Beds in GH (10 000 inhabitants)

4.5 12.9

2 2.6

0 7 4.5 4.3 7.45 0 7.5 15.4 1.5 3.7

9 3 2.9 0.3 1.86 0.92 3 1 1 0.6 6

5.7 (0 15.4)

2.6 (0.3 9)

4.1 9.8

1.9 1.5

10.2 8 2.1 9.6 2.3 7.2 13.8 13.5 0.3 10 8.6 1.1 7.8 5.2 1.2 7.6 5.5 2 9 6 3 8.46 7.2 1.26 9.61 (8.3 13.8) 7 (2.3 13.5) 2.15 (0.3 7.2) 5.2 18.9 12

4.5 18.86 11.7

0.6 0.04 0.3

Beds in other settings (10 000 inhabitants)

Number of psychiatrists/ 100 000 inh

Number of nurses/ 100 000 inhabitants

Number of psychologists/ 100 000 inhabitants

Number of social workers/ 100 000 inhabitants

0 6.6 7.5 1 2

37.8

49

103.4

59 180 98 52 3 136 32.9 35 99 10.1 4.2 32 104 63 (3 180)

85 79 5 51.5 14 12.71 3.2 28 28 2 1.9 76 9 31.7 (2 85)

7 150

2.8 (0 7.5)

11.8 18 16 22 22 11.8 15 6.82 9.8 12 9 4.7 3.6 20 11 12.2 (3.6 22)

2.3 0.2

9 12.1

15 33

0.9 4.9

0.3

0 0.1 0 0.3 0.6 0.2 0 0 0.37 (0 2.3)

13 9 10 15 6 4.1 10 5.35 9.3 (4.1 15)

0 19 40 36 18.4 8.9 32 5.8 20.8 (0 36)

2 2 5 3.4 4.5 3 1.65 3 (0.2 4.9)

1 0.5

1 0.45 0.6 (0.3 1)

0 0 0

5 4 4.5

45 102 73.5

19.3 2.6 10.9

25 3.1 14

4.1 1.28 3.7 0 2.3 4.9 0.1

477 56 47.7 6.4 35 176 1.6

58 101.6 (1.6 477)

0.6

GLOBAL MENTAL HEALTH

Table 38.1 Income, funds and resource characteristics in: (a) the 15 countries that entered the EU between 1995 and 1997 (upper part); (b) the 10 eastern countries (middle part); and (c) the 2 islands with specific geographic and historical characteristics that entered the EU in 2004 2007 (bottom part). Data are taken from Reference [4], modified. MH ¼ mental hospitals; GH ¼ general hospitals; H ¼ high income; M ¼ medium; L ¼ low; GDP ¼ gross domestic product; P ¼ present but detail not available

Table 38.2 Funds and resource characteristics in: (a) eastern and southern European countries that have not entered the EU (upper part) and (b) non EU European countries with specific geographic and historical characteristics (bottom part). Data are taken from Reference [4], modified. MH ¼ mental hospitals; GH ¼ general hospitals; H ¼ high income; M ¼ medium; L ¼ low; GDP ¼ gross domestic product; P ¼ present but detail not available

Country

(b) Andorra Iceland Israel Monaco Norway San Marino Switzerland Mean (range)

Total beds (10 000 inhabitants)

Number of Number of Number of Number of psychologists/ Beds in Beds in Beds in other psychiatrists/ 100 000 social workers/ 100 000 nurses/100 000 MH (10 000 GH (10 000 settings (10 000 inhabitants 100 000 inhabitants inhabitants inhabitants inhabitants) inhabitants) inhabitants)

L LM M LM LM

3.7 7.8 1.6 5.6 7.5

6 4.5 1.6 No No

2.5 4.8 7.1 8 3.6

2 4.78 6.9 7.5 2.4

0.5 0.02 0.11 0.5 1

0 0 0.09 0 0.2

2.2 4 5 10.1 1.8

HM LM LM L LM L LM

9 3.6 3.1 4 6.8 5.7 5.4

P P 7 7.9 P 6.5 No

10.06 2.1 6.5 6.25 8.2 6.7 11.5

8.02 2 5.9 5.62 6.2 5.9 10.1

0.98 0 0.2 0.63 2 0.8 0.5

1.06 0.1

8.7 6 6 4.5 7.5 9 13.3

L LM LM LM L

3.3 5 4.1 4.3 3.6 4.9 (1.6 9)

No No No No 4.6 2.7 (0 7.9)

2.47 1.3 3.5 9.6 3.1 5.7 (1.3 10) 5.1

2.47 0.8 3.2 9.3 3 (0.8 10) 0.5

0.5 0.3 0.3 0.1 (0.02 2)

H H H H H H H

5.7 9.2 8.7 7.6 8 6.8 11 8 (5.7 11)

3.9 no 6.2 P 0.1 No No 1.7 (0 6.2)

1.6 5 8.1 17.27 12 3.8 13.2 8.7 (1.6 17.2) 3.4

0 0 7.6 0

1.6 5 0.4 17.27

0 3.8 13.2 0 (0 13.2) 4.6 (0 17.27)

0 0 0.1 1

0

0 0.3 (0 1.06) 0 0 0.1 0 0 0 0.01 (0 0.1)

1.8 1 3 8.9 3.3 5.6 (1 13.3) 10 25 13.7 28.5 20 15 23 19.3 (10 28.5)

4.2 0 3.9 25.6 10

0.2 0.4 0.2 1.14 0.5

24

0.4 0.08 0.3 0 0.03

0

13.7 24 30.5 50

0.1 0.4 2 0.7 1.9

? 1.5 0.5 1.2

3.6 3

0.1 1

1

34 7.2 16.7 (0 34)

0.06 0.05 0.6 (0.05 2)

0.4 0.1 0.4 (0 1.5)

9 33 10.7

30 60 35.6 33 68 96 40.8 51.9 (30 96)

26 110 5.18 81

42 0 46 23.4 (0 46)

54 106 63.6 (5.18 110)

MENTAL HEALTH IN EUROPE: LEARNING FROM DIFFERENCES

(a) Albania Armenia Azerbaijan Belarus BosniaHerzegovina Croatia Georgia Kazakhstan Kyrgystan Macedonia Moldova Russian Federation Tajikistan Turkey Turkmenistan Ukraine Uzbekistan Mean (range)

Income Funds Funds for (World for health MH (% health Bank) (% GDP) budget)

505

506

GLOBAL MENTAL HEALTH

Figure 38.2 Budget for mental health as a proportion of total health budget in five different groups of countries. Dots under the 0 line represent countries that do not have a specific budget for mental health. Data are taken from Reference [4], modified

Figure 38.3 Budget for mental health as a proportion of total health budget per capita in five different groups of countries. Dots under the 0 line represent countries that do not have a specific budget for mental health. Data are taken from Reference [4], modified

MENTAL HEALTH IN EUROPE: LEARNING FROM DIFFERENCES

507

Table 38.3 Policies, legislation and models of community care in: (a) the 15 countries that entered the EU between 1995 and1997 (upper part); (b) the 10 western countries; and (c) the 2 islands that entered the EU in 2004 2007 (bottom part). Data are taken from Reference [4], modified Formulation of MH policy (year)

Formulation of national MH programme (year)

Year of initiation of the latest law in the field of MH

Presence of community care facilities

(a) Austria Belgium Denmark Finland France Germany Greece Ireland Italy Luxemburg Netherlands Portugal Spain Sweden UK

1999 1988 1991 1993 1960 1975 1983 1984 1994 1995 1999 1995 1985 Absent 1998

1997 1990 1997 1999 1985 Absent 1984 Absent 1999 1991 1999 1996 Absent Absent 1999

1997 2000 2002 1990 2005 1999 1999 2001 1998 2000 2000 1994 1998 1986 2000 Proposal to reform

Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes

(b) Bulgaria Czech Republic Estonia Hungary Latvia Lithuania Poland Romania Slovakia Slovenia

2004 1953 2002 2001 2004 1993 1995 1998 Absent Absent

2001 1953 Absent 2001 2004 1999 1995 1999 1995 Absent

1973 1966? 1997 1997 1997 1995 1994 2002 2004 1999

No Yes Yes Yes Yes Yes Yes No Yes Yes

1985 1994

1995 Yes (details not available)

1997 1981

Yes Yes

Country

(c) Cyprus Malta

The personal, social and economic impacts of poor mental health can be profound. The economic costs of poor mental health have been estimated at 386 billion euros (2004 prices) in the EU countries, plus Norway, Iceland and Switzerland [8]. Costs of lost productivity from employment can account for as

38.3

much as 80% of all costs of poor mental health [9]. Other impacts outside the health system can include poor personal relationships and strain on families [10 12], a higher than average risk of homelessness [13] and increased contact with the criminal justice system.

POLICIES, LEGISLATION AND MODELS OF PSYCHIATRIC CARE

According to the Atlas [4], governments in 70.1% of countries in the European region, which covers

89.1% of the population, have developed mental health policies, and this compares favourably

508

GLOBAL MENTAL HEALTH

Table 38.4 Policies, legislation and models of community care in: (a) the eastern and southern European countries that have not entered the EU (upper part) and (b) non EU European countries with specific geographic characteristics (bottom part). Data are taken from Reference [4], modified

Country

Formulation of MH policy (year)

Formulation of national MH programme (year)

Year of the latest reform law in the field of MH

Presence of community care

Absent 1994 Absent Absent 1996

Yes (details not available) Absent Absent Absent 1996

1996 2004 2001 1999 2000

Yes Yes Yes Yes (partially developed) Yes (partially developed)

(a) Albania Armenia Azerbaijan Belarus Bosnia Herzegovina Croatia Georgia Kazakhstan Kyrgystan Macedonia Moldova Russian Federation Tajikistan Turkey Turkmenistan Ukraine Uzbekistan

Absent 1999 1997 2000 Absent 2000 1995

Absent 1995 Absent 2000 Absent Absent 1995

1997 1995 1997 1999 ? 1998 1992

Yes No Details not available No Yes No Yes

Absent 1983 1995 1988 1993

Absent A 1987 Absent Absent Absent

Details not available

No No

(b) Andorra Iceland Israel Monaco Norway San Marino Switzerland

Absent Absent 1999 1995 1997 Absent Absent

Absent 2001 Absent Details not available 1999 Absent Absent

with the world average of 62.1%. As shown in Tables 38.3 and 38.4, these policies are relatively recent, most having been established after 1990. Community care facilities are widely available in Europe (overall in 79.2% of countries, and specifically in 99% of the EU and 60% of the non-EU countries), and these estimates compare favourably with the other continents, including the Americas (75%). In 2005, among EU Member States, only Bulgaria and Romania had not developed community care facilities; among non-EU countries the

1993 2000 2000 1997 2000 1981 2004 1981

No Yes Yes Yes No Yes Yes Yes

panorama was completely different, with only 11 countries having well-developed community facilities (Albania, Armenia, Azerbajan, Croatia, Macedonia, Russian Federation, Slovakia, Andorra, Iceland, Israel and San Marino). Europe is also the continent where specific mental health legislation is more frequently present (91.8% of countries). In the vast majority of European countries, recent reforms to mental health law have been enacted, most frequently after 1995 (see Tables 38.3 and 38.4).

MENTAL HEALTH IN EUROPE: LEARNING FROM DIFFERENCES

38.4

509

SERVICE PROVISION AND OUTCOMES

According to the Atlas [4], Europe has a much higher number of psychiatric beds per head of the population (8/10 000 inhabitants) than in the rest of the world. At a world level, country income is certainly a major determinant of number of beds (higher income, higher number of beds). When income differences are not very high, it is clear that models of psychiatric care might also intervene in determining the absolute number of beds and the places where they are located. In fact, due to the uneven presence of community facilities, in Europe a remarkable proportion of beds are still in psychiatric hospitals (63.5%) and only 21.8% are in general hospitals. When considering the total number of beds in the five different groups of European countries, as reported in Tables 38.1 and 38.2 (right-hand columns), a variable picture emerges. Among EU Member States, the highest number of beds is found in eastern Europe (9.61/ 10 000 inhabitants) and in Cyprus and Malta (12/ 10 000 inhabitants). In non-EU eastern and southern Europe countries, which have the lowest income, the number of beds is low (5.7), but 89% are located in psychiatric hospitals. The percentage of beds in psychiatric hospitals is 64% in western EU countries and 70% in eastern EU countries [14,15]. These estimates show that at the European level psychiatric care provided inside institutions is still frequent. That said, it is also true that, overall, there has been a decline in the use of psychiatric beds in many EU countries over the last 30 years; moreover, where long-stay care is provided, this is now much more likely than before to be in general hospitals rather than specialist psychiatric institutions. However, much remains to be done. There has been little change in the balance of care in some of the new Member States, e.g. Bulgaria, Latvia and Romania, and serious concerns persist about the human rights and dignity of those residing in institutional care facilities in several of the new EU Member States: large-scale isolated institutions, some with 1000 beds or more, may be of very poor quality, giving no thought or concern to individual privacy or to investment in activities to help individuals reintegrate into the

community [16]. In most non-EU countries the above-mentioned problems are even more widespread and severe. Availability of mental health professionals is higher in Europe compared with the rest of the world, with 9.8 psychiatrists per 100 000 of the population, 24.8 nurses, 3.1 psychologists and 1.5 social workers. As shown in Tables 38.1 and 38.2 (right-hand columns), there is a marked heterogeneity among countries, both in the number of mental health professionals and in the proportion of different professions. Community and institutional psychiatry throughout Europe are evidently based on similar models, but these models are put into practice in different ways, according to the cultural norms, requirements and choices of each specific country. A major problem in the current debate, and also in the delivery of mental health care, is scarce awareness of a key point spelled out by Thornicroft [17]: community care ‘. . . is a service delivery vehicle. It can allow treatment to be offered to a patient, but is not the treatment itself’. This distinction is important, as the actual ingredients of treatment have been insufficiently emphasized and evaluated. During the last decade, international mental health services research at the European level has been intensified, and some comparative data on the relationships between service provision and service outcome have been published. Until the mid-1990s a great number of studies analysed the consequences of deinstitutionalization on the lives of mentally ill patients at the national level in several countries, mainly in the UK [18,19], but also in Italy [20] and Sweden [21]. However, the scope for comparing results of these studies was limited due to the use of different methods and study designs. Meanwhile, the international standardization of methods for the assessment of mental health services has been considerably improved and some European multicentre studies, either naturalistic or experimental, on the use and the outcomes of mental health services have been later implemented. This is witnessed by a series of projects with a focus on social psychiatry, which

510

GLOBAL MENTAL HEALTH

involve several European sites that have been published since 2000. We report here examples from three observational and three experimental European multicentre studies.

patients from the different countries were small but social differences between the samples where detected and seem likely to be due more to social context.

38.4.1

38.4.2

Naturalistic studies

The EPSILON Study (European Psychiatric Services: Inputs Linked to Outcome Domains and Needs) [22] was conducted in five European centres (Amsterdam, Copenhagen, London, Santander and Verona). It produced standardized European versions of six instruments in key areas of mental health service research (psychopathology, needs for care, quality of life, service satisfaction, carer burden and costs) in five languages, and compared data from five European countries regarding 404 patients with schizophrenia and mental health care provision and costs. The instruments developed were reliable across the range of countries and will facilitate future comparative health service research. The ODIN Study (Outcomes of Depression International Network) [23] examined the use and cost of services by adults with depressive or adjustment disorders in five European countries (Ireland, Finland, Norway, Spain and the UK) and predictors of outcome in 427 patients. Severity of depression, perceived health status, social functioning and level of social support were significant predictors of service use. The number of people able to provide support was positively associated with greater health service use. Individual participant factors provided greater explanatory power than national differences in health care delivery. The EuroSC (European Schizophrenia Cohort) [24] had the primary objective to relate the types of treatment and methods of care to clinical outcome. Secondary objectives included the assessment of treatment needs in relation to outcome, the calculation of resource consumption associated with different methods of care and the identification of prognostic factors. The study was conducted in nine European centres, located in France, Germany and Britain. The clinical and sociodemographic differences between 1108

Experimental studies

The EQOLISE trial (Enhancing the Quality Of Life and Independence of persons disabled by severe mental illness through Supported Employment) [25] assessed the effectiveness of the individual placement and support (IPS) programme in helping people with severe mental illness gain open employment and examined whether its effects were modified by local labour markets and welfare systems. It included 312 patients with severe mental illness randomly assigned in six European centres (the UK, Italy, Germany, the Netherlands, Switzerland and Bulgaria) to receive IPS or vocational services. The study demonstrated the effectiveness of IPS in widely differing labour markets and welfare contexts. The EDEN Study (European Day Hospital Evaluation Study) [26], a multicenter randomized controlled trial, was conducted in five European Centres (Germany, the UK, Poland, Slovakia and the Czech Republic) to establish the effectiveness of acute day hospital care in a sample of 1117 voluntarily admitted patients across a range of mental health care systems. Day hospital care was as effective as conventional inpatient care with respect to psychopathologic symptoms, treatment satisfaction and quality of life. It was more effective in improving social functioning at discharge and at the 3- and 12month follow-up. The Quatro Study (Quality of Life following Adherence Therapy for People Disabled by Schizophrenia and their Carers) [27] aimed to evaluate the effectiveness of adherence therapy in improving quality of life for people with schizophrenia. It was conducted in five European countries (the UK, Spain, Italy, Germany and the Netherlands) and found that adherence therapy was no more effective than health education in improving quality of life.

MENTAL HEALTH IN EUROPE: LEARNING FROM DIFFERENCES

38.5

511

PREVENTION AND PROMOTION ISSUES ACROSS EUROPE

Mental health promotion aims to protect, support and sustain emotional and social well-being and create individual, social and environmental conditions that enable optimal psychological and psychophysiological development, enhance mental health, while showing respect for culture, equity, social justice and personal dignity. Prevention of mental disorder focuses on reducing risk factors and enhancing protective factors, with the aim of reducing risk, incidence, prevalence and recurrence of mental disorders, the time spent experiencing symptoms, and decreasing the impact of illness on the affected person, their families and society [28]. This topic has been recently brought to the attention of the European Commission, which adopted a Green Paper on Mental Health in October 2005 (http://ec.europa. eu/health/ph determinants/life style/mental/green paper/mental gp en.pdf) designed to highlight the importance of mental well-being and develop a comprehensive EU strategy on mental health. Strong evidence has demonstrated that mental health promotion and mental disorder prevention work across the lifespan, providing cost-effective outcomes [29] (see also Chapter 30). As a matter of fact, the level of mental health and well-being in the population is a key resource for the success of the EU as a knowledge-based society and economy [30]. Despite the acknowledgement of the importance of prevention and promotion by politicians and policy makers, it appears not to be a priority and there is a lack of concerted action. The Implementing Mental Health Promotion Action (IMHPA) was created in 2002 with the financial support of the European Commission. With the participation of 28 European countries, it provides a European platform that combines support for policy priority-setting and the dissemination of evidence-based knowledge on prevention and promotion in mental health and constitutes a unique database for policies and information in this area. Among the Actions implemented, IMHPA started the process of assessing the situation across the European Union Member States by collecting

information in the 28 European countries on policies, programmes, workforces and infrastructures for prevention and promotion in mental health (http:// www.gencat.cat). Overall, analysis of promotion and prevention in the various European countries showed that, across all countries, there is some activity being undertaken on prevention and promotion in mental health, and some coordinated and sustained actions based on evidence, while other actions are more ad hoc and require increased support and sustainability. The availability of practice, the resources allocated and the infrastructures developed vary across countries, reflecting different health care systems, political histories and the traditions and understandings of mental and public health. The variations across European countries imply that there are different starting points for action in prevention and promotion in mental health, but also common challenges. Although there is a variety of existing implemented practice, this does not guarantee its positive impact; it is crucial that programmes for implementation are based on evidence, are evaluated and are continuously improved. A number of factors hinder progress, and each of these can be identified as targets for action: lack of conceptual clarity, a difficulty in gathering information, a lack of data on mental health and, where available, difficulties in comparability across countries, a lack of clear infrastructures for prevention and promotion in mental health and a paucity in training the workforce and scarce support for implementation. The gaps that have been identified in countries can be tackled and closed, frequently by strengthening and building on what already exists and by working in partnership across different sectors [31]. At the Member State level, it is crucial to develop clear action plans, based on the evidence for prevention and promotion, that can guide the decision-making process of implementation. There is an urgent need to support implementation in all countries through, for example, guidelines and tailored tool-kits for implementation. Evaluation urgently needs to be strengthened within Member States and Europe as a whole,

512

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including evaluating the impact and cost effectiveness of prevention and promotion interventions across different settings, using appropriate and welldesigned methodologies. European resources and infrastructures should be identified to provide a European framework and to support cooperative projects, research, monitoring, information collecting and sharing across countries. European countries should develop and implement an actual action plan for mental health promotion and mental disorder prevention based on country needs and priorities. The action plans that each European country should develop and implement for mental health promotion and mental disorder prevention have to pay attention

38.6

to the following ten action areas: (1) support parenting and the early years of life; (2) promote mental health in schools; (3) promote workplace mental health; (4) support mentally healthy ageing; (5) address groups at risk for mental disorders; (6) prevent depression and suicide; (7) prevent violence and harmful substance use; (8) involve primary and secondary health care; (9) reduce disadvantage and prevent stigma; and (10) link with other sectors. These actions should be implemented by following these five common principles: (1) expand the knowledge base for mental health; (2) support effective implementation; (3) build capacity and train the workforce; (4) engage different actors; and (5) evaluate policy and programme impact [32].

EUROPEAN SOCIETIES AND ASSOCIATIONS IN THE FIELD OF SOCIAL PSYCHIATRY

The increasing perception of Europe as a unitary community and the widespread impact of community-based approaches in mental health have favoured the foundation of several organizations and networks among European countries, whose cultural background is rooted in the frame of the social psychiatry approach. In this section we will summarize some of these organizations. The list is not intended to be exhaustive of all organizations working in Europe and includes only associations that involve more than three different European countries: The Section of Epidemiology and Social Psychiatry of the Association of European Psychiatry (http:// www.aep.lu/about/sections/Epidemiology%20Section/index%20epidemiology.html) was founded in 1988. The Section promotes and supports psychiatric research to which epidemiology is a relevant tool. The most relevant fields of interest are: genetic research, health economy research, health service research, longitudinal research, outcome studies, pharmacoepidemiology, population surveys, register research and social psychiatry. Moreover, as one of its major objectives, the section supports and promotes younger colleagues within psychiatric epidemiological research.

The Nordic Association for Psychiatric Epidemiology (NAPE) (www.nape.dk) was founded in 1997 and covers Sweden, Norway, Denmark, Finland and Iceland. The aims of the NAPE are: to promote research of psychiatric epidemiology in the Nordic countries, especially recruitment and guidance of young researchers within the field; to promote the cooperation in the Nordic countries within the field; to help ensure posts of psychiatric epidemiology in the Nordic countries; to stimulate researchers of psychiatric epidemiology to increase international cooperation; and to stimulate the use of results of psychiatric epidemiology research in the Nordic countries. The European Network for Mental Health Service Evaluation (ENMESH) (http://www.enmesh.eu) was established in 1991 under the auspices of the World Health Organization, Regional Office for Europe. It is a network of active researchers in the field of mental health service research and evaluation. The network is informal in its structure, culture and organization. Its aims are: to develop and maintain a network of active researchers in mental health service research in Europe; to promote the development and dissemination of study designs, research instruments, mental health outcome indicators (including cost measurements) and relevant forms of statistical indicators; and

MENTAL HEALTH IN EUROPE: LEARNING FROM DIFFERENCES

to function as a clearing house for mental health service evaluation information in Europe. Moreover, the main activities are: to organize an international conference every second year where researchers meet, network and discuss research-related issues; to run and update every second year a register of researchers active in the field of mental health service research and evaluation; and to maintain an internet website to inform of activities within and linked to ENMESH. The Open Society for Mental Health Initiative (OSMHI) (http://www.osmhi.org/) works in central and eastern Europe and the former Soviet Union. It aims to ensure that people with mental disabilities (mental health problems and/or intellectual disabilities) are able to live in the community and to participate in society with full respect for their human rights. The focus of OSMHI activities is to end the unjustified and inappropriate institutionalization of people with mental disabilities. To reach this purpose, the MHI promotes de-institutionalization and the development of sustainable community-based services as a matter of policy across the region, working at both national and European levels. The European Federation of Associations of Families of People with Mental Illness (EUFAMI) (http://www.eufami.org/) was founded in 1990 with the aim to support family carers of people with mental illness throughout Europe. EUFAMI has members in 26 European countries and one non-European country. The aims are: to coordinate and provide for the cooperation of the member associations by exchanging experience and information; to defend the rights and protect the interests of the family members of mentally ill people, and of the mentally ill people themselves, to enable them to achieve the fullest possible life in society; to represent the family associations in any official European bodies in order to establish the rights and interests mentioned above; to stimulate research into the causes, prevention, treatment and consequences of mental illnesses for the family members concerned and the mentally ill people themselves; and to collaborate with scientific research bodies and to build up a positive image concerning mental illness, and counter social prejudice in this regard in society.

513

The European Society for Traumatic Stress Studies (ESTSS) (http://www.estss.org/) was established in 1993 and is the European network for professionals in the field of psychotraumatology. The aims of ESTSS are: to ensure that clinical research and policy practices in the field of psychotraumatology are informed by evidence systematically gathered and publicly scrutinized; to ensure continued prominence is given to all aspects of traumatic stress and its many repercussions; and to promote networking between individuals and organizations within the field of psychotraumatology. The European Alliance Against Depression (EAAD) (www.eaad.net) is an international network of experts with the aim to promote the care of depressed patients by initiating community-based intervention programmes in 17 European countries. It is committed to the care of depressed patients and prevention of suicidality in Europe. This aim is being realized by implementing community-based intervention programmes on four different levels. The basic concept of the foour-level approach is based on the experiences of the ‘Nuremberg Alliance Against Depression’, a study that has recently been conducted in the framework of the ‘German Research Network on Depression and Suicidality’ (funded by the German Federal Ministry of Education and Research). The Implementing Mental Health Promotion Action (IMHPA) (www.imhpa.net) (noted above) was created in 2002 with the financial support of the European Commission. With the participation of 28 European countries, it provides a European platform that combines support for policy priority-setting and the dissemination of evidence-based knowledge on prevention and promotion in mental health, and constitutes a unique database for policies and information in this area. IMHPA has developed a European action plan for mental health promotion and mental disorder prevention and a policy framework identifying highpriority policy initiatives to improve mental health, based on their proven efficacy and the practicality of their implementation. The purpose of such coalitions is to exchange information on mental health promotion and prevention of mental disorders, to build cooperation and to stimulate developments at national and regional levels.

514

GLOBAL MENTAL HEALTH

38.7

MENTAL HEALTH IN EUROPE: NEW OR OLD PROBLEMS?

Mental health in Europe is today in an evolving situation. People living in Europe are experiencing the consequences of societal transition. This is occurring in eastern European countries belonging to the former Soviet Union, which have become newly independent, in central Europe, where dramatic changes have occurred during the last decade, but also in Western Europe, where risk populations are exposed to changes, regarding perspectives, identity, possibilities for lifespan planning and predictability in life. Increasing burden and distress are influenced by social exclusion, identity loss, lack of coherence and meaning, and existential emptiness [33]. Mental disorders, especially depression and suicide, and the consequences of risk-taking behaviour and destructive life styles, have become one of the greatest maybe the greatest health care burden in countries of societal transition and in populations at risk (such as adolescents, the elderly, migrants and women). In the last 50 years the development of mental health services in western Europe has been characterized by conceptual and structural changes [34] that have brought a radical transformation in mental health care provision. However, in most of these countries mental health care provision is still a multifaceted picture and mental health reform has not yet been completed, even if in most countries the majority of people with severe mental illness are now treated by community services. The availability of effective psychotropic drugs was a further decisive factor contributing to the reform efforts and success, but economic, social, cultural and political factors also sustained this long-term trend in societies [16]. Fakhoury et al. [35] pointed out that there have been weaknesses in the de-institutionalization process, specifically concerning: (i) difficulty in meeting the needs for care of so-called ‘new chronic patients’ or of those with comorbid disorders, particularly those with substance abuse comorbidity; (ii) an increasing pressure on the secure and forensic mental health care system; (iii) accumulation of ‘new long-stay patients’ and help given to people with learning disabilities; (iv) an increasing emphasis on the issues of involuntary

treatment in some countries that have already gone through de-institutionalization processes [14,15]; (v) lack of receptiveness and substantial hostility in communities towards people with mental illness; and (vi) critical issues regarding the quality of care and quality of life and turnover in some of the new residential services that host people with long-term mental health problems. In a general sense, there is a high priority for rebalancing care concerning health expenditure [3], use of beds [14,15], human rights, gender differences [36] and discrimination against older people and minorities [37]. While the reform process in western Europe has not been completed, the political changes in eastern Europe and the enlargement of the European Union pose new challenges for the modernization of mental health care systems in those countries [38,39]. More than a decade after the breakdown of the totalitarian political systems, many eastern European countries are still confronted with problems similar to those in western Europe at the beginning of the reform process in the early 1960s, such as concentration of care in large psychiatric hospitals and lack of outpatient facilities and other forms of community care [16]. However, in contrast to western Europe in the 1960s, many eastern European countries at present are also confronted with a dramatic lack of health care resources because of economic deterioration, on the one hand, and an increase of mental disorders at least partly because of social instability, on the other hand [40]. Under these circumstances the context of mental health care reform is different and probably more disadvantageous from the situation in western Europe in the 1960s, which was characterized by economic prosperity and social stability. For this reason a sustained effort should be promoted at the European level to favour exchange of experiences, evaluative efforts, methodologies and intensive networking among professionals in the field of mental health. Although the tendency for the homogenization of different systems of care in Europe, as well as of most aspects of societal sectors and values, is in place, a long road remains to be made in order to achieve real homogeneity between mental health

MENTAL HEALTH IN EUROPE: LEARNING FROM DIFFERENCES

services in different countries composing the European mosaic. Most of these differences and many of the service shortcomings have to do with the gap between the acquisition of knowledge and its application: the results of most research studies are not opportunely transformed into improved patient care and a more cost-effective organization of services [41]. Experiences and problems in the transformation of mental health care in western Europe might be helpful in supporting reform processes in eastern Europe if they can be integrated with needs-oriented targets, evidence-based strategies and detailed knowledge of economic and social realities in individual countries. In turn, western European countries, by monitoring the reform process in eastern Europe, could gain deeper knowledge of their own systems of care and their weaknesses too. The development of psychiatric service systems in western Europe makes it obvious that a fundamental change in the principles and the organization of mental health care is possible across national borders. At the same time the differences seen in psychiatric services of current mental health care systems in the EU reveal that shared global developments do not necessarily result in comparable patterns of service provision. Reports on mental health care reforms in several countries suggest that against the background of existing health care structures, as well as economic, social, political and cultural characteristics, each country has to find its own way in order to accomplish the aims of de-institutionalization and integration. REFERENCES 1. Fryers, T., Melzer, D., Jenkins, R. et al. (2005) The distribution of the common mental disorders: social inequalities in Europe. Clinical Practice and Epide miology in Mental Health, 5 (1), 14. 2. World Health Organization (WHO) (2001) Atlas: Men tal Health Resources in the World 2001, World Health Organization, Geneva. 3. McDaid, D. (2008) Mental health reform: Europe at the cross roads. Health Economics, Policy and Law, 3, 219 228. 4. World Health Organization (WHO) (2005) Mental Health Atlas 2005, World Health Organization, Geneva.

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5. Saxena, S., Thornicroft, G., Knapp, M. and Whiteford, H. (2007) Resources for mental health: scarcity, inequity, and inefficiency. Lancet, 370 (9590), 878 889. 6. Chisholm, D. (2005) Choosing cost effective interven tions in psychiatry: results from the CHOICE pro gramme of the World Health Organization. World Psychiatry, 4, 37 44. 7. Zechmeister, I., Kilian, R. and McDaid, D. (2008) Is it worth investing in mental health promotion and pre vention of mental illness? A systematic review of the evidence from economic evaluations. BMC Public Health, 8, 20. 8. Andlin Sobocki, P., Jonsson, B., Wittchen, H. U. et al. (2005) Cost of disorders of the brain in Europe. Eur opean Journal of Neurology, 12 (1), 1 27. 9. Knapp, M. (2003) Hidden costs of mental illness. British Journal of Psychiatry, 183, 477 478. 10. Thornicroft, G., Tansella, M., Becker, T. et al. (2004) The personal impact of schizophrenia in Europe. Schi zophrenia Research, 69, 125 132. 11. Van Wijngaarden, B., Schene, A. H. and Koeter, M. W. (2004) Family caregiving in depression: impact on caregivers’ daily life, distress, and help seeking. Jour nal of Affective Disorders, 81, 211 222. 12. Ostman, M. and Hansson, L. (2004) Appraisal of caregiving, burden and psychological distress in rela tives of psychiatric inpatients. European Psychiatry, 19, 402 407. 13. Anderson, R., Wynne, R. and McDaid, D. (2007) Housing and employment, in Mental Health Policy and Practice Across Europe (eds M. Knapp, D. McDaid, E. Mossialos and G. Thornicroft), Open Uni versity Press, Buckingham. 14. Priebe, S., Frottier, P., Gaddini, A. et al. (2008) Mental health care institutions in nine European countries, 2002 to 2006. Psychiatric Services, 59 (5), 570 573. 15. Haug, H. J. and R€ ossler, W. (1999) Deinstitutionaliza tion of psychiatric patients in central Europe. European Archives of Psychiatry and Clinical Neuroscience, 249 (3), 115 122. 16. Becker, T. and Kilian, R. (2006) Psychiatric services for people with severe mental illness across western Europe: what can be generalized from current knowl edge about differences in provision, costs and outcomes of mental health care? Acta Psychiatrica Scandinavica, 113 (suppl. 429), 9 16. 17. Thornicroft, G. (2000) Testing and retesting assertive community treatment. Psychiatric Services, 51 (6), 703.

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18. Goldberg, D. (1999) The future pattern of psychiatric provision in England. European Archives of Psychiatry and Clinical Neuroscience, 249, 123 127. 19. Glover, G. (2007) Adult mental health care in England. European Archives of Psychiatry and Clinical Neu roscience, 257, 71 82. 20. de Girolamo, G., Bassi, M., Neri, G. et al. (2007) The current state of mental health care in Italy: problems, perspectives, and lessons to learn. European Archives of Psychiatry and Clinical Neuroscience, 257 (2), 83 91. 21. Stefansson, C. G. and Hansson, L. (2001) Mental health care reform in Sweden, 1995. Acta Psychiatrica Scandinavica, 104 (suppl. 410), 82 88. 22. Becker, T., Knapp, M., Knudsen, H. C. et al. (2000) Aims, outcome measures, study sites and patient sam ple. EPSILON Study 1. European Psychiatric Services: inputs linked to outcome domains and needs. British Journal of Psychiatry Supplement, 39, s1 s7. 23. McCracken, C., Dalgard, O. S., Ayuso Mateos, J. L. et al. (2006) Health service use by adults with depres sion: community survey in five European countries. Evidence from the ODIN study. British Journal of Psychiatry, 189, 161 167. 24. Bebbington, P. E., Angermeyer, M., Azorin, J. M. et al. (2005) The European Schizophrenia Cohort (EuroSC): a naturalistic prognostic and economic study. Social Psychiatry and Psychiatric Epidemiology, 40 (9), 707 717. 25. Burns, T., Catty, J., Becker, T. et al. (2007) The effec tiveness of supported employment for people with severe mental illness: a randomised controlled trial. Lancet, 370 (9593), 1146 1152. 26. Kallert, T. W., Priebe, S., McCabe, R. et al. (2007) Are day hospitals effective for acutely ill psychiatric patients? A European multicenter randomized con trolled trial. Journal of Clinical Psychiatry, 68 (2), 278 287. 27. Gray, R., Leese, M., Bindman, J. et al. (2006) Adher ence therapy for people with schizophrenia. European multicentre randomised controlled trial. British Jour nal of Psychiatry, 189, 508 14. 28. World Health Organization (WHO) (2003) Investing in Mental Health, World Health Organiza tion, Geneva. 29. Hosman, C. and Jane Llopis, E. (1999) Mental health promotion, Chapter 3, in The Evidence of Health Pro motion Effectiveness: Shaping Public Health in a New

30.

31.

32.

33.

34.

35.

36.

37.

38.

39.

40.

41.

Europe. A Report for the European Commission by the International Union for Health Promotion and Educa tion, ECSC EC EAEC, Brussels and Luxemburg. Jane Llopis, E. and Anderson, P. (eds) (2006) Mental Health Promotion and Mental Disorder Prevention across European Member States: A Collection of Coun try Stories, European Communities, Luxembourg. Lehtinen, V. (2004) Action for Mental Health Activities Co funded from European Community Public Health Programmes 1997 2004, European Commission, Luxembourg. Jane Llopis, E. and Anderson, P. (eds) (2005) Mental Health Promotion and Mental Disorder Prevention. A Policy for Europe, Radboud University Nijmegen, Nijmegen. Rutz, W. (2006) Social psychiatry and public mental health: present situation and future objectives. Time for rethinking and renaissance? Acta Psychiatrica Scandi navica, Supplementum, 429, 95 100. Becker, T. and Vazquez Barquero, J. L. (2001) The European perspective of psychiatric reform. Acta Psy chiatrica Scandinavica, 104 (suppl. 410), 8 14. Fakhoury, W. K., Murray, A., Shepherd, G. et al. (2002) Research in supported housing. Social Psychiatry and Psychiatric Epidemiology, 37, 301 315. Angst, J., Gamma, A., Gastpar, M. et al. (2002) Gender differences in depression. Epidemiological findings from the European DEPRES I and II studies. European Archives of Psychiatry and Clinical Neuroscience, 252 (5), 201 209. Cattan, M., White, M., Bond, J. et al. (2005) Preventing social isolation and loneliness among older people: a systematic review of health promotion interventions. Ageing and Society, 25, 41 67. Rutz, W. (2005) Mental health in Europe: problems, advances and challenges. Acta Psychiatrica Scandina vica, 104 (suppl. 410), 15 20. Tomov, T. (2001) Mental health reforms in eastern Europe. Acta Psychiatrica Scandinavica, 104 (suppl. 410), 21 26. Poloshij, B. and Saposhnikova, I. (2001) Psychiatric reform in Russia. Acta Psychiatrica Scandinavica, 104 (suppl. 410), 56 62. de Girolamo, G. and Neri, G. (2007) Mental health in Europe: a long road ahead. European Archives of Psychiatry and Clinical Neuroscience, 257 (2), 63.

39 East meets west: current mental health burdens in greater China Roger M. K. Ng1 and Zhanjiang Li2 1 2

Department of Psychiatry, Kowloon Hospital, Kowloon, Hong Kong Beijing Anding Hospital, Capital Medical University, Beijing, People' s Republic of China

39.1

CHINA: A VAST AND HETEROGENEOUS COUNTRY UNDERGOING RAPID AND TREMENDOUS CHANGES

The societal transformation of China from the First Opium War (1839 1842) to the current day can only be described as immense and unimaginable. Under the rule of the corrupt Qing Dynasty (1648 1912), followed by the political upheavals during the period of the Republic of China (established 1912) and second Sino-Japanese War (1937 1945), China was considered the ‘sick man of Asia’. During the Japanese invasion of China, 20 million were killed and tens of millions uprooted. The psychological aftermath of such a traumatic period is largely unknown, as there are no authoritative data that document the extent and severity of mental health problems in this tragic period of Chinese history (see Reference [1] for a more comprehensive review). Since the establishment of the People’s Republic of China in 1949, China also witnessed unprecedented political, economic and social changes. From the early stage of Maoist communism in the 1950s to the 1970s, to the introduction of an open-door policy

and market economy in the 1980s, there has been a steady improvement in economic and social structures and circumstances for the general public. By 1996, China’s economy had become the fastest growing one in the world. More than 300 million Chinese living along the coast have witnessed the economic boom. Those 900 million Chinese living inland are also experiencing slower but still impressive improvements in their daily living conditions. In contrast, around 150 million of the rural population has become economic migrants, part of the ‘floating’ population that lives at the fringes of the prosperous coastal cities like Shanghai and Shenzhen. They are at risk of unemployment, poor health care provisions, and poor housing conditions (see the section on migration and mental health below in Section 39.7). Furthermore, there are still an appreciable number of Chinese who are living in the poorest rural areas with very limited access to education and health services.

Principles of Social Psychiatry, second edition Edited by Craig Morgan and Dinesh Bhugra Ó 2010 John Wiley & Sons, Ltd.

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There is a strong legacy of epidemiological research on mental disorder in China. Even in the late 1950s, early efforts were made to ascertain the rates of mental illnesses in Beijing and Changsha. By the 1970s, epidemiological studies were initiated in various parts of China. In 1982, with the assistance of the Mental Health Programme at the World Health Organization, a large-scale epidemiological survey was conducted in 12 different sites in China [2,3]. There was an overall low prevalence rate of mental illness (rates 3 5 times lower than in the West) and the often substantial differences across different centres (a threefold difference between populations for psy-

39.2 39.2.1

chotic disorders and fivefold for neurotic disorders), points to the heterogeneity of the epidemiology of mental illnesses in China. This chapter will explore the current structure of mental health services in China, some of the major mental health problems facing modern China (namely suicide, depression, psychosis and addiction problems) and the possible impact of globalization (or Westernization) on the occurrence and presentation of mental illnesses in China. The final section will discuss the implications of economic growth, in particular its effects on migrant workers within China.

CURRENT MENTAL HEALTH BURDEN AND SERVICE STRUCTURE IN CHINA Current mental health burdens in China

In the Global Burden of Disease Study, mental health problems and suicide constituted 18% of the disease burden in China [4]. It was also estimated that, by the year 2020, mental health problems and suicide would continue to rise and constitute 20% of the disease burden (25% of the total disease burden for the female population in China). It is worth noting that accidental injury, cardiovascular diseases and respiratory diseases ranked second, third and fourth as causes of disease burden in China. As discussed by Phillips [5], most of these morbidities were related to lifestyle problems like smoking, reckless driving and poor dietary habits. Such behavioural problems are closely related to the mental health of the community. If the first five causes of disease burden were added up together, they would constitute up to 50% of the disease burden in China. These figures suggest that mental health interventions should be considered priorities for public health policy and prevention strategies. Among the mental health problems, the most prevalent disorders were major depressive disorder (6.9%), bipolar affective disorder (1.9%), schizophrenia (1.3%) and obsessivecompulsive disorder (1.3%) [6]. It is estimated that depressive disorder will be the third most important public health problem in China by 2020, while suicide will become the sixth most important problem.

Furthermore, in the 1990 survey, only 5% of people suffering from depressive disorder or bipolar affective disorder had received adequate treatment (compared with 35% in most developed countries), while only 30% of people suffering from schizophrenia received proper treatment [4]. The World Mental Health Survey, a 14-country epidemiological survey of the prevalence of mental disorders, found that: around 7% of the subjects in China (n ¼ 5201) suffered from neurotic disorders, of which 2% suffered from depressive disorder; 1.9% suffered from specific phobias; 1.6% from alcohol abuse; and 0.8% from generalized anxiety disorder. Such point prevalence estimates can be translated into a figure of around 68 million people in China suffering from a neurotic disorder [7]. However, only 11% of subjects with neurotic disorders sought help from medical professionals, implying that around 56 million sufferers did not receive any medical treatment. For those seeking medical treatment, around 50% received care in general hospital outpatient departments while 37% consulted psychiatrists or counsellors. As in other Western countries, primary care physicians have limited knowledge and skills in detection and appropriate interventions for psychiatric disorders [8]. It is apparent that China has a tremendous burden of mental disorder and, as discussed in the sections below, this may be increasing in this fast developing country.

EAST MEETS WEST: CURRENT MENTAL HEALTH BURDENS IN GREATER CHINA

39.2.2

Availability of psychiatrists and psychiatric beds

Apart from the rising mental health burden, China, like many developing countries, is facing a severe shortage of skilled mental health professionals and bed provisions. The number of psychiatric beds per 10 000 persons in China in 2004 was 1.1, representing only 5% of total inpatient beds in China (compared with 7.7 beds per 10 000 persons in the US). The number of psychiatrists per 100 000 persons in China was only 1.3, whereas the corresponding figure in the US is 13.7 [9]. Only 1% of the total one million medical graduates in China took up a career as a psychiatrist [10]. Apart from the shortage of beds and skilled mental health professionals, there is also a concern about the variable standard of care provided. At present, there is no national accreditation mechanism in place that assesses the level of competence of psychiatrists in China, leading to a wide variation in the quality of care delivered by psychiatrists and mental health professionals in different areas [5]. As a remedy to this issue the Ministry of Health has started to develop a three-year clinical training programme for specialist psychiatrists. Such programmes are now being piloted in many major cities in China. There is also active interest in developing a national accreditation system for specialist psychiatrists in China, which is similar to those currently implemented in the West. In addition to the lack of qualified staff, most psychiatrists are based in psychiatric hospitals or general hospitals in cities, where pay and working conditions are better, leading to a persistent shortage of qualified professionals working in smaller counties and rural areas [5].

39.2.3

Current mental health care provisions in China

It is estimated that over 90% of Chinese patients with severe mental disorders are receiving care from family members, due to a lack of residential services in the community [11]. Since the early 1990s, an integrated mental health care system has been gradually developed throughout China [12]. This is a three-tier model centred on provincial capitals and

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major cities. Mental health institutes in the provinces or major cities constitute the top tier of the system and are responsible for enacting management guidelines and providing guidance and support to all mental health services in the area. The middle tier (town or district level) comprises mental health institutes in medium-sized cities (still with populations of several millions) or psychiatric hospitals in towns and rural areas. The bottom tier based in the community offices and villages employs mental health field workers with responsibilities similar to community psychiatric nurses (albeit without formal qualifications) in the West. Mental health workers provide regular support and contact with patients and their caregivers, and deliver some forms of rehabilitation. Over time, the Chinese government has successfully implemented this three-tier mental heath system in most cities in China [13]. Such a structure is crucial in the delivery of interventions to local populations. One crucial obstacle, however, in the delivery of mental health services is the fee-for-service system in most hospitals in China. Since the introduction of an open market economy, most hospitals have become self-sufficient financially and have adopted a marketing strategy of prioritizing services for people with secure medical insurance or stable employment. As most patients with severe mental illness are likely to be unemployed and financially dependent on their families, many hospitals are reluctant to provide such mental health services with a limited return on investments [5]. One major step forward in the care delivery model in China would be the national provision of free mental health services for people suffering from severe mental disorder. More financial resources must be invested by the government (the current mental health budget constitutes only 2.4% of the total expenditure on health care) and by other national or private organizations. As Hong Kong was under British rule for more than 100 years, psychiatric services in Hong Kong followed closely the British model of psychiatric care, with free mental health services guaranteed for people with financial difficulties [14]. Before the return of sovereignty to China in 1997, training of psychiatrists in Hong Kong followed closely the British model and attainment of a membership qualification of the Royal College of Psychiatrists was a prerequisite

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for recognition as a specialist psychiatrist in Hong Kong. Since the handover back to China, Hong Kong has set up its own College of Psychiatrists to maintain professional standards. Similar to the situation in mainland China, the recruitment of medical graduates into the speciality remains a major challenge. A shortage of psychiatrists and mental health nurses in

39.3

Hong Kong is still a major obstacle in the development of new services, especially the implementation of comprehensive community care [15]. By the end of this decade, it is likely that there will be 3 psychiatrists per 100 000 persons in Hong Kong, reflecting a real shortage of trained psychiatrists in Hong Kong [14].

SUICIDE: A MAJOR PUBLIC HEALTH ISSUE IN CHINA

The World Health Organization (WHO) estimated that suicide claimed one million lives in 2001, which exceeded the number of deaths by homicide and war combined [16]. Half of all female suicides in the world occur in China [4]. In China, suicide is the fifth most common cause of death in the country, accounting for more than 287 000 deaths per year [17,18]. The WHO 1999 World Health Report suggested that suicide is China’s fourth most important public health problem in terms of disability-adjusted life years (DALYs) lost [6]. Hong Kong is facing similar problems. Suicide is now the leading cause of death among females aged 15 24 years in Hong Kong [19], where suicide has steadily climbed up to the sixth most common cause of deaths [20]. Unlike Western data on suicide, where males are at higher risk of suicide than females, the gender ratio appears roughly similar in China and Hong Kong [21]. In China both young and elderly women are at higher risk, and rural women at greater risk than urban women [22,23]). The exact cause of the higher risk in females is not clear, but sex inequalities, social adversity for females and deaths associated with pesticides in impulsive suicidal attempts have all been proposed as possible causes [23]. In one study, unemployment, receipt of disability pension, low income and low wealth status were associated with higher risks of suicide [24,25]. A recent study in Hong Kong found that the socioeconomic adversity in Hong Kong from 1997 to 2006 was paralleled by a 50% increase in the suicide rate from 12.1 per 100 000 in 1997 to 18.6 per 100 000 in 2003 [26]. A recent psychological autopsy study conducted in Hong Kong found that unemployment and indebtedness were significant risk factors for suicide, especially among young males [27].

39.3.1

Reasons for the rising trend of suicide: social fragmentation and loss of cultural values?

Traditional Chinese culture is a high-context culture comprised of an extended relationship network of family and kin living in close proximity to each other. An individual’s self and self-worth is connected to others through well-established and well-understood commitments, loyalties, rights and responsibilities. Such a build-up of family and kin relationships is based on the concept of filial piety (Chinese tradition of xiao). Filial piety serves as a guiding principle governing the general Chinese pattern of socialization and rules of intergenerational conduct across the lifespan [28]. Chinese elders depend upon younger generations for both emotional and instrumental support. Yet filial piety also requires younger generations to honour and obey elders [29]. In return, elders give advice, comfort, teaching and help to others in need. Hence, elders have a meaningful role in both family and society [30]. Filial piety therefore serves as an important value of enhancing social integration and cohesion in the traditional Chinese community. Durkheim’s classic theory proposed that there is a negative association between social cohesion and suicide [31]. From this, the change in socioeconomic and political structure might account for changes in suicide rates in many countries [21]. Studies in the West on regional variations in suicide have consistently found that districts characterized by markers of low social integration such as the proportion of single-person households, divorced people and population mobility in an area have the highest rate of suicide [32 34].

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The traditional values of Chinese culture have suffered a substantial blow in the last 50 years, with fervent attacks on traditional Chinese values during the Cultural Revolution (1966 1976), followed by the recent introduction of Western cultural ideals concomitant with market reforms and the open-door policy (1978 to the present). Is there any evidence to suggest a rise in suicide rates in the last 50 years? Reliable data were only available in the 1970s, when epidemiological studies were initiated throughout China. The Twelve Region Chinese Epidemiological Survey of Mental Disorders was conducted by Chinese psychiatrists with the assistance of the Mental Health Programs at the World Health Organization in 1982 [2]. The study suggested that a several-fold increase in suicide rates had occurred over the preceding decade [2]. Apart from the observation of longitudinal change in suicide rates, recent high-quality crosssectional epidemiological studies conducted in different regions have also highlighted the importance of social cohesion as a risk factor of suicide. In a recent national case-control psychological autopsy study in China (N ¼ 1015), for example, high levels of depressive symptoms, acute stress at times of suicide, high chronic stress and severe interpersonal conflicts before suicide were all significant predictors of suicide [18]. In a recent community study of 1000 elderly people in Taiwan, suicidal ideation was associated with depression, low level of education and lack of community participation and integration [35]. Again, low levels of acculturation and social assimilation were identified as risk factors for suicide among native Taiwanese [36]. Poor social support, being single or divorced, and lack of social cohesion were similarly identified as significant predictors of suicide in a recent territory-wide case-control psychological autopsy study in Hong Kong [27].

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Another possible mechanism by which cultural values protect against suicide may be related to the life-preserving beliefs of Chinese culture. The Chinese cultural belief of filial piety, which emphasizes social responsibility to families and to the community at large, equates suicide with casting a curse on to one’s parents (shenti fahu shouzhu fumu) and, as such, may provide a strong moral objection against suicide. Is there any evidence that such life-preserving values of Chinese culture protect against suicide? In a community study of Hong Kong adolescents, traditional values like obedience and respect for elders were protective against suicidality for girls but not for boys. Endorsement for self-direction was correlated with reduced suicide rates for boys but not for girls [19]. A recent population-based epidemiological survey of adults aged 20 59 (N ¼ 2015) in Hong Kong has found that when respondents’ reason for living scores were high (defined as one standard deviation above the mean), mean life distress levels were not associated with the probability of past-year suicidal ideation, whereas for respondents’ with a low reason for living scores (defined as one standard deviation below the mean), the probability of having suicidal ideation increased substantially with the mean life distress scores [37]. Such findings provide some preliminary evidence that social cohesion, cognitive appraisal of meaning of life and religious affiliation may be closely related. Apart from the possible impact of changes in cultural values on mental health, the introduction of a market economy, clashes between old and new institutional policies, as well as the percolation of the Western concept of ‘free competition’ into all facets of life (employment, education, promotion and career opportunities) may all lead to increased psychological stress and increased incidence of mental disorders.

DEPRESSION: IS IT LESS COMMON IN THE CHINESE POPULATION?

Depression appears to be less prevalent in Asian regions (e.g. Japan, Taiwan and Mainland China) than in Western societies [38 40]. The WHO study reported that the prevalence of depression in primary care settings was 2.4% in China, whereas the prevalence rates in Western countries, such as the United Kingdom

and the United States, were significantly higher (17.1 and 6.4%, respectively) (see Reference [41] for a review). A recent epidemiological study in Beijing also found a lower point prevalence of depression (3.3% in Beijing) [42]. A further similar study in Hebei province reported a point prevalence of 2.7% and

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a lifetime prevalence of 4.75% [43]. Although there is some regional variation in the prevalence and incidence of depression, these recent studies have consistently suggested that depression is less common in China.

39.4.1

Under-recognition of depression in the Chinese population?

One possible explanation is reluctance to report psychiatric problems. Parker et al. [44,45] have suggested that the stigma of ‘insanity’, imputations of ‘weakness of character’, family shame and the view that emotional illness is ‘part of life’ could explain such reluctance to disclose emotional distress. Furthermore, verbal expressions of emotional distress are not sanctioned in Chinese culture. Emotional messages are conveyed not in words that designate emotions but rather through metaphors that are often related to the physical body [46]. Symbols, gestures and metaphors constitute a language of emotions (‘heartache’ conveys sadness, while ‘fatigue’ and ‘tiredness’ means hurt and despair) [47]. This second explanation of disguised depression in the form of somatic complaints (‘somatization’) has been confirmed in many studies. In a study of psychiatric outpatients in Singapore, Chinese patients suffering from depression or anxiety were more likely to report ‘general discomfort’ and ‘pain’ than ‘anxiety’ or ‘depression’ as their chief presenting complaints [48]. A person is expected to avoid bringing personal problems to the attention of others because such an act can undermine harmony or make inappropriate demands on the social group [49]. Studies have also found that outpatients typically complain initially of physical discomfort such as insomnia or muscle pain, but on further exploration usually identify emotional and social problems [50,51]. This idiomatic reporting of emotional distress is related to another possible explanation for lower rates of depression: an alternative presentation of depression, i.e. neurasthenia. The term ‘neurasthenia’ was derived from the Greek, which means a ‘lack of nerve strength’ or ‘exhaustion of the nervous system’ [52]. The concept of neurasthenia was introduced to China in early 1900 and was commonly understood by the

Chinese to mean ‘neurological weakness’ (shenjing shuairuo these words translate as weakness of the channels carrying vital energy, or qi, through the body [53]). Neurasthenia became widely used by psychiatrists in China, who viewed it as a state of illness determined by dynamic interactions between inherited vulnerability to neurosis and environmental stress [54]. This concept of nervous system disorder and its view on disharmony of vital organs and energy fit well with the traditional Chinese concept of illness as an imbalance of yin and yang (the balance of the positive and negative forces in the body, which is essential for the normal functions of the vital fluids and visceral systems, including the vital energy circulation), caused by external pathogens like cold or damp weather [55]. Neurasthenia is therefore understandably a nonstigmatizing diagnosis that is conceptually distant from a psychiatric label. Both patients and psychiatrists prefer such a label to the psychiatric label of depression [1]. By the 1980s, as many as 80% of psychiatric outpatients in China were diagnosed as primarily ‘neurasthenic’ [56]. However, in the past decade, mainland Chinese psychiatrists have increasingly endorsed the concept of depression and reduced the use of the diagnostic label of neurasthenia. It is anticipated that alternative explanations would become an increasingly less plausible explanation of a lower prevalence of depression in the coming years [57].

39.4.2

Possible reasons for the lower prevalence of depression: protective value of cultural factors?

Alternatively, the reported lower prevalence of depression may reflect a lower incidence of depression in the Chinese population. Community surveys undertaken in mainland China [4,58] estimated around a 2% one-year incidence rate for unipolar depression, compared with an annual incidence rate of 10.3% for major depression found in the United States National Comorbidity Survey [59]. Why would there be a lower risk of depression in the Chinese population? One putative protective factor is the positive value of

EAST MEETS WEST: CURRENT MENTAL HEALTH BURDENS IN GREATER CHINA

Chinese culture. A recent cross-sectional study on a large representative sample of Chinese elders (N ¼ 1502) living in new towns in mainland China found a negative association between adherence to Chinese tradition (adherence to traditional beliefs, relationships and values) and level of depression [60]. The study also found a higher level of depression (17.9%) among those living in newly developed towns transitioned from rural farms and villages (compared with a pooled prevalence of 14.8% in a meta-analysis of studies of depression in older people conducted in various parts of China [61]). Mjelde-Mossey et al. [60] have explained this rise as partly due to the loss of traditional lifestyles as families move from villages or farms to high-rise apartments. Losing these key aspects of life also means losing familiar ways of coping, the sense of social integration and traditional rituals that assist individuals through key transitions [62]. How do traditional Chinese values exert protective effects? One possible mediating factor is the presence of enhanced social support in traditional Chinese culture. Social support is a valuable means by

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which a person can reduce the negative impact of stress [63]. Perceived and received support from close others, like family members, are especially beneficial [64]. Social relationships provide social support, give access to coping resources and give meaning to life [65]. Social integration buffers stressors and contributes to more positive mental health [66]. Recent studies in Hong Kong have indeed confirmed lower levels of filial piety in depressed outpatients compared with normal controls [67,68]. If the above is true, this may point to an increasing incidence of depressive disorders with urbanization and westernization in China. Indeed, there is some evidence that depressive disorder has risen in China in the past 30 years [2]. In conclusion, there is some emerging evidence from recent well-conducted epidemiological studies in China that there is a lower prevalence and a lower incidence of depressive disorders. Under-recognition of the diagnosis by mental health professionals, reluctance to disclose depressive symptoms and the protective value of Chinese cultural factors may explain the important differences.

PSYCHOSES: A SERIOUS AND EMERGING PROBLEM IN CHINA

Unlike Western countries, China does not have a national health insurance system in which mental health service is available to all. Some patients with severe mental disorders remain untreated, especially in rural areas of China, possibly due to economic reasons [69]. Furthermore, lack of understanding about severe mental disorders among relatives and health professionals may reduce the chances of early detection and intervention [70]. Phillips et al. [71] found that relatives of patients suffering from schizophrenia attributed the causes of schizophrenia mainly to social, interpersonal and psychological difficulties. Family members in urban regions tended to attribute the illness to personality problems in the patients, while rural family members tended to attribute the illness to mystical or spiritual forces. Chinese families also tend to regard having a family member who suffers from a severe mental disorder as highly shameful. There is a high level of stigma and mentally ill patients are often targets of ridicule and fear [10].

39.5.1

Health burden of schizophrenia in China

In a recent large-scale survey in Beijing involving more than 5900 subjects in both rural and urban regions, the lifetime prevalence of schizophrenia, as defined by the Composite International Diagnostic Interview, was 0.49% [72], which is roughly similar to figures reported in the West. Furthermore, in the Xiang et al. [72] study, 9.7% of subjects with lifetime schizophrenia had attempted suicide at least once. The striking finding is that only 58% of those with schizophrenia were currently receiving treatment. In concordance with the discussions on stigma and understandings of mental illness above, only 29% of these subjects preferred seeking treatment from mental health professionals. What is worrying is that never receiving treatment may increase mortality [73] the standardized mortality ratio (SMR) of a recent largescale 10-year cohort follow-up study of patients suffering from schizophrenia revealed very high ratios of

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death due to suicide (SMR ¼ 94.5 for the 15 40 years group) and of death due to other causes (SMR ¼ 10.2 for the 15 40 years group). These ratios were much higher than in other developed countries [74]. This suggests an urgent need for public policy initiatives to promote understanding of severe mental disorders and reduce stigma [5].

39.5.2

Treatment interventions in China for schizophrenia

Another major problem associated with the treatment of psychosis in China is related to patterns of prescribing. For those hospitalized patients receiving antipsychotic medication, many were either receiving conventional antipsychotics or clozapine while second-generation antipsychotics were less commonly used [75]. Another descriptive study based on a literature search of Medline and the China National Knowledge Infrastructure Database (1979 2007) has confirmed that 26 60% of all treated patients with schizophrenia were receiving clozapine, a situation that is drastically different from Western countries. Although clozapine has now been recommended in the management guideline of treatment of schizophrenia as a second-line drug [76], one possible reason for such high levels of clozapine prescribing is that it is

39.6 39.6.1

still used commonly as a first-line treatment for schizophrenia and other associated conditions like mania or treatment-resistant depression in rural and some undeveloped provinces. The incidence of leucopenia was 3.92% and agranulocytosis was 0.21%; around one-third of reported cases with agranulocytosis died (around 7 deaths in every 10 000 patients exposed) [76]. This is much higher than the reported mortality rate associated with clozapine in the UK (risk of death from agranulocytosis is less than 1 in 10 000 patients exposed; Novartis reported 4 deaths from 47 000 exposed, as reported in Taylor et al. [77]). There is a pressing need to educate medical professionals in rural areas to restrict the prescription of clozapine to treatment-resistant schizophrenia and to enhance blood monitoring mechanisms for patients. Although there is some encouraging sound evidence of use of psychosocial interventions (social skills training, symptoms self-monitoring, and medication self-management) for schizophrenia in China (module-based psychosocial interventions reported by Xiang et al. [78] and lifestyle interventions for antipsychotic-induced weight gain by Wu et al. [79]), the provision of such psychological interventions remains restricted to top-tier centres. Similar encouraging studies on psychosocial interventions for schizophrenia are also developing in Hong Kong [80 82].

ADDICTION: A MAJOR PUBLIC HEALTH ISSUE IN MODERN CHINA

Illicit drug abuse

Before the founding of the People’s Republic of China in 1949, it was estimated that there were more than 20 million opiate abusers in the country, representing around 5% of the population [83]. Due to a determined crackdown in the early 1950s, drug abuse was then considered to be rare in China [84]. However, with the development of a market economy during the 1980s, China has experienced a rapid rise in drug use, predominantly heroin abuse. It has been estimated that there are around 1.16 million drug addicts in China, of which 75 85% of them are dependent on heroin [85,86]. The majority of heroin addicts are young, single, unemployed males with a low education

level [87]. Furthermore, there has been a steady rise in the use of amphetamine stimulants and ketamine, especially among the young [88]. Many drug abusers are also at high risk of contracting HIV, due to associated high-risk behaviours (e.g. unprotected sexual behaviour and practice of prostitution [89]). However, there is a heavy social stigma towards drug abusers, both in public and among health professionals [90]. Such discrimination reduces the accessibility of treatments for drug abusers and creates a vicious cycle of social marginalization and continued abuse. Furthermore, current interventions for drug abuse mainly focus on acute treatments with very limited availability of psychosocial treatments [91]. There is an urgent need to address stigmatization, to

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train up more professionals in addiction psychiatry, to incorporate more psychosocial elements into current treatment interventions for substance abusers, and to establish a national intergovernmental office with special responsibilities for the treatment of drug addiction [91].

39.6.2

Alcohol abuse

Alcohol abuse is a further serious public health problem in modern China. Alcohol is part of many traditional festivals and celebrations, and is associated with the arts and poetry, even medicine [92]. A wide range of alcoholic beverages are consumed in China, ranging from strong distilled liquor (over 50% ethanol) to rice wine (12 18% ethanol). The freemarket economy since 1978 has provided a new and ever-expanding market for alcohol. The rate of commercial production has increased sixfold from 0.4 kg per person in 1952 to over 2.5 kg by the end of 1978. The rate of growth continued up to 22.9 kg per person in 1997 and further to 43 kg per person in 2005 [93]. A 2001 World Health Organization (WHO) sponsored survey of 25 000 subjects in five centres in China showed an annual ethanol consumption of 4.5 litres among adults aged 15 years or older (see Reference [94] for details on the findings in China). This was low compared with other industrialized countries in the West (8.6 litres per person) [95]. Men drank

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more than women and heavy drinkers constituted 6.7% of the sample but 5.5% of all alcohol consumption. A six-centre survey conducted in China in 1994 (N ¼ 23 513) has also found a fourfold increase in alcohol-related admissions to psychiatric hospitals between 1980 and 1993. The prevalence of current alcohol dependence was 6.6% in men and 0.1% in women [96]. The prevalence of alcohol dependence had an inverse U-shaped association with family income (i.e. individuals with low or high income had a relatively low rate of alcohol dependence). Nationwide surveys covering 12 regions (N ¼ 12 000 households involving 38 136 persons) conducted ten years apart revealed a 40-fold increase (from 0.02% in 1986 to 0.68% in 1993) in the prevalence of ICD-9 defined alcohol dependence [97,98]. Multiple physical, psychiatric and social complications have been found in patients with alcohol dependence in China [99,100]. Current treatments of alcohol-related problems in China are mainly inpatient based and are expensive (hence not accessible to people without health insurance) [92]. A variety of interventions for alcohol dependence (medication like naltrexone, traditional Chinese Medicine, acupuncture and aversion therapy) have been described in case reports [101]. More rigorous high-quality trials are needed to assess the effectiveness of these interventions in the treatment of alcohol-related disorders in China. The use of selfhelp organizations like Alcoholics Anonymous is restricted to a few centres in China.

MENTAL HEALTH OF MIGRANT WORKERS IN CHINA: A NO-MAN'S LAND FOR EVERYONE?

Migration is a very stress-inducing phenomenon and has been associated with various psychiatric disorders [102]. According to the Gazette of the State Council of the People’s Republic of China, the number of migrant workers in the major cities of China exceeded 98 million in 2003 [103]. Most of the migrant workers come from central and western parts of China seeking work in eastern and coastal cities like Beijing, Shanghai and Shenzhen. As most migrant workers are uneducated and unskilled, they are usually employed in physically demanding but low-wage jobs in factories and construction industries [104].

As social welfare benefits are closely linked to residential status in the Household Registration System, migrant workers are excluded from social security and medical benefits in the cities. A recent survey has found that only 14% of migrant workers had health insurance, compared with 79% of local employees in the same city [105]. Due to their low work status in the cities and their nonentitlement to the subsidized rental system, many migrant workers live in poor housing environments [106]. They also experience discrimination and marginalization from urban residents, as they are often perceived by locals as a threat to social

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stability and as a source of crime in the cities [107]. Surveys of migrant workers in both Shenzhen [108] and Shanghai [109] found that around 25% of male migrant workers and 10% of female migrant workers could be considered to have psychiatric problems. The symptoms included obsession and compulsion, hostility, depression and phobic anxiety. Male migrant workers who were married and experienced financial and employment-related difficulties were at a high risk of having psychiatric problems. The heavy financial and family burden on male migrant workers reflected stress derived from the value placed on work for men in Chinese society [109]. As suggested by Bhugra [102],

39.8

migration itself is a complex phenomenon and the individual migrant goes through a series of stages of adjustment. The stresses of adjustment inevitably influence outcomes, which are further mediated by age, gender, whether migration is forced or voluntary, and whether migrants travel alone or in groups. Individual resilience and coping strategies also influence outcomes. As China continues to thrive economically, migrant workers’ mental health is likely to become a more important public health issue in the more prosperous cities along the coast. Their situation may be expected to improve in the medium term as the national economy develops further.

CONCLUSIONS

It is apparent that China is an immense, heterogeneous, rapidly changing society where peoples have experienced powerful and contradictory social forces. There is increasing evidence that mental health problems are on the rise in China. Over the past decade, the Chinese government has also issued a series of statements emphasizing that mental health is a top health priority. There is also an encouraging trend as high-quality research studies are increasingly being funded by the government. However, how such research evidence can be translated into real-world clinical practice is a formidable problem faced by a country with a population of over 1.3 billion people. Ensuring uniformity of standards of care and of types of mental health services available across rural and urban areas is a further challenging and yet pressing issue to be dealt with by the Chinese government.

REFERENCES 1. Kleinman, A. (1986) Social Origins of Disease and Distress: Depression, Neurasthenia and Pain in Modern China, Yale University Press, New Haven, Connecticut. 2. Shen, Y. C., Chen, C. H. and Zhang, W. X. (1986) An epidemiological investigation on mental disorders in 12 regions of China. Methodology and data analysis (in Chinese). Chinese Journal of Neurology and Psy chiatry, 19, 65 69.

3. Cooper, J. and Sartorius, N. (1996) Mental Disorders in China, Gaskell, London. 4. Murray, C. J. and Lopez, A. D. (1996) The Global Burden of Disease: A Comprehensive Assessment of Mortality and Disability from Diseases, Injuries, and Risk factors in 1990 and Projected to 2020, Harvard University Press, Cambridge, Massachusetts. 5. Phillips, M. (2004) Mental health problems in China the challenges and choices in the 21st century (in Chinese). Chinese Journal of Nervous and Mental Disease, 30, 1 10. 6. World Health Organization (WHO) (2000) The World Health Report 1999, WHO, Geneva. 7. WHO World Mental Health Survey Consortium (2004) Prevalence, severity and unmet needs for treatment of mental disorders in the World Health Organization World Mental Health Survey. Journal of American Medical Association, 29, 2581 2580. 8. Zhang, M. Y. (2006) Challenge to mental health ser vices in China: thinking from World Mental Health Survey (in Chinese). Journal of Shanghai Jiaotong University (Medical Sciences), 26, 329 334. 9. World Health Organization (WHO) (2005) Mental Health Atlas. The Mental Health: Evidence and Research Team (MER), WHO, Geneva. http://www. who.int/mental health/evidence/atlas. 10. Sun, X. L. (2007) Mental health service in general hospitals in China (in Chinese). Journal of Evidence Based Medicine, 7, 555 556. 11. Phillips, M. (1993) Strategies used by Chinese families in coping with schizophrenia, in Chinese Families in

EAST MEETS WEST: CURRENT MENTAL HEALTH BURDENS IN GREATER CHINA

12.

13.

14.

15.

16. 17.

18.

19.

20.

21.

22.

23.

24.

25.

the 1980s (eds D. Davis and S. Hannell), University of California Press, Berkeley, California. Yang, D. (2002) Development of community psychia try in China in the 21st century (in Chinese). Shanghai Journal of Psychiatry, 14, 2 8. Tian, W., Pearson, V., Wang, R. et al. (1994) A brief history of the development of rehabilitation services in China. British Journal of Psychiatry, 165 (suppl. 24), 19 27. Yip, K. C. (2007) Hong Kong development of psychiatric services, in Culture and Mental Health. A Comprehensive Handbook (eds K. Bhui and D. Bhugra), Hodder Arnold, London, pp. 283 286. Hong Kong College of Psychiatrists (2006) Position Statements on Development of Community Psychia tric Services in Hong Kong. World Health Organization (WHO) (2004) Health Survey Consortium. Phillips, M. R., Li, X. Y. and Zhang, Y. P. (2002) Suicide rates in China 1995 1999. Lancet, 359, 835 840. Phillips, M. R., Yang, G., Zhang, Y. et al. (2002) Risk factors for suicide in China: a national case control psychological autopsy study. Lancet, 360, 1728 1736. Lam, T. H., Stewart, S. M., Yip, S. F. et al. (2004) Suicidality and cultural values among Hong Kong adolescents. Social Science and Medicine, 58, 487 498. Yip, S. F., Law, C. K. and Law, Y. W. (2003) Suicide in Hong Kong: epidemiological profile and burden analysis. Hong Kong Medical Journal, 9, 419 426. Fortune, S. A. and Hawton, K. (2007) Culture and mental disorders: suicidal behaviour, in Textbook of Cultural Psychiatry (eds D. Bhugra and K. Bhui), Cambridge University Press, Cambridge, pp. 255 271. Pearson, V. and Liu, M. (2002) Ling’s death: an ethnography of a Chinese woman’s suicide. Suicide and Life Threatening Behavior, 32, 347 358. Li, X. Y., Phillips, M. R., Zhang, Y. P. et al. (2008) Risk factors for suicide in China’s youth: a case control study. Psychological Medicine, 38, 397 406. Mortensen, P. B., Agerbo, E., Erikson, T. et al. (2000) Psychiatric illness and risk factors for suicide in Denmark. Lancet, 355, 9 12. Qin, P. and Mortensen, P. B. (2003) The impact of parental status on the risk of completed suicide. Archives of General Psychiatry, 60, 797 802.

527

26. Yip, S. F. and Law, C. K. S. (2006) Report on Hong Kong Suicide Deaths in 2006, Hong Kong Jockey Club Centre for Suicide Research and Prevention, The University of Hong Kong. 27. Chen, E. H., Chan, W., Wong, P. et al. (2006) Suicide in Hong Kong: a case control psychological autopsy study. Psychological Medicine, 36, 815 825. 28. Ho, D. Y. (1989) Socialization in contemporary China. Asian Thought and Society, 14, 136 149. 29. Ho, D. Y. (1999) Filial piety and its psychological consequences, in Handbook of Chinese Psychology (ed. M. H. Bond), Oxford University Press, Hong Kong, pp. 155 165. 30. Chow, N. W. S. (1996) Filial piety in Asian Chinese communities. Hong Kong Journal of Gerontology, 10 (suppl.), 115 117. 31. Durkheim, E. (1951) Suicide, Free Press, New York. 32. Congdon, P. (1996) Suicide and parasuicide in London: a small area study. Urban Studies, 33, 137 158. 33. Whitley, E., Gunnell, D., Dorling, D. et al. (1999) Ecological study of social fragmentation, poverty and suicide. British Medical Journal, 319, 1034 1037. 34. Middleton, N., Whitley, E., Frankel, S. et al. (2004) Suicide risk in small areas of England and Wales, 1991 1993. Social Psychiatry and Psychiatric Epide miology, 39, 45 52. 35. Yen, Y., Yang, M., Yang, M. et al. (2005) Suicidal ideation and associated factors among community dwelling elders in Taiwan. Psychiatry and Clinical Neurosciences, 59, 365 371. 36. Lee, C. S., Chang, J. C. and Cheng, A. T. (2002) Acculturation and suicide: a case control psychologi cal autopsy study. Psychological Medicine, 32, 133 141. 37. Liu, K. Y., Chen, E. Y. H., Chan, C. L. W. et al. (2006) Socio economic and psychological correlates of suicidality among Hong Kong working age adults: results from a population based survey. Psychological Medicine, 36, 1759 1767. 38. Bland, R. C. (1997) Epidemiology of affective dis orders: a review. Canadian Journal of Psychology, 42, 367 377. 39. Hwu, H. G., Chang, I. H. and Yeh, E. K. (1996) Major depressive disorder in Taiwan defined by the Chinese Diagnostic Interview Schedule. Journal of Nervous and Mental Disease, 184, 497 502. 40. Hwu, H. G., Yeh, H. K. and Chang, L. Y. (1989) Prevalence of psychiatric disorders in Taiwan defined

528

41.

42.

43.

44.

45.

46.

47.

48.

49.

50.

51.

52. 53.

GLOBAL MENTAL HEALTH

by the Chinese Diagnostic Interview Schedule. Acta Psychiatrica Scandinavica, 79, 136 147. Simon, G. E., Vonkorff, M., Picvinelli, M. et al. (1999) An international study of the relation between somatic symptoms and depression. New England Journal of Medicine, 18, 1329 1335. Ma, X., Li, S. R., Xiang, Y. Q. et al. (2007) An epidemiological survey on depressive disorder in Beijing area (in Chinese). Chinese Journal of Psychia try, 40, 100 103. Cui, L. J., Li, K. Q., Jiang, Q. P. et al. (2007) The prevalence of major depressive disorders in Hebei Province from 2004 to 2005 (in Chinese). Chinese Journal of Psychiatry, 40, 140 143. Parker, G., Gladstone, G. and Chee, K. T. (2001) Depression in the Planet’s largest ethnic group: the Chinese. American Journal of Psychiatry, 158, 857 864. Parker, G., Chan, B., Tully, L. et al. (2005) Depression in the Chinese: the impact of acculturation. Psycho logical Medicine, 35, 1475 1483. Cheung, F. (1995) Facts and myths about somatiza tion among the Chinese, in Chinese Societies and Mental Health (eds T. Y. Lin, W. S. Tseng and E. K. Yeh), Oxford University Press, London, pp. 141 180. Chang, W. C. (1985) A cross cultural study of depres sive symptomatology. Culture, Medicine and Psychia try, 9, 295 317. Tsoi, W. F. (1985) Mental health in Singapore and its relation to Chinese culture, in The Psychology of the Chinese People (eds W. S. Tseng and Y. H. Wu), Academic Press, Orlando, Florida, pp. 229 250. Kim, H. S., Sherman, D., Ko, D. et al. (2006) Pursuit of happiness and pursuity of harmony: culture, relation ships, and social support seeking. Personality and Social Psychology Bulletin, 32, 1595 1607. Lin, N. (1989) Measuring depressive symptomatology in China. Journal of Nervous and Mental Disease, 177, 121 131. Pearson, V. (1995) Goods on which one loses: women and mental health in China. Social Science and Med icine, 41, 1150 1173. Beard, G. M. (1869) Neurasthenia or nervous exhaus tion. Boston Medical and Surgical Journal, 3, 217 221. Lee, S. (1999) Diagnosis postponed: shenjing shuairuo and the transformation of psychiatry in post Mao China. Culture, Medicine and Psychiatry, 23, 349 380.

54. Yan, H. (1985) Some psychological problems mani fested by neurotic patients: Shanghai examples, in Chinese Culture and Mental Health (eds W. S. Tseng and Y. H. Wu), Academic Press, New York, pp. 325 338. 55. Lee, S. and Wong, K. C. (1995) Rethinking neurasthe nia: the illness concepts of shenjing shuairuo among Chinese undergraduates in Hong Kong. Culture, Med icine and Psychiatry, 19, 91 111. 56. Liu, X. H. and Song, W. (1982) An epidemiological study of neuroses in Chengdu City (in Chinese). Chinese Journal of Neuropsychiatry, 19, 318 321. 57. Altschuler, L. L., Wang, X. D., Qi, H. Q. et al. (1988) Who seeks mental health care in China? Diagnoses of Chinese outpatients according to DSM III criteria and the Chinese classification system. American Journal of Psychiatry, 145, 872 875. 58. Zhang, W. X., Shen, Y. C. and Li, S. R. (1998) Epidemiological investigation on mental disorders in 7 areas of China (in Chinese). Chinese Journal of Psychiatry, 31, 69 71. 59. Kessler, R. C., McGonagle, K. A., Zhao, S. et al. (1994) Lifetime and 12 month prevalence of DSM III R psychiatric disorders in the United States: results from the National Co morbidity Survey. Archives of General Psychiatry, 51, 8 19. 60. Mjelde Mossey, L., Chi, I. and Lou, V. (2006) Rela tionship between adherence to tradition and depres sion in Chinese elders in China. Aging and Mental Health, 10, 19 26. 61. Chen, R., Copeland, J. R. and Wei, L. (1999) A meta analysis of epidemiological studies in depression in older people in the People’s Republic of China. Inter national Journal of Geriatric Psychiatry, 14, 821 830. 62. Newman, B. M. and Newman, P. R. (2001) Developing Through Life: A Psychosocial Approach, Brooks Cole, Belmont. 63. Taylor, E. (2007) Cultural differences in the impact of social support on psychological and biological stress responses. Psychological Science, 9, 831 837. 64. Morling, R., Kitayama, S. and Miyamoto, Y. (2003) American and Japanese women use different coping strategies during normal pregnancy. Personality and Social Psychology Bulletin, 29, 1533 1546. 65. Pillemer, K., Moen, P., Wethington, E. et al. (2000) Social Integration in the Second Half of Life, John Hopkins University Press, Baltimore, Maryland. 66. Mirowsky, J. and Ross, C. E. (1989) Social Cause of Psychological Distress, Aldine, de Gruyter, New York.

EAST MEETS WEST: CURRENT MENTAL HEALTH BURDENS IN GREATER CHINA

67. Ng, R., Bhugra, D., McManus, F. and Fennell, M. (2008) Relationship between filial piety and childhood maltreatment specific inferences in Hong Kong Chinese depressed outpatients. Paper presented at the First HK UK College of Psychiatrists Conference, 10 December 2008, Hong Kong (submitted for publication). 68. Ng, R. and Bhugra, D. (2008) Relationship between filial piety, mega cognitive beliefs about rumination and response style theory in depressed Chinese patients. Asian Journal of Psychiatry, 1, 28 32. 69. Ran, M. S., Chan, C. L. W., Chen, E. Y. H. et al. (2008) Mortality of geriatric and younger patients with schi zophrenia in the community. Suicide and Life Threa tening Behavior, 38, 143 151. 70. Ran, M. S., Chan, C. L. W., Xiang, M. Z. et al. (2003) Suicide attempts among patients with psychosis in a Chinese rural sample. Acta Psychiatrica Scandina vica, 107, 430 435. 71. Phillips, M. R., Li, Y., Stroup, A. et al. (2000) Causes of schizophrenia reported by patients’ family mem bers in China. British Journal of Psychiatry, 177, 20 25. 72. Xiang, Y. T., Ma, X. Cai, Z. J. et al., (2008) Prevalence and socio demographic correlates of schizophrenia in Beijing. Schizophrenia Research, 102, 270 277. 73. Ran, M. S., Chen, E. Y. H., Conwell, Y. et al. (2007) Mortality in people with schizophrenia in rural China: 10 year cohort study. British Journal of Psychiatry, 190, 237 242. 74. Osby, U., Correia, N., Brandt, L. et al. (2000) Mortality and causes of death in schizophrenia in Stockholm county, Sweden. Schizophrenia Research, 45, 21 28. 75. Mao, P. X., Tang, Y. L., Wang, Z. M. et al. (2007) Antipsychotic drug use in 503 Chinese inpatients with schizophrenia. International Journal of Psychiatry in Clinical Practice, 11, 29 35. 76. Tang, Y. L., Mao, P. X., Jiang, F. et al. (2008) Cloza pine in China. Pharmacopsychiatry, 41, 1 9. 77. Taylor, D., Paton, C. and Kerwin, R. (2007) Maudsley Prescribing Guidelines, 9th edn, Maudsley, London. 78. Xiang, Y. T., Weng, Y. Z., Li, W. Y. et al. (2007) Efficacy of community re entry module for patients with schizophrenia in Beijing, China: outcome at 2 year follow up. British Journal of Psychiatry, 190, 49 56. 79. Wu, R. R., Zhao, J. P., Jin, H. et al. (2008) Lifestyle intervention and metformin for treatment of antipsy chotic induced weight gain. Journal of American Medical Association, 299, 185 193.

529

80. Ng, R. and Cheung, M. (2006) Randomized controlled trial of social skills training in Chinese chronic schizo phrenic patients in Hong Kong. Hong Kong Journal of Psychiatry, 25, 37 45. 81. Ng, R., Hui, L. K. and Pau, L. (2008) CBT for treat ment resistant psychotic patients by novice therapists: Hong Kong experience. Hong Kong Journal of Psy chiatry, 18, 49 54. 82. Ng, R. and Cheung, M. (2008) Group supervision of CBT for psychosis for novice therapists: a Hong Kong experience. Hong Kong Journal of Psychiatry, 17, 124 130. 83. Bai, Y. T. (2001) The anti opium campaign movement in the early 1950s (in Chinese). CPC History, 10, 38 41. 84. McCoy, C., Lai, S., Metsch, I. et al. (1997) No pain no gain: establishing the Kunming, China, drug rehabi litation center. Journal of Drug Issues, 27, 73 85. 85. Information Office of the State Council of the People’s Republic of China (2000) Narcotics Control in China (in Chinese), Information Office of the State Council of the People’s Republic of China, Beijing. 86. Liu, Z. M., Lu, X. X., Mu, Y. et al. (2002) Epidemio logical features of drug abusers in China (in Chinese). Chinese Journal of Drug Abuse Prevention and Treat ment, 8, 27 30. 87. Lou, J., Li, J. H., Shi, H. H. et al. (2003) A survey of substance abuse among 2207 drug users in Yunnan. Chinese Journal of Drug Abuse Prevention and Treat ment, 9, 5 9. 88. Hao, W., Su, Z., Xiao, S. et al. (2004) Longitudinal surveys of prevalence rates and use patterns of illicit drugs at selected high prevalence areas in China from 1993 to 2000. Addiction, 99, 1176 1180. 89. Information Office of Ministry of Health (2006) Current Situation of HIV/AIDS Endemic in China (in Chinese), Ministry of Health, Beijing. 90. Tang, Y. L., Zhao, D., Zhao, C. and Cubellis, J. F. (2006) Opium addiction in China: current situations and treatments. Addiction, 101, 657 665. 91. Tang, Y. L. and Hao, W. (2007) Improving drug addic tion treatment in China. Addiction, 102, 1057 1063. 92. Shen, Y. and Wang, Z. (1998) China, in Alcohol and Emerging Markets (ed. M. Grant), International Cen ter for Alcohol Policies, Philadelphia, Pennsylvania, pp. 123 143. 93. State Statistical Bureau (2005) China Statistical Year book (in Chinese), China Statistical Publishing House, Beijing.

530

GLOBAL MENTAL HEALTH

94. Cochrane, J., Chen, H. H., Conigrave, K. M. et al. (2003) Alcohol use in China. Alcohol and Alcoholism, 38, 537 542. 95. World Health Organization (WHO) (2001) A Sum mary of Global Status Reports on Alcohol, WHO, Geneva. 96. Hao, W., Young, D. S., Xiao, S. Y. et al. (2001) Drinking patterns and related problems in six areas in China: Part IV, in Surveys of Drinking Patterns and Problems in Seven Developing Countries, WHO Department of Mental Health and Substance Depen dence, Geneva, pp. 116 130. 97. Collaborative Group (1986) Collaborative epidemio logical study on mental health disorders in 12 regions (in Chinese). Chinese Journal of Neurology and Psy chiatry, 19, 70 72. 98. Collaborative Group (1993) Collaborative Group investigation on alcohol dependence and related pro blems (in Chinese). Chinese Journal of Neurology and Psychiatry, 26, 3 5. 99. Chang, D. and Wang, Y. (1993) A clinical and patho logical study on alcohol liver disease analysis of 89 cases (in Chinese). Chinese Journal of Digestion, 13, 132 134. 100. Zhang, L., Welte, J. and Wieczorek, W. (2000) Alcohol and crime in China. Substance Use and Misuse, 35, 265 279. 101. Zhang, Y. (1992) The alcoholism treatment system in China, in Cure, Care or Control: Alcoholism Treat ment in Sixteen Countries (eds H. Klingemann,

102. 103.

104.

105.

106.

107.

108.

109.

J. P. Tanaka and E. Hunt), State University of New York, New York, pp. 269 275. Bhugra, D. (2004) Migration and mental health. Acta Psychiatrica Scandinavica, 109, 243 258. State Council (2004) Gazette of the State Council of the People’s Republic of China, April 2004, People’s Republic of China (in Chinese). Knight, J., Song, L. and Jia, H. B. (1999) Chinese rural migrants in urban enterprises: three perspectives. Journal of Developmental Studies, 35, 73 104. Feng, W., Zuo, X. J. and Ruan, D. C. (2002) Rural migrants in Shanghai: living under the shadow of socialism. International Migration Review, 36, 520 545. Shen, J. F. and Huang, Y. F. (2003) The working and living space of the floating population in China. Asia Pacific Viewpoint, 44, 51 62. Davin, D. (2000) Migrants and the media: concerns about rural migration in the Chinese Press, in Rural Labour Flows in China (eds L. A. West and Y. H. Zhao), Institute of East Asian Studies, University of California, Berkeley, California, pp. 278 291. Shen, Q. I., Lu, Y. W., Hu, C. Y. et al. (1998) A preliminary study of the mental health of young migrant workers in Shenzhen. Psychiatry and Clinical Neuroscience, 52 (suppl.), 370 373. Wong, D. F. K., He, X., Leung, G. et al. (2008) Mental health of migrant workers in China: prevalence and correlates. Social Psychiatry and Psychiatric Epide miology, 43, 483 489.

40 Social psychiatry in India R. Thara and R. Padmavati Schizophrenia Research Foundation (SCARF), Chennai, India

40.1

INTRODUCTION

This chapter provides a selective overview of key issues in the social psychiatry of India. We deal in particular with the role of families and their experiences and burden (see also Chapter 9), with the disabilities associated with mental disorders as they exist in India and the stigma experienced by both patients and families (see also Chapter 26). Relevant research within India is cited and discussed with reference to the sociocultural context. Two further topics are addressed. First, suicides in India have been

40.2

the focus of considerable concern, especially those among farmers and younger people, and we discuss this issue in detail. The epidemiological and social aspects of suicide in India determine medical, psychological and social methods of intervention. Second, competing and contrasting explanatory models of mental disorders held by the community result in varied patters of helpseeking behaviour. This has been studied in some detail in India and we introduce key issues and findings.

FAMILY CARE AND BURDEN

In India, it is an established fact that over 90% of the severe and chronic mentally ill live with their families [1]. Families are involved in all parts of the decision-making process regarding treatment, such as when to initiate treatment, where to go and how long to continue treatment. They are also primarily responsible for the continued care of the patients in the community and for ensuring adherence to treatment. This section will deal with family attitudes, burden and coping in Indian families.

One of earliest studies on this subject was the measurementof expressed emotion (EE) in an Indian sample and its comparison with data from the West. This was part of the WHO Determinants of Outcome project. It was found that EE in Indian families was lower than in London families. The inference frequently drawn is that this may, in part at least, account for the better outcomes for schizophrenia often observed in India [2]. Several scales on attitudes and burden have been developed in India. Some of them are the Family

Principles of Social Psychiatry, second edition Edited by Craig Morgan and Dinesh Bhugra Ó 2010 John Wiley & Sons, Ltd.

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Burden Scale of Reference [3] and the Burden Assessment Scale (BAS) developed by the Schizophrenia Research Foundation (SCARF), which measures both subjective and objective burden [4]. The financial burden of severe mental disorders is high in India. While state-run hospitals provide free treatment and medicines, they are few in number and exist only in urban areas. Besides, the middle and higher socioeconomic groups are not particularly comfortable using these services. To compound the problem, medical insurance schemes do not include mental health care and hence families largely bear the costs of illness both direct and indirect. Attempts have been made to correlate burden with functioning of patients. Loganathan and Murthy [5] in 2008 assessed functioning in 100 patients with schizophrenia and the burden and methods of coping of their primary caregivers, all of whom were family members. Fatalism and problem solving were the two most preferred ways of coping. Problem-focused coping, i.e. problem solving and expressive action, decreased the burden of caregivers, while emotion-focused coping, i.e. fatalism and passivity, increased it. As the level of functioning of the patient decreased, the coping strategies seemed to increase. The use of problemsolving coping by caregivers showed a significant correlation with higher-level functioning in patients. Rammohan et al. [6] found that families of persons with schizophrenia used denial and problem-solving strategies. The strength of religious belief and perceived burden were significant predictors of the wellbeing of carers. From this, the authors emphasized the need to reinforce religious coping methods as a component of family intervention programmes in India. A study of untreated or irregularly treated patients in a rural community by Murthy et al. [7] further showed a reduction of burden on the family and better functioning of the patients with the onset of regular treatment. Family burden is not confined to schizophrenia it is also felt by carers of persons with dysthymia, obsessive-compulsive disorder (OCD) and bipolar

40.3

disorder [8]. Gururaj et al. [9] compared the burden and quality of life in families of persons with schizophrenia and OCD and did not find significant differences, underscoring the need to also initiate structured programmes for families of persons with OCD. The WHO Collaborative Study on Strategies for Extending Mental Health Care [10] screened 259 families in four developing countries (Colombia, India, Sudan and the Philippines) for the social burden caused by mental illness in a family member. Levels of subsistence, previous illness, financial burden, personal relations and social acceptance were studied. The social burden was found to be greatest in the urban areas. With the breaking up of joint families, more nuclear families and more working women, families are increasingly seeking professional help to cope with mentally ill members of the family. This has therefore resulted in well-structured family intervention programmes in some centres, especially academic settings with better resources. Family education is a major component of this process and has been studied in some detail. Kulhara et al. [11] conducted a randomized controlled trial of family psychoeducation for both patients and families. Structured psychoeducational intervention was significantly better than routine outpatient care on several indices, including psychopathology, disability, caregiver support and caregiver satisfaction. The psychoeducational intervention package used was simple, feasible and inexpensive and the authors recommend it as a routine, viable facet of intervention for schizophrenia in India. Finally, an important offshoot of family involvement in the process of care has been the formation and maintenance of family support groups in the last decade. They consider themselves as micro-organizations demonstrating the virtues of ‘small is powerful’ and advocating family empowerment as the core of emotional strength and support to those with a disorder [12].

DISABILITY

Although the disability associated with mental illness has been recognized and placed on a par with other

disabilities through the Indian Persons with Disabilities Act 1996, very little is happening on the ground.

SOCIAL PSYCHIATRY IN INDIA

Certification of disability of mental disorders is not regularly carried out and as a result many disabled persons do not get the benefits they are eligible to obtain. This lack of support by the state increases further the burden on families. The common tools to measure disability in India are the World Health Organization Disability Assessment Schedule (WHO-DAS) and the Schedule for the Assessment of Psychiatric Disability [13]. The Indian Disability Evaluation and Assessment Scale (IDEAS), developed by the Indian Psychiatric Society, has been gazetted by the government of India as the official instrument for the measurement and certification of disability for official purposes. Most research in

40.4

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India has shown that schizophrenia is the most disabling of all conditions and certainly qualifies for support from the state. Chaudhury et al. [14] compared the disability of seven conditions using IDEAS in the north-western state of Assam and found that while schizophrenia was most disabling, it was closely followed by alcohol abuse and OCD. Disability in the occupational sphere is by far of most concern to the patient and the family since a job not only provides self-respect and self-esteem, but is also a means of augmenting the family income. Many rehabilitation programmes in India are therefore geared towards increasing work-related skills and job placement efforts.

STIGMA OF MENTAL DISORDERS

Stigma is the social devaluation of a person because of some personal attribute, leading to a sense of shame, disgrace and social isolation (see also Chapter 26). Many health conditions have been stigmatized, from leprosy in biblical times to HIV in this century. The stigma of mental illness is as old as the disorder itself and its negative consequences seem to play a role in the outcome of many disorders. It is still unclear whether the plethora of pharmacological and psychosocial interventions in clinics and in the community have had any impact on stigma. While Rabkin [15] and Bhugra [16] have stated that people are better informed about mental illness, it is again to be tested whether this has a lasting effect on perception and experience of stigma. In India and in many developing countries, caregiversand family members are subject to as much, if not greater, stigma as the patients. The nature and degree of stigma experienced by persons with schizophrenia was studied in 159 urban patients of the Schizophrenia Research Foundation in Chennai [17]. Using the Family Interview Schedule of the International Study of Schizophrenia, stigma experienced by primary caregivers was computed and divided into high and low stigma groups. Marriage, fear that neighbours would treat them differently and the extra efforts they had to make to hide the fact of mental illness from others were the predominant concerns. With 90% of marriages in India still being ‘arranged’ by the families, this

assumes overpowering importance when a girl reaches adolescence. If the fact of mental illness in a family is known to others, it could also jeopardize the chances of other members in the family getting married. This induces a lot of anxiety in parents who are seeking marriage proposals for their children yet to be married. Gender is also important. In the study noted above in Chennai, stigma was higher if the patient was female and women carers perceived more stigma. Attribution of the cause of mental disorders did not seem to be related to stigma since more than a third of the sample of carers had no explanation to offer as to what caused mental illness in their relative. Another study [18,19], completed at the same centre, on women with schizophrenia whose marriages had been broken revealed that families perceived this as a ‘dual tragedy’ and felt very stigmatized. Very few of these women received any support from their husbands after the onset of illness, and many were sent back to their parental families. Qualitative interviews held with these women and their primary caregivers brought up a lot of issues. One of them was that many women considered the break in marriage more stigmatizing than schizophrenia since they felt socially ostracized because of the failure of their marriage. Many hoped that some day the husband would take them back. The stigma of mental illness can therefore be compounded by social factors such as marital separation, infertility and childlessness.

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Stigma is not confined to urban areas. An interesting ethnographic piece of work by Jadhav et al. [20] has broken the myth that stigma of mental disorders is less in rural areas. An ethnographically derived and vignette-based stigmatization scale was administered to a general community sample comprising two rural and one urban sites in India. Rural Indians showed significantly higher stigma scores, especially those with a manual occupation, and many appeared to deploy a punitive model towards the severely mentally ill. The urban group, in contrast, expressed a more liberal view of severe mental illness. That said, urban Indians strongly expressed a reluctance to work with someone with a mental disorder; such views were rare among rural Indians. The authors conclude that the findings from this study do not fully support the industrialization hypothesis that is sometimes used to explain better outcomes of severe mental illness in lowincome countries; rather, the lack of a link between stigma and work attitudes in rural areas may (the authors suggest) contribute to the reported better outcomes. Loganathan and Murthy [5] also report stigma of mental illness in rural areas. The authors found in their sample that, while urban respondents of Karnataka (in southern India) felt the need to hide their illness and avoided illness histories in job applications, rural respondents experienced more ridicule, shame and discrimination. Beliefs about the causation of schizophrenia can clearly influence the attitudes that families adopt towards patients and their help-seeking behaviour. A fairly recent study of the cultural epidemiology of schizophrenia and stigma in Bangalore, involving detailed interviews with family caretakers of 60 patients, demonstrated how stigma, beliefs about illness and experiences of care all intertwine in shaping responses to illness and help seeking. The authors found, for example, that positive experiences of allopathic care for mental illness minimized stigma and,

40.5 40.5.1

from that, helped reduce reluctance to disclose problems and seek help [21]. Indian families have been typically described as often believing in causes like supernatural forces and therefore seeking help from magicoreligious healers. In the changing mental health scenario in India, this impression may require further study. Thara and Srinivasan [22] interviewed key relatives living with 254 chronic schizophrenia patients and asked them to name the causes they believed were responsible for the illness in their family member. A supernatural cause was named by only 12% of families and as the only cause by 5%. Psychosocial stress was the most commonly cited cause, followed by personality defects and heredity. A small number of families (14%) could not name any cause and 39% named more than one cause. Patient gender and education, duration of illness and the key relative’s education, and the nature of the relationship were related to the type of causal attributions made. In addition, it seems that urban families of patients suffering from chronic schizophrenia rarely subscribe to the idea of supernatural causation of the illness. Rather, their causal attributions tend to be more biological and psychological. Charles et al. [23] in Vellore observed that patients and families simultaneously held multiple and contradictory beliefs about the causation of illness and its treatment. A majority of respondents in this study had used at least two systems of healing, which included allopathic and traditional/magicoreligious/religious modes. Stigma scores of patients were associated with a belief in disease models, as well as karma and evil spirits as a cause of illness. The authors argue that holding specific beliefs can either increase or help individuals cope with stigma. While planning mental health services, it should be kept in mind that beliefs regarding attributions, explanatory models and stigma play no small role in the help-seeking pattern of patients with mental disorders.

SUICIDE IN INDIA

Rates of suicide

Suicide is one of the leading public health problems in India. Fourteen people commit suicide every hour in

the country according to the latest figures of the National Crime Records Bureau (NCRB) in 2007. The fact that attempted and completed suicide is still held to be a crime by an antiquated Indian law is the

SOCIAL PSYCHIATRY IN INDIA

reason why this department deals with suicide figures. In the last two decades, the suicide rate has increased from 7.9 to 10.8 per 100 000. There is a wide variation in the suicide rates within the country. The southern states of Kerala, Karnataka, Andhra Pradesh and Tamil Nadu have a suicide rate of >15 per 100 000 while in the northern states of Punjab, Uttar Pradesh, Bihar and Jammu and Kashmir, the suicide rate is <3 per 100 000. The former French colony of Pondicherry in south India has the highest suicide rate, followed by Andaman and Nicobar islands. These official figures may underestimate true rates. Two large epidemiological verbal autopsy studies in rural Tamil Nadu, for example, reveal that the annual suicide rate is six to nine times the official rate [24,25]. The most common modes of suicide seem to be poisoning, hanging and self-immolation.

40.5.2

Risk factors for suicide

Multiple factors impinge on the risk of suicide. The NCRB report cites, as the major causes of suicide: family problems; illness such as HIV/AIDS, cancers and strokes; and economic factors, such as bankruptcy and failure to repay loans. In addition, the young are particularly vulnerable, with many Indian studies finding higher rates in persons in the second, third and fourth decade of life. Ponnudurai and Jayakar [26], after reviewing 12 studies on suicides from different parts of India, concluded that the second and third decades of life seem to be the most susceptible period for Indian suicides. This imposes a huge social, emotional and economic burden on our society. The near-equal suicide rates of young men and women and the consistently narrow maleto-female ratio of 1.4: 1 denotes that relatively more Indian women die by suicide than their Western counterparts. There appears to be gender differences in the relevant risk factors. Divorce, harassment by husbands and their families for more dowry, failure in romantic relationships, difficulties in getting married and illegitimate pregnancy seem to be particularly important in the histories of women who commit suicide. A population-based study of domestic violence, for

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example, found this form of abuse was a contributory factor for 64% of Indian women expressing suicidal ideation [27].

40.5.3

Mental disorders and suicide

The risk factors noted above may link to suicide through their impact on mental health. Poor mental health is a major risk factor for suicide. However, there are few Indian studies that have carefully addressed this issue. What research has been done does confirm the link between mental disorder and suicide. For example, in a case-control study conducted in Chennai using verbal autopsy, Vijaykumar and Rajkumar [28] found strong associations between suicide and any Axis I disorder: depression and alcohol abuse were the main reasons for suicide. In a further study by Vijaykumar [29], personality disorder was diagnosed in 20% of completed suicides, a rate that was around nine times greater than in controls. More specifically, Cluster B personality disorder was found in 12% of suicides and comorbid diagnoses were found in 30% of suicides. Chavan et al. [30], in a psychological autopsy study of 101 suicide cases in the north-west of India, found that 34% had a psychiatric diagnosis. Within these, depression, alcohol-related disorders and epilepsy were the most common diagnoses. While as many as 57% of the subjects had shown behavioural change before the suicidal act, less than 12% sought treatment from mental health professionals. Social factors and mental health appear linked in increasing the risk of suicide. For example, unemployment appears relevant, as shown by figures from the study by Chavan et al. [30]. Over half the number of suicide victims (57%) were not permanent residents of the main city covered (Chandigarh) and had migrated from other states to eke out a living. They were living on the outskirts of Chandigarh in slum colonies and often had to change their homes. Migration, urbanization and the unhappy job scenario have all contributed substantially to suicides. The breakdown of the joint family system that had previously provided emotional support and stability may also be relevant.

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40.5.4

Farmer suicides

Rates of suicide in farmers has been an area of immense concern, not just for mental health professionals but also for the government of India and economists and sociologists. In Maharashtra alone, suicide by farmers crossed the 4000 annual mark for the third year in succession (NCRB). Since 1997 a total of 182 936 farmers have killed themselves. Chowdhury et al. [31], in their effort to identify the modus operandi in non-fatal deliberate self-harm (DSH) in the eastern state of west Bengal, found that a total of 5178 (1887 male and 3291 female) subjects were admitted to the Primary Health Centres during the study period from 1999 to 2001. Organophosphorous pesticide poisoning was found to be the most common method (85.1%) in DSH.

40.5.5

Religion, spirituality and suicide

Religion seems to be a protective factor both at the individual and societal levels. The psychological autopsy study in Chennai by Vijaykumar and Rajkumar [28] found that the lack of belief in God was over six times more common in cases (i.e. completed suicides) than controls. Those who committed suicide had less belief in God, changed their religious affiliation and rarely visited places of worship. Eleven per cent had lost their faith in the three months prior to suicide [32]. This finding was replicated by Gururaj et al. [33] in their psychological autopsy study in Bangalore.

40.6

Altruistic suicide has a long history in India, even being noted in the Dharmashastras, an ancient religious text. In ancient India, two forms of altruistic suicide were practised. One was Jauhar, a kind of mass suicide by women of a community when their menfolk suffered defeat in battle; the other was Sati, the suicide of a widow on the funeral pyre of her husband. The practice of Jauhar ended with the fall of the Muslim rule and the practice of Sati is against the law, although stray cases are still reported. The act of Sati is now seen as suicide, not as an altruistic act, and there are laws against abetment and glorification. The WHO’s suicide prevention multisite intervention study on suicidal behaviours (SUPRE-MISS) has revealed that it is possible to reduce suicide mortality through brief, low-cost intervention in developing countries. The need for a national plan and strategy to raise suicide awareness and work towards its prevention cannot be overemphasized. Programmes for suicide prevention for the Indian context will have to be designed, implemented and evaluated on a mass scal,e which will be applicable and effective in urban and rural areas. This would involve coordinated action by many players in the field, such as educationists, primary care doctors, mental health professionals, government bodies and nongovernmental organizations. Changes in the law are imperative and these have to be in keeping with international practices. Special attention needs to be given to young migrants, the elderly, victims of domestic violence and farmers.

MENTAL HEALTH, RELIGION AND HELP SEEKING

Religion and religious practices play a very important role in every aspect of life in Asia, as in many cultures across the world. Seeking help from a religious setting or faith healers is a common behaviour pattern among those suffering from any form of illness, particularly mental illness [34 37]. The variety and diversity of traditional health care practices is an indication of the great influence that sociocultural practices have on healing systems. The several sources of traditional and religious help available range from places of worship

like temples, durghas and churches to the ubiquitous roadside indigenous faith healer. Explanatory models of mental illness play no small role in the choice and continuation of treatment. Over several decades, studies exploring treatment-seeking behaviours for mental illnesses have discussed the relationship between attributions of cause for abnormal behaviour and source of treatment sought. Weiss et al. [38] explored this issue by studying patients presenting to allopathic psychiatric centres in India.

SOCIAL PSYCHIATRY IN INDIA

The authors sought to determine whether patterns of help seeking could be predicted from the conceptual model by which they understood their illness. History of prior consultations to other types of healers and explanatory models were obtained from the patients. Preliminary findings were notable for the pervasiveness of prior use of folk healers and the prominence of somatic symptoms among patients presenting to these allopathic physicians. A methodologically rigorous study in a rural population in south India [39] found that the explanations offered for psychoses, depression and hysteria were possessions by evil spirits, devils or a curse of God, warranting a religious or traditional mode of treatment. On the other hand, epilepsy and mental retardation were understood as having an organic basis. A more recent general population study [37], conducted in a rural area in northern India, found that magicoreligious systems were utilized by a substantial number of persons who attributed the illness to supernatural causes. The coexistence of several kinds of healers treating mental illness has been well documented in India [37,40]. Healing methods included penance, visits to a shrine, astrology and spirit possession to negotiate with the evil spirit. The choice of a particular healer is often made because of the perceived effectiveness of the healers in dealing with mental illness. This choice may be independent of the level of education or patient’s belief in the cause of illness [41]. Religious and traditional modes of treatment are adopted for a wide variety of psychiatric problems including anxiety states, depression, dissociative states and chronic psychoses [34,39]. Interestingly, across most of these studies, one is aware of the influence of sociocultural milieu on helpseeking behaviour patterns. The interconnectedness of social networks influencing treatment-seeking behaviour is evidenced by the fact that the main sources of information about causes of mental illnesses and resources for help tend to be from traditional healers, friends or relatives, astrologers or significant persons in the community [36,41 43]. In addition, help seeking for managing abnormal behaviours is usually a collective decision taken by families [39]. Suggestions from significant others in the community appear to be more easily accepted than

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a scientifically detailed explanation of causation by medical professionals. At least four motivational factors appear to determine decision making [44]. These are: (1) strong belief of the decision maker on faith healing; (2) easy approachability; (3) social stigma associated with psychiatric consultation; and (4) the belief system about the causation of mental illness. A shared belief system and a common understanding of the illness facilitate communication between the patient, family and the healer, thereby increasing the cooperation required for the efficacy of therapy. A common finding across studies has been the parallel access to various forms of care resources. This has involved not only religious/traditional and medical but also various forms of other medical systems, such as allopathy, ayurveda, unani, siddha and homeopathy. Studies have shown that the majority of the patients and families use multimodal therapies [39,45]. The interlink between various resources accessed for help seeking is informal, with no pattern or system for the vacillations between the resources. The persons using various systems do not appear to be destabilized by the different epistemologies and their components. The effectiveness of these modalities, together or alone, has also been described. A study from Kerala in south India, for example, examined reports of improvement and decline in short-term follow-up interviews and long-term recollections among patients in three forms of therapy for mental illness: ayurveda (indigenous), allopathic psychiatric (Western) and religious healing. The qualitative interviews indicated that the patients of all three therapeutic systems showed improvement after the assessments and several patients had radically divergent experiences with each of the three therapies. Each therapy was found by some to be helpful and ineffective by others. Based on these findings, Halliburton [46] proposed that the reported better outcomes of mental disorders in ‘developing’ countries may be accounted for by the greater availability of diverse forms of therapy that makes it more likely that an individual will find a therapy to which he/she responds well. The effectiveness of healing sites has been described in ethnographic studies. Raghuram et al. [47] used standardized clinical assessments of

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psychopathology in a temple in south India. A near 20% reduction in observed psychopathology scores was noted. Family caregivers also thought that most of the subjects had improved during their stay in the temple. The cultural power of residency in the temple, known for its healing potency, may have played a part in reducing the severe psychotic symptoms of the subjects. In another study [43], several ritualistic practices employed at various centres were documented. These included making offerings (money, in kind), engaging in physical acts like going around the place of worship, fasting, eating raw fruits like lime or letting oneself be chained. These rituals were viewed as necessary for recovery. These ritualistic practices appear to have a wide framework, incorporating social, religious and mythical domains, allowing the patients to express and resolve social and psychic suffering [48]. The pattern of utilization of traditional and indigenous systems has prompted the initiative of a formal collaboration between religious systems and the formal psychiatric care system. A rehabilitation centre was established in a place called Gunaseelam in south India, within the premises of a Hindu temple known for its religious healing of the mentally ill for over 200 years. A quasi-experimental integrated intervention programme was designed incorporating pharma-

40.7

cotherapy, rehabilitation strategies and spiritual (ritualistic) strategies (which have been followed as part of the temple’s healing practices). Assessments of psychopathology, family burden and quality of life of caregivers indicated an improvement after the interventions. The authors hypothesized that the improvement may have been the result of a combination of psychiatric interventions with the existing spiritual and ritualistic strategies [49]. Religious or traditional treatment options for persons with abnormal behaviours in the help-seeking trajectory for mentally ill patients has been repeatedly documented through several years of research. The underpinning of such help-seeking behaviours lies in the sociocultural explanatory system, which allows for the coexistence of several explanations at a point in time or for the evolution of explanations through time. The choice of the modality of treatment goes beyond the boundaries of religious faith. Ritualistic behaviours and their symbolic meanings are readily accepted and have a social sanction. Interlinks between various resources accessed for help is informal, with no specific overlaps between systems. Over time, a more formal collaboration between religious systems and more formal psychiatric care systems appears to be evolving, although the effectiveness of this collaboration would need to be studied.

CONCLUSION

We have here provided a brief overview of key issues for social psychiatry in India, focusing on the role of families, the specific problem of suicide and the plurality ofhelp-seekingresponses and resources.In this, many of the themes resonate with those evident in other contexts [40 43]. However, in India these find particular expression and pose specific challenges. Understanding and meeting these requires a social psychiatry perspective, both in research and in the delivery of care to those with a mental illness and their families.

2.

3.

4.

REFERENCES 1. Thara, R., Henrietta, M., Joseph, A. et al. (1994) Ten year course of schizophrenia the Madras long

5.

itudinal study. Acta Psychiatrica Scandinavica, 90, 329 336. Wig, N. N., Menon, D. K., Bedi, H. et al. (1987) Expressed emotion and schizophrenia in north India. II. Distribution of expressed emotion components among relatives of schizophrenic patients in Aarhus and Chandigarh. British Journal of Psychiatry, 151, 870. Pai, S. and Kapur, R. L. (1981) The burden on the family of a psychiatric patient: development of an interview schedule. British Journal of Psychiatry, 138, 332 335. Thara, R., Padmavati, R., Kumar, S. and Srinivasan, L. (1998) Burden assessment schedule. Indian Journal of Psychiatry, 40, 21 29. Loganathan, S. and Murthy, S. R. (2008) Experience of stigma and discrimination endured by people suffering

SOCIAL PSYCHIATRY IN INDIA

6.

7.

8.

9.

10.

11.

12.

13.

14.

15.

16.

from schizophrenia. Indian Journal of Psychiatry, 50 (1), 39 46. Rammohan, A., Rao, K. and Subbakrishna, D. K. (2002) Religious coping and psychological wellbeing in carers of relatives with schizophrenia. Acta Psychia trica Scandinavica, 105 (5), 356 362. Murthy, R. S., Kishore Kumar, K. V., Chisholm, D. et al. (2005) Community outreach for untreated schizophre nia in rural India: a follow up study of symptoms, disability, family burden and costs. Psychological Med icine, 35 (3), 341 351. Chakrabarti, S., Kulhara, P. and Verma, S. K. (1993) The pattern of burden in families of neurotic patients. Social Psychiatry and Psychiatric Epidemiology, 28 (4), 172 177. Gururaj, G. P., Math, S. B., Reddy, J. and Chandra shekar, C. R. (2008) Family burden, quality of life and disability in obsessive compulsive disorder: an Indian perspective. Journal of Postgraduate Medicine, 54 (2), 91 97. Harding, T. W., Climent, C. E., Diop, M. et al. (1983) The WHO collaborative study on strategies for extend ing mental health care, II: the development of new research methods. American Journal of Psychiatry, 140 (11), 1474 1480. Kulhara, P., Chakrabarti, S., Avasthi, A. et al. (2008) Psychoeducational intervention for caregivers of Indian patients with schizophrenia: a randomised controlled trial. Acta Psychiatrica Scandinavica, 119 (6), June, 472 483. Srinivasan, N. (2003) The story of AMEND The Association for the Mentally Disabled, in Meeting the Mental Health Needs of Developing Countries, vol. 17 (eds V. Patel and R. Thara), SAGE Publications, Thou sand Oaks, California, pp. 329 349. Thara, R., Rajkumar, S. and Valecha, V. (1988) Sche dule for the assessment of psychiatric disability a modification of DAS. Indian Journal of Psychiatry, 30 (1), 47 53. Chaudhury, P. K., Deka, K. and Chetia, D. (2006) Indian disability evaluation and assessment scale. Indian Psy chiatric Society, 48 (2), 95 101. Rabkin, J. (1974) Public attitudes toward mental ill ness: a review of the literature. Schizophrenia Bulletin, 10, 9 33. Bhugra, D. (1989) Attitudes towards mental illness. A review of the literature. Acta Psychiatrica Scandina vica, 80 (1), 1 12.

539

17. Srinivasan, T. N. and Thara, R. (2001) Beliefs about causation of schizophrenia: Do Indian families believe in supernatural causes? Social Psychiatry and Psychia tric Epidemiology, 36 (3), 134 140. 18. Thara, R., Kamath, S. and Kumar, S. (2003) Women with schizophrenia and broken marriages doubly disadvantaged? Part I: patient perspective. International Journal of Social Psychiatry, 49 (3), 225 232. 19. Thara, R., Kamath, S. and Kumar, S. (2003) Women with schizophrenia and broken marriages doubly disadvantaged? Part II: family perspective. Interna tional Journal of Social Psychiatry, 49 (3), 233 240. 20. Jadhav, S., Littlewood, R., Ryder, A. G. et al. (2007) Stigmatization of severe mental illness in India: against the simple industrialization hypothesis. Indian Journal of Psychiatry, 49 (3), 189 194. 21. Raghuram, R., Raghu, T. M., Vounatsou, P. and Weiss, M. G. (2004) Schizophrenia and the cultural epidemiol ogy of stigma in Bangalore, India. Journal of Nervous and Mental Disease, 192 (11), 734 744. 22. Thara, R. and Srinivasan, T. N. (2000) How stigmatiz ing is schizophrenia in India? International Journal of Social Psychiatry, 46 (2), 135 141. 23. Charles, H., Manoranjitham, S. D. and Jacob, K. S. (2007) Stigma and explanatory models among people with schizophrenia and their relatives in Vellore, South India. International Journal of Social Psychiatry, 53 (4), 325 332. 24. Gajalakshmi, V. and Peto, R. (2007) Suicide rates in Tamil Nadu, south India: verbal autopsy of 39,000 deaths in 1997 98. International Journal of Epidemiol ogy. DOI: 10.1093/ije/dyl308 25. Joseph, A., Abraham, S., Muliyil, J. P. et al. (2003) Evaluation of suicide rates in rural India using verbal autopsies, 1994 9. British Medical Journal, 326, 1121 1122. 26. Ponnudurai, R. and Jayakar, J. (1980) Suicide in Madras. Indian Journal of Psychiatry, 22, 203 205. 27. The World Health Organization (WHO) (2001) The World Health Report, WHO, Geneva. 28. Vijayakumar, L. and Rajkumar, S. (1999) Are risk factors for suicide universal? A case control study in India. Acta Psychiatrica Scandinavica, 99, 407 411. 29. Vijayakumar, L. (2004) Altruistic suicide in India. Archives of Suicide Research, 8, 73 80. 30. Chavan, B. S., Singh, G. P., Kaur, J. and Kochar, R. (2008) Psychological autopsy of 101 suicide cases from

540

31.

32. 33.

34.

35.

36.

37.

38.

39.

GLOBAL MENTAL HEALTH

northwest region of India. Indian Journal of Psychiatry, 50 (1), 34 38. Chowdhury, A. N., Banerjee, S., Brahma, A. and Bis was, M. K. (2007) Pesticide poisoning in non fatal deliberate self harm: a public health issue: study from Sundarban delta, India. Indian Journal of Psychiatry, 49 (4), 262 266. Vijayakumar, L. (2002) Religion: a protective factor in suicide. Suicidologi, 2, 9 12. Gururaj, G., Isaac, M., Subhakrishna, D. K. and Ran jani, R. (2004) Risk factors for completed suicides: a case control study from Bangalore, India. Interna tional Journal of Injury Control and Safety Promotion, 11, 183 191. Sathija, D. S. and Nathawat, S. S. (1984) Psychiatry in Rajasthan, in Psychiatry in India (eds A. D. DeSousa and D. E. DeSousa), Bhalani Press, Bombay, pp. 119 138. Campion, J. and Brugha, D. (1997) Experiences of religious healing in psychiatric patients in south India. Social Psychiatry and Psychiatric Epidemiology, 32, 215 221. Kua, E. H., Chew, P. H. and Ko, S. M. (1993) Spirit possession and healing amongst Chinese psychiatric patients. Acta Psychiatrica Scandinavica, 88, 447 450. Sharma, P., Vohra, A. K. and Khurana, H. (2007) Treatment seeking behavior of mentally ill patients in a rural area: a cross sectional study. Indian Journal of Community Medicine, 32 (4), 290 291. Weiss, M. G., Sharma, S. D., Gaur, R. K. et al. (1986) Traditional concepts of mental disorder among Indian psychiatric patients: preliminary report of work in progress. Social Science and Medicine, 23 (4), 379 386. Thara, R., Islam, A. and Padmavati, R. (1998) Beliefs about mental illness: a study of a rural South Indian

40.

41.

42.

43.

44.

45.

46.

47.

48.

49.

community. International Journal of Mental Health, 27 (3), 70 85. Kapur, R. (1979) The role of traditional healers in mental health care in rural India. Social Science and Medicine, 13B, 27 31. Jiloha, R. C. and Jugal, K. (1997) Supernatural beliefs, mental illness and treatment outcome in Indian patients. Indian Journal of Social Psychiatry, 13 (3/4), 106 113. Razali, S. M., Khan, U. A. and Hasanah, C. I. (1996) Belief in supernatural cuses of mental illness among Malay patients: impact on treatment. Acta Psychiatrica Scandinavica, 94, 229 233. Padmavati, R. (2005) Community mental health care in India. International Review of Psychiatry, 17 (2), 103 107. Banerjee, G. (1997) Help seeking behaviour and belief system. Editorial. Indian Journal of Social Psychiatry, 13 (3/4), 61 64. Madan, T. N. (1969) Who chooses modern medicine and why?, in Main Currents in Indian Sociology, vol. IV (ed. G. R. Gupta), Vikas, New Delhi, pp. 107 124. Halliburton, M. (2004) Finding a fit: psychiatric plur alism in South India and its implications for WHO studies of mental disorders. Transcultural Psychiatry, 41 (1), 80 98. Raghuram, R., Venkateshwaran, A., Ramakrishna, J. and Weiss, M. G. (2002) Traditional community resources for mental health: a report of temple healing from India. British Medical Journal, 325, 38 40. Pfleiderer, B. (1988) The semiotics of a ritual healing in a north Indian Muslim shrine. Social Science and Medicine, 27, 417 424. Stanley, S. and Shwetha, S. (2006) Integrated psycho social intervention in schizophrenia: implications for patients and caregivers. International Journal of Psychosocial Rehabilitation, 10 (2), 113 128.

41 Social psychiatry in Africa: Evidence and Challenges Oye Gureje and Victor Makanjuola Department of Psychiatry, University of Ibadan and University College Hospital, Ibadan, Nigeria

41.1

INTRODUCTION

Africa, regarded as the cradle of the human race [1], is the second-largest continent on earth. With an estimated 922 million people, it is also the second most populous continent [2]. Africa is the only continent that extends from the northern temperate to the southern temperate zones, encompassing numerous climate areas [3]. One-fifth of the earth’s land area is in Africa, covering 6% of the earth’s total surface area. Almost all of its 53 component countries are multiethnic, and a variety of colonial experiences, with associated cultural and linguistic influences, further deepens the diversity. In contrast to the ethnic, cultural and linguistic diversity, there is a striking similarity in the current

41.2

economic fortunes of most of the countries in Africa. The continent is home to some of the poorest countries in the world. Over 70% of sub-Saharan African populations live in slums [4]. The United Nations human development report in 2003, in its rankings based on the Human Development Index (HDI), had African countries occupying the bottom 25 positions [5]. Only a few of the countries on the continent achieve the status of ‘upper middle income’ in the World Bank classification of the economic well-being of countries. This widespread poverty means that resource constraints run through the health care systems of most of the countries, with only marginal variations in the range of services available to their peoples.

EPIDEMIOLOGY OF MENTAL DISORDERS

Misconceptions about the prevalence of psychiatric disorders among Africans were rife in the colonial period. These early views were often influenced by

colonial political interests and often betrayed a lack of sensitivity to the culture and traditions of the indigenous people. For example, Carothers, one of the prominent

Principles of Social Psychiatry, second edition Edited by Craig Morgan and Dinesh Bhugra Ó 2010 John Wiley & Sons, Ltd.

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researchers of that era, reported that Africans lacked ambition and often exercised poor judgement and were therefore unlikely to be capable of governing themselves. To buttress his point, he gave the example of a ‘certain good mental health attendant who upon resuming from his usual home leave got a message that a distant relation of his was very ill; he requested leave to attend to the ill relative but hewas denied with a warning that if he should leave his post to attend to the relative’s need, he would have to forfeit his current exalted post and his gratuity for which he was qualified having worked for more than 15 years. Undeterred, he was reported to have gone to attend to the needs of the relative and came back to restart his career from the bottom’ without an apparent regret of his action. This was interpreted by Carothers as absolute lack of ambition in the African, unmindful of the strength of social integration and connectedness that made it imperative for the man in question to respond to the needs of a relative. Writing mainly from his experience in Kenya, Carothers concluded that the incidence of insanity among Africans in their ‘primitive state’ was exceedingly low and that the more contact the African had with Europeans the higher the rates of psychiatric disorders in them [6,7]. Among several other controversial claims made by Carothers were that the normal African mentality resembled that of European psychopaths and that Africans lacked foresight, their behaviour being governed by passing emotions. However, not all colonial researchers had the same views as Carothers. For example, Tooth [8], working in West Africa (Gold Coast), examined 173 patients and described disorders previously reported in European populations. He also found no evidence of a higher prevalence of psychosis among those exposed to Western influence and education compared with the rest of the population. The common and obvious critique of these early works is the use of observations made on hospitalized patients to draw conclusions that were then generalized to the rest of the population. By the 1960s, the decade during which most African countries gained independence, efforts had begun to improve on these earlier studies with the advent of major communitybased epidemiological surveys. Examples of such studies include those conducted among the Yorubas of south-west Nigeria [9], among the ‘coloured’ people of the Cape Peninsula and in Ethiopia [10,11]. The

central finding of much of this work was the remarkable similarity in the profile of psychiatric disorders in the African samples compared with their European and American counterparts, a striking difference from the findings of some of the earlier studies. The Cornell-Aro study perhaps best exemplifies the message of this early generation of epidemiological surveys [9]. Conducted as a comparative study in Stirling County in Canada and a community in Abeokuta in Nigeria, with the use of similar methodologies, the major findings included a high rate of ‘psychophysiologic and psychoneurotic symptoms’ at both sites, similar patterns and distributions of symptoms, but a higher symptom level in Yoruba men than women, unlike the reverse among the Canadians. Even at that time, social factors were already found to be important in the occurrence of mental disorders with community disintegration, suggested by poverty, ineffective leadership and broken homes, being common among symptomatic Yoruba respondents. In general, it is now accepted that the burden of mental disorders is no less important in Africa than it is in other parts of the world. Even though communicable, maternal, perinatal and nutritional disorders continue to constitute the greatest disease burden in much of Africa, neuropsychiatric disorders nevertheless accounted for about 10% of the total disability adjusted life years (DALYs) in 2005 and more than 25% of the DALYs due to noncommunicable disease in the same year [12,13]. When specific contextualization of the global burden of disease methodology has been attempted in Africa, the impact of mental disorders has been shown to be considerable. In South Africa, for example, neuropsychiatric disorders account for a significant proportion of years lost due to disability, second only to the years lost due to HIV/ AIDS [14,15]. The recent advent of new ascertainment tools, with some being applicable by trained lay interviewers, has led to increasingly more sophisticated epidemiological surveys from Africa. Today, several studies in primary care [16 18] and in the general adult population [9,19 21] have provided estimates of the extent of mental disorders in several African countries. Even though concerns about the applicability of some measures in the various African cultures remain, there is now no doubt that most commonly reported mental disorders in other racial

SOCIAL PSYCHIATRY IN AFRICA: EVIDENCE AND CHALLENGES

groups are present among African peoples. The earlier claims that some conditions were either not present or were so different in their presentations as to question their equivalent identity with similar conditions in Western Europe or North America now seem substantially repudiated [22 27]. Differences in the phenomenology and explanatory models of common mental

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disorders are, however, recognized [26,28,29]. On the other hand, where differences in rates have been empirically shown to occur, suggestions have been made that such differences may offer opportunities for examining possible lifestyle or genetic factors that may predispose to the development of mental disorders [30,31].

THE SOCIAL AND CULTURAL CONTEXT IN WHICH MENTAL ILLNESS IS EXPERIENCED

The assessment of mental disorders can be influenced by cultural differences between the patient and the physician. When the cultural idioms of expression of a syndrome by a patient are alien to the clinician, significant error can occur in the evaluation of what the patient suffers from. The result of such differences is exemplified by the literature on the occurrence and presentation of depression among Africans. Other than pronouncements made on the rarity of depression, early psychiatrists working in the continent, most of them being from Western Europe, also suggested that guilt feelings, self-deprecation, psychomotor retardation and associated suicidal behaviours were far less prevalent in Africa than in the West. More recent studies, conducted by African psychiatrists, have found that not only is depression a common psychiatric disorder in Africa but that the core symptoms of the illness can be elicited with culturally sensitive assessments [22,24,25,32 34]. Likewise, there are now simple interpretations for some of the so-called culture-bound syndromes that were reported in Africa in the 1960s and 1970s. For example, in his study of patients in rural Accra, Field [35] described spontaneous self-accusation of witchcraft by women. A similar feature, called jasfur, was reported by Diop [36] and described as a firm but false belief by patients that they had eaten human flesh. However, it is now commonly understood that these are indeed forms of delusions of guilt in the context of depression. One common misconception that has persisted despite empirical evidence to the contrary is that Africans are more likely to somatize [37]. The expression of psychological distress in the idiom of bodily language, which is presumed to underpin the concept

of somatization or medically unexplained symptoms, is often suggested to be associated with less psychological sophistication or a lack of adequate psychological language to describe emotional distress on the part of its sufferers. There has, however, been no convincing demonstration of this ‘lack of psychological sophistication’ among somatizers. Studies in many parts of the world show that somatization, irrespective of the way it is defined, is common in every culture [37]. Nevertheless, the myth about higher rates of somatization by Africans, or in some instances ‘patients from developing countries’, persists. Even though several studies have shown that patients with psychological illness in general, and those with depression in particular, often present with multiple bodily symptoms everywhere, the question about whether Africans do so more than other racial groups can only be addressed in a cross-cultural comparative study. Such a study will have to be conducted in similar settings, use identical ascertainment procedures and elicit a broad array of symptoms including those that are likely to be peculiar to the participating cultures. The research project ‘Psychological Problems in General Health Care’ (PPGHC), a WHO collaborative study conducted in general health care settings in 14 countries, fulfilled such characteristics and provided a good basis for examining the claim about the differential occurrence of somatization [38]. Conducted in Ankara, Turkey; Athens, Greece; Bangalore, India; Berlin and Mainz, Germany; Groningen, the Netherlands; Ibadan, Nigeria; Manchester, UK; Nagasaki, Japan; Paris, France; Rio de Janeiro, Brazil; Santiago, Chile; Seattle, USA; Shanghai, China; and Verona,

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Italy, the project utilized similar ascertainment procedures across the sites, thus facilitating the crosscultural comparability of rates of several possible definitions of somatization. Reports of estimates of DSM-IV-defined categories of somatization and hypochondriasis and of subthreshold forms of these disorders as well as syndromes of pain disorder have been published [39 42]. A central finding of these reports is that, irrespective of the definitions used, somatization is common across diverse cultural settings and that, even though variations in rates are evident, Africans are no more (or, indeed, less) likely to somatize than patients from other racial and cultural groups. An interesting observation was that the tendency to somatize was associated with some attributes of the clinics where patients had sought

41.4

care [42,43]. Patients were more likely to somatize when they attended clinics in which personalized care, such as the receipt of follow-up from the same clinicians and documentation of clinical consultation in a personal file, was less common. Many clinics in sites from developing countries provided less personalized care than those from developed countries, even though this difference was not without exception. Nevertheless, on the basis of the results of this large cross-cultural study in primary care, there was no empirical support for the suggestion that African patients with psychological problems somatize more than those from other parts of the world. The study also suggests that the context in which care is sought and received is important in the way psychological distress is expressed.

MODELS OF MENTAL ILLNESS

Does the African model of mental illness bear any resemblance to that of other cultures, especially the Western biomedical model? Patel et al. [26] in a review of explanatory models of mental illness in sub-Saharan African (which includes publications from 11 sub-Saharan African countries) examined the African concepts of the mind, the classification and aetiological models of mental illness and the phenomenology of mental illness. He concluded that sub-Saharan African cultures do distinguish between the mind and the body, as far as illness experiences were concerned. Some evidence in support of this comes from studies in Guinea showing that respondents were able to distinguish between major mental disorders and somatic illness [43]. Also, Beiser et al. [44], working in Senegal, showed that the Serer people did differentiate ‘illness of the spirit’, which is analogous to mental disorders, from purely somatic illness. These observations were contrary to earlier suggestions that the African concept of health did not differentiate mental from physical illness. Further evidence in support of the fact that traditional views of ill-health in Africa make a distinction between mental and somatic illness is provided by the existence of traditional healers in Nigeria, Zimbabwe, Kenya

and Botswana who specialize in the treatment of mental disorders alone [45 48]. Indeed, the complexity of some of the traditional African beliefs concerning psychic functioning is demonstrated by the observation that the Shona people of Zimbabwe’s concept of mankind has been likened to the three components in Sigmund Freud’s conceptualization of the structure of the mind [49]. Prior to the advent of Western medical practice, indigenous African people had recognized the features of mental illness. Furthermore, African traditional mental health experts had a system of categorization or classification of mental disorders that probably facilitated discussion among them and between them and their clients. In sub-Saharan Africa, mental illness is often classified on both an aetiological and phenomenological basis. Studies conducted in Nigeria among traditional healers revealed that the healers commonly classify mental disorders into three major phenomenological groups [50]: a group broadly encompassing psychotic disorders, a less severe group of disorders often characterized by the presence of somatic symptoms and mental retardation. Possible aetiological factors included supernatural affliction from enemies, substance abuse (including misuse of

SOCIAL PSYCHIATRY IN AFRICA: EVIDENCE AND CHALLENGES

cannabis and alcohol), hereditary influences, epilepsy, breaking of social taboos, being breastfed by a mentally ill woman, severe fever, head injuries and infections. Somewhat similar categories and indigenous classificatory systems have been described in Ethiopia [51], among the people of Berekuso in Ghana [52], in Kenya [46], among Amaxhosa people of southern

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Africa [53] and among the Shona people of Zimbabwe [49,54,55]. An interesting finding in the Kenyan study was that urban traditional healers placed less emphasis on spirit-related causes compared with rural healers, reflecting a possible diminishing concern with ancestral spirits among the more educated urban population [46].

SOCIAL DETERMINANTS OF MENTAL DISORDER

Patel and Kleinman [56], in a discussion of poverty and common mental disorders in developing countries, identified low income, poverty, insecurity, hopelessness, social change, education, female gender, medical morbidities, and malnutrition and poor environment as key social determinants of mental health and illness. That social factors play a major role in the genesis of mental disorders in Europe and America has long been established [57,58]. Africa, with pervasive poverty (over 50% live on less than 1 dollar per day), widespread social inequalities and frequent social upheavals, on the one hand, and a complex, robust, culturally ingrained social support and networking system, on the other hand, provides a unique opportunity for investigating the impact of social factors on mental health. This is particularly so as some reports have suggested that social determinants of mental health may vary between developed and developing countries [59]. The relationship between poverty and mental illness in an African setting may indeed be complex. The traditional support systems that may offer protection against mental illness is breaking down in large towns and cities but is still relatively intact in the villages. On the other hand, socioeconomic difficulties are more prevalent in the rural areas compared with urban settings. Also, there may be differential effects on mental health between living in a community where everyone is poor and living in one where one’s perception is that of economic disadvantage relative to others. In this regard, it probably cannot be assumed that absolute poverty is more likely to be associated with mental illness than relative (or subjective) poverty. Research into the distribution of mental disorders in European and North American populations has

documented a higher prevalence of disorders in groups of lower socioeconomic class [60 62]. Findings from Africa are equivocal. Gureje and Jenkins [63] found a lower prevalence of mental disorders in low-income households (one of the measures of socioeconomic class) while Myer et al. [64], using a comprehensive method of assessing socioeconomic status, which incorporated an asset index reflecting both individual and household wealth in addition to the traditional indicators of socioeconomic class, found that the lower the socioeconomic class, the greater the likelihood of reporting nonspecific psychological distress in an adult South African population (76% of respondents were black Africans). This relationship was found to follow a dose- response pattern. An emerging concept in mental health research is that of social capital. Simply put, social capital is a concept that refers to connections within and between social networks as well as connections among individuals. Recent studies have suggested there may be some qualities of communities and neighbourhoods that may contribute to or protect against the development of common mental disorder [65]. One study reported that membership of community groups (in this study, primarily church groups) of women in Lusaka, Zambia and Durban, South Africa, was associated with better self-rated mental health [66]. A similar finding was reported in a survey of a nationally representative sample of adult South Africans, despite an inverse relationship between bonding social capital and socioeconomic class [64]. This has led to suggestions of a probable mitigating effect of social capital on the negative effects of lower socioeconomic class on mental health [66].

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41.6

STIGMA AND SOCIAL DISTANCE

There has been a suggestion that stigmatization of the mentally ill is rare among Africans [67]. Indeed, Carothers [6,7] had asserted that ‘Every individual in an African community . . . is regarded as a valuable asset by his clan . . . (and) unlike in civilized communities, the unwanted individual hardly occurs.’ Probably, these suggestions by earlier workers were the basis of the claim that a more positive, accommodating, supportive and less stigmatizing attitude towards the mentally ill could have been responsible for the observation that patients in developing countries suffering from severe mental illness appeared to have better outcomes than their counterparts in the developed nations [66,68,69]. However, more recent studies focusing on the attitude of Africans towards

41.7

mental illness have cast doubts over these claims. In a community survey of attitudes towards mental illness and the mentally ill in south west Nigeria, Gureje et al. [70] reported widespread negative attitudes, with less than 4% of the respondents saying they would consider marrying someone with mental illness. Similarly, Adewuya and Makanjuola [71] reported a high degree of social distancing from the mentally ill in three different communities in the south-west of Nigeria. Such negative societal attitudes have sometimes been extended to the members of their immediate families [72]. Not surprisingly, beliefs in the supernatural causation of mental illness and that sufferers are in some way deserving of their lot often lie at the root of such negative attitudes [73].

PROFILE OF MENTAL HEALTH SERVICES

Early psychiatric services were offered in asylums that were commonly established by colonial administrations. For example, in Nigeria, the first asylum was established in Calabar in 1904, while in Nairobi, Kenya, the Mathari hospital started functioning in 1910. Much of modern mental health care is still offered in these standalone mental hospitals. In many countries on the continent the great proportion of available psychiatric beds are located in these hospitals. For example, more than 90% of the total psychiatric beds in Nigeria are located in the eight psychiatric hospitals in the country. Mental health services in Egypt are provided predominantly by the four public psychiatric hospitals with a total of 5800 beds in Cairo and a further 1200 psychiatric beds distributed over the rest of the country [74]. Psychiatric services in South Africa are provided by 24 registered public psychiatric hospitals accommodating some 14 000 acute and longterm care patients [75]. To varying degrees, services provided by psychiatric hospitals are complemented by psychiatry units of teaching hospitals and in countries such as Kenya by provincial or general hospitals. In South Africa, public psychiatric facilities provide care for about 80% of patients, with the remaining 20% receiving care from private practice [75]. In general,

most African countries are yet to have a fully mainstreamed mental health service, in which patients with mental disorders are treated in the same facility as those with physical illnesses. In particular, effective community services are yet to be fully developed in Africa. Even in Nigeria where Adeoye Lambo, the country’s first indigenous psychiatrist, pioneered the village community treatment programme [76], formal community mental health programmes are still rudimentary. In other parts of the continent, there are smallscale programmes that could provide models for effective integration of mental health services into primary care, as has been shown in Guinea-Bissau [77], and for comprehensive culturally applicable rehabilitation for persons with severe mental illness, as demonstrated in Tanzania [78]. In pioneering the Aro Village system in Nigeria, Lambo sought to integrate a Western medical approach with traditional support systems of the Yoruba. He encouraged patients to live in their traditional village setting, receiving the care and support of their relatives, while obtaining orthodox medical treatment provided by health professionals with Western medical training and expertise. It was an innovative attempt to integrate traditional support systems

SOCIAL PSYCHIATRY IN AFRICA: EVIDENCE AND CHALLENGES

with modern medical care. It had the potential to help patients recover quicker, minimize the disruptive effect of hospital admission and help improve community attitudes towards mental illness and the mentally ill. Unfortunately, the approach did not go beyond the experimental stage as no structure was developed to ensure its scaling up or adoption at the national level. In most African countries, traditional healers are frequently consulted for mental disorders [79]. A substantial proportion of persons who seek care in formal health sectors may have also consulted traditional healers along their pathway to care [80,81]. However, the proportions of persons with need who actually seek care from traditional healers is not

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known. A community-based survey in Nigeria suggests that only a minority of persons with common mental disorders have consulted traditional healers and that the majority of those who have received any care have done so from general health practitioners [19]. As in other parts of the world, most people with common mental disorders in Africa who receive any mental health care probably do so from general health care or primary health care providers. A major problem with calls for the integration of traditional healers into the formal mental health service is that the scientific base of the practice is still poorly understood even though a few researchers have shown interest in the practice and status of traditional healing [50,82].

CONCLUSION

There have been many misconceptions about the nature and distribution of mental disorder in Africa. Over time, evidence has accrued that demonstrates beyond doubt that the need for mental health care is substantial. At present, such care remains primarily centred in psychiatric hospitals and is unevenly distributed within and across African countries. The ‘scaling-up’ of mental health services in Africa, and indeed across the developing world, to deliver effective interventions at relatively low cost has enormous potential to relieve what is a major cause of suffering and disability.

REFERENCES 1. McDougall, I., Brown, F. H. and Fleagle, J. G. (2005) Stratigraphic placement and age of modern humans from Kibish, Ethiopia. Nature, 433, 733 736. 2. United Nations (UN) (2006) World Population Pro spects: The 2006 Remission, United Nations (Depart ment of Economic and Social, Affairs, Population Division), New York 3. Visual Geography (2008) Africa. General Info. 4. United Nations (UN) (2003) Population, Health, and Human Well Being: Nigeria, United Nations (Popula tion Division), New York.

5. United Nations (UN) (2003) United Nations Develop ment Programme, Human Development Report, Oxford University Press, New York. 6. Carothers, J. C. (1953) The African Mind in Health and Disease: A Study of Ethnopsychiatry, World Health Organization, Geneva. 7. Carothers, J. C. (1948) A study of mental derangement in Africans, and an attempt to explain its peculiarities, more especially in relation to the African attitude to life. Journal of Medical Science, 93, 548 596. 8. Tooth, G. (1950) Studies in Mental Illness in the Gold Coast, HMSO, London. 9. Leighton, A. H., Lambo, T. A., Hughes, C. C. et al. (1963) Psychiatric Disorders among the Yoruba, Cornell University Press, New York. 10. Giel, R. and Van Luigle, J. N. (1969) Psychiatric morbidity in a small Ethiopian town. British Journal of Psychiatry, 115, 149 162. 11. Gillis, L. S., Lewis, J. B. and Slabbert, M. (1968) Psychiatric disorder amongst the coloured people of the Cape Penninsula. An epidemiologic study. British Journal of Psychiatry, 114, 1575 1587. 12. Murray, C. and Lopez, A. (1996) The Global Burden of Diseases: A Comprehensive Assessment of Mortality and Disability from Diseases, Injuries and Risk Factors in 1990 and Projected to 2020. World Health Organi zation and World Bank, Harvard School of Public Health, Boston, Massachusetts.

548

GLOBAL MENTAL HEALTH

13. Ustun, T. B., Ayuso Mateos, J. L., Chatterji, S. et al. (2004) Global burden of depressive disorder in the year 2000. British Journal of Psychiatry, 184, 386 392. 14. Bradshaw, D., Groenewald, P., Laubscher, R. et al. (2003) Initial burden of disease estimates for South Africa, 2000. South African Medical Journal, 93, 682 688. 15. Norman, R., Bradshaw, D., Schneider, M. et al. (2006) Revised DALY Estimates for the Comparative Risk Factor Assessment, South Africa, 2000, Medical Research Council, Cape Town. 16. Abas, M. A. and Broadhead, J. C. (1997) Depression and anxiety among women in an urban setting in Zimbabwe. Psychological Medicine, 27, 59 71. 17. Abiodun, O. A. (1993) A study of mental morbidity among primary care patients in Nigeria. Comprehen sive Psychiatry, 34, 10 13. 18. Gureje, O. (2002) Psychological disorders and symp toms in primary care: association with disability and service use after 12 months. Social Psychiatry and Psychiatric Epidemiology, 37, 220 224. 19. Gureje, O. and Lasebikan, V. O. (2006) Use of mental health services in a developing country: results from the Nigerian survey of mental health and wellbeing. Social Psychiatry and Psychiatric Epidemiology, 41, 44 49. 20. Kebede, D., Fekadu, A., Alem, A. et al. (2005) The distribution of mental disorders among an isolated island community in Southern Ethiopia. Ethiopian Medical Journal, 43, 71 77. 21. Ovuga, E., Boardman, J. and Wassermann, D. (2005) Prevalence of suicide ideation in two districts of Uganda. Archives of Suicide Research, 9, 321 332. 22. Binitie, A. (1981) The clinical manifestations of depression in Africans. Psychopathologie Africaine, 17, 36 40. 23. Gureje, O. (2007) Psychiatry in Africa: the myths, the exotic, and the realities. South African Psychiatry Review, 10, 11 14. 24. Majodina, M. Z. and Johnson, F. Y. A. (1983) Standar dized assessment of depressive disorders (SADD) in Ghana. British Journal of Psychiatry, 143, 442 446. 25. Odejide, A. O., Oyewunmi, L. K. and Ohaeri, J. U. (1989) Psychiatry in Africa: an overview. American Journal of Psychiatry, 146, 708 716. 26. Patel, V., Gwanzura, F., Simunyu, E. et al. (1995) The explanatory models and phenomenology of common mental disorders in Harare, Zimbabwe. Psychological Medicine, 25, 1191 1199.

27. Prince, R. H. (1967) The changing picture of depressive syndromes in Africa: Is it fact or diagnostic fashion? Canadian Journal of African Studies, 1, 177 192. 28. Makanjuola, R. O. (1987) ‘Ode ori’: a culture bound disorder with prominent somatic features in Yoruba Nigerian patients. Acta Psychiatric Scandinavica, 75, 231 236. 29. Swartz, L. (1998) Culture and Mental Health: A South ern African View, Oxford University Press, Cape Town. 30. Gureje, O., Ogunniyi, A., Baiyewu, O. et al. (2006) APOE epsilon4 is not associated with Alzheimer’s disease in elderly Nigerians. Annals of Neurology, 59, 182 185. 31. Hendrie, H. C., Ogunniyi, A. O., Hall, K. S. et al. (2001) Incidence of dementia and Alzheimer disease in 2 communities: Yoruba residing in Ibadan, Nigeria and African Americans residing in Indianapolis, Indiana. Journal of the American Medical Association, 285, 739 747. 32. Gureje, O., Kola, L. and Afolabi, E. (2007) Epidemiol ogy of major depressive disorder in elderly Nigerians in the Ibadan Study of ageing: a community based survey. Lancet, 370, 957 964. 33. Rwegellera, G. G. C. (1981) Cultural aspects of depres sive illnesses: clinical aspects and psychopathology. Psychopathologie Africaine, 17, 41 63. 34. Field, M. J. (1968) Chronic psychosis in rural Ghana. British Journal of Psychiatry, 114, 31 33. 35. Diop, B. (1975) Self Accusation as a Symptom of Depression, Ciba Geigy, Basle, pp. 25 26. 36. Bhugra, D. and Mastrogianni, A. (2004) Globalization and mental disorders. British Journal of Psychiatry, 184, 10 20. 37. Ustun, T. B. and Sartorius, N. (1995) Mental Illness in General Health Care, John Wiley & Sons, Inc., New York. 38. Gureje, O., Ustun, T. B. and Simon, G. (1997) Soma tization in cross cultural perspective: results from a World Health Organization study in primary care. American Journal of Psychiatry, 154, 989 995. 39. Gureje, O., Ustun, T. B. and Simon, G. (1997) The syndrome of hypochondriasis: a cross national study in primary care. Psychological Medicine, 27, 1001 1010. 40. Gureje, O., VonKorff, M., Simon, G. E. and Gater, R. (1988) Persistent pain and well being: a World Health Organization study in primary care. Journal of Amer ican Medical Association, 280, 147 151.

SOCIAL PSYCHIATRY IN AFRICA: EVIDENCE AND CHALLENGES

41. Simon, G. E., VonKorff, M., Piccinelli, M. et al. (1999) An international study of the relation between somatic symptoms and depression. New England Journal of Medicine, 341, 1329 1335. 42. Gureje, O. (2004) What can we learn from a cross national study of somatic distress? Journal of Psycho somatic Research, 56, 409 412. 43. de Jong, J. T. V. M. (1987) A Descent into African Psychiatry, Royal Tropical Institute, The Netherlands. 44. Beiser, M., Ravel, J., Collomb, H. and Egelhoff, C. (1972) Assessing psychiatric disorder among the Serer of Senegal. Journal of Nervous and Mental Disease, 154, 141. 45. Gelfand, M., Mavis, C. S., Drummond, R. B. and Ndemera, B. (1985) The Traditional Medical Practi tioner in Zimbabwe, Mambo Press, Gweru. 46. Good, C. M. (1987) Ethnomedical Systems in Africa: Patterns of Traditional Medicine in Rural and Urban Kenya, Guilford Press, London. 47. Odejide, A. O., Olatawura, M. O., Sanda, A. and Oyenye, A. (1977) Traditional healers and mental ill ness in the city of Ibadan. African Journal of Psychia try, 3, 99. 48. Staugard, F. (1985) Traditional Medicine in Botswana: Traditional Healers, Ipelegeng Publishers, Gaborene. 49. Mutambirwa, J. (1989) Health problems in rural com munities, Zimbabwe. Social Science and Medicine, 29, 927. 50. Makanjuola, R. O. (1987) Yoruba traditional healers in psychiatry. 1. Healers’ concepts of the nature and aetiology of mental disorders. African Journal of Med icine and Medical Science, 16, 53 59. 51. Kortmann, F. (1990) Psychiatric case finding in Ethio pia: shortcomings of the Self Report Questionnaire. Culture, Medicine and Psychiatry, 14, 381. 52. Fosu, G. B. (1981) Disease classification in rural Ghana: framework and implications for health beha vior. Social Science and Medicine, 15B, 471. 53. Cheetham, R. W. S. and Cheetham, R. J. (1976) Con cepts of mental illness amongst the rural Xhosa people in South Africa. Australian and New Zealand Journal of Psychiatry, 10, 39. 54. Abas, M., Broadhead, J., Mbape, P. and Khumalo Sakatukwa, G. (1994) Defeating depression in the developing world: a Zimbabwean model. British Jour nal of Psychiatry, 164, 293. 55. Patel, V. and Winston, M. (1994) The ‘universality’ of mental disorder revisited: assumptions, artefacts and

56.

57.

58.

59.

60.

61.

62.

63.

64.

65.

66.

67.

68.

549

new directions. British Journal of Psychiatry, 165, 437 440. Patel, V. and Kleinman, A. (2003) Poverty and common mental disorders in developing countries. Bulletin of the World Health Organization, 81, 609 615. Johnson, J. G., Cohen, P., Dohrenwend, B. P. et al. (1999) A longitudinal investigation of social causation and social selection processes involved in the associa tion between socioeconomic status and psychiatric disorders. Journal of Abnormal Psychology, 108, 490 499. Muntaner, C., Eaton, W. W., Miech, R. and O’Campo, P. (2004) Socioeconomic position and major mental dis orders. Epidemiology Reviews, 26, 53 62. Broadhead, J. C. and Abas, M. A. (1998) Life events, difficulties and depression among women in an urban setting in Zimbabwe. Psychological Medicine, 28, 29. Faris, R. E. and Dunham, W. (1939) Mental Disorders in Urban Areas: An Ecological Study of Schizophrenia and Other Psychoses, University of Chicago Press, Chicago, Illinois. Hollingshead, A. B. and Redlich, F. C. (1958) Social Class and Mental Illness: A Community Study, John Wiley & Sons, Inc., New York. Kesser, R. C. (1982) A disaggregation of the relation ship between socioeconomic status and psychological distress. American Sociology Review, 47, 752 764. Gureje, O. and Jenkins, R. (2007) Mental health in development: re emphasizing the link. Lancet, 369, 447 449. Myer, L., Stein, D. J., Grimsrud, A. et al. (2008) Social determinants of psychological distress in a nationally representative sample of South African adults. Social Science and Medicine, 66, 1828 1840. Almedom, A. M. (2005) Social capital and mental health: an interdisciplinary review of primary evidence. Social Science and Medicine, 61, 943 964. Thomas, L. (2006) Social Capital and Mental Health of Women Living in Informal Settlements in Durban, South Africa and Lusaka, Zambia, Jessica Kingsley Publishers, London. Fabrega, H. (1989) Cultural relativism and psychiatric illness. Journal of Nervous and Mental Disease, 177, 415 425. Jablensky, A., Sartorius, N., Emberg, G. et al. (1992) Schizophrenia: manifestations, incidence and course in different cultures: a World Health Organization

550

69.

70.

71.

72.

73.

74.

GLOBAL MENTAL HEALTH

10 country study. Psychological Medicine, Monograph Supplement, 20, 1 97. Sartorius, N., Jablensky, A. and Shapiro, R. (1978) Cross cultural differences in the short term prognosis of schizophrenic psychoses. Schizophrenia Bulletin, 4, 102 113. Gureje, O., Lasebikan, V. O., Ephraim Oluwanuga, O. et al. (2005) Community study of knowledge of and attitude to mental illness in Nigeria. British Journal of Psychiatry, 186, 436 441. Adewuya, A. O. and Makanjuola, R. O. (2008) Social distance towards people with mental illness in south western Nigeria. Australian and New Zealand Journal of Psychiatry, 42, 389 395. Shibre, T., Negash, A., Kullren, G. et al. (2001) Percep tion of stigma among family members of individuals with schizophrenia and major affective disorders in rural Ethiopia. Social Psychiatry and Psychiatric Epi demiology, 36, 299 303. Gureje, O., Olley, B. O., Ephraim Oluwanuga, O. and Kola, L. (2006) Do beliefs about the causation influence attitudes to mental illness? World Psychiatry, 5, 104 107. Ministry of Health (1998) Statistics, Ministry of Health, Cairo.

75. Emsley, R. (2001) Focus on psychiatry in South Africa. British Journal of Psychiatry, 178, 382 386. 76. Lambo, T. A. (1970) The importance of cultural factors in psychiatric treatment, in Cross Cultural Studies of Behaviour (eds I. Al Issa and W. Dennis), Holt, Rine hart & Winston, Austin, Texas. 77. de Jong, J. (1996) A comprehensive public mental programme in Guinea Bissau: a useful model for Afri can, Asian, and Latin American countries. Psycholo gical Medicine, 26, 97 108. 78. Kilonzo, G. P. (1992) The challenges of rehabilitation psychiatry theTanzanianexperience.Medicus,11,14 18. 79. Winston, C. M. and Patel, V. (1995) Use of traditional and orthodox medicine in urban Zimbawe. Interna tional Journal of Epidemiology, 24, 1006 1012. 80. Gureje, O., Odejide, O. A. and Acha, R. A. (1995) Pathways to psychiatric care in Ibadan, Nigeria. Tro pical and Geographical Medicine, 47, 125 129. 81. Patel, V., Simunyu, E. and Gwanzura, F. (1997) The pathways to primary mental health care in high density suburbs of Harare, Zimbabwe. Social Psychiatry and Psychiatric Epidemiology, 32, 97 103. 82. Ovuga, E., Boardman, J. and Oluka, E. (1999) Tradi tional healers and mental illness in Uganda. Psychiatric Bulletin, 23, 276 279.

42 Social psychiatry in the Americas Pedro Ruiz Department of Psychiatry and Behavioral Sciences, University of Texas Medical School at Houston, Houston, Texas, USA

42.1

INTRODUCTION

A chapter focusing on Social Psychiatry in the Americas must, first of all, establish a clear concept and definition of what Social Psychiatry is. In the first edition of Principles of Social Psychiatry, Dr Julian P. Leff defined Social Psychiatry as ‘being concerned with the effects of the social environment on the mental health of the individual, and with the effects of the mentally ill person on his/her social environment’ [1]. Dr Leona L. Barach [2] states that attempts to define Social Psychiatry in the United

42.2

States have met with little consensus; additionally, Barach emphasizes that Social Psychiatry in the United States is sometimes interchangeable with community psychiatry. Dr Eliot Sorel in his book Social Psychiatry in the Late Twentieth Century [3] presents a set of selected proceedings from the XII World Congress of Social Psychiatry. Despite the outstanding set of papers included in this text, no clear definition of what Social Psychiatry means to the field of psychiatry at large is described.

THE PRESENCE OF SOCIAL PSYCHIATRY IN THE AMERICAS

In order to understand the evolution and presence of social psychiatry in the Americas, we need to focus on the experiences and models of social psychiatry in Europe, particularly in England, and its underpinnings across the Americas, especially in North America. In the Americas, social psychiatry can be understood as primarily concerned with the patient and the context in which he/she lives and works. In this regard, social psychiatry addresses the contextual factors and forces that affect human development, especially aberrant

development and environmental conditions such as poverty or famine, as these relate to the incidence and prevalence of mental disorder [4]. In this context, ‘Social Psychiatry focuses on relationships that start with intra-uterine life, as well as on the macro-social conditions as they impact on personal development, the family, groups, and communities concerning health or illness’. In addition, social psychiatry is concerned with treatment contexts, in institutions and the community [4,5]. When perceived in this way, one

Principles of Social Psychiatry, second edition Edited by Craig Morgan and Dinesh Bhugra Ó 2010 John Wiley & Sons, Ltd.

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can understand the unique connection between social psychiatry and community psychiatry across the Americas; in other words, community psychiatry can be understood as the ‘clinical arm’ of social psychiatry [3]. For many, social psychiatry and community psychiatry are not perceived as two different fields. I should, however, underline the fact that in the United States these are two different Associations: the American Association for Social Psychiatry and the

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American Association of Community Psychiatrists. It should also be noted that on different occasions both Associations have considered merging with each other. In contrast, in South and Central America and the Caribbean ‘social’ and ‘community’ activities tend to be perceived as two integrated concepts within the field of psychiatry at large, or as ‘specific ideological movements’ within the field of psychiatry.

FOCUSING ON LATIN AMERICA

In order to understand the role of social psychiatry in Latin America, we must also focus on the role of cultural psychiatry. In Latin America, there were more than 200 different ‘Indian groups’ during the ‘preColumbian period’ [6]. Their cultural diversity extended from small tribes who lived in a primitive state to great Indian empires that attained high levels of sociocultural development such as the Mayas, the Aztecs and the Incas. During this period, aboriginal medical/psychiatric practices included magical and shamanistic medicine, priestly rituals and a large state of botanical knowledge and experience. Still today, the fields of medicine and psychiatry are impacted by the influence of these types of alternative medicine practices. They are also, in many ways, a good example of the ‘social’ and ‘community’ based practices within the field of psychiatry. Any socially oriented psychiatrist must understand these practices, respect them and/or incorporate some of them, when appropriate, to their medical/psychiatry armamentarium. To ignore them or reject them from the start will certainly lead to frustration, noncompliance with treatment, aggravation of the illness and in certain occasions to patient harm. In other words, the social context and/or culture of the physician/psychiatrist cannot be imposed on the patient’s culture; to do it can lead to serious negative consequences to the patient, as well as frustration and alienation to both the patient and the physician/psychiatrist [7,8]. Within these contexts mental and physical illnesses were often attributed to culturally driven aetiological factors and, as such, were also classified in accordance with the cultural beliefs that existed at that time. These concepts and models can still be seen, not only in

many countries across Latin America but also among the Latin/Hispanic migrants who reside in the United States and Canada and in countries of the European union as well [9 11]. During the colonial period, Spain and Portugal greatly influenced the social aspects of the practice of psychiatry in Latin America. It should be noted, however, that the new ideas and practices that were initiated and/or implemented in Latin America were far more advanced than the ones that were taking place in the Iberian Region of Europe. For instance, the concept of ‘moral treatment’ that prevailed in some regions of Latin America, as well as the development of hospitals with a humane and social orientation in Mexico, Peru and other countries of Latin America. To me, this ‘social’ and ‘humanistic’ trend in the field of psychiatry in Latin America is quite unique and well rooted in this part of the American continent. There has been and there is still so much poverty and neglect across Latin America that some sectors of society, especially the psychiatric sector, is, perhaps, saying ‘enough is enough’ and ‘we must do something positive about it’. Hopefully, this socially-oriented and humanisticoriented movement and/or trend might influence other regions of the world as well and, in particular, the United States. In this context, however, it has been said that comprehensive mental health services are lacking in Latin America and often have the lowest priority both politically and socially [12]. In this respect, there is currently a trend, primarily in South America, to move away from the use of large urban psychiatric hospitals, as well as towards establishing psychiatric units in general hospitals and towards the integration of

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mental health care with primary health care; unfortunately, however, the indigenous sectors of the population tend to be neglected and not well attended to. Obviously, poverty has to do with this disparity. It is, therefore, incumbent on socially-oriented psychiatrists, as well as organizations such as the World Psychiatric Association, to advocate and positively address those inequalities and disparities in mental disorder and treatment that still exist among the poorest and most needy populations in Latin America. In this context, we cannot ignore the fact that about 30 million indigenous persons in South America, or about 10% of the general population in this region of Latin America, live in outrageous conditions of human misery and neglect [12]. In some of these poverty stricken regions the poverty rates are about three to four times the national average [12]. Latin America in general, and South America in particular, depicts the highest disparities in income, as well as other socioeconomic determinants of health and mental health, in the world [13]. Sometimes, the psychiatric manpower available to treat the indigenous populations who suffer from mental disorder in certain regions of Latin America is just abysmal; for instance, in Ecuador there is only one Quichua psychiatrist for 5 million indigenous persons [12]. It is also important to note in this regard that traditional healers using ‘alternative medicine practices’ are helping to reduce the disparities in life expectancy and the health disparities among indigenous populations from South America [12]. In Latin America, all countries with the exception of Argentina and Costa Rica currently have a negative migratory balance [14]. Mexico lost 300 000 persons to migration to the United States in 2002 [14]. Latin America has an indigenous population estimated to be

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about 45 50 million persons; the countries with the largest indigenous populations are Bolivia, Ecuador, Guatemala and Peru [14]. In 1990, neuropsychiatric conditions were estimated to account for around 9% of disability-adjusted life years (DALYs) [15]. Neuropsychiatric disorders account for 40% of all years lived with disability (YLD) irrespective of age and 47% among those aged 15 59 years. Unipolar depressive disorders account for 13% of all YLDs and 17% among those aged 15 59. Unipolar depressive disorder, schizophrenia and alcohol use disorders are the three top causes of YLD in women aged 15 59. For men aged 15 59 it is alcohol use disorders, unipolar depressive disorders and violence [15]. Obviously, indigenous populations and poverty-driven populations in Latin America are at very high risk for psychiatric disorders and shorter life expectancy. In this context, we should also note that suicide in Latin America is becoming more frequent among females than among males in some countries. Female adolescent suicide rates are higher than male adolescent suicide rates in Ecuador, El Salvador and Nicaragua [15]. Among 10 19-year-old adolescents, the leading causes of death in most of Latin America are external, i.e. caused by violence and homicide [16]. Domestic violence against women is highly prevalent in many Latin American countries, particularly in Colombia, Nicaragua, Chile and Peru [17]. Forced sex in some regions of Latin America is culturally considered to be a part of women’s domestic obligations [18]. In some regions of Latin America, such as in Embu in Brazil, infant malnutrition has been linked to maternal mental health problems [19]. With respect to substance abuse, in Brazil, among the population between 12 and 64 years old, 69% had a lifetime use of alcohol and 41% of tobacco [20].

FOCUSING ON THE CARIBBEAN

The Caribbean (also known as the West Indies) is the region of the Americas encompassing the Caribbean Sea and its Islands. The Caribbean comprises 28 territories, including some sovereign states, and overseas departments and dependencies. In these territories, several languages are spoken (English, Spanish, French and Dutch) [21]. The economies of the

territories in this region vary widely; thus, the contribution of mental disorders in this region to DALYs also varies; for instance, in Haiti, which is the poorest country in the region, it is 9% and in Jamaica it is 26%. The differences may be a function of the high prevalence of infections diseases, such as HIV/ AIDS [21].

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Among children, based on the only study ever conducted in this region in Puerto Rico of children aged 4 17 years, the most prevalent mental disorders are attention-deficit hyperactivity disorder (8%) and oppositional defiant disorder (5.5%) [22]. In another classroom study in nine Caribbean countries (Antigua, the Bahamas, Barbados, British Virgin Islands, Dominica, Grenada, Guyana, Jamaica and Saint Lucia) it was found that 11% of males and 13% of females had attempted suicide; physical abuse was reported among 16% of adolescents; exposure to violence was also common with 20% of male adolescents carrying weapons in school; and two out of five had thoughts of hurting or killing someone. This study encompassed 15 695 adolescents between the ages of 10 18 years old [23]. In terms of mental health service utilization, a study conducted in Trinidad and Tobago found that psychiatrists were not using newer psychotropic medications, in particular serotonin reuptake inhibitors to treat depression [24]. In Puerto Rico, however, where there is a well-established mental health care system, 76% of persons with alcohol use disorders, 70% with major depression and 10% with nonaffective disorders did not receive any treatment for these conditions [25]. In addition, serious natural disasters, which occur quite often in the Caribbean region, can certainly increase the incidence and prevalence of mental disorders, as well as the severity of these conditions [26,27]. With regard to rates of disorder, little is known about rates of schizophrenia in the Caribbean. What

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studies have been conducted suggest rates broadly similar to what have been reported in other parts of the world [28]. Suicide rates among the multiethnic Caribbean countries such as Trinidad and Tobago, Guyana and Suriname remains a major problem, given the relatively high numbers of Hindu religious followers in these countries [28]. Likewise, homicide is also a growing problem throughout the Caribbean, given the easy access to guns in this region [28]. Along these lines, substance abuse remains the single greatest contributor to psychosocial morbidity in this region [28]. With rates of HIV infection in the Caribbean only second to sub-Saharan Africa, there is a major relationship between HIV infection and mental health problems [29]. As was obvious in Central America and South America, in the Caribbean region of Latin America mental disorder is related to poverty, neglect and poor overall social conditions. This situation may well lead to an increase in incidence and prevalence of mental health disorders and conditions, as well as aggravation of the severity of such disorders. In turn, the challenges for mental health professionals increase, and frustration ensues given the limited resources to effectively treat these conditions. It is, therefore, a necessity for mental health professionals to become agents of social change; i.e. socially-oriented mental health professionals, especially social psychiatrists, are expected to address and solve these health and mental health challenges.

FOCUSING ON NORTH AMERICA

The status of social psychiatry in North America, especially the United States, is very nicely described by the late Dr Harold M. Visotsky in his introduction to ‘Section VIII: Social Profilaxis and Social Psychotherapy’ for the previously cited book on Social Psychiatry in the Late Twentieth Century, edited by Dr Eliot Sorel [3]. In his introduction to Section VIII, Dr Visotsky states [30] ‘Psychiatry has approached the treatment of all illnesses in medicine by not only relating the psychological and the psychobiological dynamics and interactions, but by also applying the studies of the social components’ [30]. Dr Visotsky

further states: ‘The current applications of Social Psychiatry have been extended from the individual and the family to include the dimensions of culture, religion, philosophy, and shared ideals. It further relates to more abstract levels than the individual to economic, political, and international interests’ [30]. Within this context elements such as: culture, religion, ethnicity, race, economic conditions, language, political ideologies, family system, work settings, educational levels, philosophical and ideological aspects, environmental conditions, and other related aspects are all integral parts of social psychiatry. Social

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psychiatrists need, by necessity, to pay attention to all of these considerations if they want to be effective in understanding, assessing, preventing and successfully treating mental disorders. The North American region of the world has achieved a level of sophistication and knowledge never secured in the past. When I discuss and address the most complex issues pertaining to the field of social psychiatry with many of my colleagues from the American Association for Social Psychiatry, or from the Association of Community Psychiatrists, or the American Psychiatric Association, as well as from many other professional mental health societies from the United States and Canada, I always feel reassured and pleased with the social commitment, the social knowledge, their professional ideals, their understanding of the problems and barriers faced by the health/mental health care systems of Canada and the United States, and yet, with respect to the United States, this nation is facing a major challenge in the field of social medicine, and of social psychiatry in particular. The United States is, without any doubt, the most economically powerful country in the world. Right where I work, in the Texas Medical Centre, we can offer the most sophisticated and effective health and mental health care in the world and yet about 47 million Americans do not have health and/or mental health insurance coverage; another 10 15 million Americans have insufficient health/mental health insurance coverage; thousands and thousands of Americans are homeless and have to live under bridges, on highways or in parks, and about 60% of them are mentally ill; about 15 20% of Americans in the State prison systems are mentally ill persons who should be housed and treated in psychiatric facilities and programmes rather than inhumanely kept in prisons. How can a nation like the United States have such an abysmal mental health care system? I cannot find any answers to this question other than the fact that the United States has lost its sense of social responsibility, its sense of social commitment and its humanitarian perspective. Currently, this lack of social responsibility, which prevails in many sectors of the United States, has negatively impacted on the health and mental health care system of this country. In the United States, today, you must have a ‘car’, a ‘computer’ and a ‘cellular phone’, but under no circumstances can you get ‘physically ill or mentally ill’. In the United States,

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if you own a house, have a car, a computer and a cellular phone, you are ‘somebody’, but if you develop a serious mental illness society sends you to prison, to live under bridges as a homeless person or to commit suicide as the only other option that a mentally ill person has to stop this inhumane process. It is not my intention to be unthinkingly critical of the current state of affairs of the mental health system of the United States; however, these days this system has hit the bottom in a way that has never happened before. Several decades ago there were some very promising initiatives that made us feel that something good was taking place in the mental health care system of the United States. There was the Mental Health Center Act that was initiated under the Kennedy administration in 1963; there were the catchment area mental health centers that were going to address all of the problems of a given population in each catchment area of the United States. I trained in psychiatry under this system; I decided to become a social and community psychiatrist during this period. I had the opportunity to direct one of these mental health centres: The Lincoln Hospital Community Mental Health Center. We opened store-front mental health clinics in the South Bronx area of the New York City catchment area where our mental health center was located [31 33]. New programmes were initiated to avoid unnecessary hospitalization for the mentally ill and to treat mentally ill patients in their own communities in order that they could fully utilize their own cultural resources for treatment and prevention purposes [34 36]. During this golden period for social psychiatry and community psychiatry genuine attempts were also made to involve patients/consumers in the mental health delivery system that treated them, and excellent outcomes were obtained with these efforts [37,38]. A couple of decades later, almost all communitybased mental health centers are closed or permanently impaired; no longer is the federal government interested in helping financially or morally the mentally ill particularly, the chronic mentally ill. State governments decided to close or reduce the capacity of their psychiatric hospitals; however, state governments also decided not to transfer the necessary funds to the local or county governments. This ‘black’ period in the history of the mentally ill in the United States slowly evolved into the chaos that prevails today [39 41].

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Not only did the opportunities to treat the mentally ill within their own community, and with the respect and dignity that is required, fade away in the late 1970s, but so too did the opportunities to train psychiatric residents within a community-based environment in which the patient’s culture and human dignity received the highest priority [42 44]. The failures of community-based psychiatric care are clearly illustrated by the many homeless mentally ill persons, the frequency of rehospitalizations and the high prevalence of chronicity among the mentally ill persons in this country. These conditions have many sources: socioeconomic, political, budgetary, as well as prejudices and discrimination against the mentally ill [4], but above all is the lack of social commitment vis- a-vis the mentally ill that currently prevails in the federal, state and local governments, and in the current lack of humanism that is frequently observed among the mental health policies of this

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country’s government. Today, the mentally ill in the United States are the victims of our failures to implement social psychiatry in the form of services and agency networks on behalf of the mentally ill patients’ welfare and treatment [45]. Comprehensive community care has been shown to work effectively for instance, in the Maudsley sponsored programmes in Camberwell (South London), and also elsewhere. However, for the most part, especially in the United States, it has not been tried [46]. It is certainly expensive, more expensive than poor hospital care [47], but in the long run it could produce self-supporting citizens, as well as relieving human suffering and misery [4]. One of the major focuses of social psychiatry is the development of competent systems of care, i.e. clinicians who can work with patients’ families and in other relevant contexts. We can no longer afford to limit our work based on the dyadic doctor patient field [4].

CONCLUSION

Despite the major challenges that have faced the field of social psychiatry in the last three decades, the core philosophy and principles of this field are still present among many psychiatrists in the Americas, including Latin America and the Caribbean. The steady increases in the strength of the ‘consumer-orientated movements’ in the Americas, especially in North America, is very visible and palpable [48]. The passage of the recent law on parity of psychiatric services with the medical/surgical services by the federal government is in many ways a result of the strength of the consumer-orientated movement and the strong advocacy efforts of the mental health/psychiatry profession. Today in the Americas, especially in the United States, social psychiatry as conceived in the last several decades in Germany, France, Italy and the United Kingdom has had a declining influence [49]. Likewise, the late-century rise of biological psychiatry in the United States has also reduced the research emphasis on cross-cultural psychiatry, which peaked in the 1970s and 1980s. I think, however, that the basic principles of social psychiatry will eventually resurge,

and greatly influence public policy all over the Americas especially in Latin America. REFERENCES 1. Leff, J. P. (1993) Principles of social psychiatry, in Principles of Social Psychiatry, 1st edn (eds D. Bhugra and J. Leff), Blackwell Scientific Publications, Oxford, pp. 3 11. 2. Barach, L. L. (1993) American experience in social psychiatry, in Principles of Social Psychiatry, 1st edn (eds D. Bhugra and J. Leff), Blackwell Scientific Pub lications, Oxford, pp. 534 548. 3. Sorel, E. (ed.) (1993) Social Psychiatry in the Late Twentieth Century, Legas, New York. 4. Fleck, S. (1990) Social psychiatry an overview. Social Psychiatry and Psychiatric Epidemiology, 25, 48 55. 5. Schwab, J. J. (1993) The family: introduction, in Social Psychiatry in the Late Twentieth Century (ed. E. Sorel), Legas, New York, pp. 16 21. 6. Leon, C. A. and Roselli, H. (1975) Latin America, in World History of Psychiatry (ed. J. G. Howells), Brun ner/Mazel Publisher, New York, pp. 476 506.

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7. Ruiz, P. and Langrod, J. (1976) The role of folk healers in community mental health services. Community Mental Health Journal, 12, 392 398. 8. Ruiz, P. (1982) The hispanic patient: sociocultural per spectives, in Mental Health and Hispanic Americans (eds R. M. Becerra, M. Karno and J. I. Escobar), Grune & Stratton, Inc., New York, pp. 17 27. 9. Ruiz, P. (1998) The role of culture in psychiatric care. American Journal of Psychiatry, 155, 1763 1765. 10. Ruiz, P. (1998) New clinical perspectives in cultural psychiatry. Journal of Practical Psychiatry and Beha vioral Health, 4, 150 156. 11. Ruiz, P. (2004) Addressing culture, race and ethnicity in psychiatric practice. Psychiatric Annals, 34, 527 532. 12. Incayawar, M. (2007) Indigenous peoples of South America inequalities in mental health care, in Culture and Mental Health: A Comprehensive Textbook (eds K. Bhui and D. Bhugra), Hodder Arnold, London, pp. 185 190. 13. Pan American Health Organization (PAHO) (1999) Health Disparities in Latin America and the Carib bean: The Role of Social and Economic Determinants, Division of Health and Human Development, PAHO/ WHO, Washington, DC. 14. Kohn, R. (2007) Mental health and cultural psychiatry in Latin America, in Culture and Mental Health: A Comprehensive Textbook (eds K. Bhui and D. Bhugra), Hodder Arnold, London, pp. 191 211. 15. Murray, C. J. L. and Lopez, A. D. (1996) The Global Burden of Disease: A Comprehensive Assessment of Mortality and Disability from Diseases, Injuries and Risk Factors in 1990 and Projected to 2020, Harvard University Press, Boston, Massachusetts. 16. Pan American Health Organization (PAHO) (2002) Health in the Americas, PAHO, Washington, DC. 17. Heise, L., Ellsberg, M. and Gottemoeller, M. (1999) Ending Violence Against Women Population Reports, Series L, Number 11, John Hopkins Univer sity, School of Public Health, Baltimore, Maryland. 18. Pan American Health Organization (PAHO) (2003) Violence Against Women: The Health Sector Responds, PAHO, Washington, DC. 19. Miranda, C. T., Turecki, G., Mari, J. J. et al. (1996) Mental health of mothers of malnourished children. International Journal of Epidemiology, 25, 128 133. 20. Galduroz, J. C., Noto, A. R., Nappo, S. A. and Carlini, E. A. (2005) Household survey on drug abuse in Brazil:

21.

22.

23.

24.

25.

26.

27.

28.

29.

30.

31.

32.

557

study involving the 107 major cities of the country 2001. Addictive Behaviors, 30, 545 556. Kohn, R. (2007) Mental health and cultural psychiatry in the Caribbean, in Culture and Mental Health: A Comprehensive Textbook (eds K. Bhui and D. Bhugra), Hodder Arnold, London, pp. 329 336. Canino, G., Shrout, P. E., Rubio Stipec, M. et al. (2004) The DSM IV rates of child and adolescent disorders in Puerto Rico: prevalence, correlates, service use, and the effects of impairment. Archives of General Psychiatry, 61, 85 93. Halcon, L., Blum, R. W., Beuhring, T. et al. (2003) Adolescent health in the Caribbean: a regional portrait. American Journal of Public Health, 93, 1851 1857. Moore, S., Jaime, L. K., Maharajh, H. et al. (2002) The prescribing of psychotropic drugs in mental health services in Trinidad. Revista Panamericana de Salud Publica, 12, 207 214. Kohn, R., Levav, I., de Almeida, J. M. et al. (2005) Mental disorders in Latin America and the Caribbean: a public health policy. Revista Panamericana de Salud Publica, 18, 229 240. Avery, J. G. (2003) The aftermath of a disaster. Recov ery following the volcanic eruptions in Montserrat, West Indies. West Indies Medical Journal, 52, 131 135. Kutcher, S., Chehil, S. and Roberts, T. (2005) An integrated program to train local health care providers to meet post disaster mental health needs. Revista Panamericana de Salud Publica, 18, 338 345. Hutchinson, G. (2007) Understanding mental illness in the English speaking Caribbean, in Culture and Mental Health: A Comprehensive Textbook (eds K. Bhui and D. Bhugra), Hodder Arnold, London, pp. 337 344. Calleja, J. M., Walker, N., Cuchi, P. et al. (2002) Status of HIV/AIDS epidemic and methods to monitor it in the Latin American and Caribbean region. AIDS, 16, S3 S12. Visotsky, H. M. (1993) Introduction, in Social Psychia try in the Late Twentieth Century (ed. E. Sorel), Legas, New York, pp. 436. Peck, H. B. (1969) A candid appraisal of the community mental health center as a public health agency: a case history. American Journal of Public Health, 59, 459 469. Ruiz, P. and Tourlentes, T. T. (1982) Community mental health centers, in Psychiatric Administration (eds J. A. Talbott and S. R. Kaplan), Grune & Stratton, Inc., New York, pp. 103 119.

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33. Peck, H. B., Kaplan, S. R. and Roman, M. (1996) Prevention, treatment, and social action: a strategy of intervention in a disadvantaged urban area. American Journal of Orthopsychiatry, 36, 57 69. 34. Ruiz, P. and Langrod, J. (1976) The role of folk healers in community mental health services. Community Mental Health Journal, 12, 392 398. 35. Ruiz, P. and Saiger, G. (1972) Partial hospitalization within an urban slum. American Journal of Psychiatry, 129, 89 92. 36. Ruiz, P. (1979) Avoiding hospitalization for the urban poor, in New Directors for Mental Health Services (ed. H. R. Lam), Jossey Bass, San Francisco, California, pp. 65 72. 37. Ruiz, P. and Behrens, M. (1973) Community control in mental health: how far can it go? Psychiatric Quarterly, 47, 317 324. 38. Ruiz, P. (1973) Consumer participation in mental health programs. Hospital and Community Psychiatry, 24, 38 40. 39. Shaw, R. and Eagle, C. J. (1971) Programmed failure: the Lincoln Hospital story. Community Health Journal, 7, 255 263. 40. Ruiz, P. (1979) The fiscal crisis in New York City: effects on the mental health care of minority popula tions. American Journal of Psychiatry, 136, 93 96. 41. McQuistion, H. L. and Rosenbeck, S. D. (2006) Heroes in community psychiatry: C. Christian Beels and the

42.

43.

44.

45.

46.

47.

48.

49.

evolution of community psychiatry in New York City. Community Mental Health Journal, 42, 513 520. Griffith, E. H. and Ruiz, P. (1977) Cultural factors in the training of psychiatric residents in a Hispanic urban community. Psychiatric Quarterly, 49, 29 37. Ruiz, P. and Langrod, J. (1976) Psychiatry and folk healing: a dichotomy? American Journal of Psychiatry, 133, 95 97. Gonzalez, C. A., Griffith, E. E. H. and Ruiz, P. (2001) Cross Cultural Issues in Psychiatric Treatment of Psychiatric Disorders, 3rd edn, American Psychiatric Publishing, Inc., Washington, DC, pp. 47 67. Lamb, H. R. (1980) Structure: the neglected ingredient in community treatment. Archives of General Psychia try, 37, 1224 1228. Alanen, Y. O., Rakkolainen, V., Laasko, T. et al. (1986) Towards Need Specific Treatment of Schizophrenic Psychoses, Springer, Berlin. Hafner, H. and an der Heider, W. (1989) Effectiveness and cost of community care for schizophrenia patients. Hospital and Community Psychiatry, 40, 59 63. Beard, P. R. (2006) The consumer movement, in Amer ican Psychiatry After World War II: 1944 1994 (eds R. W. Menninger and J. C. Nemiah), American Psychiatric Press, Inc., Washington, DC. Sabshin, M. (2008) Changing American Psychiatry: A Personal Perspective, American Psychiatric Publish ing, Inc., Washington, DC.

Epilogue

43 Where next for social psychiatry? Dinesh Bhugra and Craig Morgan NIH Biomedical Research Centre and Institute of Psychiatry, King' s College London, London, UK

Lauber [1] recently asked: ‘Why is social psychiatry still alive?’ Before pondering an answer, we might wonder why such a question is even being posed. In so far as mental disorder is an intrinsically social phenomenon, which is shaped by, and in turn shapes, social contexts and experiences, such a question does not arise. Without research and other activities dedicated to investigating these core aspects of mental disorder, there is no possibility of achieving a full understanding nor of responding effectively and humanely. In part, the posing of such a question reflects insecurity in the face of rapid advances in genetics and neuroscience, as noted in the Preface. Ironically, such advances in showing how the social and biological interact have helped reinvigorate areas of social research in psychiatry. This is evident in many of the contributions in this edition, especially in relation to the aetiology of psychosis (an area that, until recently, was considered largely off-bounds for social psychiatry) (see Chapter 15). Indeed, all the essays brought together here clearly illustrate the relevance, necessity and vibrancy of current research in social psychiatry. Any lack of confidence is evidently ill-founded. The nature and scope of social psychiatry has undergone tremendous changes over time from the

mental hygiene movement, through deinstitutionalization and the study of life events and family contexts, to the growth of community psychiatry, health services research and more recently global and public mental health [2]. Throughout, social psychiatry has provided a framework for understanding the individual and his/her ‘private troubles’ [3] within a wider context, and in doing so has considerably enhanced our understanding of many facets of mental disorder of how society draws the boundaries between normality and abnormality; of how social contexts and experiences impact on the onset, course and outcome of disorder; and of how culture shapes the manifestation of, and responses to, disorder. These insights have been crucial in informing the development and implementation of complex social interventions and systems of service delivery. In each of these areas, social psychiatry can, and no doubt will, continue to make a significant contribution. However, just as it has evolved in the past in response to wider social and economic pressures, so now social psychiatry will need to be flexible in responding to the many challenges posed by the ever-increasing pace of social change throughout the world. Indeed, the pace of social change appears to increase exponentially year on year under a multitude

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EPILOGUE

of pressures, including economic developments, mass migration, and technological and telecommunications revolutions. The resulting transformations in social relations and patterns of communication are no more clearly illustrated than in the development of the Internet and, with it, the emergence of myriad opportunities for online ‘social’ networking. We now have entirely novel ways of forming relationships, seeking support and of accessing information on most any topic, all of which have important implications for mental health and mental health care. As Chapter 36 illustrates, there is an urgent need for research to understand the positive and negative ways in which these new media affect mental health, help seeking and interactions with mental health services. If ‘social’ networking provides opportunities for social engagement, it equally carries risks (e.g. ‘cyberbullying’, websites promoting suicide, etc.). This is just one example; there are many others. At the time of preparing this edition, the world economy is in the midst of a severe recession, with the inevitable consequences of increasing unemployment, poverty and general uncertainty. International and internal migration now occurs at unprecedented levels and is driven by diverse forces, from the desire for economic betterment to the seeking of refuge from war and natural disaster to the trafficking of women for profit. As the research presented in many of these chapters highlights, these developments will have far-reaching (and mainly negative) consequences for public and global mental health. As societies transform, so too do the contexts and questions that social psychiatry will be challenged to address. Of course, social psychiatry does not stand in isolation from the rest of psychiatry; the challenges noted in the preceding paragraph are ones that need to be faced by all those charged with understanding and responding to mental disorder. However, social psychiatry may well be uniquely placed to provide the focal point for research that integrates the biological, psychological and social, given its foothold both in the social sciences (including sociology and psychology) and, as a psychiatric subdiscipline, in the medical and biological sciences. Nowhere is this better illustrated than in recent trends in psychosis research, in which there is a growing consensus that social contexts and experiences can increase risk for disorder through

their impact on individual biology with many resulting fruitful collaborations between social and biological psychiatry. This blurring of disciplinary boundaries is to be welcomed. Having said this, a final observation is worth noting. In the past, social psychiatry has been criticized for leaving uncontested the basic diagnostic concepts used in psychiatry and enshrined in DSM [4]. This may have been a necessity, the only basis on which to work with others within the profession. Less charitably, this can be construed as reflecting what might be termed the absence (or loss) of a critical edge in social psychiatry. As the range of experiences being brought under the umbrella of ‘mental disorder’ expands at a seemingly exponential rate [5], there is a role for social psychiatry in reflecting back how the dividing line between normality and abnormality is socially determined and changeable over time. Just as social psychiatry can contribute to understanding the social dimensions of mental distress, so it can challenge the reduction of understandable and normal responses to adversity (in all its forms) to clinical diagnoses. This is a major challenge, and in responding to this there is much that can be drawn from historical and sociological studies of how certain experiences come to fall within the ambit of psychiatry [6,7]. There are then multiple challenges that social psychiatry is well placed to meet. Here we have given a small number of highly select examples, and others would no doubt highlight further areas. We have not, for instance, mentioned the critical role that social psychiatrists can and are playing in combating the widespread stigma and discrimination that continues to restrict opportunities for recovery and reintegration for those with a mental disorder. When considered in this way, do we really need to wonder why social psychiatry is still alive? If it were not, there would be little hope for psychiatry as a whole.

REFERENCES 1. Lauber, C. (2008) Editorial. International Review of Psychiatry, 20, 489 491. 2. Uchtenhagen, A. A. (2008) Which future for social psychiatry? International Review of Psychiatry, 20, 535 539.

WHERE NEXT FOR SOCIAL PSYCHIATRY?

3. Scheper Hughes, N. (2001) Saints, Scholars and Schizo phrenics: Mental Illness in Rural Ireland, Twentieth Anniversary Edition, University of California Press, Los Angeles, California. 4. Cooper, B. (1992) Sociology in the context of social psychiatry. British Journal of Psychiatry, 161, 594 598. 5. Horwitz, A. and Wakefield, J. (2007) The Loss of Sadness: How Psychiatry Transformed Normal Sorrow

563

into Depressive Disorder, Oxford University Press, Oxford. 6. Horwitz, A. (2004) Creating Mental Illness, 2nd edn, Chicago University Press, Chicago, Illinois. 7. Hacking, I. (1999) Mad Travellers: Reflections on the Reality of Transient Mental Illness, Free Association Books, New York.

Index Locators in bold refer to main entries Locators in italic refer to figures/tables Locators for main headings which also have subheadings refer to general aspects of that topic AA (Alcoholics Anonymous) 267 8 abortion 321 2; see also pregnancy abuse, childhood; see also child protection child mental health 289 child protection psychiatric interface 486 7 and depression 218, 219, 220 extra family abuse 490 parental mental health 490 1 prevention strategies 400 as risk factor for becoming an abuser 488 9 as risk factor for psychosis 200 1 and trauma 18 19 within family abuse 489 90 accommodation homelessness 260 1, 292, 351 5 instability 351 5 interventions 426, 428 rehabilitation houses 268 9 acculturation 123, 126, 134, 147 ACT (assertive community treatment) 390 3, 415, 428 acute stress disorder (ASD) 157 adaptation to stress/trauma 58, 157, 160, 165, 166; see also coping addiction to virtual reality worlds 480; see also drug use ADHD (attention deficit hyperactivity disorder) 42, 56, 93, 149, 554 adolescence, prevention strategies 400 1 adulthood prevention strategies 401 2 sociodevelopmental origins of psychosis 202 3

aetiology depression 216 20 personality disorder 253 5 Aetiology and Ethnicity in Schizophrenia and other Psychoses (AESOP) 135, 138, 199 affect recognition 23 affective bias 206 7, 207 Africa 541, 547 epidemiology of mental disorders 541 3 mental health services 546 7 models of mental illness 544 5 social determinants of mental illness 545 social/cultural contexts of mental illness 543 4 stigma 546 African Carribeans see black/minority ethnic groups age factors 95 6, 228 9; see also later life disorders AJP (American Journal of Psychiatry) 9, 9 10 alcohol use/abuse 230, 252, 260, 334, 525; see also binge drinking Alcoholics Anonymous (AA) 267 8 alienation 146 alternative therapy 127, 128, 309 Alzheimer’s disease 33, 299; see also dementia American Association for Social Psychiatry 552 American Association of Community Psychiatrists 552 American Journal of Psychiatry (AJP) 9, 9 10 American Psychiatric Association 41 Americans View Their Mental Health study 310

Principles of Social Psychiatry, second edition Edited by Craig Morgan and Dinesh Bhugra Ó 2010 John Wiley & Sons, Ltd.

566

INDEX

Americas 551, 556; see also United States Caribbean 553 4 Latin America 552 3 North America 554 6 social psychiatry 551 2 Amnesty International 143 amok 119 amphetamines 524 animal studies of dopamine metabolism 204 5 anomalous experiences 17 18, 20, 20, 194, 195; see also delusions; hallucinations anomie 56, 150, 196, 204, 206 and schizophrenia 198 200, 199 anonymity 480 anorexia 278; see also eating disorders anthropology 118 antidepresssants 167 antioxidants 403 antipsychotic medication 323, 413 antisocial behaviour 45, 47; see also deviance antisocial personality disorder (APD) 41, 251, 253, 451, 454 anxiety; see also common mental disorders; generalized anxiety disorder and depression 217 and disasters 159 and expressed emotion 107 and globalization 146 and parenting styles 287, 288 prevalence 93, 94 psychoeducation 443 4 self help 442 and social support 462 sociodevelopmental origins 193 and suicide 241 and torture 164 APD (antisocial personality disorder) 41, 251, 253, 451, 454 ARAR (At Risk of Abuse Register) 489 90 area level factors, social environment 69 71 ASD (acute stress disorder) 157 Asperger’s syndrome 469 aspirin, and dementia 402 assertive community treatment (ACT) 390 3, 415, 428 assessment post traumatic stress disorder 169 community mental health team structures 389, 393 4 Association of European Psychiatry, Section of Epidemiology and Social Psychiatry 512

associations/societies, European mental health services 512 13 asylums 56, 412 13; see also coercion; hospitalization At Risk of Abuse Register (ARAR) 489 90 attachment 222, 254 5, 287, 469, 485 attention deficit hyperactivity disorder (ADHD) 42, 56, 93, 149, 554 Australia 241, 428 Australian Triple P Positive Parenting Programme 400 authoritarian parenting 287, 287 authoritative parenting 286 7, 287 autistic spectrum disorders 463 autonomy, patient 417, 420 avoidant behaviour 333 4, 335 avoidant coping styles 105, 420, 453 avoidant personality disorder 451, 454 BAS (Burden Assessment Scale) 532 BCS (British Crime Survey) 260 Bebo (social networking site) 478 9 Beck Depression Inventory 443 behaviour illness see illness behaviour medicalization of 149 rejecting 333 4, 335 Belmont Hospital 3 4 beta blockers 167 Bhopal disaster 161 bibliotherapy 441 3, 442 biculturalism 134 5 binge drinking, cultural influences 119, 120; see also alcohol use/abuse biological model see biomedical model biological vulnerability 218 20, 219 biomedical model of mental illness 7 8, 9, 13 14, 157, 544 constructions of mental illness 40 1 and diagnosis 31 bipolar disorder 94, 323 4 birth weight, and depression 399 BJP (British Journal of Psychiatry) 9, 9 10 black/minority ethnic groups; see also cultural identity; ethnicity; race cultural identity 134 mental illness 135 6, 136 8 qualitative research 82 3 schizophrenia 197 200, 199 blogs 478 blood brain barrier 299 body shape, cultural influences 119

INDEX

bonding ties 221 books, self help 441 3, 442 borderline personality disorder (BPD) 251 5, 454, 487 bottom up research 78 9; see also qualitative research boundaries of mental illness 39 42, 46 brain cancer, mortality rates 186, 188 Brazil 231 2, 280 Brent Woods Conference 143 bridging ties 221 British Crime Survey (BCS) 260 British Journal of Psychiatry (BJP) 9, 9 10 British Psychiatric Morbidity Survey 57 Buddhism 238, 241 Buffalo Creek flood 156 bulimia 278; see also eating disorders bullying 291 Burden Assessment Scale (BAS) 532 burden of care 104 5, 531 2; see also carers; families Cache County Study on Memory Health and Aging 402, 403 call centres 145 CAM (complementary alternative medicine) 127, 128, 309 Canada 440, 554 6; see also Americas cancer mortality rates 186, 187, 188 population level health improvements 182 3 CANDID 1 (Culture and Identity Schedule) 135 9 cannabis 205 cardiovascular factors, and dementia 299 Care Programme Approach (CPA) 389 carers 463 4; see also burden of care; community based treatment; families coping styles 105 6 in India 531 2 Caribbean 553 4 cartesian dualism 15 16 case examples 52 3, 483 4 case management 389 93 catechol O methyl transferase (COMT) gene 205 6 categorization of mental illnesses see classification/ categorization Catholicism 238 causation models cultural influences 124 5, 126 health inequalities 184 5 psychiatric illness 188 90 psychosis 204 7, 207 stress/depression 215

567

CBA (cost benefit analysis) 379; see also cost effectiveness; efficiency, economic CD (conduct disorder) 93 CEACs (cost effectiveness acceptability curves) 378 ‘Changing Minds’ campaign 335 chatrooms 478 Chernobyl disaster 161 cherry picking 83 child custody 324 5 child protection 483, 489, 491 2; see also abuse attachment 485 background information 484 case example 483 4 extra family abuse 490 neurodevelopment 485 parental mental health 490 1 parents, mental health 485 6 personality disorders 487 8 psychosocial factors 485 within family abuse 489 90 childhood adversity 401; see also children’s mental health; developmental perspectives; poverty; stress and dementia 298 9 effects in later life 346 and personality disorder 254 and psychosis 200 2, 207 children’s mental health 285, 292; see also childhood adversity abuse, childhood 289 cross sample variations 287 family environments 286 90 family function/parental discord 289 homelessness 292 life events 292 neighbourhood influences 292 parental illness 288 9 parenting styles 286 8, 287 poverty 291 prevention strategies 399 401 religious beliefs 290 school environments 290 1 sibling illness/disability 289 90 social contexts 285 6 socioeconomic factors 291 2 Chile 280 China 517 18, 526 addiction 524 5 alcohol use/abuse 525 depression 521 3 eating disorders 280 family interventions 431

568

INDEX

China (Continued ) health care provision 519 20 mental health burden 518 migrant workers 525 6 psychiatric services 519 psychoses 523 4 social fragmentation/loss of cultural values 520 1 suicide 238, 239, 241, 520 1 choice, treatment 312, 313, 433 4; see also coercion Christian houses 268 CIDI (Composite International Diagnostic Interview) 91 2, 93 4 Civil Rights Movement 8, 9 10 classification/categorization 31 2 clinical utility 35, 35 diagnostic categories/continuums 32, 32, 34, 34 5, 35 perinatal mental disorders 326 personality disorder 250 1 quotation 51 reliability/validity 33 4, 34 social psychiatry applications 36 clients carer relationships 108 communities 419 20 participation in treatment 108 9, 416, 417 reluctant 46 7; see also choice; coercion self control/autonomy 417, 420 symptoms, and burden of care 105 climate, and schizophrenia 197 clinical approaches to social support 469 72 iceberg model 310 11 utility, classification/categorization 35, 35 clubhouses 414, 428 CMDs see common mental disorders CMHTs see community mental health teams cocaine 147 Coconut Grove nightclub fire 156 coercion, medical 46 7, 312, 313, 417, 419; see also choice; hospitalization cognitive behaviour therapy 1, 20, 167, 450 1, 466 cognitive bias, and psychosis 206 7, 207 cognitive stimulation therapy (CST) 378 colds/fevers 59 60 Collaborative Study on Strategies for Extending Mental Health Care 532 collectivist societies 238 9 colon cancer, mortality rates 188 commodification of health 147 common mental disorders (CMDs); see also anxiety; depression

comorbidity 229 30 definitions 227 economic impact 231 education/employment 232, 233 epidemiology 227 8 future research 233 4 health service use 230 1 public health implications 232 4 risk factors 228 30 social environment 232 sociocultural factors 231 2 socioeconomic factors 229, 231, 233 special needs groups 233 communication underclass 480 community involvement 417 18 Community Mental Health Centres Act 8 community based treatment 416 17; see also deinstitutionalization; therapeutic communities drug use/addiction 266 7, 268 9 social support 427 8, 467 9 community mental health teams (CMHTs) 392, 394 5, 427 8 assessments/reviews 389, 393 4 case management/assertive community treatment 389, 390 3 characteristics, team 391 3, 392 continuity, in/out patient care 393 current developments 393 4 early history 388 evidence based care 394 governance 393 4 meta regression of home based care 390 1, 391, 392 research 389 90 specialization 393, 394 staffing 388 team structures 387 8 triage/allocation/zoning 389 community psychiatric nurses (CPNs) 388 community psychiatry 552 community workers 469 comorbidity, mental disorders 97, 229 30 competing risks model 188 competitiveness 464, 470 complementary alternative medicine (CAM) 127, 128, 309 complex emergencies 157; see also trauma Composite International Diagnostic Interview (CIDI) 91 2, 93 4 COMT (catechol O methyl transferase) gene 205 6 Concept Houses 268 9 conduct disorder (CD) 93

INDEX

confabulation 17 Confucianism 238, 241 consensual verification 15 conservation of resources (COR) theory 159 constraints 313 consumers of mental health services see clients contextual measures, depression 216 contingency management 451 continuity, in/out patient care 393 continuums, illness/health 32, 32, 34, 34 5, 35; see also classification/categorization Convention on Prevention and Punishment of the Crime of Genocide (CPPCS) 164 coping styles 470; see also adaptation to trauma avoidant 105, 420, 453 carers 105 6 and disasters 159 60 illness behaviour 308, 310, 311 and migration 122 COR (conservation of resources) theory 159 cortisol 219 20 cost benefit analysis (CBA) 379; see also efficiency; funding cost effectiveness acceptability curves 378 analysis 378 9 definitions 374 5 health care 371 2 cost functions 380 cost offset calculations 379 cost utility analysis (CUA) 379 80 costly signalling 345 course of illnesses dementia 300 epidemiology of mental disorders 96 personality disorder 252 CPA (Care Programme Approach) 389 CPNs (community psychiatric nurses) 388 CPPCS (Convention on Prevention and Punishment of the Crime of Genocide) 164 creolizing world 146 cross cultural validity 1, 138 9, 149 cross fertilization of ideas 7; see also multidisciplinary services CST (cognitive stimulation therapy) 378 cue perception 23 cultural contexts of mental illness 117 18, 129, 231 2 acculturation 123, 126 Africa 543 4 clinician culture 125 7, 126 culture of the individual 125

569

definitions 118 19 depression 522 3 disease/illness distinctions 125 and distress 119 eating disorders 278 80, 280, 282 ethnicity 120 and food 277 life events/psychiatric morbidity 122 3 mental disorders 93, 119 20 migration 121 2, 122 organizational culture 125 pharmacotherapy 127, 128 psychotherapy 127 8 race/racism 120 1 relationships with clinicians 124 5, 126 suicide 520 1 cultural identity 123 4, 133, 139; see also black/minority ethnic groups; ethnicity; race comparison of cases/controls 137 8 comparison of control subjects across ethnic groups 136 7 Culture and Identity Schedule (CANDID 1) 135 9 and eating disorders 279 eating disorders 281 and globalization 146 7 measurement 133 5 study background 135 6 Culture and Identity Schedule (CANDID 1) 135 9 cyberbullying 480 Cyprus 240 Czech Republic 280 danger, and depression 217 data analysis, qualitative research 78, 83 4 day care interventions for psychosis 428 9 DBT (dialectical behaviour therapy) 451 death, parental 401; see also childhood adversity debriefing, trauma 168 decade of the brain 8 decision making 455 defeat, social 204 5, 217, 243, 345 definitions common mental disorders 227, 440 coping 308 culture 118 19 drug use/addiction 259 60 effectiveness 374 5 efficiency 373 5 ethnicity 120 of health/illness 40, 42, 43 illness/health/sickness behaviour 307

570

INDEX

definitions (Continued ) later life disorders 297 social determinants of mental illness 398 social management 439 40 social psychiatry 3, 5 6, 551 support networks/social support 461 2 trauma/disasters 156 7 deinstitutionalization 351, 387; see also community based treatment delays in treatment 311 12 delusions; see also religious beliefs and childhood adversity 201 in non clinical populations 19 20 social nature of psychiatry 20 dementia 56, 296, 297; see also Alzheimer’s disease cardiovascular factors 299 classification/categorization 33 course of illnesses/prognosis 300 education/childhood adversity 298 9 prevention 402 3 social determinants 297 8, 299 301 demoralization 159, 160 denial coping style 105 dependence 463 depression 215, 222; see also common mental disorders; postnatal depression and abuse, childhood 486 adolescence 401 adulthood 401 aetiological model 216 20 Africa 543 and birth weight 399 China 521 3 comorbidity 97 constructions of mental illness 42 and cultural factors 522 3 and cultural identity 135 diagnostic categories/continuums 32, 32, 35 and disasters 159, 160 dynamics of social environment 69, 70 exercise 403 and expressed emotion 107 family therapy 440 1 gene environment interactions 218 20, 219 and globalization 145 and homelessness 355 income/social class 301 internet based interventions 444 5 interpersonal psychotherapy 465 6 intervention studies 465 later life disorders 300 3

life events 216 17 and migration 122, 145 and parenting styles 289 pharmacotherapy 190 and pregnancy 322 prevention 402 3 Problem Solving Treatment in Primary Care 467 psychoeducation 443 4 qualitative research 82 resilience enhancement 445 6 school environments 291 self help 442 social capital 220 2 and social defeat 205 social science perspectives 58, 59 and social skills 471 and social support 462, 463 sociodevelopmental origins 193 and socioeconomic status 346 8 stigma 333, 334 and stress/strain 205, 215 16, 303, 462 and suicide 241, 404 and torture 164 and trauma 157, 158, 159 vulnerability factors 218 Determinants of Outcomes of Severe Mental Disorder (DOSMeD) 194, 531 detoxification 270 developmental perspectives 69, 485, 487 8; see also childhood adversity; sociodevelopmental origins of psychosis deviance, social 41, 54 6, 345; see also antisocial behaviour DHEA (dehydroepiandrosterone) 220 diabetes 185 diagnosis; see also misdiagnosis categories/continuums 32, 32, 34, 34 5, 35; see also classification/categorization constructions of mental illness 41, 42 controversy, personality disorder 249 50 cultural influences see cultural contexts of mental illness epidemiology of mental disorders 91 2, 93 social science perspectives 57 8 Diagnostic and Statistical Manual of Mental Disorders (DSM) 33 4, 41, 53 cross cultural validity of diagnosis 149 cultural influences 118 depression 466 drug use/addiction 261 epidemiology of mental disorders 91, 94, 97 perinatal mental disorders 326

INDEX

personality disorder 250, 449, 450 and social psychiatry 562 trauma 157 Diagnostic Interview Schedule (DIS) 91, 261 dialectical behaviour therapy (DBT) 451 diet; see also eating disorders; food and pharmacotherapy 128 in pregnancy 399 prevention 403 dimensional classifications, personality disorder 250 direct payments 429 30 DIS (Diagnostic Interview Schedule) 91, 261 disability; see also physical health constructions of mental illness 42 India 532 3 sibling 289 90 Disability Assessment Schedule (WHO DAS) 533 Disability Discrimination Act 433 disadvantage, and schizophrenia 198 200, 199; see also childhood adversity; stress disasters 159 62; see also trauma disclosure of symptoms 80 discrimination 333 4 global patterns 334 5 and schizophrenia 198 200, 199 Discrimination and Stigma Scale (DISC) 335 disease/illness distinctions 125 disgrace 533 displacement 351 5 dissociation 19, 157 distress; see also stress; trauma cultural influences 119 epidemiology of mental disorders 97 and genocide 165 and globalization 143, 145 divorce effects on children 401 life events 346 and mental health 533 stigma/discrimination 335 and suicide 237 9, 520 doctors, drug use/addiction 264 Doctors Without Borders 143 domestic violence 325 6; see also abuse; child protection dominance 464 dopamine metabolism 23, 204 5 DOSMeD (Determinants of Outcomes of Severe Mental Disorder) 194, 531 double binds 54 doubling up 352

571

drug use (illicit) 147 8, 259, 272, 353, 354; see also pharmacotherapy and abuse, childhood 486 Africa 544 5 amongst medical staff 264 career of 265 6 China 524 5 community based treatment 266 7 and cultural identity 135 definitions/terminology 259 60 environmental manipulations 271 epidemiology 260 1 gender 265 and globalization 145 narcotics anonymous 267 8 National Treatment Outcome Research Study 262 3 natural history of 265 6 neighbourhood influences 271 2 in pregnancy 399 prison release 264 relapse 269 70 spontaneous/natural recovery 270 therapeutic communities/rehabilitation houses 268 9 treatment policy 266 UK studies 263 4 Vietnam Study 261 2 DSM see Diagnostic and Statistical Manual of Mental Disorders Dunedin longitudinal study 205, 220 Durkheim, Emile 341 2, 520 dynamics of social environment 66 9; see also environmental dynamics dysfunction, mental illness constructions 43 5, 46 dysthymia 97 EAAD (European Alliance Against Depression) 513 early intervention (EI) 379 Eastern cultural traditions 238, 241, 279 80; see also China; Japan Eating Attitude Test Questionnaire (EATS) 279 eating disorders 278; see also diet; food cross cultural risks/global trends 279 80, 280 cultural identity 281 food/culture/society 277 gender 278 interventions/prevention 281 2 and self esteem 149 sociocultural factors 278 80 sociocultural model 282 spectrum hypothesis 278 thinness ideal 278 urbanicity 279

572

INDEX

economic development 562 economic impact of mental disorders see cost benefit; cost effectiveness; efficiency; funding/costs EDEN (European Day Hospital Evaluation) study 510 Edinburgh Post Natal Depression Screen 399 education/schools 68 common mental disorders 232, 233 and dementia 298 9 internet 480 psychoeducation 167, 168, 443 4, 455 school based programmes 400 1, 404 school environments, and child mental health 290 1 EE see expressed emotion effectiveness, definition 374 5 efficiency, economic 371 2 ; see also cost benefit; cost effectiveness; efficiency; funding cost functions 380 cost benefit analysis 379 cost effectiveness analysis 378 9 costs 377 cost utility analysis 379 80 definitions 373 5 measurement/analysis 376 80 outcomes 376 7 pursuit of 380 1 theoretical framework 373 4 Effort Syndrome Unit 3 EI (early intervention) 379 elderly people see later life disorders EMDR (eye movement desensitization and reprocessing) 167 emotional bias, and psychosis 206 7, 207 emotional hurt 238 emotion focused coping 105; see also expressed emotion empirical studies see evidence based strategies; experimental studies employment/unemployment 349 51; see also meaningful activity common mental disorders 232 importance of 402, 414, 420 1, 433, 469 and suicide 237 9 vocational rehabilitation 429 empowerment 413, 414, 420 endophenotypes 22 3 Enhancing Quality of Life and Independence through Supported Employment (EQOLISE) trial 510 ENMESH (European Network for Mental Health Service Evaluation) 512 13 entrapment 217 environment gene interactions see gene environment interactions

environmental dynamics 65 6, 73, 440 area level factors 69 71 and common mental disorders 232 mobility, social/geographic 72 3 social capital 71 2 social structure 66 9 socialization processes 66 8 environmental interventions 271, 467; see also interventions, social Epidemiological Catchment Area Study 57, 228, 229, 440 epidemiology 5, 6, 91, 99 Aetiology and Ethnicity in Schizophrenia and other Psychoses 135 Africa 541 3 age of onset distributions 95 6 assessment methodology 91 2 common mental disorders 227 8, 440 comorbidity 97 course of illness 96 depression 521 2 and diagnosis 33 drug use/addiction 260 1 personality disorder 252 prevalence 93 4 and qualitative research 85 refugees 163 social factors 343 4, 345 societal costs 97 8 sociodevelopmental origins of psychosis 194 5 treatment 98 episodes of illness see network episode model EPSILON (European Psychiatric Services) study 510 EQ 5D (Euro Qol ) 376, 380 EQOLISE (Enhancing Quality of Life and Independence through Supported Employment) trial) 510 ESTSS (European Society for Traumatic Stress Studies) 513 ethics of qualitative research 82 ethnic density 138 ethnic identity 67 Ethnicity and Psychosis Study (EPS) 136, 138 ethnicity; see also black/minority ethnic groups; cultural identity; race common mental disorders (CMDs) 229 and culture 120 and health/mortality 181 2 and schizophrenia 197 200, 199 ethnography 81 2 European Alliance Against Depression (EAAD) 513 European Day Hospital Evaluation (EDEN) study 510

INDEX

European Federation of Associations of Families of People with Mental Illness (EUFAMI) 513 European mental health services 501 2, 508 associations/societies 512 13 experimental studies 510 funding/costs 502 7, 503, 504, 505, 506, 507 naturalistic studies 510 North European social psychiatry revolution 413 policies/legislation/mental health care models 507 8, 508 prevention/health promotion issues 511 12 scope/future of 514 15 service provision/outcomes 509 10 European Network for Mental Health Service Evaluation (ENMESH) 512 13 European Pact for Mental Health (EC) 502 European Psychiatric Services (EPSILON) study 510 European social psychiatry revolution 413 European Society for Traumatic Stress Studies (ESTSS) 513 Euro Qol (EQ 5D) 376, 380 EuroSC (European Schizophrenia Cohort) 510 Every Child Matters agenda 485 evidence based strategies 6, 426; see also experimental studies community mental health teams 394 prevention 399 403 evolutionary naturalism 40, 42, 43, 45, 46, 47 evolutionary theory 40, 43 5, 157 exercise, and dementia/depression 403 exosystem model of child mental health 286 experience sampling 203 experimental studies; see also evidence based strategies European mental health services 510 social support 464 5 explanatory models see causation models exposure therapy 167 8 expressed emotion (EE) 430 1, 439, 441, 464 families and psychosis 106 and patient outcomes 106 7 patient perceptions 108 as risk factor for psychosis 200 schizophrenia 468 externalizing behaviour 69, 354 extinction learning 158 extraversion personality trait 250 Exxon Valdez oil spill 162 eye contact, and culture 126 eye movement desensitization and reprocessing (EMDR) 167

573

Facebook 478 9 face to face contact 480 facial affect recognition 23 families 103, 109 10; see also burden of care; carers; expressed emotion burden of care/patient symptoms 105 caregiving impacts 104 5 carer coping styles 105 6 child mental health 286 90 India 531 2 interventions 430 1, 439, 467 patient perceptions 108 positive family relationships 107 8 prevention strategies 401 as resource 103 4 and suicide 242 3 therapy 440 1 working with 108 9 Family Burden Scale of Reference 532 farmers, suicide 536 fatalism 241 fathers 326 7 fear conditioning 158; see also post traumatic stress disorder; trauma fear disorders 97; see also anxiety Feminism 8, 9 fevers 59 60 financial support, social interventions 429 30 Finland 238, 504, 507 flooding 161 focus groups 80 1 food; see also diet; eating disorders and culture 277 insecurity 233 Foucault, M. 40, 41, 53 Fountain House 414 fragmentation, social 196, 520 1; see also isolation fresh start experiences 222, 446 Freud, Sigmund 7 funding mental health services; see also cost benefit; cost effectiveness; efficiency common mental disorders 23, 197 8 Europe 502 7, 503, 504, 505, 506, 507 gaming 479 GATT (General Agreement on Tariffs and Trade) gender and common mental disorders 228 and depression 215 drug use/addiction 265 eating disorders 278

143

574

INDEX

gender (Continued ) and marriage cost benefits 463 and parenting styles 288 and personality disorders 487 social determinants of mental illness 398 socialization 69 and stigma 533 and suicide 244 gene environment interactions 203, 205 6; see also genetics child mental health 285 6 depression 218 20, 219 later life disorders 303 mental health 464 personality disorders 487 general adaptation theory 58; see also adaptation to stress/trauma General Agreement on Tariffs and Trade (GATT) 143 General Health Questionnaire (GHQ) 443 General Motors 143 generalizability of research 83 generalized anxiety disorder (GAD) 94, 95, 96, 97, 159; see also anxiety generation of alternatives 455 genetics; see also gene environment interactions fundamental causes of psychiatric illness 189 and health/mortality 182 and population level health improvements 183 and psychosis 202 schizophrenia 21, 22, 193, 194, 198 genocide 164 5 geographical mobility 72 3, 301 2 George III 412 Germany 241 2, 504, 507, 510 GHQ (General Health Questionnaire) 443 Global Burden of Disease Study 518 global patterns eating disorders 279 80, 280 stigma/discrimination 334 5 global warming 171 globalization 141 2, 151, 342 changing perceptions of mental disorders 145 6 cultural identity 146 7 health as commodity 147 historical development 142 4 impact of 142 information sharing 148 and mental health 149 migration 148 9 pharmacotherapy 147 8

social inequality 145, 150 training/research 150 goal setting 455 governance, community mental health team structures 393 4 Green Paper on Mental Health 511 Gross Domestic Product, European countries grounded theory, qualitative research 84 group therapy 3 4, 80 1, 467, 468 Guidelines, Schizophrenia 109 guilt 164, 238

503

habitus 66, 67, 72, 73, 344 hallucinations 17 18 case studies 52 3 and childhood adversity 201 mental nature of symptoms 15, 16 in non clinical populations 20, 20 and trauma 18 19 harm to others see violence health; see also disability; mental health; physical health advisors 308 10, 309, 310 behaviour, definition 307 belief model 307, 314 care domain 45 7 care provision, China 519 20 economics see efficiency, economic seeking behaviour 6 service use, common mental disorders 230 1 tourism 147 health inequality 181, 341 3; see also socioeconomic status causality 184 5, 188 90 changes over time 186, 186 8, 187, 188 core proposition 184 displacement/residential instability 351 5 empirical evidence 185 8 and globalization 150 and health/mortality 181 2, 182 and mental health 145, 343 4 population level health improvements 182 3, 183 poverty, rethinking 355 6 preventable causes of death 185 6 social class/life stress 344 9 unemployment 349 51 Health Utilities Index 376 heart disease 182 3, 187 hepatitis C 267 heritability see genetics heroin 147, 263 hierarchy stress 346 7

INDEX

high risk situations 398 Hispanic societies 240 historical developments 3 5, 9 biological psychiatry, rise of 7 8 China 517 community mental health teams 388 cross fertilization 7 definition 3, 5 6 globalization 142 4 social interventions 411 13 United States 8 11 HIV/AIDS 183, 263 4, 535, 542, 553 Hodgkin disease 183 Holocaust 165 home based care, meta regression of 390 1, 391, 392; see also community mental health team structures homelessness 260 1, 292, 351 5 homosexuality 41, 42 Hong Kong 519 20 hope 420 hopelessness, and suicide 238, 240, 241 hospitalization 426 7; see also coercion; mental institutions housing see accommodation HPA (hypothalamic pituitary adrenal) axis 204 5, 219 20 HRT, and dementia 403 human rights, respect for 419 humanitarian values 4 humiliation 217 hurricane Katrina 161 5 HTP (5 hydroxytryptamine) 220, 303 hypothalamic pituitary adrenal (HPA) axis 204 5, 219 20 IAPT (Improving Access to Psychological Therapies) 379 IASC (Inter Agency Standing Committee) 167 IDEAS (Indian Disability and Psychiatric Assessment Scale) 533 identity, cultural see cultural identity IED (intermittent explosive disorder) 93 ignorance, and stigma 333, 335, 335 illicit drugs see drug use illness behaviour 6, 307 8 constraints 313 coping styles 308, 310, 311 factors shaping 314 health advisors/patterns of response 308 10, 309, 310 public perceptions of mental health problems 311 seriousness of illness/treatment needs 311 12 seriousness of illness/treatment use 312

575

sociodemographic characteristics 314 theoretical models 314 16, 315 treatment choice/coercion 312, 313 treatment uptake improvements 311 understanding 316 uptake of mental health services 310 11 illness/disease distinctions 125 image matrices, illness behaviour 309, 310 IMF (International Monetary Fund) 143 IMPACT programme 418 Implementing Mental Health Promotion Action (IMHPA) 511, 513 Improving Access to Psychological Therapies (IAPT) 379 impulsive personality disorder 251 impulsivity 453, 454 inclusion, social 36, 432 4, 433, 434 income, later life disorders 301; see also socioeconomic status India 145, 531, 538 burden of care 531 2 disability 532 3 help seeking 536 8 religious beliefs/spirituality 536 8 stigma of mental disorders 533 4 suicide 534 6 Indian Disability and Psychiatric Assessment Scale (IDEAS) 533 Indian Persons with Disabilities Act 532 indicated interventions 397 individual interviews 79 individual placement and support (IPS) 414, 419, 510 individualistic societies 238 9 inequality see health inequality; socioeconomic status infancy, prevention strategies 399 400 infanticide 326 Infanticide Act 484 infectious disease, population level health improvements 182 3; see also HIV/AIDS information sharing health 148 internet 480 internet based, concerns/issues 480 stigma 333 information technology, and eating disorders 281 2 in/out patient care, continuity 393 insider perspectives 85 insight 17 institutional racism 120 1 integration, social 342, 345 important elements to change 463 and suicide 237 9, 240 1

576

INDEX

intentionality 16 Inter Agency Standing Committee (IASC) 167 intermittent explosive disorder (IED) 93 internal markets 381 International Center for Clubhouse Development 414 International Monetary Fund (IMF) 143 International Study of Schizophrenia 431 internet 148, 444 5, 479 81; see also websites interpersonal psychotherapy (IPT) 465 6 interpretive phenomenological analysis (IPA) 83 4 interventions, social 387, 411, 412, 425, 426; see also treatment interventions accommodation 426, 428 client communities 419 20 coercion, avoiding 417 collaboration with social agencies 418 community based treatment 416 18, 427 8 current developments 431 4 day care 428 9 employment 420 1 empowerment 413, 414, 420 evidence based strategies 426 family interventions 108 9, 430 1 financial support 429 30 hospitalization 426 7 meaningful activity 428 9 historical precedents 411 13 individual self control/autonomy 417 mental hygiene movement 412 13 modern rehabilitation models 414 15 moral treatment 411 12 multidisciplinary services 415 16, 421 North European social psychiatry revolution 413 optimism, therapeutic 421 and pharmacotherapy 416 political advocacy 418 19 recovery model 415, 431 2 relationships 430 1 respect for human rights 419 social inclusion 432 4, 433, 434 social skills training 430 social support 464 5, 470 1 stigma, fighting 418 treatment location/settings 416 17 user/consumer participation in treatment 416 vocational rehabilitation 429 interview methodology 79 Interview Schedule for Social interaction (ISSI) 464 intrusiveness 24 involuntary/reluctant patients 46 7; see also choice; coercion

iodine supplements 399 IPA (interpretive phenomenological analysis) 83 4 IPS (individual placement and support) 414, 419, 510 IPT (interpersonal psychotherapy) 465 6 Islington study of depression 216, 217, 218 isolation, social 204 and eating disorders 282 and globalization 146 important elements to change 463 and insight 17 mothers with severe mental problems 324 and psychosis 202, 203 and schizophrenia 196, 197 stigma of mental disorders 533 and suicide 240 ISSI (Interview Schedule for Social interaction) 464 Italy 510 Japan 238, 280, 335 Jones, Maxwell 3, 5 journal articles, psychosocial karma 161 khat 148 Korsakoff syndrome

9, 9 10

17

labelling 31; see also classification/categorization; stigma labelling theory 51, 54 6 later life disorders 303; see also dementia definitions 297 depression/mental disorders 300 3 geographical mobility 301 2 income/social class 301 life events 301 modifying factors 302 3 physical health/disability 296, 301 prevention 402 3 problems of later life 295 7 social support 302 Latin America 552 3 lay systems of care 308 9 layered contexts model 286 LEDS (Life Events and Difficulties Schedule) 216, 217, 348 legislation 507 8, 508 leucotomy 7 life course trajectories 67 life events; see also stress child mental health 292 and culture/race 122 3 and depression 216 17, 465

INDEX

fundamental causes of psychiatric illness 189 later life disorders 301 and psychosis 202 3 research 6, 23 4 and social class 344 9 and suicide 243 vulnerability factors 218 Life Events and Difficulties Schedule (LEDS) 216, 217, 348 life expectancy rates, US 183 living circumstances, and common mental disorders 229 lobotomy 7 local treatment centres 416 locus of control 420 loss and depression 217 and genocide 165 social science perspectives 59 and suicide 520 1 loud thoughts 18 lung cancer mortality rates 187, 188 macrosystem model of child mental health 286 Maine, Tom 3, 4, 5 maintenance interventions 397 major depressive disorder (MDD) 94; see also depression making sense of the world 16 17 Malaysia 119 mania, and cultural identity 135 marginalization black/minority ethnic groups 138 and globalization 142, 146, 148 school environments 290 marriage and depression 215 discord, and child mental health 289 and gender 463 therapy 467 mastery coping style 308 maturing out process 270 Maudsley Hospital 3 Mauritius 255 McDonalds 142, 143 MDD (major depressive disorder) 94; see also depression meaningful activity 428 9; see also employment/ unemployment media influences 190, 244 5 medical model see biomedical model of mental illness medical staff, drug use/addiction 264 medicalization of behaviour 149

577

medication, psychotropic see pharmacotherapy; see also drug use (illicit) mental health; see also services, mental health and migration 148 9 conceptualizations 39 42 evolutionary/social/personal norms 43 5 health care domain 45 7 research 68 9 social construction 54 6 and suicide 535 Mental Health Action Plan for Europe (WHO) 502 Mental Health Declaration for Europe (WHO) 502 Mental Health in Emergencies (WHO) 167 Mental Health: New Understanding, New Hope (WHO) 501 mental hygiene movement 412 13 mental institutions 56, 412 13; see also coercion; hospitalization mesosystem model of child mental health 286 meta regression of home based care 390 1, 391, 392 methadone treatment 267, 270 Microsoft 143 microsystem model of child mental health 286 Midtown Manhattan Study 189 migrant workers, Chinese 525 6 migration 72 3, 121 2, 122 common mental disorders 232 and cultural identity 133 4 and globalization 143 and mental health 145, 146, 148 9 and schizophrenia 197 200, 199 and social psychiatry 562 and suicide 241 2 Mill Hill Emergency Hospital 3 A Mind That Found Itself (Beers) 412 13 minority ethnic groups see black/minority ethnic groups mirroring 15 misdiagnosis personality disorder 249 50 psychosis 55 mixed methods research mobility, social/geographic 72 3 models child mental health 286 mental health care 507 8, 508 of mental illness 544 5 recovery 415, 431 2 rehabilitation 414 15 modernity 342 mood disorders, age of onset distributions 95 6; see also depression

578

INDEX

moral career of the mental patient 55 moral theory 56 moral treatment 411 12, 420 mortality rates brain cancer 186 personality disorder 252 3 and social inequality 181 2, 182 and socioeconomic status 187 8 United States 187 mother and baby psychiatric units 324 motherhood; see also postnatal depression and schizophrenia 323 and severe mental problems 324 5 and socioeconomic status (SES) 348 moving house 351 5 multidisciplinary services 415 16, 421 Munchausen syndrome by proxy 491 MySpace 478 9 NAPs (nonaffective psychoses) 93 4, 95, 96 NAPE (Nordic Association for Psychiatric Epidemiology) 512 Narcotics Anonymous (NA) 267 8 narrative exposure therapy 167 8 National Association for Mental Health 413 National Comorbidity Survey (NCS) 57, 230, 346, 440 common mental disorders 228, 229 uptake of mental health services 310 National Health Service, UK 381 National Household Survey of Britain 440 National Institute for Clinical Excellence (NICE) 109, 380, 442 National Institute for Mental Health 8, 432, 466 National Longitudinal Mortality Study (NLMS) 185, 188 National Social Inclusion Programme 432 National Treatment Drug Monitoring System (NDTMS) 260 National Treatment Outcome Research Study (NTORS) 262 3 natural disasters see disasters; trauma naturalism 40, 42, 43, 45, 46, 47 naturalistic studies, European mental health services 510 NCS see National Comorbidity Survey NDTMS (National Treatment Drug Monitoring System) 260 needle/syringe exchange schemes 266 7 needs, treatment 311 12, 374 negative symptoms, mental nature 22 3 neighbourhood influences 271 2, 292, 344 NEM (network episode model) 315, 315, 316 Netherlands 510

Netley Hospital 4 network episode model (NEM) 315, 315, 316 neurasthenia 522 neurocognitive correlates of schizophrenia 22, 23 neurodevelopment 485 neuroticism personality trait 218 19, 250, 462 New Zealand 432, 440 newborn infants, prevention strategies 399 400 NICE (National Institute for Clinical Excellence) 109, 380, 442 NLMS (National Longitudinal Mortality Study) 185, 188 nonaffective psychoses (NAPs) 93 4, 95, 96 nonresource inputs, definitions 374 Nordic Association for Psychiatric Epidemiology (NAPE) 512 norms, cultural 125, 145, 149, 561 norms, social/personal 43 5 North America 554 6 North European social psychiatry revolution 413 Norway 240, 505, 508 nose design function analogy 43 4 NSAIDs (non steroidal anti inflammatory drugs) 402 NTORS (National Treatment Outcome Research Study) 262 3 nutrition see diet; food; see also eating disorders objective/subjective burden of care 104 5 obsessive compulsive disorder (OCD) 94, 230 ODD (oppositional defiant disorder) 93, 554 ODIN (Outcomes of Depression International Network) 440, 510 Office of Population Censuses and Surveys (OPCS) 260 older adults see later life disorders Open Society for Mental Health Initiative (OSMHI) 513 openness personality trait 250 oppositional defiant disorder (ODD) 93, 554 optimism, therapeutic 412, 421 organic brain syndromes 296 organizational culture 125 OSMHI (Open Society for Mental Health Initiative) 513 otherness 120 Outcome of Depression International Network (ODIN) 440, 510 outcomes definitions 374 evaluation/maintenance, social support 471 2 measurement/analysis 376 7 out/in patient care, continuity 393 ovarian cancer, mortality rates 186, 188

INDEX

PACE (Personal Assistance in Community Living) teams 418, 431 panic disorder 159, 444 5 paranoia 20, 24, 196 Paranoia Checklist 20 parent child relationships 69 parental mental health impact on child 485 6 and child protection 490 1 prevention strategies 399 400, 400 parenting styles and child mental health 286 9, 287 and personality disorder 254 5, 487 8 participant observation studies 81 2 passivity experiences 17 18 patients see clients PCGMHW (primary care graduate mental health worker) 442, 443 peer groups 68, 243 4 peer pressure 146 perceptions of mental disorders Africa 544 5 client 108 and globalization 145 6 India 534 media role 190 public 311 perfectionism, and suicide 239 40 perinatal prevention strategies 399 400 perinatal mental disorders 321, 327 abortion 321 2 classification/categorization 326 domestic violence 325 6 fathers 326 7 infanticide 326 mothers with severe mental problems 324 5 pregnancy 322 4 permissive parenting 287, 288 Personal Assistance in Community Living (PACE) teams 418, 431 personal norms 43 5 personality disorder 35, 249; see also problem solving therapy for personality disorder; and see specific disorders by name aetiology 253 5 attachment/parenting 254 5 child protection psychiatric interface 487 8 childhood trauma 254 classification/categorization 33, 250 1 course of illnesses 252 developmental perspectives 487 8

579

diagnostic issues 41, 249 50 harm to others 253 impact of 252 3 intervention studies 255 mortality, premature 252 3 and parenting styles 487 8 prevalence 251 problems of later life 297 psychiatric perspectives 487 psychological treatments 450 1 social construction of mental illness 56, 149 treatment of 255, 450 pessimistic thinking styles 24, 56 pharmacotherapy 7; see also drug use (illicit) antidepresssants 167 antipsychotics 323, 413 and culture 127, 128 and dementia 402 3 depression 222, 440 1 and globalization 147 NSAIDs (non steroidal anti inflammatory drugs) 402 and pregnancy 323 4 and prevalence of mental illness 190 reducing reliance on 416 trauma/disasters 167 phobias 94, 230 physical health; see also disability later life disorders 296, 301 and personality disorder 252 pluralism 151; see also globalization PMS see Psychiatric Morbidity Survey policies, mental health 507 8, 508 political advocacy 418 19 political violence 162 population level health improvements 182 3, 183 Positive and Negative Symptoms Scale 376, 432 positive problem orientation 452 3 positive symptoms, mental nature 22 3 postnatal depression 322 4, 399 400 infanticide 326 and social support 464 5 post traumatic stress disorder (PTSD) 157 9; see also trauma age of onset distributions 95, 96 comorbidity 97 controversies surrounding 168 70 cultural influences 119 and disasters 160 1 and genocide 165 internet based interventions 444 5 interventions 167

580

INDEX

post traumatic stress disorder (PTSD) (Continued ) prevalence 94 refugees 163 social construction of mental illness 56 and torture 164 and trauma 18 19 war/political violence 162 poverty; see also childhood adversity; socioeconomic status child mental health 291 common mental disorders 231, 233 disorder 342 global distributions 144, 150 rethinking 355 6 social determinants of mental illness 398 and suicide 342 PPGHC (Psychological Problems in General Health Care) 543 precipitating factors 398 predisposing factors 398 pregnancy, and mental health 322 4; see also perinatal mental disorders prejudice 333, 480; see also stigma premature mortality, and personality disorder 252 3 prevalence mental disorders 93 4 personality disorder 251 prevention 4 5, 397, 404 in adulthood 401 2 in childhood/adolescence 400 1 eating disorders 281 2 European mental health services 511 12 evidence based strategies 399 403 interventions 397 older adults 402 3 paradox 397 perinatal/infancy 399 400 processes at onset of mental disorder 398 resilience 400 1 strategies 398, 398 9 suicide 403 4 targets 398 price efficiency 375; see also cost benefit; cost effectiveness; efficiency; funding/costs primary care graduate mental health worker (PCGMHW) 442, 443 primary prevention see prevention primate studies, dopamine metabolism 204 Principles of Social Psychiatry (Leff) 551 prison release 264 problem definition 455

focused coping 105 orientation 452 solving style 453 problem solving therapy for personality disorder 449, 450, 452, 456, 456 7 social problem solving 452 3, 453 5, 454 Stop & Think! 451, 455 6 Problem Solving Treatment in Primary Care 467 prodromal phases 312, 431 production of welfare perspective 374 productivity, definitions 375 prognosis, dementia 300 projection, thoughts 15, 18 prolactin 323 prolonged exposure therapy 167 8 protestant work ethic 142 pseudo patient experiment 55 Psychiatric Morbidity Survey (PMS) 228, 230 common mental disorders 229 personality disorder 253 psychiatric services see mental health services psychiatry biological 7 8 and psychotherapy 6 social science perspectives 54 psychoanalysis 8 psychodynamic therapy 155 6, 450 1 psychoeducation 167, 168, 443 4, 455 psychological debriefing 168 Psychological Problems in General Health Care (PPGHC) 543 psychological treatments, personality disorder 450 1 psychosis; see also sociodevelopmental origins of psychosis; schizophrenia and childhood adversity 207 China 523 4 dynamics of social environment 70 misdiagnosis 55 and mobility, social/geographic 72 3 social science perspectives 58 and trauma 18 19 psychosocial conceptions of 23 4 factors 485 journal articles 9, 9 10 management principles 462 3 psychotherapy and culture 127 8 and prevalence of mental illness 190 principles 462 3

INDEX

and psychiatry 6 social support 465 7 psychotic experiences 17 18 PTSD see post traumatic stress disorder public health implications, common mental disorders 232 4 public perceptions of mental health problems

311

qualitative research 77 8, 79, 86, 431 approaches to 78 9 critical appraisal 85 6 data analysis, approaches 83 4 data analysis, preliminary 83 focus group discussions 80 1 individual interviews 79 mixed methodology 84 5 participant observation 81 2 study design 82 3 quality adjusted life years (QALYs) 376, 380 quality of life studies 510 Quatro (Quality of Life following Adherence Therapy) Study 510 questionnaires 216 race; see also black/minority ethnic groups; cultural identity; ethnicity and culture 120 1 and health/mortality 181 2 racial identity see cultural identity racism 120 1, 148 randomized controlled trials (RCTs) 426 rape 164 rational choice theory 71 rational problem solving 453 rationing, health service use 314 recovery models 415, 431 2 reductionism 15 reflexivity 84, 85 reforms, mental institutions 412 13 Refugee Convention 162 3 refugees 158 9, 162 3 rehabilitation houses 268 9 models, rehabilitation 414 15 after torture 164 vocational 429; see also employment/unemployment rejecting behaviour 333 4, 335 relapse 109 10, 269 70 relationships client perceptions 108 with clinicians see therapeutic relationship

581

interventions, social 430 1 and mental health 6, 387 mother infant 160 parent child 69 positive family relationships 107 8 therapeutic 6 reliability, classification/categorization 33 4, 34 religious beliefs 19 20 child mental health 290 and delusions 119 and mental health 536 8 and suicide 237 9, 536 reluctant patients 46 7; see also choice; coercion reminiscence therapy 403 representations of mental illness 39, 40 research and globalization 150 stigma 331 3 residential instability 351 5; see also accommodation resilience 159, 341, 342, 356, 398 enhancement 400 1, 445 6 and homelessness 354 resource inputs 374, 377 respect 412, 419 responses to mental illness 59 61, 308 10, 309, 310 reviews, community mental health teams 389 risk factors common mental disorders 228 30 suicide 535 rodent studies, dopamine metabolism 204 role reversal 485 6 Royal College of Psychiatrists 4 Royal Medico Psychological Association (RMPA) 3, 4, 5, 6 Rwanda 165 sampling methodology 78 SCARF (Schizophrenia Research Foundation) 532 Schedule for the Assessment of Psychiatric Disability 533 Schedule of Recent Experiences 345 schizophrenia 15; see also psychosis; sociodevelopmental origins of psychosis China 523 4 community based treatment 416 17 and cultural identity 135, 137 8 delusions 19 20 epidemiology 194 expressed emotion 439, 441, 468 families of patients see families fundamental causes 189 genetics of 21, 22

582

INDEX

schizophrenia (Continued ) and globalization 150 impact on child of parents with 486 importance of work 420 India 531 2 and migration/ethnicity 197 200, 199 and mobility, social/geographic 72 3 and mother infant relationships 323 mothers with severe mental problems 324, 325 and post traumatic stress disorder 18 19 prevalence of 93 social construction of 56 social determinants of 56 sociodevelopmental origins of 193 stigma/discrimination 334 5, 533 and suicide 404 symptoms, mental nature 15, 16 therapeutic optimism 412 treatment interventions 524 and urbanicity 195 7 Schizophrenia Research Foundation (SCARF) 532 schizophrenogenic mother 54, 200 schools see education/schools Second Life 479 secure attachment 287 ‘see Me’ campaign 335 selection, genetic 182, 189 selective interventions 397 self control/autonomy 417, 420 self esteem 420 and depression 446 and eating disorders 149 importance of work 421 loss 217 and mental health 335 and migration 122 moral treatment 412 self harming behaviour 47, 120, 145 self help books 441 3, 442 self help groups 468 semi structured interviews 216, 217 sensitization processes 204 sensory experiences 16 17 SEPRATE (structured events probe and narratives rating method) 349 seriousness of illness, and illness behaviour 311 12 services, mental health Africa 546 7 China 519 European 509 10

gaps 310 11 uptake 311, 312 SES see socioeconomic status SFQ (Social Functioning Questionnaire) 455 6 shame 164, 238, 335, 533 sibling illness/disability, and child mental health 289 90 sick role 7, 60 sickness behaviour, definitions 307 smoking in pregnancy 399 Social and Community Psychiatry Group, Royal College of Psychiatrists 4 5 social anxiety disorder 444 5 social capital 57, 69, 71 2, 220 2 social class see socioeconomic status Social Class and Mental Illness (Hollingshead and Redlich) 188 9 social cognition, and schizophrenia 22 3 social cohesion 520 social construction of mental illness 54 6 social costs of mental disorders 97 8; see also funding/costs social cue perception 23 social defeat 204 5, 217, 243, 345 social determinants of mental illness 56 9, 343 4 Africa 545 definitions 398 dementia 299 301 social deviance 41, 54 6, 345; see also antisocial behaviour social disorders 207 social disorganization theory 69 social distance 546 social ecological positioning 160 social efficiency 375 social environment see environmental dynamics social exclusion 72 social firms 414 social fragmentation 196, 520 1; see also isolation Social Functioning Questionnaire (SFQ) 455 6 social inclusion 36, 432 4, 433, 434 social inequality see health inequality; socioeconomic status social integration see integration social interventions see interventions, social social isolation see isolation social management of common mental disorders 439, 446 bibliotherapy 441 3, 442 definitions 439 40 family therapy 440 1 internet based 444 5 psychoeducation 443 4 resilience enhancement 445 6

INDEX

social medicine 14 social mobility 72 3 social networking 467, 468, 477 8, 481 2 internet based 479 80 internet based, concerns/issues 480 1 and mental health 479 modern day changes 478 9 sites 478 9 social norms 43 5 social phobias 94 social problem solving 452 5, 454; see also problem solving therapy for personality disorder Social Problem Solving Inventory Revised (SPSI R) 453 4, 454, 456 social psychiatry 13 14, 24 anomalous experiences 17 18 cartesian dualism 15 16 classification/categorization 36 Americas 551 2 definition 3, 5 6, 551 delusions 19 20, 20 endophenotypes/symptoms 22 3 future of 561 2 genetics of schizophrenia 21, 22 hallucinations/psychosis/traumatic abuse 18 19 history see historical developments making sense of the world 16 17 psychosocial, conceptions of 23 4 revolution 413 scope/future of xi xii symptoms, mental nature 14 15, 16, 22 3 United States 8 11 Social Psychiatry in the Late Twentieth Century (Sorel) 554 social representations of mental illness 40 social responses to mental illness 59 61 social science perspectives 51 4, 57, 61 social services 309; see also services, mental health social skills 430, 471 social stress theory 56, 58 9, 68 9; see also stress social structure 66 9 social suffering 52 3 social support 461, 472 clinical approaches 469 72 community support systems 467 8 community based treatment 468 9 definitions 461 2 and depression 463 environmental interventions 467 experimental studies, need for 464 5 important elements to change 463 4

583

intervention planning/targets 470 1 later life disorders 302 outcome evaluation/maintenance 471 2 psychosocial management principles 462 3 psychotherapeutic approach 465 7 and suicide 240 1, 243 4 socialization processes 43, 66 8 societies, European mental health services 512 13 sociobehavioural model 307, 314 sociocentric societies 146 sociodemographic characteristics of illness behaviour 314 sociodevelopmental origins of psychosis 193 4, 208 adult adversity 202 3 causation mechanisms 204 7 childhood adversity 200 2 discrimination/disadvantage/anomie 198 200, 199 epidemiological changes 194 5 migration/ethnicity 197 200, 199 social contexts/structures 195 7 social disorder 207 urbanicity 195 7, 200 socioeconomic status (SES) 57, 69; see also childhood adversity; health inequality; poverty child mental health 291 2 common mental disorders (CMDs) 229 and dementia 298 and depression 70 and distress 346 fundamental causes of psychiatric illness 188 90 and health/mortality 181 2, 184 later life disorders 301 and life stress 344 9 and motherhood 348 and preventable causes of death 185 6 problems of later life 296 sociodevelopmental origins of psychosis 193 sociological imagination 53 4, 57, 61 somatization 522, 543 4 South America 552 3 special needs groups 233 specialization, community mental health teams 393, 394 spectrum hypothesis 278 Sphere Project 167 spirituality, and mental health 536 8 SPSI R (Social Problem Solving Inventory Revised) 453 4, 454, 456 Sri Lanka 168 staffing, community mental health teams 388 State Trait Anger Expression Inventory (STAXI 2) 456 statins, and dementia 402 3 status anxiety 346 7

584

INDEX

stepped care 442 stereotyping 56, 151, 333 stigma 8, 56, 68, 80, 323, 562; see also prejudice Africa 546 China 522 common mental disorders 234 depression 82 discrimination 333 4 experienced/anticipated 333 fighting 418, 418, 432 global patterns 334 5 India 533 4 ignorance/knowledge 333, 335 internalized 420 mental institutions reforms 413 mothers with severe mental problems 324, 325 overcoming 471 postnatal depression 322 prejudice 333 research limitations 331 3 understanding 331 Stirling County Study 189 Stop & Think! 451, 455 6 STR (Support, Time and Recovery) 431 strain theory 56, 57 8, 68 stress; see also life events buffering 221 2 cultural influences 119, 122 3 and depression 205, 215 16, 217, 303, 462 fundamental causes of psychiatric illness 182, 189 general adaptation theory 58 and globalization 143, 146 hierarchy stress 346 7 internet based interventions 444 5 later life disorders 301 mothers with severe mental problems 325 and neurodevelopment 485 and population level health improvements 183 and pregnancy 323 psychoeducation 443 4 and psychosis 202 3, 206 resilience enhancement 445 6 social determinants of mental illness 398 social stress theory 56, 58 9, 68 9 and suicide 243 structural strain theory 56, 57 8, 68 structural violence 57 structured assessments 393 4 Structured Clinical Interview 228 structured events probe and narratives rating method (SEPRATE) 349

study design, qualitative research 82 3 subjective burden of care 104 5 substance abuse see drug use suffering 52 3, 170; see also trauma suicide 237, 245 and abuse, childhood 486 China 238, 239, 241, 520 1 exposure to suicidal behaviour in others 244 5 family characteristics 242 3 farmers 536 India 534 6 life events 243 and mental health 535 and migration 241 2 perfectionism 239 40 and personality disorder 252 3 prevention 403 4 religious beliefs/spirituality 536 risk factors 535 social fragmentation/loss of cultural values 520 1 social support 240 1, 243 4 social variables in young people 242 5 sociological determinants 237 9 Suicide (Durkheim) 342 Suicide Prevention and School Crisis Management Programme 404 Suicide Prevention Multisite Intervention Study on Suicidal Behaviours (SUPRE MISS) 536 superstitious thinking 164 Support, Time and Recovery (STR) 431 support networks; see also social support definitions 461 2 and depression 220 2 supported accommodation 426 SUPRE MISS (Suicide Prevention Multisite Intervention Study on Suicidal Behaviours) 536 Switzerland 510 symptoms, mental nature 14 15, 16, 22 3 Taoism 238, 241 TAPS (Team for the Assessment of Psychiatric Services) 428 target efficiency 375 targeted prevention 397, 401 2 Tavistock Institute of Human Relations 4 Team for the Assessment of Psychiatric Services (TAPS) 428 teams see community mental health teams technical efficiency 375 technological disasters 161 2 technological revolution 562; see also internet

INDEX

terminology see definitions terrorism 160 1 thematic analysis 84 theory of mind 22 3 theory of reasoned action 307 therapeutic communities 3, 5, 268 9, 413, 414 therapeutic optimism 412, 421 therapeutic relationship 6, 464 and culture 124 5, 126, 127, 128 and depression 462, 465 Therapy Rating Scale 466 thinness ideal 278 thought broadcast 17 18 Three Mile Island disaster 161 Time to Change programme 432 tobacco use 260 top down research 78 torture 163 4 tourism, health 147 training 150, 233 trans generational effects 69, 165, 400, 487, 492 transinstitutionalization 8 transition, social 514 trauma 52 3, 155 6, 170 1; see also post traumatic stress disorder adaptation to 157, 160, 165, 166; see also coping controversies 168 70 definitions/delimitations 156 7 disasters 159 61 genocide 164 5 interventions 167 8 and personality disorder 254 and psychosis 203 refugees 162 3 technological disasters 161 2 torture 163 4 understanding 157 9 war/political violence 162 traumatic abuse 18 19 treatment interventions 397; see also interventions, social choice/coercion 312, 313 delays 311 12 drug use/addiction 266 9 eating disorders 281 2 environmental 271, 467 epidemiology of mental disorders 98 gaps 310 11 individual 465 7; see also psychotherapy location 416 17 maintenance 397 needs 311 12

585

personality disorder 255 schizophrenia 524 and seriousness of illness 312 settings 417 trauma 167 8 uptake 310 311 triage, community mental health teams 389 trickle down effects 144, 150 tsunami, Sri Lanka 168 turning points 431 twelve step treatment, drug use/addiction 267 8, 268 9 twin studies 219 UK Confidential Enquiry into Maternal Deaths 325 UK Drug Policy Commission (UKDPC) 270 unconscious mental processes 7 unemployment see employment/unemployment United Kingdom British Psychiatric Morbidity Survey 57 common mental disorders 440 community support 428 drug use/addiction 263 4 European mental health services 510 funding/costs of mental health services 504, 507 service provision/outcomes 509 social psychiatry 9 10 United Nations Convention on Prevention and Punishment of the Crime of Genocide (CPPCS) 164 United States 554 6; see also Americas brain cancer mortality rates 186 Epidemiological Catchment Area Study 57 illness/health/sickness behaviour 308 life expectancy rates at birth 183 mortality rates 187, 187 National Comorbidity Survey 57 social psychiatry 8 11 universal prevention measures 397 uptake of mental health services 310 12 urban development theories 56 7 urbanicity and eating disorders 279 and parenting styles 288 and personality disorder 251 as risk factor for psychosis 195 7, 200 and stigma of mental disorders 534 users see clients validity CANDID 1 138 9 classification/categorization 33 4, 34 cross cultural 149

586

INDEX

values, loss of cultural 520 1 vascular dementia 299 Vietnam Study of drug use/addiction 261 2 violence; see also abuse; child protection common mental disorders 231 2 domestic, and pregnancy 325 6 fears, and stigma 333 and personality disorder 253 violent multicriminal child sex abusers (VMCCSAs) 490, 490 virtual reality worlds 479, 480 vocational rehabilitation 429; see also employment/ unemployment vulnerability and adversity 206 7 to depression 218, 219 gene environment interactions 218 20 war 162; see also trauma on terror 163, 171 veterans 3 4, 18 19 warmth, carer 107 8 web forums 478 websites 502, 512, 513 Webster Stratton Incredible Years Programme 400 Wellness Recovery Action Plan (WRAP) 431

Western cultural traditions and depression 522 3 and eating disorders 279 suicide 238, 241 WHIMS study 403 World Bank 143 World Health Organization (WHO) 91 2 Determinants of Outcome project 194, 531 Disability Assessment Schedule 533 Mental Health Action Plan for Europe 502 Mental Health in Emergencies’ 167 Mental Health: New Understanding, New Hope 501 Psychological Problems in General Health Care 543 World Mental Health (WMH) Survey Initiative 92, 93, 96, 97 8, 518 World of Warcratf (WoW) 479 World Psychiatric Association 143 World Trade Centre attack 163 World Trade Organization (WTO) 143 WRAP (Wellness Recovery Action Plan) 431 yin/yang 522 York Retreat 411 12, 413 zoning, community mental health teams

Index by Judith Reading

389