f a m i l y p s y ch o ed u ca t i o n fo r s e rio u s m e n t a l i lln e s s
EV ID ENC E- B ASED P R AC TIC ES SER IES
s eries ed it o rs : David E. Biegel, Ph.D. Elizabeth M. Tracy, Ph.D. Mandel School of Applied Social Sciences, Case Western Reserve University
Family Psychoeducation for Serious Mental Illness Harriet P. Lefley
The Evidence-Based Practices Series is published in collaboration with the Mandel School of Applied Social Sciences at Case Western Reserve University.
FA M I L Y P S YC H O E D U C A T I O N F O R S E R IO U S ME N TA L I L L NESS
Harriet P. Lefley
1 2009
1 Oxford University Press, Inc., publishes works that further Oxford University's objective of excellence in research, scholarship, and education. oxford new york Auckland Cape Town Dar es Salaam Hong Kong Karachi Kuala Lumpur Madrid Melbourne Mexico City Nairobi New Delhi Shanghai Taipei Toronto with offices in Argentina Austria Brazil Chile Czech Republic France Greece Guatemala Hungary Italy Japan Poland Portugal Singapore South Korea Switzerland Thailand Turkey Ukraine Vietnam Copyright © 2009 by Oxford University Press, Inc. Published by Oxford University Press, Inc. 198 Madison Avenue, New York, New York 10016 www.oup.com Oxford is a registered trademark of Oxford University Press 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, without the prior permission of Oxford University Press. Library of Congress Cataloging-in-Publication Data Lefley, Harriet P. Family psychoeducation for serious mental illness / Harriet P. Lefley. p. cm.—(Evidence-based practices) Includes bibliographical references and index. ISBN 978-0-19-534049-5 1. Mental illness—Treatment. 2. Family psychotherapy. 3. Evidence-based psychiatry. I. Title. RC480.L435 2009 616.89'156--dc22 2008046056 1 3 5 7 9 8 6 4 2 Printed in the United States of America on acid-free paper
This book is dedicated to consumers with serious mental illness, and to the families and friends who love them.
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P RE F A C E
When I was asked to contribute a book to a series on evidence-based practices in mental health treatment, I could only claim some degree of expertise in family psychoeducation for schizophrenia and other serious mental disorders. However, this is not my personal area of research. I must rely on the work of the greats in this field, the pioneers whose work I have noted in the Acknowledgments section. Although my research has been in other areas of mental illness, family psychoeducation and family education have been a major source of interest to me for at least a quarter of a century. This book focuses on family psychoeducation, which targets effects of family interventions on the persons with mental illness. However, I am including a substantial section on family education, which targets the needs of their families for coping skills. (Further distinctions between these two concepts will be carefully discussed in Chapter 2.) Mental illness has a huge impact on families, and alleviating psychological distress in caregivers is a legitimate concern for mental-health professionals. Several important books have been written about various models of family psychoeducation and numerous overviews of the research can be found in the literature. To the best of my knowledge, most of these are cited here and hopefully integrated into a larger picture of what is actually going on in the field today. To this end, I have also included descriptions of programs that are not readily available in scientific journals. This book covers a wide range of models, from randomized controlled studies to ongoing brief educational courses, with and without evaluation data. The selection is based primarily on family psychoeducation programs with rigorous research designs and outcome data, those that exemplify evidencebased practice. However, briefer family education models are also included, contingent on available research findings, but also on a program's longevity, updated
VII
VIII
PREFACE
manualization, and number of people served. I have tried to give as broad and inclusive a picture as possible of what is actually offered to families of individuals with serious mental illness today, and apologize for any inadvertent omissions. For practitioners wishing to implement evidence-based family psychoeducation, with full fidelity to the research model, the most valuable resource is the family psychoeducation toolkit developed primarily by Dr. William McFarlane and Dr. Lisa Dixon, under the auspices of the Substance Abuse and Mental Health Services Administration (SAMHSA). The toolkit is available online and in manual form (see Department of Health and Human Services, 2003, and www.samhsa.gov). During the last quarter century, family psychoeducation has proved efficacious in significantly deterring relapse and re-hospitalization in patients with schizophrenia, bipolar disorder, and various other diagnostic categories, and in many cases enhancing families’ well-being. Although most of the research has focused on schizophrenia, this intervention has proved beneficial across a range of severe psychiatric disorders. But evidence-based family psychoeducation has reached at best a few thousand families. National Alliance on Mental Illness's (NAMI) Family-to-Family has been taught to over 125,000 families. Some empirical data are now available for the effectiveness of this program, as well as for Journey of Hope. Because there have been numerous other attempts to provide family education, I decided to include a description of some of these other models, with whatever data have become available on their outcomes. These may be helpful to clinicians who wish to implement their own programs, but lack the resources available in well-funded research projects. For the past quarter century I have also been engaged in leading a psychoeducational support group for families of people with severe mental illness at one of the largest psychiatric centers in the southeast. This is an open-ended group, a free service available to the public as well as to families of our patients. Families come and go according to need. Some come only during a crisis. Others have come consistently for ten or more years. Over the years thousands of families have told me their stories. When I speak about family experiences and family burden in the forthcoming pages, much of what I say will be derived from stress theory and from the copious research on family burden. But research data provide a picture that is only as comprehensive as the questions asked and answered. Few of the instruments that measure stressful life events or family burden deal with patients’ access to hospitalization, legal constraints, or other aspects of mental-health systems that impede timely treatment and cause frustration and grief to families. Nor do the research instruments mention the effects of incorrect theories and ineffective treatments on the psychological well-being of families. Distancing behaviors and failure to communicate on the part of mental-health staff are serious aspects of family burden, but they are not found in the measurement scales. Many issues that arise in
PREFACE
IX
support-group discussions regarding malfunctioning mental-health systems, which manifestly contribute to family disorder, are not found in the literature. So, some of the observations in this book will be based on my years of listening to families, as well as on citations from theory and research. In the main, I have tried to present a comprehensive picture of what is currently available to educate caregivers of people with serious mental illness, to distinguish the aims of family psychoeducation and family education, and to present an argument for the usefulness of both. At the end, I speak of the potential for introducing family psychoeducation as standardized treatment in mental-health systems, and what we can expect for the future. Clinicians and clinicians-in-training are well aware of the importance of social context for recovery from mental illness. In current mental-health systems, not only service providers, but other patients—consumers in recovery—are fulfilling a long-needed, tremendously important role in helping people recognize their strengths and lead satisfying lives. But for many consumers, families may be even more critical, because caring, knowledgeable family members are lifetime support systems. It is clear that they need information and understanding from the clinicians who treat their loved ones. I hope this book fulfills its aim of educating mental-health professionals on the importance of educating families, friends, and all others concerned with the welfare of persons with serious mental illness.
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A C KN O W L E D G ME N TS
Much of this book is based on the pioneering work of Julian Leff, William McFarlane, Carol Anderson, and the late great innovators Ian Falloon, Gerald Hogarty, and Michael Goldstein. The research contributions of Robert Liberman, Kim Mueser, David Miklowitz, Shirley Glynn, Jan Randolph, and Nina Schooler have provided extremely valuable sources. In the United Kingdom, there are seminal research findings from Liz Kuipers, Nicholas Tarrier, Christine Barrowclough, Paul Bebbington, Max Birchwood, Graine Fadden, Christine Vaughn, and Dominic Lam. I might also add the contributions of Jose Canive, Steve Lopez, and Amy Weisman, and anthropologists Janis Jenkins and Kim Hopper, to the issue of cultural diversity. The writings of Thomas McGlashan and Patrick McGorry have edified me on the early intervention research and its possibilities. Mary Fristad at Ohio University has probably done the most important work with children, applying family psychoeducation to pediatric mood disorders. Although I have never met them, I have found extremely valuable the research of J. Bauml and G. Pitschel-Walz in Germany, M.J. Masanet and I. Montero in Spain, L. Magliano and A. Fiorillo in Italy, and the studies published by M.Phillips, M. Xiang, W.Xiong, and M. Zhang and their colleagues in China. The Optimal Treatment Project team of Ian Falloon, Rita Roncone, and their many colleagues in Europe and elsewhere, continues to add immeasurably to our knowledge. And Bill McFarlane continues to expand his demonstrably effective multi-family model into ever-widening areas of research and practice. Professor Lisa Dixon, University of Maryland, has done invaluable work on many levels. Her collaboration with Anthony Lehman on the Schizophrenia Patient Outcomes Research Team (PORT) study first publicized the importance of family psychoeducation as a treatment modality for schizophrenia (see Introduction).
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XII
ACKNOWLEDGMENTS
In her continuing overviews of family psychoeducation and her controlled studies of the Family-to-Family Program of the NAMI, Lisa Dixon has added immeasurably to our knowledge of what works for people with mental illness and their families. Susan Pickett-Schenk, University of Illinois, has also added to our knowledge of the effects of family education and Judith Cook to our knowledge of family burden. Phyllis Solomon, University of Pennsylvania, and her colleague Jeffrey Draine have been major, prolific researchers of family support groups and family education. Edie Mannion and Marilyn Meisel of the Technical Assistance Center of Southeastern Pennsylvania, and Robert Coursey, University of Maryland, were early developers of family education and in their collaborations with Phyllis Solomon produced important research findings on its effects. Charles Rapp at the University of Kansas School of Social Welfare and Mental Health Research Laboratory helped develop curriculum and training materials on psychoeducational approaches that could be used by family support groups (see Wintersteen, 1987, in Appendix) also Christopher Amenson of Pacific Clinics Institute. There are many, many others; I wish I could acknowledge them all. I have known and communicated with most of the researchers mentioned at some point in my life, and have been greatly enriched by their insights. Some have remained long-time personal friends. And now I want to express my deepest appreciation to some very special people with whom I have collaborated for almost three decades. Professors Agnes Hatfield, Dale Johnson, Mona Wasow, and Diane Marsh, with whom I have co-authored several books and/or articles, have been treasured friends and colleagues throughout the years. Agnes Hatfield, professor emerita, University of Maryland and an early president of NAMI, must be hailed as a pioneer in conceptualizing and writing about the family experience of mental illness in terms of stress, coping, and adaptation theory. Her early work in family education was later specialized in psychoeducational work with elderly caregivers. Dale Johnson, professor emeritus, University of Houston, also a former NAMI president, trained generations of clinical psychologists and expanded his interest in culture, particularly American Indian cultures, into an international perspective as President of the World Fellowship for Schizophrenia and Allied Disorders. Professor Mona Wasow, University of Wisconsin, has trained generations of clinical social workers to facilitate rehabilitation and recovery of persons with severe mental illness. Professor Diane Marsh, University of Pittsburgh, has influenced a generation of psychologists to become more invested in serving persons with serious mental illness. Our friendships and collaborations as NAMI members have been invaluable in conveying the needs of family caregivers to new generations of clinicians. Dr. Joyce Burland, Director, NAMI Education, Training, and Peer Support Center, has been an invaluable source of information on NAMI educational activities and also a valued friend and colleague throughout the years. Nursing educators Mary Moller and the late Victoria Conn, and psychologists Kayla Bernheim
ACKNOWLEDGMENTS
XIII
and Cynthia Bisbee, were early pioneers in developing educational modules for families. Psychologist Fred Frese and Dr. Penny Frese were pioneers in developing psychoeducational modules for schoolchildren. I am also grateful to Dr. David Biegel of Case Western Reserve University for his continuing interest in families, minorities, and evidence-based practice. I want to thank all these people for having educated me in the writing of this book. And I am grateful to many of them for having been and/or continuing to be my friends. Most important, their work has had an impact on the field and, in many cases, changed the course of treatment for major psychiatric disorders. Their research has demonstrably helped people with major mental illnesses, and probably every one of them has enriched the coping skills of families.
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CONTENTS
1
i nt ro du ct i on
2
f am i l y i n t e rv e n t io ns in majo r ment al il l n e ss Models and Commonalities
3
f am i l i e s , s ch i z o phrenia, and o t her majo r disor de r s Historical Background
4
the ore t i c a l p remis es and res earc h o verv ie ws The Evidence for Family Psychoeducation
5
mo de l re s e a r c h pro grams Family Psychoeducation
6
ear l y i n t e r v e n t io ns 58 Prodromal, Children, and Adolescents
7
d i v e rs e di a g n os es and s pec ial po pul at io n s
68
8
i nt e r n a t i on a l a nd c ro s s -c ult ural s t ud ies Uniformities and Variations
80
9
f am i l y e du c a t i on
1 8
28
35
96
10 tr a i n i n g a n d t raining is s ues 11 i mp l e m e n t a t i on in s ervic es
106 112
12 un re s ol v e d i s s ues in family ps yc ho ed uc ation A Critical Assessment
122
13 f ut u re t r e n ds in famil y invo lvement in tr e atme n t Appendix
141
15
References
149
XV
Indexes 167
129
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f a m i l y p s y ch o ed u ca t i o n fo r s e rio u s m e n t a l i lln e s s
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1 I N T RO D U C TI O N
This book focuses on an evidence-based approach to working with families of persons with serious mental illness (SMI). Division 12 (Clinical Psychology) of the American Psychological Association has defined evidence-based treatments (EBTs) in terms of the following criteria: (1) at least two good between-group design experiments must demonstrate efficacy in one or more of the following ways: superiority to pill or psychotherapy, placebo, or to other treatment; equivalence to already established treatment with adequate sample sizes; (2) experiments must be conducted with treatment manuals or equivalent clear description of treatment; (3) characteristics of samples must be specified; and (4) effects must be demonstrated by at least two different investigators or teams (see Chambless and Hollon, 1998). Kazdin (2008) has distinguished EBT from evidence-based practice (EBP), which “refers to clinical practice that is informed by evidence about interventions, clinical expertise, and patient needs, values, and preferences and their integration in decision making about individual care” (p. 147). In this book, we use the broader concept of EBP in two domains: as an empirically-supported intervention that includes family support as an integral component of treatment for SMI, and as a support for families in coping with its disruptive effects. What is meant by SMI? Coursey, Alford, and Safarjan (1997) noted that this term replaced “chronic mental illness” during the 1990s because of the demoralizing impact of the word “chronic” on clients. Both terms characterize individuals who have severe and persistent disabilities that result from a psychiatric disorder. “The term severe was defined as functional limitations in activities for daily living, social interaction, concentration, and adaptation to change in the environment. Persistent was defined as likely to last for 12 months. The term serious mental illness
1
2
FAMILY PSYCHOEDUCATION FOR SERIOUS MENTAL ILLNESS
is usually reserved for adults, whereas serious emotional disturbance is the broad title for the equivalent in children” (p. 205). Serious mental illness has been defined by the Center for Mental Health Services (CMHS) in accordance with Public Law (P.L.) 102–321, which established a block grant for states to fund community mental health services for adults with SMI. The law required an operational definition of SMI in order to estimate prevalence. In such an estimate, Epstein, Barker, Vorburger, and Murtha (2004, p.6), note that “The definition of SMI stipulated in P.L. 102–321 requires the person to have at least one 12-month disorder, other than a substance-use disorder, that met DSM-IV criteria (American Psychiatric Association, 1994) and to have ‘serious impairment’ . . . equivalent to a Global Assessment of Functioning (GAF) score of less than 60 (Endicott, Spitzer, Fliess, and Cohen, 1976).” In the CMHS definition, functional impairment was more precisely defined as difficulties that substantially interfere with or limit role functioning in one or more major life activities, including basic daily living skills (e.g., eating, bathing, dressing) or instrumental living skills such as managing money, maintaining a household, taking prescribed medication, or functioning in social, family, and vocational/educational contexts. Mental disorders differ in diagnosis, type, and intensity of symptomatic behaviors, levels of functional impairment, and duration of disability. Diagnostically, persons with schizophrenia, major affective disorders, and psychotic states are considered to have an SMI. Adults with major anxiety disorders and other diagnoses may also be characterized as having an SMI if they have prolonged levels of functional impairment that preclude leading fully productive lives. Persons with repeated needs for crisis intervention or hospitalization are considered to have an SMI. In the population-based National Comorbidity Survey, Kessler et al. (2006) attempted to assess the number of persons with SMI in the United States. Respondents with 12-month mental disorders were defined as having SMI if they had at least one of the following: 12-month bipolar 1 disorder or non-affective psychosis (NAP). NAP included schizophrenia, schizophreniform disorder, schizoaffective disorder, delusional disorder, and psychosis not otherwise specified; a 12-month suicide attempt; at least two areas of role functioning with self-described “severe” role impairment on the Sheehan Disability Scales (Leon, Olfson, Portera, Farber, and Sheehan, 1997); and the GAF score previously cited. Government publications have indicated that “In 2002, there were 17.5 million adults aged 18 or older with SMI during the 12 months prior to being interviewed. This represents 8.3 percent of all adults in the United States”(Epstein, Barker, Vorburger, and Murtha, 2004, p. 15). The schizophrenias and major affective disorders have comprised 55% of hospital admissions and 65% of inpatients under care (Lefley, 1996). Most of the research on family psychoeducation (FPE) has been conducted with families of persons
INTRODUCTION
3
with these diagnoses, and FPE is now a well-established psychosocial treatment for schizophrenia. In recent years, however, FPE has been extended to other diagnoses and these are described in subsequent chapters. In assessing prognosis for major psychiatric disorders, both clinical and community prevalence studies demonstrate the importance of family and caring friends for positive outcomes (Evert et al., 2003; Harvey et al., 2007). Family members in particular are the people who knew the patient in his or her pre-morbid state and have shared the confusions, disruptions, and emotional ravages of the illness. In most cases, a caring family continues to be the most stable resource for patients throughout a lifetime of stressors, shifting resources, and changing clinical services. Estimates of the number of adults with mental illness living with their families vary between 50% and 84% (Marshall and Solomon, 2004). Research indicates that 75% of persons with schizophrenia have some ongoing contact with family members (Lehman and Steinwachs, 1998). Even when they do not live with the patient, concerned family members find services for their ill relatives, provide social, financial, and emotional support, and serve as a last resort when the system fails (Brekke and Mathiesen, 1999; Clark and Drake, 1993). But to be optimally beneficial, family and other caregivers need education about the disorders, some knowledge of illness management techniques, and personal support. FPE is a contemporary, very powerful addition to the armamentarium of beneficial psychological interventions. In contrast to many models of individual and family therapy, FPE is evidence-based, with research-based efficacy for reducing relapse and hospitalization, reducing symptoms, and increasing employability of persons with severe and persistent mental illness. In achieving these results, a meta-analysis of the research has demonstrated that psychoeducation for client alone is not as effective as when families are included (Lincoln, Wilhelm, and Nestoriuc, 2007). Although the focus is on client outcome, psychoeducation has also proved effective in reducing family burden and improving well-being of those struggling to cope with the mental illness of a loved one. FPE also expands the definition of that which is considered therapeutic. It is an intervention whose principal beneficiary is another. Although psychoeducation helps allay a host of problems, it is not considered treatment for the principals involved. Julian Leff, internationally known as a research psychiatrist, family therapist, and founder of FPE, points out that when dealing with schizophrenia or other SMI, “I do not refer to family work as therapy since the family members are not considered to be in need of treatment. Rather they need to be seen as allies in the struggle to help the ill person recover from schizophrenia and fulfill their potential” (Leff, 2005, p.3). This firmly places the family in a context very different from that which initially informed family therapy for schizophrenia (see Chapter 3), and one that is unfortunately still widely conceptualized in our field. The family is viewed not as a
4
FAMILY PSYCHOEDUCATION FOR SERIOUS MENTAL ILLNESS
contributor to psychopathology, but as ongoing support system for mental disorders that are increasingly viewed as biogenic. Among all the mental health professions, counseling or psychotherapy models have typically focused on the amelioration of symptoms or distress of individuals, couples, or family systems. Whether through insight into childhood conflicts, recognition of thought distortions, countering emotional dysregulation, or comprehending dysfunctional interpersonal relationships, we have targeted changes in thought, behavior, and family systems to deal with life conflicts. This new technique demonstrates the efficacy of ordinary education. FPE is so titled because it transcends simple information-gathering to deal with the psychological issues that inevitably accompany mental illness in the family. But the basis is state-of-the-art education—simply improving understanding through learning what is known and not known about an illness and how to assess and cope with its manifestations. This is true for both clients and for those who love and support them. With de-institutionalization—the historical act of emptying large mental institutions—numerous people with SMI were discharged to families who were ill-prepared to cope with these new additions to their households. Some had infrequent contact with their ill relatives due to institutional policies that tended to discourage visitations from families and from the outside world in general (Rothman, 1971; Terkelsen, 1990). Others had maintained contact but had little knowledge of mental illness and how to cope with its symptoms. Many accepted this task reluctantly, having established other commitments and priorities. Some families had totally unrealistic expectations and were unable to handle psychotic behavior or maintain household stability. And people who had spent long years in institutional care were catapulted into unfamiliar living arrangements, with their own anxieties about this change in their lives. Worried caregivers, uncertain of their roles, could only exacerbate terrors and paranoid ideation. The need for caregiver preparation was immediately apparent, but most mental health systems offered nothing to families in the way of training. A few progressive psychiatrists had started early work with families. They understand the importance of involving their patients’ support systems, as well as satisfying family members’ needs for help in managing the illness and alleviating their own distress. Psychiatrist Richard Lamb, University of Southern California, Los Angeles, was an early mentor to the Parents of Adult Schizophrenics of San Mateo County, CA (Lamb and Oliphant, 1978). These parents subsequently became core organizers of The National Alliance on Mental Illness (NAMI). Psychiatrist Robert Liberman began involving families in treatment as early as 1966, as a Harvard resident at Massachusetts Mental Health Center (Liberman, 1970). In 1973, he introduced psychoeducational classes for the families of patients who were attending the Oxnard, CA Community Mental Health Center, when he was the sole psychiatrist for 500 patients who came from impoverished, often Latino immigrant backgrounds.
INTRODUCTION
5
“After a 45-minute lecture-discussion, I organized the families and their patients in small groups with clinicians from the Center for more focused problem-solving and collaboration on a wide variety of problems, goals, and stressors” (Liberman, King, and DeRisi, 1976; R.P. Liberman, personal communication, April 29, 2008). Some mental health professionals who were also family members began to develop training manuals for family education (e.g., Bisbee, 1999; Hatfield, 1990). Shortly after its organization in 1979, NAMI (then the National Alliance for the Mentally Ill) began to administer family education in the major psychiatric disorders, as did a few chapters of the National Mental Health Association (now Mental Health America or MHA). In fact, the last quarter century has seen the emergence of many different models of helping families cope with the dilemmas of major mental illness. This book tries to present a global picture of these various attempts. We focus on evidence-based models of FPE, but also present data on a few selected, mostly manualized examples of the large number of efforts to educate families in their new roles as community caregivers.
THE SCOPE OF FAMILY CAREGIVING With the emptying of hospital beds for long-term care, families have now become the major caregivers and lifetime support systems of persons with major psychiatric disorders throughout the world (Warner, 2000). In China, over 90% live with their families (Xiong et al., 1994). In countries with more community resources such as Italy, where the last long-term hospital patients were discharged in 2000, from 70% to 84% of persons with schizophrenia now live in the family home (Warner, 2000). In the United States, ethnic minorities are more likely to live with their mentally ill relatives. In a number of studies the figure for Latinos, for example, ranged from 75% to 85% co-residence vis a vis two-thirds for African-Americans and about 40% for white-Americans (Lefley, 1996). Even when patients live in assisted living facilities or mental health center housing, there is ongoing contact and families continue to be a significant source of financial, emotional, and social support (Brekke and Mathiesen, 1999). It is clear that family education and support are becoming increasingly important to facilitate patients’ improvement and to ease caregiver burden. Moreover, FPE has proved to be a major tool for improving patients’ prognosis. It is now acknowledged as one of the major EBPs in the treatment of schizophrenia and other major disorders (Dixon et al., 2001).
FAMILY PSYCHOEDUCATION AS EVIDENCE-BASED PRACTICE In the early 1990s, The Agency for Health Care Policy and Research and the National Institute of Mental Health funded The Schizophrenia Patient Outcomes
6
FAMILY PSYCHOEDUCATION FOR SERIOUS MENTAL ILLNESS
Research Team (PORT) project to develop and disseminate recommendations for the treatment of schizophrenia based on existing scientific evidence. PORT developed 30 recommendations in several categories: pharmacotherapies and electroconvulsive therapy; psychological treatments (individual and group psychotherapies for patients): family treatments; vocational rehabilitation; and service system improvements. Among the family treatments, only FPE was recommended. This intervention was evaluated at the highest level of evidence from a host of research overviews (Lehman and Steinwachs, 1998). The PORT recommendations for family treatments were as follows: Recommendation 24. “Patients who have ongoing contact with their families should be offered a family psychosocial intervention that spans at least nine months and provides a combination of education about the illness, family support, crisis intervention, and problem-solving skills training. Such interventions should also be offered to non-family caregivers . . .”. Recommendation 25. “Family interventions should not be restricted to patients whose families are identified as having high levels of “expressed emotion” (criticism, hostility, over-involvement).. . . Studies have found that these interventions offer substantial benefits to patients and families regardless of the level of expressed emotion. Recommendation 26. “Family therapies based on the premise that family dysfunction is the etiology of the patient’s schizophrenic disorder should not be used. Rationale: Research has failed to substantiate hypothesized causal links between family dysfunction and the etiology of schizophrenia . . . . The presumption that family interaction caused schizophrenia, especially as an alternative to biological risk factors, has led to serious disruption in clinician/family trust without any evidence of therapeutic effectiveness. The repudiation of the theoretical premise of these therapies, the lack of empirical studies, and the strong clinical opinion raising concerns about the potential harm caused by these approaches lead to this recommendation” (Lehman and Steinwachs, 1998, p. 8). As is evidenced in the PORT, although our focus is on educating patients’ families and other caregivers, FPE clearly must be incorporated in a multi-modal approach to treatment. But many researchers, particularly in Europe, view FPE as an essential component. Based on their research findings, Bauml, Frobose, Kraemer, Rentrop, and Pitschel-Walz (2006) state categorically that “Psychoeducation, in the form of an obligatory-exercise program, should be made available to all patients suffering from a schizophrenic disorder and their families” (p. S1). In this brief introduction, I have tried to define the basic concepts used in this book. EBTs are operationally defined in terms of their research criteria and outcomes. EBP refers to the application of these empirically-supported treatment approaches in work with individual clients, including the training of staff.
INTRODUCTION
7
The broader term, EBP, is used throughout this book because FPE covers two practice domains. It integrates family support in the treatment of SMI, and it helps families cope with its disruptive effects. “Serious mental illness” is also defined in terms of diagnosis, severity, and persistence, along with prevalence data from national population-based studies. This chapter then goes on to indicate the scope of families’ involvement with persons with SMI, both in the extent of residential caregiving and the degree of social support. Because of prior institutional policies of distancing patients from family members, de-institutionalization had discharged many patients to caregivers who had little knowledge of how to care for their relatives with mental illness, had unrealistic expectations, and did not know how to cope with symptomatic behaviors. Although the need for caregiver education was immediately apparent, most mental health systems still continued to offer nothing to families in the way of information or skills training. To fill this need, family education programs were largely developed outside of mental health systems, by organizations such as National Alliance on Mental Illness (NAMI) and Mental Health America (MHA). Concomitantly, new treatments, focusing on reducing symptoms and recidivism in patients with schizophrenia, began to be developed. Among these was FPE. The chapter ends with strong recommendations to implement FPE in mental health systems by Patient Outcomes Research Team (PORT) in the United States, and as “obligatory” treatment by European researchers as well. Forthcoming chapters describe various models of family interventions and the historical background that led to FPE as an empirically-supported treatment for persons with major psychiatric disorders.
2 FA M I L Y I N T E RV E N T I O N S IN M A J O R ME N T A L I L L N ESS models and commonalities
Across the years, numerous models have emerged to involve or educate families in the treatment of loved ones with serious mental illness (SMI). As may be seen in Table 2.1, family interventions may vary in format or participants, basic premise, treatment modality, and expected outcomes. The basic premise of course informs the treatment modality and anticipated outcomes. Except for some family therapy approaches that are based on systemic dysfunction, most family interventions are primarily intended to satisfy an empirical need for information and skills that will facilitate illness management. All of these models teach a theoretical model of illness based on diathesis-stress, described more fully in Chapter 4. All aim at improving the relationship and quality of life of both patients and families, with resultant decreases in needs for hospitalization. Family therapy was the first intervention model that addressed family involvement in the treatment of schizophrenia. The first efforts were largely based on changing maladaptive family systems that were assumed to generate and perpetuate psychotic behaviors. The modalities were essential structural or strategic approaches, and the hoped-for outcome was systems change with subsequent symptom elimination. As indicated in Table 2.1, there are still family therapy models for treatment of schizophrenia that are based on a premise of family dysfunction such as the Milan School (Selvini Palozzoli et al., 1989), although many family therapists such as Julian Leff (2005) have renounced the idea of pre-existing family pathology requiring treatment. As Marsh (2001) has pointed out, newer models of family therapy address family problems without necessarily assuming they are directly related to causing or exacerbating mental illness in a loved one. Rather, pre-existing family problems are likely to be exacerbated by illness-related stress. Thus, in addition to education
8
TABLE 2.1 FAMILY THERAPY, CONSULTATION, PSYCHOEDUCATION, EDUCATION, SUPPORT, PARTICIPANTS, MODALITY, PREMISE, AND EXPECTED OUTCOMES
family therapy
Participants Family
Modality Systems, strategic structural change
Premise Family systemic dysfunction
Outcomes Symptom elimination, systemic change
family consultation
Family, patient
Consulting on familydefined problems
Family need for specific expertise
Resolution of family-defined problems
family psychoeducation
Family, with/without patient; single or group format
Education, support, illness management, problem solving
Familial EE, behavior affects Relapse/symptom reduction: patient. outcome; families need lower family burden help for illness management and coping
family education
Multi-family group, led by Education, support, illness professionally trained peers management, satisfying own needs
Families need help for coping, living own lives
Family well-being irrespective of patient outcome
psychoeducational support group
Multi-family group, led by professionals
Group sharing helps coping—advocacy gives mastery over own life and resources for patients
Family/patient well-being and improved, resources for services, research, public education/anti-stigma
family support and advocacy group
Multi-family, led by peers
Education, support, sharing management strategies, advocacy for resources
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FAMILY PSYCHOEDUCATION FOR SERIOUS MENTAL ILLNESS
and support, some family members may benefit from a type of family therapy that is similar to family psychoeducation (FPE). An example is the medical family therapy of McDaniel, Hepworth, and Doherty (1992), designed to assist families facing serious health problems. Like FPE for SMI, medical family therapy focuses on strengthening family caregiving skills, reducing family burden, and enhancing family well-being (Marsh and Lefley, in press). However, as opposed to psychoeducation, none of these models has produced a body of adequate empirical data to indicate positive outcomes for persons with SMI. Family consultation addresses the concerns of many families in dealing with illnessrelated issues, accessing resources, making informed choice about their use of other services, or simply prioritizing their needs. Specific needs may involve making decisions about living arrangements, obtaining federal entitlements, finding resources to deal with concurrent substance abuse, and the like. Bernheim (1994) notes that there are substantive differences between family consultation and a therapeutic model of family interventions. Family members are presumed competent to set a service agenda. “Unlike therapy . . . the family consultant behaves more like an attorney or accountant, laying out the options and helping consultees assess the relative merits and risks of each. . . . The family is not regarded as an unidentified patient” (p. 189). Bernheim further notes that consultants differ from a strictly educational model by offering specific advice and problem-solving assistance. Unlike the formal structure and group format of family education, consultation focuses on immediate needs and agendas. The consultant may also of course refer consultees to clinical services depending on their needs and desires. Pioneer family therapist Lyman Wynne and his colleagues offer a model of family consultation defined as “the process in which a consultee seeks assistance from a consultant in order to identify or clarify a concern or problem and to consider the options available for problem resolution” (Wynne, Weber, and McDaniel, 1986, p.8). As Marsh (2001) points out, the consultant offers expertise, skill, or competence, based on a meta-analytic view that incorporates the multiple contexts of systems involved in resolving the presenting problem. However, the consultee can reject recommendations and retains primary responsibility for action. Consultation may be sufficient for some families, particularly if it is offered at the time of the initial diagnosis and thereafter on an as-needed basis, such as during crises or family transitions. Some excellent independently-funded consultative services have included those offered by the Training, Education, & Consultation (TEC) Family Center in Philadelphia (see Meisel and Mannion, 1989) and by Intensive Family Support Services in New Jersey (described in McFarlane et al., 2002). At the TEC Family Center, Mannion (2000) has developed a manual for including family consultation as a routine offering of mental health facilities. Solomon et al. (2002) note that this intervention is especially attractive to families whose relatives reject mental health services.
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Family psychoeducation is one of the major evidence-based treatments (EBTs) for major psychiatric disorders (Dixon et al., 2001), particularly schizophrenia (Kuipers, Birchwood, and McCreadie, R.G., 2002) and bipolar disorder (Miklowitz et al., 2000). The strong empirical evidence for the clinical, social, family, and economic benefits of FPE will be further elucidated in the section on research findings. There are common core elements in all FPE. Included are support for family caregivers and state-of-the-art information about the illness, its presumed etiology, and its treatments. There is information on various medications and their expected effects and side effects. Illness-management techniques include coping with symptomatic behaviors, assessing prodromal cues of decompensation, and crisis management. Families are taught communication skills and techniques for problem solving. Specific components of various approaches are given in the section on Model Programs in Chapter 5. Pitschel-Walz et al. (2001) have defined a variety of interventions as psychoeducation. Models with research findings include family therapy in single-family or multi-family settings, psychoeducational relatives’ groups, educational lectures for relatives, counseling groups for relatives, and group therapy for relatives. “Most of these interventions can be subsumed under the category of ‘psychoeducation’ or at least contain psychoeducation as an essential component. ‘Psychoeducation is the most common collective designation for an intervention that combines the imparting of information with therapeutic elements, and the term is internationally acknowledged”(pp. 73–74). This definition, however, conflates briefer models and those oriented toward family well-being alone with the preferred minimal nine-month (McFarlane, 2002) intensive models that qualify FPE as a legitimate evidence-based practice (EBP). Family education contains essentially the same didactic components as family FPE. However, it differs in important respects. Education is usually offered to families in groups, typically without the patient present, and rarely involves individual family assessments. Although several family education models have now yielded outcome data, family education is not research-oriented. There are no hypotheses regarding effects on patients. The sessions are not always clinically-based or professionally led. Many family education models solicit and incorporate family input in their design. Sometimes, they offer continuity after the sessions end, in terms of support groups or involvement in political advocacy groups. Family education is designed to help key relatives or caregivers understand and cope with the illness. Solomon (1996) has differentiated between family psychoeducation and family education in terms of anticipated outcomes, distinguishing symptom and relapse reduction from reduction of families’ distress and burden. Almost all the controlled studies have focused on patient outcome. However, shorter-term manualized programs have also been developed for family groups,
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with attendant research on participants’ knowledge and well-being, without regard to other factors. A hoped-for result is enhancement of the well-being of the total family, including of course the patient. Family education is usually much briefer in duration than evidence-based family psychoeducation. Finally, although much family education has been offered by professionals, it is also offered by well-trained family members using manualized materials with similar content. Research data on some of these efforts are shown in Chapter 9 on family education. The Psychoeducational Support Group is an open-ended continuous service offered by a clinical facility to relatives and friends of adults with serious and persistent mental illness. This is a free service for families and friends of patients and is often open to the general public. Time-limited family interventions, empirically justified in their own right, nevertheless cannot address unexpected problems that arise with cyclical psychiatric disorders. The open-ended model offers education, support, illness management, and problem-solving on an ad hoc basis, specific to current needs of individual cases, and tailored to lifespan and illness trajectory issues. In addition to didactics and training in behavior management, the psychoeducational support group offers shared experiences and coping strategies, resource information, social networking, and cross-parenting in terms of concrete aid for members’ relatives. Members also offer living proofs of improvement and recovery. Participation serves both long-term and crisis needs and is not time-limited. Although there are anecdotal accounts of effectiveness in improving patients’ recovery (e.g., Lefley, 2007), the model has not been subjected to any systematic research. Family Support and Advocacy Groups are ongoing support groups such as those offered by NAMI and Mental Health America (MHA). These are typically led by family members. In many ways the groups fulfill the benefits of shared experiences ascribed by McFarlane (2002) to the multi-family psychoeducational model. Family groups normalize reactions of fear, guilt, and grieving. They offer resource information, exchange of coping strategies, a social network for isolated families, enhanced problem-solving capability, involvement in advocacy activities, and positive success stories with renewed hope for recovery. Advocacy organizations such as NAMI and MHA, focusing on favorable legislation, funding for research and services, and stigma reduction, offer an action medium for families who wish to go beyond mutual support and improve the systems that impact their lives.
VARIATIONS AND MERGED MODELS OF FAMILY INTERVENTIONS Except for structured or manualized models with specific time frames, family interventions may vary widely in format and content. Content has been adapted for specific ethnic or cultural groups (Lefley and Johnson, 2002) and for immigrant populations. Some examples of these are given in Chapter 8. Other variations
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include: patient present or absent; single family versus multi-family; time-limited versus ongoing; diagnosis-specific versus severe mental illness; first episode versus long-term; mental illness with concurrent substance abuse, or mentally ill criminal offenders. Some interventions are specifically designed for spouses (Mannion, Mueser, and Solomon, 1994) or other family members. In some models, FPE may be primary, but it is merged with and incorporates family therapy techniques (Marsh, 2001; Leff, 2005). McFarlane (1997) has highlighted the benefits of merging multifamily group psychoeducation with another EBP, assertive community treatment. FPE addressed to the needs of specific groups are discussed in Chapter 7, following presentation of some seminal programs and their research findings. To summarize, in this chapter, we have discussed various models of family interventions which at one time or another have been utilized, or recommended, for families of persons with SMI. Family therapy, which is based on a premise of systemic dysfunction has not proved to be effective, but newer models of family therapy, designed to assist families in coping with various types of illness, may be more beneficial. Family consultation is limited to helping families address specific concerns, but there is little research on its effectiveness. FPE, an empirically derived treatment, has core elements of support for families, information about the illness and treatment, and illness-management techniques including communication skills and problem-solving strategies. Most of this book is devoted to the copious research base on this model’s effectiveness. In contrast to FPE, which focuses on patient outcome, family education is designed to help key relatives understand and cope with the illness and to reduce family burden, regardless of benefits to the patient. In Chapter 9, various models are described with data on their effects. We have added two other types of interventions, both multi-family models. The psychoeducational support group may be offered by some agencies as an open-ended ongoing supportive resource for patients’ families or for the general public, with families participating according to need. There are no data on this model as yet. Finally, there are family support groups, which are also open ended and continuous, but are usually extensions of advocacy groups such as NAMI. Some supportive data are available on their effects (Mannion, Meisel, Solomon, and Draine, 1996). With the exception of family consultation, which is limited to answering specific needs of individual families, and to the family therapy model that primarily focuses on changing the family system, all of these interventions share a common theme. They offer families support and an understanding of the needs of caregivers. The educational materials focus on the major mental illnesses and their treatments, and illness management techniques that include communication skills and problem-solving strategies. Families may learn about entitlement programs or helpful area resources, including psychosocial programs and consumer groups. Most interventions also focus on common psychological issues, alleviating
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unjustified guilt and easing family burden. They typically emphasize that caregivers need to guard their own psychological and physical well-being and have the right to live their own lives free of worry and pain. As research, however, only family psychoeducation fully satisfies the EBP criteria established in the Introduction section, and its supportive findings in various sites throughout the world are covered in forthcoming chapters. In Chapter 9, we also learn about family education, which targets families rather than patients in terms of outcome variables. Administered by trained family members, rather than by professionals, two family education programs fulfill almost all the criteria, including replication by the same researchers. As yet, there has been no attempt to replicate them by different investigative teams.
3 F A M I L I E S , S C H I Z O P H RE N IA, AND OT HE R MA J O R D I S O RD ER S historical background
Family psychoeducation (FPE) is a long-overdue, well-accepted therapeutic modality that finally provides families with what they have long been requesting— information, support, and illness-management techniques. These requests seem so eminently reasonable that one wonders why it took so many years for mental health systems to comply. This chapter presents some of the background that led to FPE, a history of theoretical constructs and their correlative therapies, some of which were damaging rather than helpful to patients and families. With de-institutionalization and community-based treatment, families have become major caregivers and support systems for their relatives with severe mental illness. So the need for clinical understanding of the caregiving experience is increasingly apparent. FPE is a welcome and much-needed antidote to an era of now-discredited theories about schizophrenia. Some attributed etiology to destructive patterns of parenting or mystifying communication styles. Others viewed symptoms as useful in maintaining a spurious homeostasis in dysfunctional family systems. All the theories tended to adversely affect the interactions of mental health professionals, and mental health staff, with the family members of their patients. In the psychoanalytic tradition, almost all serious psychiatric disorders were attributed to bad mothering practices in infancy or early childhood. FrommReichmann’s (1948) concept of “schizophrenogenic mother,” a woman with the paradoxical features of being cold and rejecting and also overprotective and fostering dependence, was widely accepted, although, as noted by family therapist Froma Walsh (1988), the concept was never consistently defined or measured. The basic assumption was that maternal traits and character deficiencies produced destructive patterns of mothering responsible for the child’s disorder.
15
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Discussing concepts of the pathogenesis of schizophrenia, McGlashan (1989) states that “Virtually all psychoanalytic theorists postulate an experiential disharmony between the mother and her preschizophrenic infant. . . . The purported central pathogenic elements are dysphoric experiences which become internalized as aberrant psychological structures. Explicitly or implicitly, the psychogenic models of schizophrenia regard these experiences as sufficient to explain most if not all cases of the syndrome” (p. 751). McGlashan further suggests that all theorists implicated the mother in the arrested development that would generate psychosis. To Harry Stack Sullivan, for example, the pathogenesis of schizophrenia “begins with a mother who is more anxious than normal and who imparts this tension to her child as excessive not-me experiences. The child’s self-system, developing around the time of speech acquisition, overcompensates with excessive dissociation and warps its own further development” (McGlashan, 1989, p. 748). In recent years, psychoanalysts have been willing to incorporate current research findings on the biological basis of many of the psychotic or developmental disorders previously attributed to poor parenting. Glen Gabbard, a leading psychoanalyst, admits that “To be sure, the field of psychoanalysis has made a series of historical errors. Among these were the concepts of the ‘schizophrenogenic mother’ in the case of schizophrenia and the ‘refrigerator mother’ in the case of early infantile autism. These are egregious examples of the privileging of psychoanalytic developmental theory over empirical research” (Gabbard, 2005, p. 741). Gabbard’s concern, however, is with psychoanalytic “arrogance and complacency” vis a vis scientific research. There seems to be little concern in the psychoanalytic literature with the toxic effects of these theories on suffering parents trying to cope with extremely difficult and incomprehensible behaviors and receiving little help from those who treat their children.
HOSTILITY AND DOUBLE BINDS FROM MENTAL HEALTH PROFESSIONALS For many years, families felt abandoned and misguided by mental health professionals who not only failed to cure their children, but often treated them with ill-concealed hostility and contempt. Despite the caveats against demonstrating counter-transferential dislike of patients, no such caveats exist with respect to families. It is very difficult to be understanding or kind to parents who are presumed to have wreaked such terrible havoc on the children they claim to love. Johnson (2000) notes, “In no other area of treatment for illness have families of the ill been such objects of contempt and scathing criticism by professionals as have the families of the mentally ill” (pp. 55–56). He asks us to consider the descriptions in the literature. A study of families of first-time patients admitted to a psychiatric hospital offers the following typologies: assertives, altercasters,
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authoritarians, stoics, poltroons, pacifists, stumblers, and do-nothings” (Spitzer et al., 1982). Another study offers just three categories: over-involved, underinvolved, and pseudo-involved (Krajewski and Harbin, 1982). Schuman (1983) divided families of hospitalized schizophrenic patients into just two categories: the “schizophrenic family” in which all members function at a very low level, and “the family with a schizophrenic member,” in which “there may be high levels of social or vocational achievement.; on an emotional level, however, significant members possess low levels of self,. They function with what Bowen has described as a ‘pseudo-self’ rather than solid self” (p. 43). Reynolds and Farberow (1981) state: “In addition to genetic factors there seem to be at least five characteristics attributable to schizophrenic families: (1) excessively closed family systems; (2) shared family myths or delusions; (3) paralogic modes of thinking in all the family members; (4) lack of individuation and self-identity of members from the family ‘ego mass’. . .; and (5) intense, pathological symbiotic attachments of the child to parents and of parents to grandparents” (p. 126). Liem (1980) pointed out that these types of family descriptions have been analogous to a trait theory perspective, generalizing characteristics that may pertain for a small sub-group to all families of persons with schizophrenia. They seem preposterous when one considers that schizophrenia is found throughout the world in numerous family structures, many of whom are described as empathic, patient, calm, and respectful (Leff and Vaughn, 1985). Nevertheless, these ideas have permeated the field, generating interactions with families that range from guarded to hostile and exclusionary. The early family-therapy approaches to schizophrenia were based on assumptions that symptoms had a functional role in the economy of family systems, and that they would disappear with effective therapy. This essential stance was maintained in the Milan school, which saw schizophrenia as part of the family game (Selvini Palazzoli, Cirillo, Selvini, and Sorrentino, 1989). Shaw (1987) pointed out that strategic, systemic, or structural family therapies have not proved beneficial because they are based on a replacement paradigm, which conflicts with the realties of schizophrenia as a legitimate illness and a stress on the family. He notes that families respond much better to psychoeducational approaches, which are based on a repair paradigm. In an effort to demonstrate efficacy of an intervention with no prior research base, a recent Milan School study compared 20 patients treated with systemic family therapy with a control sample of 20 in routine treatment. They found that at one year, 15% of the treated group had relapsed versus 65% in the control group (p<.03). However, this was not sustained. No significant differences were found the second year of follow-up (Bressi, Manenti, Frongia, Porcellanam, and Invernizzi, 2008). Maranhao (1984) has described double messages conveyed by family therapists who use subterfuge while stressing authenticity. McFarlane and Beels (1983) point
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out: “If one accepts that double-bind interactions can create distorted, even irrational, communication, then many ‘therapeutic’ situations can be seen as pathogenic. For instance, covert blame of the family by professionals is often combined with overt attempts to help them, while the contradiction is denied” (p. 316). Numerous reviews of theories both of family etiology and family deviance have noted that the research has either failed to confirm them, or failed to meet basic methodological criteria for demonstrating their validity (Parker, 1982; McFarlane and Beels, 1983; Howells and Guirguis, 1985; McFarlane and Lukens, 1994). Nevertheless, notions of family pathology, and the need to separate families and patients, have permeated the field for many years. My years of working with families of persons with schizophrenia and other major psychiatric disorders, and hearing their experiences, led to the following observations: “For the most part, inconsistent and often contradictory patterns of help and information will persist throughout the course of the illness. In one type of situation, there is tacit rejection of any communication with the family, except as respondents to questionnaires on the patient’s history. If the family attempts to learn more, the common patterns of response are deflection of questions, reluctance to provide diagnosis or illness information on the grounds of labeling, protestations of confidentiality, and implications that the family’s concern is pathological or self-serving. In other situations, families may be catapulted into therapy, regardless of their desires, with the implicit message that the patient’s illness is symptomatic of a family problem; but their requests for information and behavior-management training will continue to be ignored” (Lefley, 1987, p. 9).
SOURCES OF STRESS AND THE FAMILY BURDEN RESEARCH In previous writings I have noted several major sources of family stress in coping with serious psychiatric disorders. These may be roughly categorized as situational, societal, and, as indicated in the previous section, in too many cases iatrogenic (Lefley, 2000; Marsh and Lefley, in press). Situational stressors involve both objective and subjective family burden. Objective burden refers to families’ investments of time and energy in dealing with the mental illness of a relative. Subjective burden is the type and degree of psychological distress experienced by family members.
SITUATIONAL STRESSORS Service system deficits—difficulties in accessing appropriate treatment—are frequent aspects of objective burden. These may be due to lack of funding for
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adequate crisis or hospital beds, or to legal constraints that often make it difficult to hospitalize a person who is psychotic and disruptive, but not imminently dangerous to self or others. Families coming to support groups frequently complain of the agony of finally deciding to hospitalize someone after a destructive psychotic episode, only to find access denied because the patient has briefly re-compensated sufficiently to appear rational. Some families have had such frequent contact with their local police, who arrive only to find the patients have calmed down, that they are advised to provoke the patient into behaviors that can enable the police to take him to the Crisis ER. Families face agonizing decisions when they must call police or obtain an ex parte order for involuntary evaluation and treatment. They must balance their needs for peace and stability against infringing on the civil rights and personal autonomy of someone they love. They may encounter a magistrate’s decision to reject involuntary treatment, or premature discharge of patients from crisis units, when they have been briefly stabilized but are still symptomatic. All too often, the patient will be angry at the family members and react with hostility after discharge, punishing them with refusal to take prescribed medications. Extrusion from community programs because of disruptive behaviors, problems with third-party reimbursements, poor medical oversight, or generally inadequate community support systems are all highly stressful for families. Some families suffer from incarceration of their loved ones in the criminal justice system because of minor misdemeanors, because there are no local jail diversion programs for people with mental illness. And some families have even seen their loved ones hurt or even killed, because they menaced a police officer, untrained in dealing with mental illness. Subjective burden includes grieving for the loss of the pre-morbid personality, perhaps once bright with promise, and the loss of the person he or she might have become. There is also empathic pain for loved ones who may mourn their own lost aspirations and impoverished lives. Families may have to contend with hostile misjudgments from neighbors or relatives, negative psychological effects on siblings and young children, social isolation, and economic burdens of the illness. In many cases, family members may have to cope with agitated or violent behaviors, threats of violence or suicide, and most commonly, a patient’s rejection of treatment. In schizophrenia particularly, clinicians speak of “anosognosia,” a neurologically-based inability to understand that one’s behavior is aberrant, convincing people with mental disorders that there is nothing wrong with them and that others are falsely accusing them of being ill (Amador, 2000). Keeping Care Complete is the title of an international study of the experiences and opinions of 982 family caregivers of individuals with schizophrenia, schizoaffective disorder, and bipolar disorder (World Federation for Mental Health, 2007). Most had been ill for more than six years, and almost half (48%) for more than 10 years.
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The research was conducted in Australia, Canada, France, Germany, Italy, Spain, the United Kingdom, and the United States. Across countries, 91% of the respondents stated that effective medication to control symptoms was a top priority. There were major concerns about treatment disruption and relapse. A large majority of respondents (85%) reported that their relative relapsed. Among them 69% were hospitalized, 22% tried to commit suicide, and 20% were imprisoned. Some of the effects of relapse on the caregivers themselves were as follows: Substantially disrupted caregivers’ lives Caregivers more fearful of relative’s well-being Caregivers’ own well-being greatly affected Caregivers’ mental and physical health worsened Caregivers’ financial situation worsened
61% 56% 70% 54% 26%
Effective treatment led to positive outcomes such as re-engaging with family and friends, performing tasks more independently, and learning new skills, holding a job or volunteer position. More than three-quarters (76%) of the caregivers wanted doctors to focus on long-term care rather than managing crisis situations, with the goal of achieving long-term stability (Stephens, 2007; World Federation for Mental Health, 2007).
SOCIETAL STRESSORS Societal stressors include the still prevailing stigma of mental illness, generalization of stigma to relatives, negative expectancies of recovery, underfunding of research and services, and general public neglect of a devalued sub-group. A review of studies of generalization of stigma to relatives found that between a quarter and half of family members think they should hide their relationship to avoid bringing shame on the family, and between 20% and 30% of family members reported low self-esteem because they have a relative with mental illness (Larson and Corrigan, 2008). Lack of parity in mental health care vis a vis general medical conditions has been a persistent stressor for families and patients with private medical insurance. National Alliance on Mental Illness (NAMI) and Mental Health America (MHA) have been working for many years to obtain legislation that would remedy these discriminatory practices. Leading legislators concerned with mental illness, such as Peter Domenici and Ted and Patrick Kennedy, have moved the issue forward and parity seems imminent, but it has taken enormous investments of energy and many years for the work of advocates to bear fruit. Among societal stressors, also, is general neglect of the mentally ill population and consistent underfunding of research and services in the mental health system. De-institutionalization has closed many state hospitals but the savings have too rarely been allotted to commensurate community-based services. Perhaps the
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greatest societal stressor is from the popular media, which consistently associate mental illness with violence and murder. Very few newspaper accounts indicate that people with mental illness are far more often victims than perpetrators (Teplin et al., 2005). Incarceration of persons with mental illness in the criminal justice system is an outrage of our times, and many families fear that an acting-out relative may end up in jail. Inmates who are mentally ill are at the mercy of predators, both for violent assault and sexual victimization, and rarely receive adequate medical or mental health treatment (Wolff, Blitz, and Shi, 2007). These prospects are a constant source of anxiety to families. Society is still unclear about the distinction between madness and badness and frequently conflates the two conditions. In many state legislatures, and in many courthouses, there are still existing conflicts about the Not Guilty By Reason of Insanity (NGRI) verdict, with the reality of mental illness still in dispute.
IATROGENIC STRESSORS In the previous section on History, various theories were discussed that implicated families in the pathogenesis of major mental disorders. Under the section on Hostility and Double Binds from Mental Health Professionals, we find numerous quotations from the psychiatric literature that described families in highly pejorative terms. Even without strictures regarding confidentiality, how then could mental health providers feel cooperative or willing to share information with people who had created such devastating illnesses? For many years, families felt abandoned and misguided by mental health professionals who not only failed to cure their loved ones, but often treated them with ill-concealed hostility and contempt. Many families who come to support groups have been dealing with mental illness for more than 30 or 40 years. They have lived through this era of family-blaming theories, and some still volubly complain of their treatment by mental health professionals. Iatrogenic stressors are happily diminishing but may still involve attributions of parental causation and ignorance of family burden. Some clinical educators unfortunately still teach theories of family pathogenesis. Reported stressors from clinicians have included failure to provide information and support to caregivers, misuse of confidentiality to deny needed information, and attitudinal rejection. As some research has demonstrated, people with means to purchase the best services that the field had to offer were in no way protected from the fallout of incorrect theory. Many families of persons with schizophrenia or major affective disorders invested their hopes in years of highly expensive treatment in leading psychiatric centers that focused on intensive psychodynamic psychotherapies. Yet, follow-up studies showed few improvements in patients with major psychotic disorders (McGlashan, 1984).
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THE RESEARCH ON FAMILY BURDEN According to major researchers Kuipers and Bebbington (2005), family caregivers of persons with mental illness, usually termed “carers” outside of the United States, have been the topic of research for more than 50 years. These authors searched the literature for “carer” and “burden” and found almost 500 entries during a three-year period alone. Schene, van Wijngaarden, and Koeter (1998) have probably done the most extensive work in studying family burden. Their family burden instrument, the Involuntary Evaluation Questionnaire (IEQ), has been applied in numerous European countries. They look at items such as household characteristics, caregiving characteristics, help-seeking, coping, and distress, as well as patients’ characteristics, including the intensity and duration of illness. First applied with 480 family members of patients with schizophrenia in the Netherlands, the four caregiving domains found were tension, supervision, worrying, and urging. “These domains were strongly related to the patient’s symptomatology, contact between the relative and the patient’s mental health professional, and the number of hours of mutual contact between the patient and the relative . . . Our findings suggest that caregiving tasks and problems may be diminished and related distress lowered by reducing the patient’s symptomatology, increasing relatives’ coping capacities, and decreasing the number of contact hours” (p. 609). In a further study in several European countries, with samples of 680 family members of relatives with psychosis, and 260 with major affective disorder, worry, urging, and tension emerged as major consecutive factors. However, differences were found in the various countries. The highest burden was reported in Verona, Italy, and the lowest in Amsterdam and Copenhagen. Santander, Spain, and London were in an intermediate position. The authors were mindful of cultural differences in the United States, especially between African-American caregivers, who reported significantly less support from their family networks, and white caregivers who were significantly more depressed (Biegel, Milligan, and Putnam, 1991). However, even after correcting for percentage of ethnic minorities, caregivers’ coping, and living situation, the difference between sites remained. The researchers offered several possible explanations but essentially felt this remained an area for further investigation (van Wijngaarden, Schene, and Koeter, 2002). A review of 28 studies of family burden in major mental illness found that primary objective burdens involved money management, providing transportation, continuous supervision, financial assistance, and limitations on caregivers’ own activities. Primary subjective burdens related to safety and potential violence of the sick relative, excessive demands and dependency, symptomatic and embarrassing behaviors, and family conflicts (Baronet, 1999).
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As Ostman (2000) points out, “Researchers very early found that the impact of mental illness was experienced across a broad spectrum of family life: work, leisure, income, parenting, family health, relationship with extended family, friends, and neighbors” (p. 7). Certainly part of objective burden is the inordinate amount of time caregivers often have to spend in taking time off from work, being late to work, or even having to resign from a job because of extensive family demands. Income may be diminished not only because of job loss but because of the financial dependency of the patient. There may be difficulties with obtaining sufficient insurance coverage (hence the current emphasis on mental health parity legislation) or excessive out-of-pocket costs including large co-payments for treatment. Impaired health, both physical and mental, is a common correlate of family burden (Ostman, 2000). Johnson (1994) analyzed the family burden literature, reviewing findings of nine surveys and 12 intervention studies to determine whether and how burden could be relieved. He concluded that first, there were no differences between schizophrenia and affective disorders in the levels of burden experienced, and second, the degree of family burden seemed related to the level of dysfunction of the relative with mental illness. Managing disturbed behaviors is a primary issue in FPE and support groups. Families may have to contend with mood swings and unpredictability, socially offensive or embarrassing situations in public places, conflicts over money, or abusive behaviors. Conflicts arise regarding poor personal hygiene, excessive smoking, damage to household property, or sleeping patterns that reverse day and night and keep the family awake. As indicated above, patients’ rejection of medication is a common area of contention, particularly when there is a known pattern of relapse. Negative symptoms of amotivation or anhedonia, delayed response, or refusal to interact are particularly troublesome for families tying to sustain relationship with a loved one. These behaviors are characteristic of various psychiatric disorders, but they are not universal and their effects within individual families are a function of many factors. One of these is simply the passage of time. A recent three-year Italian study using the IEQ found that at baseline, 51% of caregivers experienced significant emotional distress. The severity of family burden was associated with higher levels of patients’ psychopathology and number of needs, and lower levels of their quality of life and global functioning scores. However, after treatment in a community mental health service, at three-year follow-up the only significant predictor of caregivers’ burden was the baseline level of burden itself (Parabiaghi et al., 2007). Some commentators have rejected the notion that family burden is a common correlate or sequela of caring for someone with mental illness. For example, Szmukler (1996) has suggested rejecting the term “burden,” which is viewed
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as pejorative. Although caregiving burden is a very real experience for many families, what is perceived as truly onerous is clearly subject to the assessment of individual family caregivers. Instead, he conceptualizes caregiving demands within a theoretical framework of stress-appraisal-coping, with appraisal as the key variable. He suggests operationalizing the dimensions of caregiving, since specific dimensions may have positive as well as negative value. Szmukler, Herrman et al. (1996) developed The Experience of Caregiving Inventory as an instrument that determines how the “burdens” of caregiving may be appraised and managed by individual families. Concordant with other findings (e.g., Schene et al., 1998) they found that the experience of caregiving is multi-dimensional, but that the “mastery” factor is primary. Feeling in control of a situation appears to reflect a global measure of coping. The Caregiving Inventory was an assessment of the degree to which caregivers’ perceived stress and coping styles might predict their subjective burden, their psychological well-being or morbidity, regardless of the magnitude of objective burden. However, family members’ response to mental illness is subject to the trait-state dilemma. Perceptual and coping styles may be stable or may vary according to situational factors. Mental illnesses are of course variable in course and often cyclical. Periods of stability and normal functioning may alternate with periods of profound clinical depression, hypomanic or manic behavior, or actual psychotic episodes. A caregiver’s trait of cheerful acceptance, or a coping style that values the helping role, may generate denial of burden during difficult periods and caregiving gratification during peaceful periods. Several recent studies have focused on caregiving gratifications, such as a patient’s companionship and contributions to household tasks. In a study of 725 patients with serious mental illness (SMI) in rural Wisconsin, Greenberg, Greeley, and Benedict (1994) found that a quarter not only lived with their families, but offered them substantial help. Between 50% and 80% helped with household chores, shopping, providing companionship, listening to problems, and sharing news. Social support is a critical variable in positive perceptions of caregiving (Chen and Greenberg, 2004), and investigators of family gratification have asked the field to concentrate on prosocial family processes, on families as supportive resources rather than in need of “fixing” (Greenberg, Knudsen, and Aschbrenner, 2006). In an earlier study in Australia, however, caregiving gratification was contingent on whether or not the patient was symptomatic or relatively well. Almost one-third of the caregivers reported no gratifications at all and this figure rose to 96% when the patient was ill (Winefield and Harvey, 1994). In sum, there seems to be a strong association between gratification and patients’ level of psychopathology and level of functioning. Gratification is particularly difficult if the person manifests disruptive or aggressive behaviors, or negative symptoms that distance that individual from meaningful interactions
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with others. Psychoeducational training is one avenue toward giving families the tools to enhance functioning and to create more satisfactory relationships with loved ones.
THE EXPRESSED EMOTION RESEARCH: THE BEGINNING OF CHANGE Paradoxically, it was the expressed emotion (EE) research, which again attributed maladaptive patient behaviors to family interactions, that ushered in the era of FPE. What was different was that EE was viewed not as an etiological agent, nor as evidence of a malfunctioning family system, but as an environmental stressor that could be changed by education. Expressed emotion (EE) is an empirically-derived construct that has been extensively explored as a characteristic of family climate and its effects on the course of psychiatric illness. EE levels are typically derived from comments about the patient made by at least one family member. These comments are scored on an instrument, most notably the Camberwell Family Interview (CFI), first administered in the United Kingdom. There are five relevant scales on the CFI: critical comments, indicating unambiguous dislike or disapproval; hostility expressed toward the person rather than the behavior; emotional over-involvement, which is exaggerated or self-sacrificing or overprotective concern; and warmth based on sympathy, affection, and empathy (Leff and Vaughn, 1985). In most studies, a relative is categorized as high-EE if he or she makes six or more critical remarks, expresses any hostility, or is rated three or more on the over-involvement scale (Leff, 1989). Families below these cut-off points are characterized as low-EE. Numerous overviews of the research confirm that high EE in a family member is predictive of a patient’s greater tendency to relapse (see Lefley, 1992). For many clinicians, high EE has been viewed in trait terms, an aspect of particular personalities. An example is a demanding father disappointed in his son, unwilling to believe that he is incapable of controlling positive symptoms, and attributing negative symptoms to willfulness. Such traits would be difficult to change. Barrowclough and Hooley (2003) found that attributions of controllability of symptoms distinguished high-EE from low-EE relatives. However, Leff (1989) has described cases of relatives who spontaneously changed from high EE to a stable low-EE state, and Falloon (1988) noted that critical comments from a high-EE relative generally decreased after the patient’s recovery from an acute episode. Weisman, Duarte, Koneru, and Wasserman (2006) have noted that the relationship between familial EE and prognosis has been demonstrated in over 40 countries. However, the data also show that families from traditional cultures (e.g., Asians and Hispanics) tend to manifest fewer high-EE responses as compared with British and Anglo-American families. Weisman and her colleagues found that Anglos were three times more likely to be rated high-EE on the CFI, and five times more likely when
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assessed on a five-minute speech sample. High EE levels may also be triggered by different behaviors of patients. In a recent review of the literature, Kymalainen and Weisman de Mamani (2008) pointed out that among relatives of white-American patients with schizophrenia, high EE was associated with high levels of odd thinking and symptom relapses, but this was not the case for African-American families. The data suggest that high EE not only varies with culture, but is fairly mutable with proper education. Moreover, reduction in high EE may remain stable over time. For example, a follow-up of a 12-month cognitive–behavioral family intervention in Spain found that EE not only diminished following the intervention, but remained at the same level five years after it ended (Masanet et al., 2007). Working with high-EE families has been the mainstay of FPE at the London Institute of Psychiatry, and this treatment approach has persisted across a range of interventions, regardless of family relationship or diagnostic category. For example, in conducting a randomized controlled trial of antidepressants versus couple therapy to treat depression, selection of subjects was based on the criterion that the partner had to make more than one critical comment. Also, the therapists attempted to design specific interventions aimed at directly reducing criticism by a partner. “However, the techniques used seemed to have little effect on the patient’s depressive symptoms and were therefore not included in the final version of the protocol,” (Leff, Vearnals, et al., 2000). In providing a guide for family work for schizophrenia, Kuipers, Leff, and Lam (2002) stipulated that in their research and clinical work, they selected families in which at least one member was rated as high-EE. Their premise was, logically, that this was an efficient use of scarce resources since that these were the families that needed them most. Their studies indicated that “for patients living with high-EE relatives, maintenance neuroleptic drugs and reduced social contact with relatives proved to be associated with significantly lower relapse rates (Leff, 1986, p. 102). However, Leff (1986) had also cautioned that critical, hostile, and emotionally over-involved attitudes were not confined to the relatives of schizophrenic patients. He pointed out that high EE has also been found in spouses of depressed patients, husbands of obese women, and parents of anorexic patients and is associated with poor outcomes. Since that time, high EE has been identified as a characteristic that interferes with recovery from a multitude of conditions, mental and physical, and that it is scarcely limited to families. It is also found among case managers, residential staff, and clinicians. Barrowclough (2005) pointed out that “there is accumulating evidence that high-EE responses in professionals are associated with negative outcomes” (p.7). She cites research on case managers and also her own research on staff–patient relationships in an inpatient facility, where many staff held the same volitional beliefs as high-EE family members. Patients were sensitive to staff’s feelings about them, and the more negatively perceived patients were significantly more like to manifest behavioral disturbances.
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The EE concept has also been applied in family interventions with children with bipolar disorder, on the premise that these children would respond with even greater volatility to a stressful environment. Fristad, Gavazzi, and MackinawKoons (2003), for example, acknowledging that there is no existing literature on EE rates in families of children with bipolar disorder, nevertheless maintain that reducing high EE in these families has the potential to significantly reduce symptom severity. Yet, it is not clear how much emphasis should be placed on EE if family members do not demonstrate hostile criticism or emotional over-involvement. It has been pointed out in various commentaries that the needs of low-EE families should not be ignored (Lefley, 1992; Fadden 1998). As FPE was extended in different milieux, and as briefer family education models were opened to many thousands of families, the selection of participants based on EE levels became moot. To sum up, this chapter has presented the historical background that led to the development of FPE. Theories of family culpability in the development of schizophrenia, and other major psychiatric disorders as well, emerged from both a psychoanalytic model of etiology and the premises of early family therapies. Numerous examples from the literature indicate the extent to which clinicians have been trained in these models, the disparagement of family members, and the subsequent strained relations between families and the practitioners who treated their loved ones. Clinicians’ reluctance to communicate with families about their relative’s illness, together with this distancing treatment, are viewed as one source of family stress. Major sources of stress for families coping with serious disorders are categorized as situational, societal, and iatrogenic. The literature on family burden deals primarily with the situational stress of living with serious psychiatric disorders. Objective family burden refers to investments of time and energy in caregiving and coping with the illness. Subjective burden involves personal appraisal of the demands of caregiving and the psychological distress and grieving engendered by the suffering of a loved one. Societal stressors include stigma, which affects both patient and families, and negative societal attitudes that result in underfunding of services, media-based association of mental illness with violence, and re-institutionalization of patients in the criminal justice system. Iatrogenic stressors, although happily diminishing, may still involve attributions of family causation, ignorance of family burden, and refusal to give information to caregivers or involve them in treatment planning. The research on family burden is presented. The large body of research on EE is then discussed as the beginning of change in mental health systems, ultimately leading to the development of FPE. High EE was viewed not as an etiological agent, but as an environmental stressor, based on ignorance that could be changed by education. Although FPE initially focused on high-EE families, many investigators realized that people of all EE levels need educating, and the importance of curtailing hostile criticism or emotional over-involvement became just one of many issues discussed in the didactic training.
4 T HE ORE T I C A L P RE MI S E S AND R E S E A RC H O V E RV I E WS the evidence for family psychoeducation
THEORETICAL PREMISES OF FAMILY PSYCHOEDUCATION AND FAMILY EDUCATION When we speak of theoretical premises, there are two bodies of theory to entertain. One relates to basic theories of the etiology and maintenance of major psychiatric disorders, the other to family functioning. Today, both of these areas of thought rest on the premise of behavioral response to stress. Hatfield and Lefley (1987) have written widely of families’ response to a member’s mental illness as an ongoing stressor evoking coping and adaptation responses. The experience of mental illness itself evokes a similar theoretical premise of individuals coping with, adapting to, and surviving a profoundly challenging life stressor (Hatfield and Lefley, 1993). A clear theoretical premise underlies all models of family psychoeducation (FPE). In contrast to previous theories of schizophrenia and major affective disorders, which focused on child-rearing or dysfunctional family systems, psychoeducational interventions are based on a presumption of diathesis-stress. The underlying premise is that certain biological deficits make an affected individual overreact to environmental stimuli that are experienced as stressful, and this may generate a psychotic break or relapse (Falloon, Boyd, and McGill, 1984; Anderson, Reiss and Hogarty, 1986; Kuipers, Leff, and Lam, 2002; McFarlane, 2002, et al.). An extensive body of research has empirically validated this theoretical premise. It should be noted that although stress theory is the basis of FPE, many other theoretical tools have been applied in the development of interventions. Behavior theory, social learning theory, and cognitive theory have been utilized to a considerable extent in various models of FPE. These are indicated in Table 5.1, in the following chapter.
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PSYCHOBIOLOGICAL RESPONSE TO STRESS Stress is commonly considered a stimulus, an initial triggering event, external to the organism. However, the father of stress theory, Hans Selye (1976) proposed that the external stimulus is actually a stressor, whereas stress is the responsive physiological disequilibrium of the organism. This internal state of stress then becomes an activator of attempts to resolve the disequilibrium. Presumptively, psychotic behaviors and other positive symptoms are maladaptive attempts to attain this resolution. Hyperarousal and dysregulation are common descriptors of the schizophrenic syndrome. These descriptors have been applied to various other psychiatric conditions as well, ranging from mood disorders to borderline personality disorder (BPD) (Linehan, 1993). The assumption that environmental stressors lead to physiological dysregulation has received various levels of empirical support, but clear confirmatory evidence was attained in a recent population-based study in Taiwan. The investigators explored three questions that are highly relevant to understanding the relationship between, for example, high expressed emotion (EE) and relapse. “(1) Do chronic stressors predict physiological dysregulation? (2) Is that relationship moderated by characteristics of the individual and his or her social environment? (3) Do perceived levels of stress mediate the relationship between stressors and dysregulation?” (Glei, Goldman, Cuang, and Weinstein, 2007, p. 769). Data were obtained from a nationally representative longitudinal study of almost 1000 older adults in Taiwan. Applying regression models, the investigators examined the relationship between the number of codified stressful life events for a four-year period, 1996 to 2000. At the end of this period, they looked at physiological dysregulation based on 16 biomarkers. The biomarkers reflected neuroendocrine function, cardiovascular function, the immune system, and metabolic pathways. Sophisticated models tested whether psychosocial vulnerability moderates the impact of stressors, and evaluated the mediating effects of perception of stress. Results revealed a positive association between the number of life stressors and physiological dysregulation. The relationship was stronger for persons with greater psychosocial vulnerability, such as lower social position and fewer supportive networks. There was also some evidence that the level of perceived stress mediates the relationship between chronic stressors and physiological dysregulation. The authors state that the results give some support to the theory of allostatic load and support the stress-buffering hypothesis. Thus, even in a presumptively normal sample of the general population, an individual’s social position, social networks, and coping ability are associated with physiological response to stress. Hogarty and his colleagues (1986), focusing on prevention of relapse, noted that persons with schizophrenia live in a world “that required the vulnerable patient to
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make an adaptive response to complex, vague, multiple, or emotionally charged expectations. The difficult task faced by the patient in correctly perceiving, processing, and responding selectively to stimuli seemed capable of precipitating a cognitive dysfunction (psychosis), perhaps secondary to affective or autonomic dysregulation” (p. 634). Much of FPE has been based on the premise that their relatives’ psychobiological deficits inform their responses to ordinary life experiences. Thus, reduction of overstimulation in the family environment, together with the effects of psychotropic medications in regulating attention and arousal, will result in reduction of psychotic episodes or relapse. The damaging effects of high EE must be hypothesized from this model. Current research suggests that attribution of purposiveness appears to underlie high EE. This may convey an unmanageable demand to persons with schizophrenia. At particular points in time, they are expected to control that which is beyond their control. This may indeed be a double bind (but clearly as a precipitant of relapse, not an explanation of the disorder) and may result in a flight into fantasy. It must be emphasized again that many people become ill and decompensate in low-EE families, and that family environment is but one source of stress in a world with multiple perceived threats. External stressors may range from automobile accidents to war or natural disasters. Such events obviously cannot be controlled by mental health systems. However, service providers can control administering education and support to the caregivers who interact with their patients for many more hours than they are seen in treatment.
FAMILY PSYCHOEDUCATION AS EVIDENCE-BASED PRACTICE: RESEARCH OVERVIEWS Numerous overviews of FPE attest to its efficacy in reduction of relapse and re-hospitalizations, reduction of hospital days, and improvement of family understanding and well-being (Fadden, 1998; Dixon, Adams, and Lucksted, 2000; Falloon, Held, Falloon, Roncone, Held, Coverdale, and Laidlaw, 2002; Pilling, Bebbington, Kuipers, Garety, Geddes, Orbach, et al., 2002; McFarlane, Dixon, Lukens, and Lucksted, 2003; Murray-Swank and Dixon, 2004; Pharoah, Mari, Rathbone, and Wong, 2006; Glynn, Cohen, and Niv, 2007; Magliano and Fiorillo, 2007). Tabular descriptions and details of a multitude of studies of FPE may be found in Dixon, Adams, and Lucksted (2000), McFarlane, Dixon, Lukens, and Lucksted (2003); the Cochrane Review (Pharoah, Mari, Rathbone, and Wong, 2006), and Corrigan et al. (2008), among others. McFarlane, Dixon, Lukens, and Lucksted (2003) reported that these results have been demonstrated in more than 30 randomized clinical trials. In their analysis, only three studies had demonstrated no effect (Kottgen, Sonnischen, Mollenhauer, and Jurth, 1984; Telles et al., 1995; and Linszen et al., 1996). They explained that
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the Kottgren et al. study was actually psychodynamically oriented family therapy, not psychoeducation; In the Linszen et al. study, the control group received welldesigned individual therapy, achieving low relapse rates comparable to the family intervention. And in the study by Telles et al. a Spanish-speaking immigrant group showed either no or reverse effects depending on level of acculturation. They pointed out that positive findings have been demonstrated in other recent studies in Spain. In an earlier overview of the research, Dixon and Lehman (1995) found that randomized controlled trials of family interventions that provided illness education, support, problem-solving training, and crisis intervention, with appropriate pharmacotherapy, reduced one-year relapse rates that ranged from 40–53% to a range of two to 23%. Since that time there have been even more confirmatory data. A meta-analysis of family interventions found that inclusion of key relatives in the psychoeducational process reduced re-hospitalization rates by about 20% for schizophrenic patients (Pitschel-Walz et al., 2001). In their meta-analysis, Magliano and Fiorillo (2007) reported that among patients whose families received psychoeducation, the relapse rate at one year ranged from 6 to 12% compared with 41–53% in the control group. At two years, the relapse rates were 17–40% and 66–83%, respectively. Further, FPE has been effective in improving medication adherence and in reducing the overall cost of care. The various studies even indicate the possibility that FPE actually reduces patients’ level of disability. What are some of the mediating variables? In reviewing European and American studies, Bauml et al. (2007) pointed out that psychoeducation improves insight and compliance by providing information and emotional relief to patients and relatives; and lowers the rate of psychotic relapses and re-hospitalizations by ensuring sufficient dosage levels of antipsychotic medications.
METHODOLOGY OF OVERVIEWS OF THE LITERATURE Literature overviews generally are based on searches, careful analysis of findings, and presentation of uniformities and any discordant results. Although we cannot describe every overview in detail, we present the methodology on several of these overviews by prominent research teams. In an early review, Falloon, Held, Coverdale, Roncone, and Laidlaw (1999), whose own seminal work is presented in subsequent chapters, evaluated studies published in the international literature since 1980. A search using PSYCHLIT and MEDLINE data bases was conducted, also reference lists, monographs, and books were searched including languages other than English. The research methodology in each study was assessed by at least two reviewers. The team reviewed 43 controlled studies and found about 50% of high quality, methodologically. Attributes of studies were as follows: random assignment; post-random compatibility; blind,
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independent raters; blind subjects; standardized measures of clinical outcome, social outcome, and family benefits; measures of adverse effects; reliability established, explicit inclusion criteria; diagnosis made by standard criteria; age, gender, and severity of disorder cited; history of previous therapeutic response cited; specific treatment described; fidelity of treatment assessed; compliance with treatment assessed; statistical analysis appropriate to data; drop-outs accounted for at the end of study, or intention to treat analysis was done; cost analysis done; duration of active treatment at least six months with follow-up of at least six months. Each cohort was studied over at least one year. The final analysis was based on 22 high-quality controlled studies with treatment extending for at least six months. Outcome variables included all major psychotic and affective episodes, deaths, hospital admissions, and serious noncompliance or withdrawal from medication or psychosocial interventions as poor outcome. On all these variables, there were significantly better results for patients with the addition of FPE, characterized as “family-based stress management” to medication and case management alone. Although fewer studies looked at social and family benefits, the trends were positive in these areas as well with the addition of FPE (Falloon, Held, Coverdale, Roncone, and Laidlaw, 1999, p. 268). McFarlane, Dixon, and Lucksted (2003) published an overview of FPE as part of a series commissioned by the American Association of Marriage and Family Therapy on family interventions and therapies and the evidence for their effectiveness. The authors reported results of 30 randomized clinical trials, which overall, indicated that the relapse rate for clients whose families received FPE was around 15% per year, compared to a consistent 30% to 40% for individual therapy or medication alone. This team looked at 11 major studies of FPE versus standard treatment in terms of their N (ranging from 19 to 313, x = 81), duration of treatment (nine to 48 months, x = 22), and single family/multi-family format. They reported significant reductions in relapse, and noted similar findings in studies from China, Spain, Scandinavia, and Britain. (These studies are more fully described in subsequent chapters.) Other effects of FPE are increased patient participation in vocational rehabilitation; substantially increased employment rates; decreased psychiatric symptoms, including deficit syndrome, and improved social functioning. The reviewers also found improved well-being of family members; decreased family medical illnesses and utilization of medical care; and reduced cost of care (McFarlane, Dixon, and Lucksted, 2003). Probably the most comprehensive and exhaustive overview of family interventions has been done for the Cochrane Data Base of Systematic Reviews, with continuing updates as more studies are added to the literature (Pharoah, Mari, Rathbone, and Wong, 2006). However, the Cochrane Review focused exclusively on schizophrenia treated in routine practice, and was not limited to formally designated FPE. The Cochrane group investigated all reported randomized or
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quasi-randomized studies that focused primarily on families of people with schizophrenia and schizoaffective disorder and that compared all family-based psychosocial interventions with standard care in community settings. Studies were conducted in Europe, Asia, and North America. Their 2005–2006 update added 1765 participants, for a total N of 4124. The following comparisons were made of interventions that were five sessions or more: (1) any family intervention versus standard care; (2) behavioral familybased versus supportive family-based interventions; (3) group family-based interventions versus individual family-based interventions; and (4) family intervention versus standard care. With respect to data collection and analysis, the investigators independently extracted data and calculated fixed effects relative risk, the 95% confidence intervals for binary data, and where appropriate, the number needed to treat on an intention-to-treat basis. For continuous data, they calculated weighted mean differences. Participants included both men and women with a wide range of ages, people with long histories of illness, and those in their first episode. The authors state that there were no evident dissimilarities between trials from Australia, Europe, the People’s Republic of China, or the United States. From this large database, the investigators concluded that family interventions may decrease the frequency of relapse, reduce hospital admissions; encourage compliance with medication; improve the general social impairment level of patients, and improve levels of EE in the family. They state that family interventions do not affect the tendency of individuals or families to drop out of care, nor do such interventions prevent or promote suicide. To summarize, in this chapter we provide a distillation of the theoretical premises underlying FPE and the large research overviews that support its efficacy. FPE is based on the etiological assumption of diathesis-stress. The basic premise is that underlying biological deficits make certain individuals overreact to environmental stimuli that are experienced as stressful. Hyperarousal and emotional dysregulation as responses to perceived stressors are common aspects of many serious psychiatric disorders. According to Selye’s (1976) theory, stress is actually an internal response to external stressors, a physiological disequilibrium of the organism. The internal state then becomes an activator of attempts to resolve the disequilibrium. Psychotic or paranoid behaviors may be maladaptive attempts to attain this resolution. Family relations, particularly when manifested as high EE, that is, the stressor of hostile criticism or the crushing weight of emotional over-involvement, pose severe demands on the vulnerable organism and may generate decompensation. With appropriate education, FPE not only reduces these demand characteristics of high-EE relatives but under any conditions helps create an easier, less stressful home environment. By attending to the educational and psychological needs of caregivers, FPE makes for less family conflict and more competent caregiving.
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Together with the effects of psychotropic medications in regulating attention and arousal, reduction of over-stimulation in the family environment, and more comfortable and knowledgeable family relationships, may be the variables that result in reduction of psychotic episodes or relapse. Following this explanatory model, the chapter then presents a large number of comprehensive overviews of randomized controlled studies of FPE, with descriptions of the methodology of several major overviews. Overall, these studies demonstrate significant reduction of relapse and re-hospitalizations, reduction of days in hospital, and improvement of family knowledge and well-being in patients whose relatives received FPE in contrast to other or no family interventions. Investigators postulate that by providing information and emotional relief to both patients and family members, FPE improves insight and medication adherence, ensuring sufficient dosage levels of antipsychotic medications and thus reducing relapse rates. The largest database on family-based interventions in schizophrenia (N = 4124), in addition to corroborating the hypothesis of greater compliance and findings of reduced relapse and re-hospitalizations, also found improved levels of family EE and improved social functioning of patients. Following theoretical premises and research overviews, the next chapter describes some of the most important FPE research programs in greater detail. Since many research findings are based on time-limited interventions, we also discuss follow-up studies showing long-term effects.
5 M OD E L RE S E A RC H P RO G R AM S family psychoeducation
The studies that validated family psychoeducation (FPE) as evidence-based practice (EBP) were initially conducted primarily in the United Kingdom and the United States. According to Fadden (1998), the most influential studies that initiated the introduction of FPE were produced by four research teams, in their original reports and their confirmatory follow-up data. In the United Kingdom, Fadden cites the research of Leff et al. (1985) in London and Tarrier et al. (1989) in Manchester. In the United States, Falloon et al. (1985) in California, and Hogarty et al. (1991) in Pittsburgh were the major researchers. Although all provided some combination of education, support, and skills training, Abramowitz and Coursey (1989) have distinguished these seminal empirical studies in terms of a specific focus. They state that the Pittsburgh model focused on the provision of information (Anderson, Hogarty, and Reiss, 1986); the California (UCLA and USC) model featured skills training (Goldstein and Kopekin, 1981; Falloon, Boyd, and McGill 1984); and the London Institute of Psychiatry provided a comprehensive approach of information, skills, and support (Berkowitz, EberleinFries, Kuipers, and Leff, 1984). To this, we may add that the cognitive–behavioral interventions of Tarrier et al. (1989) focused on responding to families’ assessment of their own needs (Barrowclough and Tarrier, 1992). These seminal studies are described in depth in the following paragraphs, as well as those of other major researchers. All of the studies relied on reducing family stress and high expressed emotion (EE), empirically identified as lowering recidivism rates, rather than on theories of schizophrenia or of coping and adaptation. All focused primarily on the patient rather than the family. Later, the field would see the expansion of Falloon’s work in Europe, incorporation of FPE in the early intervention work in Australia, and
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the emergence of McFarlane’s (2002) multi-family model which is now being applied in Asia, Australia, and Europe, as well as the United States. This model adds peer support, including families’ exchange of resource information and coping techniques, to the basics of FPE. Concomitantly, a number of well-designed and rigorously controlled studies from other parts of the world, most notably China, confirmed the cross-cultural importance of FPE in the treatment of schizophrenia and major affective disorders. The following is a highly selective list of major programs that generated and continued FPE as EBP. They are generally presented in historical sequence.
SCHIZOPHRENIA FAMILY PSYCHOEDUCATION (FPE) Institute of Psychiatry, London; Royal Free and University College Medical School, London, University of Manchester, and University of Birmingham. Key researchers reporting over the years include Julian Leff, Christine Barrowclough, Paul Bebbington, Ruth Berkowitz, Max Birchwood, Graine Fadden, Liz Kuipers, Dominic Lam, Angus Strachan, Nicholas Tarrier, Christine Vaughn, et al. The Expressed Emotion (EE) research emanated from the Institute of Psychiatry in London, and Kuipers, Leff, and Lam (2002) have pointed out that in their research and clinical work, they have selected families in which at least one member was rated as high-EE. They state that this does not imply that low-EE families do not need help; however, high-EE families have a higher priority and they have had to be selective when trained therapists are in short supply. Their training manual for family work therefore incorporated this selective emphasis. In their first trial with 24 patients with schizophrenia (Leff et al., 1982), two types of family interventions were compared with standard care. High-EE relatives were randomly assigned to a family therapy condition involving psychoeducation (FPE) in the home with the patient present (N = 12) or a psychoeducational relatives’ group with the patient absent (N = 11). (In the final data analysis at the end of two years, there were 26 relatives who attended and were interviewed at three different time points.) Both relatives’ groups and FPE sessions were scheduled every two weeks for nine months. The researchers hoped to determine whether desired changes in the family could be achieved equally well, regardless of the patient’s participation, compared with regular outpatient treatment with no family intervention. The FPE group received a median of 17 sessions in the first nine months, and a median of 12 between the nine-month and two-year follow-up. The relatives’ group was similarly scheduled for about the same number of bi-monthly sessions. The investigators found that relatives’ over-involvement reduced steadily throughout the trial. They stated that reduction in relatives’ EE, either alone or together with
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reduced face-to-face contact, appeared to be associated with lower relapse rate. At nine months, the relapse rate in the FPE group was 8% versus 50% in the standard care condition. At two-year follow-up, the differences had disappeared—33% in the FPE versus 36% in the relatives’ group. However, “When these data were combined with the results of a previous trial, it was found that patients in families assigned to any form of social intervention had a two-year relapse rate of 40%, significantly lower than the 75% relapse rate of patients whose families were offered no help” (Leff et al., 1990, p. 571).
NEEDS-BASED COGNITIVE–BEHAVIORAL FPE University of Manchester, United Kingdom: Christine Barrowclough, Nicholas Tarrier, William Sellwood, et al. Background: This program is of particular interest because it used a family needs-based approach in delivering psychoeducation. In this respect it was somewhat similar to family consultation, in tailoring the intervention to needs and problems identified by the families. This intervention extended FPE to outpatients in regular clinical services with family members who were not necessarily of high-EE status. The study used a geographical sample in which subjects were entered into the trials as patient-caregiver units. Potential subjects were identified by screening hospital admission records, obtaining dual consent, and then assessed on multiple measures before randomization to two arms of a controlled study. The treatment group offered a needs-based psychosocial intervention including family support, and a control group offered family support alone. The planned intervention was 24 weeks in patients’ homes. All patients in both groups were allocated a voluntary family support worker. Specific problems were identified by each family and the focus, content and quantity of interventions were determined by a systematic assessment of caregiver needs, level of concern, and desire for intervention. For each problem, a number of psychosocial intervention approaches were identified. Three broad types of interventions were differentiated: problem-solving techniques, derived from the behavioral family management of Falloon, Boyd, and McGill (1984); cognitive–behavioral interventions with families, developed by Barrowclough and Tarrier (1992); and individual cognitive–behavioral interventions with patients with psychosis (Haddock, Tarrier, and Spaulding, 1998). Over a six-month period 10 to 20 sessions were available for families, with patients attending at least 50% of the sessions. Outcome variables were based on patients’ symptom and functional levels, and medication compliance. Families were assessed for needs, general health, social functioning, depression, and EE levels. Results: Among 77 patient–caregiver pairs, at six-month follow-up, relapse outcomes were significantly superior for family-treated patients versus controls
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(24% vs. 46%). There was a significant reduction in the cardinal needs and number of problems of the needs-based intervention group vis a vis controls, who had begun with equivalent scores. However, distress and burden scores in both groups showed a high degree of stability over the six-month period, and there were no differences between the groups Barrowclough, Tarrier, et al., 1999). Since that early research, many studies have been generated in the United Kingdom, particularly in the London and Manchester research groups. The Manchester needsbased study cited earlier provided consistent results at twelve-month and five-year follow-ups (Sellwood, Wittkowski, Tarrier, and Barrowclough, 2007). These findings are described in the long-term follow-up section below and cited throughout this book.
FAMILY PSYCHOEDUCATION AND TREATMENT PROGRAM (FPTP) University of Pittsburgh, Western Psychiatric Institute and Clinic, Carol Anderson, Gerald Hogarty. The Pittsburgh program evolved from evidence in the research literature on schizophrenia and from years of experience with unsuccessful traditional approaches to working with families of patients with this disorder. Increasingly aware of family needs and stresses in coping with schizophrenia, these clinicians “began to wonder if most ‘real’ family therapy was in fact antitherapeutic. We began to experiment with other more educational formats” (Anderson, Reiss, and Hogarty, 1986, p. 2). From the copious research on biological substrates, together with the research on EE, they concluded that if either environmental demands or underlying cerebral deficits are sufficiently severe, they are likely to generate a schizophrenic relapse. Their initial psychoeducational work therefore focused primarily on reducing high EE in families of hospitalized patients in order to facilitate community re-entry and prevent relapse. In a subsequent evaluation of efficacy, this model determined the selection of family participants. The program was designed as “an education and management strategy intended to lower the emotional climate of the home while maintaining reasonable expectations of patient performance. . . . This strategy should not be formally designated as ‘family therapy’.” Rather, through the provision of formal education about the disorder and strategies for managing more effectively, family members become allies in the treatment process as their anxiety and distress are decrease. More traditional attempts to promote disclosure, ‘insight,’ or direct modification of family systems, including the resolution of intergenerational and marital issues, were, for the most part, avoided.. . . Treatment sought to increase the stability and predictability of family life by decreasing the family’s guilt and anxiety, and increasing their self-confidence, and providing a sense of cognitive mastery through the provision of information concerning the nature and course of schizophrenia as well as specific management strategies . . .” (Hogarty et al., 1986. p. 634).
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The phases of the intervention included: I. Connection, that is, connecting with the family through joining, empathy, reducing family stresses, establishing a treatment contract with specific practical suggestions; II. Survival Skills Workshop, concrete data on schizophrenia, understanding of illness and patient’s needs, concrete management suggestions, and basic communication skills; III. Re-entry and Application, focused on maintenance of patient in the community, with increased tolerance for low-key dysfunction, along with gradual assumption of responsibility by the patient, reinforcement of boundaries, task assignments, and problemsolving; IV. Work, Social Adjustment, a period of re-integration into normal roles in work, school, continued stabilization, with increased attention to needs of other family members; V: Maintenance increased effectiveness of general family processes, with decreased use of therapeutic resources. A detailed description of each of these stages, including the training and supervision of staff, may be found in Anderson, Reiss, and Hogarty (1986).
THE RESEARCH DESIGN AND FINDINGS This was a study of 103 hospitalized patients with schizophrenia from high-EE households. The research design specifically required that “for at least three months before admission, the patient had to reside in (and was likely to return to) a household defined as ‘high’ in EE. A significant other residing in the patient’s household was rated ‘high’ if he or she expressed six or more critical comments toward the patient, or had a rating of four or five on a global judgment of emotional over-involvement, or had a positive rating of hostility (on) the abbreviated form of the Camberwell Family Interview . . .” (Hogarty et al., 1986, p. 635). Subjects were randomly assigned to a two-year after-care program of: (1) family treatment and medication, (2) social skills training and medication, (3) a combination of the first two conditions, or (4) medications alone. Results: First-year relapse rates for the treatment group showed a main effect for family treatment (19% relapse), a main effect for social skills training (20%), and an additive effect for the combined conditions relative to controls, who had a 41% relapse rate. There was an absence of relapse in any household that changed from high to low EE. Only the combination of treatment sustained a remission in households that remained high EE. However, the authors stated that further study suggested that there appears to be a delay in relapse rather than prevention. Moreover, they cautioned against a tendency to admit only high-EE families to psychoeducation as a primary indicator of risk. In their two-year report, it appeared that FPE was most effective in deterring relapse, and this occurred regardless of social-skills training. Only 29% of patients receiving FPE relapsed over the twoyear study period, compared with 62% of patients who received pharmacotherapy alone (Hogarty, Anderson, Reiss, Kornblith, Greenwald, et al., 1991).
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FAMILY PSYCHOEDUCATION FOR SERIOUS MENTAL ILLNESS
BEHAVIORAL FAMILY THERAPY (BFT) Robert Liberman, Ian Falloon, Michael Goldstein, also Shirley Glynn, David Miklowitz, Jan Randolph and others, University of California, Los Angeles, University of Southern California School of Medicine; Kim Mueser, Dartmouth Medical School; Optimal Treatment Project, University of L’Aquila, Italy, Ian Falloon and Associates. BFT was first evaluated by Ian Falloon and his associates (Falloon, Boyd, and McGill, 1984) using behavioral analysis of families’ needs and teaching families behavior-management techniques to help the patient and family cope with schizophrenia. As McFarlane, Dixon et al. (2003) note, this approach “follows a sequential framework of assessment, intervention and ongoing review, and includes a behavioral analysis of the strengths and needs of each family member and the family unit as a whole, followed by single-family sessions in the home. These sessions focus on education about schizophrenia, strategies for improved communication, and the development and rehearsal of problem-solving techniques . . . The model starts from a strengths perspective, with clinicians assuming that each family member is functioning at his or her best . . . ” (p. 226). The basic content of the BFT approach may be found in Table 5.1, Table 5.2, and Table 5.3. For many years, Robert Liberman and
TABLE 5.1 PSYCHOEDUCATIONAL INTERVENTIONS FOR FAMILIES (SCHIZOPHRENIA) basic premise Schizophrenia is a brain disorder that is highly sensitive to the social environment. Treatment requires medication (also psychotherapy and rehabilitation as needed), and techniques to reduce stimulation and complexity in the environment and facilitate effective knowledge and support of caregivers. There is no presumption of family dysfunction or psychopathology.
•
common components State-of–the-art information about the disease and its treatments
•
Supportive understanding of the family’s experience
•
Behavior management and communication techniques
•
Problem-solving strategies
•
theoretical tools Stress. Coping and Adaptation Theory (understanding patients’ and families’ response to illness)
•
Social Learning Theory (training skills through repeated role rehearsals, modeling social reinforcement)
•
Cognitive Theory (training to question assumptions about the meaning of symptoms and the illness)
•
Behavior Theory (modifying behavior by setting limits, contingency contracting, shaping, etc.)
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TABLE 5.2 THE CONTENT OF FAMILY EDUCATION ABOUT SCHIZOPHRENIA
•
•
diathesis-stress model Schizophrenia is a biologically-based, stress-related illness that leads to widespread problems in living, intimate relationships, work, study, personal care, social and leisure activities. Diagnosis, symptoms, etiology, drugs. The experience of psychosis, positive and negative symptoms, handouts, visual aids, etc.
•
medications Expected affects and side effects
•
Reasons for antiparkinsonian drugs
•
importance of drug compliance to forestall relapse Prodromal warning signals of tardive dyskinesia
negative effects of street drugs and alcohol
•
expectancy of change Expected slow rate of improvement
•
stress identification and control Improve family’s ability to identify and deal with stressful situations
•
Criticisms and emotional over-involvement are reduced
•
family issues Education to reduce guilt, over-responsibility confusion helplessness of family
•
Enable family members to be less judgmental and critical, and less invested in fantasies that they caused or that can cure the illness
•
Issues of control and accountability
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Families’ obligations to themselves
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patient issues Patients are encouraged to come to terms with their illness
•
Education aims at reducing denial, encouraging reasonable hopes for gradual improvements supplanting fantasy with planning action toward attainable goals
•
Planning for work and/or productive use of time, social outlets
•
joint family planning to cope with current stressors Anticipatory planning for future stress and avoidance of relapse after intervention ends.
•
May use psychoeducational intervention to establish family’s role in treatment- planning, long-term goals-setting, establish boundaries of confidentiality, etc.
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FAMILY PSYCHOEDUCATION FOR SERIOUS MENTAL ILLNESS
TABLE 5.3 THE BEHAVIOR-MANAGEMENT MODEL OF FAMILY PSYCHOEDUCATIONAL INTERVENTIONS* education about schizophrenia A realistic yet hopeful account of the nature, causes, courses and management of schizophrenia is presented to patients and their families, with handouts, diagrams, visual aids, and other needed resources communication training Teaching non-verbal and verbal communication skills through repeated role Rehearsal, with instructions modeling and social reinforcement •
Non-verbal behavior •
• •
Voice, tone, volume, eye contact, facial expression
Verbal content of the interaction Reciprocity of communication including: •
Reflective empathic listening
•
Keeping communication highly specific
•
Simplifying content
•
Avoiding excessive delays in expressing both positive and negative emotions
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Role modeling, role reversal in simulations, etc. problem-solving training
Teaching a structured, sequential approach to generating effective solutions to specified family problems •
Identify a specific problem
•
Outline alternative strategies, five potential solutions before making judgment
•
Evaluate potential effectiveness of each of listed strategies
•
Agree on most effective solution
•
Carry out best solution
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Review results; praise efforts
behavior management techniques for coping with symptomatic behaviors Contingency contracting •
Two members agree on what they would like to do for each other in a mutual exchange
Token economies Shaping •
•
Step-by-step prompting and reinforcement for successive approximations
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TABLE 5.3 THE BEHAVIOR-MANAGEMENT MODEL OF FAMILY PSYCHOEDUCATIONAL INTERVENTIONS* (CONT'D) Time out Members excuse themselves from stressful situations when they feel under Pressure-role model for patient Setting limits •
•
Acceptable limits for all family members
Identifying prodromal warning signals of relapse •
Sleep disturbance
•
Social withdrawal
•
Unco-operativeness
•
Unusual ideas, mannerisms
•
Irritability
Seek professional help
his associates at UCLA incorporated FPE in psychiatric rehabilitation programs (Liberman and Liberman, 2003). They developed manuals, videotapes, and other training materials, and continue involving families in today’s recovery orientation in mental health care (Liberman, 2008).
RESEARCH DESIGN AND FINDINGS In the early studies of the California group, patients were randomly assigned to receive either family or individual treatment. All index patients were scheduled to receive 40 therapy sessions over a two-year period. Patients were assessed at nine and 24 months, evaluating each patient’s mental status, social adjustment. Families were assessed in terms of family burden, and attitudes toward illness and treatment. Family interactions were assessed at baseline, three months, and 24 months. Results: Individual therapy patients were far more likely than family therapy patients to experience a major episode (21 vs. three episodes, respectively) and these episodes were more than three times as long in duration (69 vs. 21 days). The mean days of hospitalization were 11% for patients receiving family therapy versus 50% for patients in the individual therapy condition. There were small but significant gains in social functioning and social adjustment among patients who received family treatment, whereas those in individual treatment showed no overall improvement. At nine-month assessment, fewer family-treated patients tended to show the same behavioral impairments as at baseline. Again in relation
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FAMILY PSYCHOEDUCATION FOR SERIOUS MENTAL ILLNESS
to baseline, at nine months, significantly fewer family-treated patients displayed bodily complaints, problems of medication adherence, odd or unusual behavior, or self-neglect than did the individually-treated cohort. “Improvements in the family-treated patients appeared most prominent in behavior associated with the social impairments of schizophrenia, such as withdrawal, bizarre behavior, and self-neglect . . . One very striking finding was a lack of reported problems with medication compliance in the family-treated group. This compared with compliance problems reported in nearly 40% of individual patients . . .” (Falloon, Boyd, and McGill, 1984, p. 344). Since that early study, Mueser and Glynn (1999, p. 239) reported six additional controlled studies of long-term FPE with a behavioral orientation, also three with supportive and one with a family systems orientation. Duration ranged from nine to 24 months, with a mode of 24 months. In three-quarters of the studies, the psychoeducatonal behavioral family intervention was more effective at the.05 level or better. Falloon’s work in FPE continued in Europe with the Optimal Treatment Program, described in the following paragraphs.
TREATMENT STRATEGIES IN SCHIZOPHRENIA: BFT AND MEDICATION LEVELS Schooler, S. J. Keith, J. B. Severe, S. M. Matthews, A. S. Bellack, I. D. Glick, W. A. Hargreaves, J. M. Kane, P. T. Ninan, A. Frances, M. Jacobs, J. A. Lieberman, R. Mance, G. M. Simpson, and M. G. Woerner. NIMH/Western Psychiatric Institute and Clinic, Pittsburgh, PA 15213, United States. Background: Previous studies have examined dose reduction and family treatment in schizophrenia, but none has examined their interaction. This study assessed the impact of dose reduction of antipsychotic medication and family treatment on relapse and re-hospitalization during maintenance treatment. Methods: subjects were 313 male and female outpatients at five centers with a DSM-III-R diagnosis of schizophrenia or schizoaffective disorder. In a 3 × 2 design, subjects were randomized to one of three medication strategies using fluphenazine decanoate under double-blind conditions: continuous moderate dose (standard) (12.5–50 mg every two weeks); continuous low dose (2.5–10 mg every two weeks); or targeted, early intervention (fluphenazine only when symptomatic). Subjects also were randomized to 1 of two family treatment strategies (supportive or applied, i.e., BFT). Supportive family management involved monthly group meetings. The more intensive applied family management involved monthly group meetings and home visits where communication and problem-solving skills were taught. Patients and families were treated and assessed for two years. Results: Both continuous low-dose and targeted treatment increased use of rescue medication and relapse; only targeted treatment increased re-hospitalization.
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This pattern was consistent across both family treatments; there were no differences between family treatments. Conclusions: These findings reaffirm the value of antipsychotic medication in preventing relapse and re-hospitalization. The absence of family treatment differences may be because both conditions engaged families (Schooler et al., 1997). A sub-study of the same groups by Bellack, Haas, Schooler, and Flory (2000) examined the effects of BFT on communication, problem-solving, and outcome to determine the impact of the structured communication training. Patients and family members were videotaped engaging in a 10-min problem-solving conversation at baseline and after the conclusion of the family intervention. Tapes were subsequently evaluated for changes in communication patterns. Results: The BFT did not produce differentially improved communication, and any change in communication was unrelated to patient outcomes. However, another sub-study in the Treatment Strategies in Schizophrenia project found that
TABLE 5.4 THERAPIST BEHAVIOR positive reinforcement • Praise, attention, interest used by therapist to build supportive family milieu for problem resolution and good communication shaping Therapist selectively reinforces even small signs of improved family relationships
•
extinction Minimum reinforcement through lack of attention, interest, acknowledgement of inappropriate behavior
•
modeling Therapist models active listening, expression of negative feelings, positive requests for behavior change
•
rehearsal -Interpersonal situations are acted out with constructive feedback from therapist in every session, families go over particular problem situations and learn alternative responses
•
homework Practice assignments on the behavior dealt with in the session are given to each member to report on next session
•
Note: Table 5.1– 5.4 are largely based on the combined work of the research group at University of South California and UCLA, primarily Ian Falloon, Robert Liberman, Kim Mueser, Shirley Glynn, Jan Randolph, and others involved in schizophrenia research.
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FAMILY PSYCHOEDUCATION FOR SERIOUS MENTAL ILLNESS
families who received BFT showed lower levels of family friction and relatives had less rejecting attitudes toward the patient than families who received supportive family management only (Mueser, Sengupta, et al., 2001).
MULTI-FAMILY GROUP PSYCHOEDUCATION (MFG) William McFarlane, Ellen Lukens, et al.; Columbia University and New York State Psychiatric Institute, New York: Maine Medical Center. The initial study of MFGs was conducted in 1981, in a small-sample experiment in which 41 patients with schizophrenia were selected during relapses and randomly assigned to psychoeducational single-family treatment (PSFT), psychoeducational multi-family group,(PMFG), and a family-dynamic multi-family group (FDMFG). The treatments offered psychoeducation alone for PSFT, social network expansion for PMFG, and both combined for FDMFG. Treatment was based on the Anderson–Hogarty–Reiss model previously described. Results: The PMFG cohort yielded the lowest relapse rate after four years, 50% versus 78% of the patients in the PSFT and 57% in the PDMFG conditions. The risk for relapse in the PFMG cell was 33% of the single family treatment, significant at the .05 level. It was clear that the multi-family format yielded superior results. The New York State Family Psychoeducation Study followed. Based on their previous work, McFarlane and his colleagues then compared outcomes in a study in which 172 acutely psychotic patients with schizophrenia were randomly assigned to single family or multi-family group (MFG) psychoeducation at six public hospitals in New York state for two years of treatment. All family clinicians were trained with a treatment manual and were required to meet competency criteria. All patients were medicated with maintenance dosages after index hospital discharge. By protocol, patients in the study could not receive any outpatient individual or family psychotherapy. Psychotic relapse, symptom status, medication adherence, re-hospitalization, and employment were then assessed during two years of supervised treatment. Research Findings: The MFG condition yielded significantly lower two-year cumulative relapse rates than did the single-family treatment (16% vs. 27%). Among patients who were not in remission at index hospital discharge, the MFG advantage was even stronger (13% relapse vs. 33% for single family treatment). The relapse risk ratio between treatments was 1.3. The relapse rate for both single and multiple family group psychoeducation was less than half the expected rate (65% to 80% for two years). In both conditions, re-hospitalization rates and psychotic symptoms decreased significantly, and medication compliance was high. The authors’ conclusion was that MFG was more effective than single-family treatment, with a cost–benefit ratio of up to 1.34 (McFarlane et al., 1995). A four-year follow-up permitted an experimental three-way comparison of PMFGs, psychoeducation in a single-family format, and MFGs without
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psychoeducation, using symptom relapse as the outcome criterion. After four years, the PMFGs were significantly more effective than the single-family intervention, while both MFG formats, with or without psychoeducation, were approximately the same. The relapse rates at four years for the MFGs were 50% with psychoeducation and 57% without psychoeducation, averaging 12.5% and 14% per year, respectively. For the single family format, the four-year relapse rate was 78%. According to the authors, these results indicate a long-term therapeutic effect for family groups (McFarlane, Link, Dushay, Marchal, and Crilly, 1995). The Family-Aided Assertive Community Treatment (FACT) Outcome Trials was a subsequent research program, described in McFarlane (2002). Because 15% of cases in the earlier studies continued relapsing, the team decided to integrate MFGs with assertive community treatment (ACT) teams to improve clinical status in patients who seemed to be treatment failures. Two studies were conducted, exploring the effectiveness of the combined model; one comparative, and one controlled. In the controlled study, 60 persons with schizophrenia were randomly assigned to ACT combined with either PMFG or crisis family intervention (CFI). Patients were required to have at least one complicating factor: lack of treatment adherence, history of violence and/or suicidality, frequent hospitalizations, arrests or criminal convictions, homelessness, unwanted pregnancy, or substance abuse. In the PMFG cohort, families and patients participated in group problem-solving sessions, received pychoeducation, and met weekly with two ACT team members for two years. In the CFI intervention, FACT team coordination occurred only at times of crisis, without input of other families. Results: The PFMG treatment resulted in higher employment activities, including sheltered work (33% vs. 19% for CFI)). However, there were no group differences with regard to hospitalization rates or symptom change for the samples as whole. For all patients, hospitalization decreased over the two years and, in the final six months, it was only 30% of the mean pre-treatment rate. All symptoms decreased from baseline to two years ( p < .001).There was an increase in medication adherence from intake level ( p < .001). There were also significant improvements in family ratings of objective burden, subjective burden, dissatisfaction with the patient, and patients’ friction with others (McFarlane, 2002). Since these findings, there have been other studies confirming the advantages of MFGs. In a study conducted in Spokane, Washington, participants in MFG experienced significantly reduced negative symptoms compared with families of those receiving standard care (Dyck et al., 2000). In another study, caregivers receiving MFG experienced greater reductions in distress compared with caregivers of patients receiving standard psychiatric care (Hazel et al., 2004). In terms of cost–benefit, McFarlane reported that “In Michigan, one county system documented an 83% net reduction in acute care costs year-to-year for 50 patients, about one-third on ACT teams, the others young adult clinic
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patients . . . Imagine—83% reductions in acute care costs for the USA!” (W.R. McFarlane, personal communication, August 12, 2008). McFarlane’s model has been widely utilized in various states in the United States (McFarlane et al., 1993; McFarlane, McNary, Dixon, Hornby, and Cimett, 2001). Included are clinics in California, Illinois, Maine, Michigan, New Hampshire, New Jersey, New York, and Ohio. “We have trained nearly a thousand clinicians in Michigan and there are at least 50 clinics in New York using MFGs . . . Kaiser Permanente has been implementing throughout their Northern California system with some considerable success—at least one group in each clinic trained. Successful implementation in Australia, west of Melbourne; large-scale applications in Japan and China, Norway, and Denmark and the Canary Islands” (W.R. McFarlane, personal communication, May 12, 2008). In the next chapter, we will see that McFarlane’s model is widely applied in early intervention studies. The essentials of MFG, and many of its applications, are indicated in McFarlane, 2002. The general advantages of the group format as a supportive resource for families are indicated in Table 5.5, and the empirical advantages in Figure 5.1.
THE OPTIMAL TREATMENT PROJECT GROUP(OTP) Ian Falloon, and the OTP Collaborative Group, ARIETE, Perugia, Italy, University of Auckland, New Zealand; University of Valencia, Spain; University of Istanbul, Turkey; Azienda Ospedaliera S. Anna, Como, Italy; University of Gothenburg,
TABLE 5.5 MULTI-FAMILY GROUPS: ADVANTAGES IN COPING •
Empathic understanding of shared experience
•
Normalized reactions of fear, guilt, grieving
•
Resource information
•
Exchange of coping strategies
•
Social network for isolated familiesa
•
Enhanced problem-solving capabilitya
•
Antidote to emotional over-involvement*
•
Cross-parenting: concrete aid for members’ relatives—jobs, social support, guardianshipa
•
Connections to advocacy organizations
•
Examples of success stories
•
Reinforcement of hope and mastery
a Also found in McFarlane, W.R. (2002). Multifamily groups in the treatment of severe psychiatric disorders.
Guilford, New York.
49
MODEL RESEARCH PROGRAMS 100%
Standard Care (N ⫽ 203) Single Family Treatment (N ⫽ 231)
Cumulative Relapse Rate
Multiple Family Group Treatment (N ⫽ 266) 75%
Single & Multiple Family Group Treatment (N ⫽ 243) 59%
50%
29% 25%
28%
26%
0% Figure 5.1 Cumulative relapse/re-hospitalization rates during 18 to 24 months in randomized controlled trials of long-term family intervention for schizophrenia. Reprinted with permission from Mueser, Bond, and Drake (2001). Community-based treatment of schizophrenia and other severe mental disorders: Treatment outcomes. Medscape General Medicine, 3(1), 1–24.
Sweden; University of Athens, Greece; Norwegian University of Technology and Science, Trondhem, Norway; Semmelweiss, University, Budapest, Hungary; Keio University, Tokyo, Japan; Meiji Gakuin University, Tokyo, Japan; Rheinischelandesklinik, Bonn, Germany; University of Berlin, Germany; Department of Mental Health, Campobasso, Italy; Te Ara Hou Mental Health Trust, Auckland, New Zealand. OTP was set up as an international collaborative group to promote the routine use of evidence-based strategies for schizophrenic disorders in ordinary clinical facilities. The strategies are listed as follows: •
• • • •
• •
Antipsychotic drugs at lowest levels for effectiveness 1. Education about medications, training in adherence, early warning signs of illness exacerbation Education of patients and caregivers in stress-management strategies Education on psychotic disorders and their treatments Training in effective interpersonal communication and problem-solving Assertive case management and outreach 1. Gaining effective social support, including housing, finances, health, and safety Early detection and care to resolve clinical and social crises Goal-oriented social-skills training (for patients and caregivers) 1. Specific pharmacological and psychological strategies for recurring symptoms
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FAMILY PSYCHOEDUCATION FOR SERIOUS MENTAL ILLNESS 2. Strategies for coping with persistent psychosis, managing negative symptoms, coping with anxiety and panic, mood swings, dysphoria, suicidal thoughts (Falloon, 1999; Falloon et al., 2004).
As a demonstration project, the OTP set up an international multi-site study to evaluate the benefits of applying evidence-based treatment (EBT) for schizophrenia and other nonaffective psychotic disorders over a five-year period. At its inception, 53 sites in 21 countries were initially selected, and 35 sites continued to participate. More than 80 centers in over 20 countries began the project since 1994. However, there were only 14 centers with unselected cases who received optimal treatment for at least 24 months according to the project protocol. These formed the basis of the review. At the program sites, multi-disciplinary teams were trained to administer the optimal treatment strategies, with continuous audits of fidelity to the model, annual independent reviews of services, and further training as needed. A core battery of global measures was used to assess outcomes, including symptom impairment, psychosocial functioning, and disability scales, and global caregiver stress.
Research Findings At the end of 2002, 1012 cases have entered the project, with 603 having completed at least two years of optimal treatment. Complete data was available on 594 cases, 99% of the sample. On clinical, social, and caregiver indices, significant improvements were found after 24 months. There were average percentages changes of 41% on the impairment index, 39% on disability, and 48% less stress on caregivers. Direct comparison of cases randomly assigned to OTP (N = 146) or routine case management (N = 114) in four sites (Ankara, Trondehim, Benvento, and Gothenburg) showed even greater contrast, with OTP cases showing more than twice the benefits of routine case management. Recovery was assessed at two levels: (1) full (no significant impairment or disability) and (2) partial (substantial improvement in impairment and disability). Further analysis showed that 35% of the OTP cases met criteria for full recovery at 24 months versus 10% of those in routine case management. When a recentonset group (onset within 10 years) was considered separately, 43% had made a full recovery. In sum, “On all measures, the evidence-based OTP approach achieved more than double the benefits associated with current best practices. One half of recent cases had achieved full recovery from clinical and social morbidity. These advantages were even more striking in centers where a random-control design was used” (Falloon et al., 2004, p. 104). More recently, an OTP team based at the University of L’Aquila, Italy, focused primarily on FPE, which they defined as a cognitive–behavioral model. They describe the following content: “individual evaluation of each member of the
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family; assessment of the problem-solving capacity of the family as a whole; education regarding the nature of the disorder and its biomedical and psychosocial treatment; identification of early warning signs; improvement of communication skills; structured problem-solving; personal and family objective setting; social skills and vocational training; and evidence-based psychological strategies for specific problems, such as anxiety syndromes” (Roncone et al., 2007, p. 592). To test the effectiveness of FPE in routine services, 34 mental health professionals were trained in the Falloon model of FPE and applied it for six months in 17 mental health centers in Italy. Recipients were all family members of persons with schizophrenia. At baseline and six months later, the patients’ clinical status and level of disability were assessed, as well as participants’ level of family burden, social network, and professional support. All assessments were on well-validated instruments. Of the 71 recruited families, 48 (68%) completed the intervention. At six months, a significant improvement was found in patient’s clinical status and social functioning. The percentage of patients with poor or very poor global social functioning dropped from 50% to 27%. Relatives’ burden and social and professional support similarly showed significant improvement. Forty percent of patients and 45% of relatives reported significantly improvement in their social contacts (Magliano et al., 2006).
MAJOR AFFECTIVE DISORDERS FAMILY FOCUSED TREATMENT (FFT) FOR BIPOLAR DISORDER (BD) (MIKLOWITZ AND GOLDSTEIN, UCLA) According to FFT founders Miklowitz and Goldstein (1997), the six objectives of FFT are to assist the patient and relatives in the following goals: (1) integrating the experiences associated with episodes of BD; (2) accepting the notion of vulnerability to future episodes; (3) accepting a dependency on psychotropic medication for symptom control; (4) distinguishing between the patient’s personality and his or her bipolar disorder; (5) recognizing and learning to cope with stressful life events that trigger recurrences of BD; and (6) establishing functional relationships after the episode. BD is considered a disorder that impacts the family. The model begins with functional assessment of history of the disorder and family interactions. FPE involves etiology, treatment, and self-management within the vulnerabilitystress model. The sessions are devoted to dealing with resistance; communication enhancement training relevant to clinical issues; dealing with family problems and problem-solving techniques; managing crises such as manic relapses, depressive relapses, suicidal attempts, alcohol and substance abuse and other psychiatric crises; and termination, including anticipating future problems and treatment needs, and arranging for follow-up visits.
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Research Findings: In a randomized controlled trial, 101 bipolar patients were assigned to FFT compared with a less-intensive crisis-management intervention. Both groups received pharmacotherapy. Outcome was assessed every three to six months for two years. FFT involved 21 sessions of psychoeducation, communication training, and problem-solving skills training for nine months. Crisis management involved two sessions of family education and crisis intervention sessions as needed. For patients whose families received FFT, there were significantly fewer relapses, longer survival intervals, greater reductions in mood-disorder symptoms, and better medication adherence than those receiving crisis management alone (Miklowitz, George, Richards, Simoneau, and Suddath, 2003). A one-year randomized trial from the Systematic Treatment Enhancement Program (STEP-D) examined the effects of four psychotherapies for depression in patients with BDI and BD II disorders. Fifteen clinics tested a total of 293 patients. They were randomly assigned to intensive psychotherapy (N = 163) or collaborative care (N = 130), the latter consisting of three sessions of education in six weeks. Intensive psychotherapies were interpersonal therapy, social rhythm therapy, cognitive–behavior therapy, and FFT. These were given weekly and bi-weekly for up to 30 sessions in nine months. Each of the study sites chose to administer one type of intensive psychotherapy, based on preferences and clinical expertise. Nine sites offered FFT. At the FFT sites, randomization was stratified further by whether family members were available and able to participate (53% of the sample). Patients without families were randomly assigned to other conditions. FFT involved patients and at least one family member and was implemented in three modules. The material focused on recognizing early warning signs of recurrence and developing relapse prevention plans that involved multiple family members. Patients and family members developed a shared understanding of the importance of medication adherence and reduction of environmental stressors. Participants received training in effective family communication, with behavioral rehearsals of effective listening and speaking skills as well as problem-solving skills. Results: Rates of attrition did not differ across the psychotherapy and collaborative care conditions. Patients in intensive psychotherapy had significantly higher year-end recovery rates, shorter times to recovery, and were 1.58 times more likely to be clinically well during any study month than those in collaborative care. There were no significant differences in the outcomes of the three intensive psychotherapies. However, the improvement from baseline scores was greatest for the FFT group (Miklowitz et al., 2007). More extensive descriptions of multi-family groups for bipolar illness may be found in Moltz and Newmark (2002). Multi-family psychoeducational interventions for major depressive disorder are outlined in Keitner et al. (2002). These are comprehensive descriptions but presented without research data.
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LONG-TERM EFFECTS In reviewing the seminal work of Gerald Hogarty at the University of Pittsburgh, Eack, Schooler, and Ganguli (2007) point out that Hogarty felt that the strongest effects of FPE on patient relapse accrued primarily in the early course of treatment, and degraded once the intervention concluded. He seemingly doubted the maintenance of positive effects of family interventions alone. Therefore, we look at some of the long-term follow-up studies that ensued after the earlier work on FPE. In the Bauml et al. (2007) report, it was evident that positive effects were found both at two-year and seven-year follow-ups. The Munich Psychosis Information Study compared 101 patients with DSMIII-R or ICD-9 schizophrenia randomly assigned to intervention or control groups between 1990 and 1994. During their index hospital stay, the intervention group and key relatives each received separate group psychoeducation. The main outcome measures were re-hospitalization rates, number of intervening hospital days, compliance, and mean number of medication (chlorpromazine) units. Seven years after the index discharge, 24 intervention and 24 control subjects were available for study. The rate of re-hospitalization was significantly lower for the intervention group ( p < .05). During the seven-year period, medication compliance was higher in the intervention group and the mean number of hospital days spent in a psychiatric hospital was 75 in the intervention group vis a vis 225 days in the control group ( p > .05). These results at seven-year follow-up were even more remarkable given the fact that at index admission, patients in the intervention group had a longer duration of illness and more previous hospitalizations than those in the control group. Bauml et al. (2007) felt that with findings like these, the integration of patient and FPE into standard therapy for schizophrenia should become obligatory. The Salford Family Intervention Project, the first five- to eight-year follow-up study of FPE for schizophrenia, concluded that the benefits persist over time In this study, 40 schizophrenic patients who had participated in a family psychoeducation trial during hospitalization, and had not experienced relapse at two years after discharge, were traced through case notes and hospital records. Percentages of patients experiencing relapse were compared for the family intervention group, a high-EE control group, and a low-EE control group, at five and eight years after discharge. At both time periods, there were significantly fewer relapses in the family intervention group than in the high-EE group. The number of relapses in the low-EE control group was lower than in the high-EE control group, but just failed to reach significance. The authors concluded that the benefit of FPE and the predictive power of EE are both sustained over eight years (Tarrier, Barrowclough, Porceddu, and Fitzpatrick, 1994).
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Another randomized-controlled study investigated whether a 24-week needsbased cognitive–behaviorally oriented family intervention led to improved profiles of patients with schizophrenia after a five-year follow-up period. The investigators found that 86.7% of control participants relapsed compared with 53.3% in the experimental group. Survival analysis indicated that the relapse rate was 2.5 times higher for patients in routine care than for those receiving family intervention (Sellwood, Wittkowski, Tarrier, and Barrowclough, 2007). Veltro et al. (2006) reported a study of 24 Italian community mental health center patients with schizophrenia randomly assigned to individual FPE or standard care. At one year follow-up, FPE produced significant improvements in self-care and independence skills, fewer positive symptoms, and lower family burden. At 11-year follow-up, patients in the FPE group were less frequently hospitalized than the standard care group, and more likely to be in contact with mental health services. An overview of studies conducted during the most recent decade (1997– 2007) pointed out that these were conducted in more real world settings than the older body of research. Maglinao and Fiorillo (2007) reviewed studies with minimal exclusion criteria. They included patients with a wider range of diagnoses, used a study protocol very close to usual practice, allowed concomitant treatments, and examined a broader range of relevant outcomes. They found that FPE reduces patients’ hospitalizations and relapse rates “even when provided in routine settings to samples of unselected patients, and/or by professionals who had received a brief training in their use. The effects of these interventions . . . are much more evident when the control group receives standard care . . . and tend to be weaker when controls receive intensive individual integrated treatment” (p. 32). The reviewers indicated that enriched individual treatments are probably as effective as family interventions, but they are more costly. The data from family interventions confirm that FPE has positive effects on the patients’ social and personal functioning, but that the positive effects on patients’ clinical status and disability tend to disappear over time. Booster sessions for families were recommended.
DOES LENGTH OF TIME OF FAMILY INTERVENTIONS MATTER? Masanet et al. (2007) have pointed out the field’s continuing interest in the appropriate length of time that family interventions should last. They note that in all the earlier experimental studies, the relapse rate was seen to increase considerably after the end of the intervention. In most of the tabular presentations of well-researched programs showing positive outcomes, durations have ranged from six months to a high of 48 months (for McFarlane et al., 2003), with a modal 24 months. Yet, five-year follow-up studies have shown significant long-term effects for interventions as low as six months
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(Sellwood et al., 2007). Falloon’s (2003) review has indicated that family interventions may need to extend for as long as 12–18 months in order to sustain lasting results. Johnson’s (2007) minimum figure is six months. The Patient Outcomes Research Team (PORT) study (Lehman and Steinwachs, 1998) recommended a nine-month minimum. The time frame may, of course, depend on the length and frequency of the sessions. But there are many other factors, including, in real world settings, the stability and commitment of both the training staff and the families themselves. Optimal length may be related to whether the intervention is offered for very ill patients in hospital settings, or for families of patients stabilized enough to live in the community. It appears, however, that across a range of time frames, salutary longterm outcomes may be apparent many years after the end of a family intervention. In their review of current studies, Magliano and Fiorillo (2007) noted that interventions varied from 12 to 48 sessions, provided weekly to monthly, for six to 24 months. They point out that no study has compared the effects of FPE in terms of length of time, or degree of intensity, so the best means of exposure still needs to be clarified. In this chapter we have attempted to flesh out some of the major studies represented in the large research overviews of FPE discussed in the preceding chapter. The earlier studies focused on schizophrenia. Research on FPE for major affective disorders is discussed under that heading. The studies are generally presented in historical sequence as new models or adaptations developed. Much of the early work was done in the United Kingdom at the London Institute of Psychiatry and University of Manchester, continuing with current applications and a massive training program initiated by faculty and researchers at the University of Birmingham. As indicated in the previous historical background section, FPE largely evolved from the research on EE and original FPE research was limited to high-EE families. These were considered a high-risk group for patients. The original work in London compared FPE and a relatives group with standard care and found a significant reduction in patients’ relapse, although at two-year follow-up, the group differences had disappeared. However, it was found that patients in families assigned to any type of social intervention had a significantly lower relapse rate than patients who were offered no help for families. Subsequent research at the University of Manchester developed a needs-based model of cognitive–behavioral intervention based on families’ self-assessed needs and problems. In contrast to the London selection process, interventions were also offered to low-EE families. In a randomized controlled study, a treatment group receiving needs-based FPE was contrasted with a control group offering family support alone. Specific problems were identified by the treatment families and the intervention was determined by caregiveridentified needs. The needs-based group received problem-solving techniques, cognitive–behavioral family interventions, and individual cognitive–behavioral interventions for patients with psychosis. At six month follow-up and subsequent
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follow-ups, there was a significant reduction in major needs and number of problems of the needs-based group vis a vis controls, although distress and burden scores in both groups remained constant. Seminal programs in the United States evolved at the University of Pittsburgh, University of California at Los Angeles, and the University of Southern California. The original work in Pittsburgh focused on reducing high EE in families, and a family therapy approach involved connection, a survival skills workshop, and a re-entry and application phase to maintain patients in the community after hospitalization. Work and social adjustment, and maintenance phases focused on continued stabilization, increased effectiveness of family processes, and decreased reliance on therapeutic resources. In the first year and follow-up, there was a significant reduction in relapse rate of patients receiving FPE compared with patients receiving pharmacotherapy alone. The Behavioral Family Therapy of Ian Falloon and associates focused on education, improved communication, and problemsolving techniques. Research indicated that patients who received only individual therapy were significantly more likely than those receiving family interventions to experience a major episode, and to have longer duration of hospitalizations. Family-treated patients showed significantly less behavioral impairment or selfneglect, and greater medication adherence at nine month assessment. In a multi-site NIMH study, Schooler et al. (1997) studied the impact of dose reduction and family treatment on relapse and re-hospitalization in a 3 × 2 design. Outpatients with schizophrenia were randomized to one of three double-blind medication dosage levels (standard dose, continuous low dose, or targeted, i.e., only when symptomatic) and one of two family treatments (supportive or BFT). Results showed that only targeted medication increased hospitalization, and there were no differences between family treatments. In the New York State Family Psychoeducation study, family members of 172 patients with schizophrenia were randomly assigned to single or multi-family group (MFG) FPE at six public hospitals for two years of treatment. At both twoand four-year follow-ups, MFGs were significantly more effective, with the group format resulting in significantly lower relapse rates than the single-family format. Many other studies have confirmed the efficacy of the multi-family model (see McFarlane, 2002). The OTP of Ian Falloon and associates continues as an international collaborative group to promote the routine use of EBPs for schizophrenia in clinical facilities, including FPE. Large sample studies indicate the efficacy of these bundled optimal treatments. In a study focusing on FPE alone, 34 clinicians were trained in the Falloon model, which was then applied for six months in 17 mental health centers in Italy for family members of patients with schizophrenia. At six months, there was significant improvement in patients’ clinical status and social functioning, and significant reduction of family burden (Magliano et al., 2006).
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FPE for major affective disorders includes the Family Focused Treatment (FFT) for BD developed by Miklowitz and Goldstein (1997). In content, FFT is very close to the general model of psychoeducation previously described, involving education on etiology, treatment, and illness-management skills within the vulnerabilitystress paradigm. Crisis management, communication, and problem-solving are standard, but also dealing with suicide attempts and substance abuse. Research findings in randomized controlled trials indicated significantly fewer relapses, symptom reduction, and better medication adherence in patients whose families received FFT. A final section on long-term effects showed positive effects at two- and seven-year follow-ups in the Munich Psychosis Information Study in Germany. In the Salford Family Intervention Project in the United Kingdom, an eight-year follow-up showed significantly fewer relapses among patients receiving family interventions. A study of 24 Italian community mental health centers at 11-year follow-up showed that patients in a group receiving FPE were less frequently hospitalized and more likely to maintain contact with services. An overview of the most recent studies, conducted in more real-world settings with samples of unselected patients, found that FPE reduces relapse and re-hospitalization rates. However, despite the salutary long-term effects cited earlier, Masanet et al. (2007) had pointed out that in all the earlier experimental studies, the relapse rate was seen to increase considerably after the end of an FPE intervention. The chapter ends with a discussion of the field’s continuing interest in the appropriate length of time that family interventions should last. Magliano and Fiorillo (2007) noted that no study has compared the effects of FPE in terms of duration or degree of intensity. Hence, the minimal length of time required to establish FPE as an EBP has yet to be confirmed by all researchers.
6 E A RL Y I N T E RV E N T I O NS prodromal, children, and adolescents
Recent years have seen the merger of family psychoeducation (FPE) with other evidence-based practices (EBPs) in a variety of contexts. McFarlane (2002), whose extensive research demonstrated the value of multi-family groups, has incorporated FPE in preventive interventions with young people showing prodromal signs of schizophrenia. McFarlane began the Portland Identification and Early Referral (PIER) Program in Portland, Maine, in 2000, working with communities in Southern Maine to identify cases of adolescents and young adults manifesting potential signals of later schizophrenia—increasing social isolation, declining school performance, suspiciousness and withdrawal, confused thinking, possible auditory hallucinations, etc. Up to 17 school districts in greater Portland are involved, as well as health-care workers; however, no program evaluation studies have been published as of yet. In 2007, with a $12.4 million grant from the Robert Wood Johnson Foundation, plans are to add four new sites of 400,000 population each—in Sacramento, California, Ypsilanti, Michigan, Salem Oregon, and Glen Oaks, New York (Schmidt, 2007). Patients in the PIER program are given low-dose medication and counseling aimed at eliminating stressful situations that could trigger psychotic reactions. Key psychosocial interventions are FPE and social networks designed to keep patients in school. These elements are found in most but not all the early intervention attempts that began at the end of the 20th century in the work of investigators such as Thomas McGlashan and Ian Falloon, who was not only a leading pioneer of FPE, but also of early interventions for at-risk adolescents. However, administration of medications to young adolescents is a continuing source of disagreement in the field. Schmidt (2007) cited Anthony Lehman, Chair of Psychiatry at the University of Maryland, as warning against using medication
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during early prodromal stages unless a psychotic break seems imminent, and stipulating that decisions must be made on the basis of each individual case. In the prodromal interventions in Australia, McGorry is quoted as saying that “We would reserve medication for when it’s clearly indicated,” that is, when psychosis is evident (Schmidt, 2007, p. 977). In Australia, early interventions utilize psychosocial methods and omega-3 fatty acids (which may have mood-stabilizing effects) as frontline treatment rather than psychotropic medications. The prodrome of psychosis is now a logical target for early identification and treatment, both for the symptoms, and for risk of future psychosis. However, recruitment is particularly difficult and sensitive for both patients and families. Most of the target groups are adolescents, a period during which erratic behaviors are scarcely unusual. These behaviors are likely to be explained away as due to precisely that stage in life. The fear of diagnosis, of being acknowledged and labeled as even having the potential of a mental illness, keeps many individual and family members from taking advantage of offered services. Recruitment of prodromal patients may be fraught with difficulties, but eventually many will seek help. As McGlashan et al. (2007) note, prodromal status involves both actual and potential problems. The first is developing or worsening psychological symptoms and distress, for which they and their families seek help, and the second is the risk of even greater psychopathology and distress. The practitioner must both treat current distress and alert patients to their imminent potential for transitioning to psychosis or another mental disorder. Prodromal patients are recruited for treatment and clinical trials through active outreach to potential health-care oriented referral sources, such as general practitioners or school counselors. McGlashan et al. (2007) say that currently most help-seeking prodromal patients make their way to study centers rather than specialized treatment clinics. In a Prodromal Clinic, they undergo an intake evaluation, engagement, combined psychosocial treatments such as supportive therapy or sometimes cognitive–behavioral therapy, case management and stress management, and family-based treatment. FPE with prodromal patients is modeled on multi-family group (MFG) psychoeducation approaches with first-episode schizophrenic patients (McFarlane, 2001). It is formulated around the stress-vulnerability model of psychosis, and addresses several domains of risk factors. These include high levels of expressed emotion (EE) (hostile criticism, over-involvement) in families toward patients, high levels of stigma aimed at patients and families with resultant social isolation; and high levels of communication deviance “resulting in poor family focus and uncoordinated familial collaboration” (p. 721). Family intervention, usually begins when the patient is admitted to the study, involves family and patient together, and consists of four treatment stages: (1) engagement, (2) education, (3) re-entry, and (4) social/vocational rehabilitation. The engagement phase establishes rapport and consent of both patient
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and family. “The education phase is conducted via workshop sessions about the biological, psychological, and social nature of psychotic disorders and their management. Following the workshop, meetings begin twice monthly with the family and patent in the multi-group format. Content of sessions includes treatment compliance, stress reduction, modifying and mollifying life events, avoiding drugs and alcohol, and modifying expectation while patient and family are dealing with symptoms and their functional consequences. With time and better symptom control, the themes change to encompassing social and vocational rehabilitation” (p. 721). The authors reinforce McFarlane’s (2002) contention that much of the effectiveness of multi-family psychoeducation results from increasing the size of the patient’s and family’s social networks by reducing stigmatization and providing a forum for sharing similar problems and solutions. The many advantages of the MFG format are indicated in Table 5.5.
FIRST-EPISODE PSYCHOSIS Various medical centers are now offering family interventions for first-episode psychosis. An example is The Prevention and Recovery of First-Episode Psychosis (PREP) program at the University of Illinois Medical Center at Chicago. A multilayered treatment approach includes psychoeducation groups for patients and families along with cognitive–behavior therapy and substance abuse services, case management, vocational training, and research opportunities. In Australia, HOMES (Home-Oriented Management of Early Psychosis) is a home-based program for individuals presenting for the first time with a psychotic illness. At the Dandenong Hospital in Victoria, 31 patients considered suitable for home management were assigned to the HOMES program with an acute treatment phase ranging from 14 to 61 days, with a mean of 37 days. The primary outcome measure was avoidance of the need for hospitalization. Each visit entailed assessment of the person’s mental state; a physical examination; review of relevant events, behaviors, and interpersonal interactions; dispensing of medication; and psychoeducation. This proceeded in a semi-structured format with patients and families. “Illness education occurs continuously . . . and more complex information is gradually introduced and often repeated frequently repeated. The individual’s family are directly involved with the programme and important management decisions” (Fitzgerald and Kulkarni, 1998, p. 40). The research protocol was not based on random assignment, but rather assessment of the success of home-based treatment (22 out of 31, or 71%) and comparison of the 22 people who did not requite hospitalization with nine who did. Illness severity was not related to potential for home-based treatment, but rather to the level of clinician-rated family support and duration of untreated psychosis prior
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to treatment. The findings indicated a highly significant difference (p<.007) in the score of family support between the group successfully managed at home and the group subsequently hospitalized (Fitzgerald and Kulkarni, 1998). In two Scandinavian countries, multi-family FPE, based on the MacFarlane model was implemented for 147 young adults experiencing a first episode of psychosis, and their families. The Treatment and Intervention in Psychosis (TIPS) Project was carried out in four geographically-defined health-care sectors in Norway, and one in Denmark. Treatment involved antipsychotic medication, supportive psychotherapy, and MFG treatment. Family members were engaged in three stages: joining sessions, a multi-family educational workshop, and 90-minute MFG meetings every second week, organized around problem-solving. All group leaders had over 60 hours of training and monthly group supervision. Content was modified to center on families’ shock and denial when confronting first-episode psychosis, reframing expectations, reinforcing observational skills, and focusing on the stress-vulnerability model of symptom exacerbation. The authors noted that patients’ willingness to participate declined with age, perhaps with an increasing wish for independence or diminishing contact with families. Although no outcome data were offered, since the end of the TIPS project, there has been substantial expansion of MFGs in the project sites and in other Danish and Norwegian services (Fjell, Thorsen, Friis, Johannessen, Larsen, et al., 2007). In Zagreb, Croatia, utilizing a quasi-experimental design, an early-intervention team was compared with treatment as usual for first psychotic episodes. The team offered more structured psychoeducation, relapse prevention, and psychosocial interventions, including FPE. At three years, their patients were significantly more medication-compliant, and more likely to have returned to work or education. They were less likely to suffer depression, were less suicidal, less likely to relapse, and more likely to be living with their families (Agius, Shah, Ramkisson, Murphy, and Zaman, 2007).
FAMILY PSYCHOEDUCATION IN SERVICES FOR CHILDREN AND ADOLESCENTS Although FPE was developed primarily for families of adults with schizophrenia, this intervention is increasingly being offered to families of children with major affective disorders. In a review of evidence-based treatment specifically focused on bipolar disorder (BD) in children and adolescents, Young and Fristad (2007) reviewed four treatments that share a family-based psychoeducational approach and are adjuncts to medication. Family-focused treatment (FFT); The RAINBOW program; multifamily psychoeducation groups (MFPG); and individual FPE. FFT for adolescents was adapted from FFT for adults (Miklowitz et al., 2004). The basic components are psychoeducation, communication-enhancement
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training, and problem-solving training. The goals are to increase medication adherence, enhance adolescents’ knowledge of BD, enhance their communication and coping skills, and minimize psychosocial impairments caused by the illness. The family work aims to improve caregivers’ ability to cope and to decrease high EE, if this is a factor. During psychoeducation, the therapist teaches the family about adolescent BD, provides information about risk and protective factors, encourages the adolescent to chart her or his mood, and develops a plan with the family for relapse prevention. In communication training, families practice active listening, and in problem-solving, cognitive–behavioral strategies are taught to develop solutions to family conflicts. Miklowitz et al. (2004) reported an average of 38% reduction in manic symptoms and 46% improvement in manic symptoms at 12-month follow-up. The RAINBOW program was developed as an adaptation of FFT for children between eight and 12 years of age. This is essentially family-focused cognitive– behavioral therapy (CFF–CBT) for pediatric BD. There are 12 sessions with the child alone, parents alone, child and parents together, and parents and siblings, and all are actively engaged, According to Pavuluri et al. (2004), all family members receive a card with the RAINBOW ingredients listed, and they are encouraged to carry it or post it on the refrigerator as a daily mnemonic of required skills. The acronym stands for Routine; Affect regulation; I can do it! No negative thoughts and live in the “Now”; Be a good friend and balanced lifestyle for parents; Oh,. how can we solve the problem?; Ways to get support. The theoretical framework is based on: (1) the specific problems of children and families coping with BD; (2) a biological theory of excessive reactivity; (3) the role of environmental stressors in outcome. The RAINBOW acronym is also a reminder of colors associated with mood variability. A notable component, emphasized by Young and Fristad (2007), is the session with siblings in which they are encouraged to develop empathy and coping skills. There is also contact with school personnel to offer psychoeducation about BD and suggestions for school-based interventions. In an open trial of 34 children (mean age 11.3 years), patients showed significant improvements in bipolar symptom severity, aggression, ADHD symptoms, and global functioning compared to pre-treatment scores. High levels of treatment integrity, adherence, and satisfaction were achieved (Pavuluri et al., 2004; Young and Fristad, 2007). In their early work, the Ohio State University Psychoeducation Program for Childhood Mood Disorders, had developed two versions of a family psychoeducational intervention. One was a one-and-half-hour workshop for parents of children with any major mood disorder who were psychiatrically hospitalized, covering basic information about childhood mood disorders. “The second version was multi-family psychoeducation groups (MFPG), designed for outpatient children with any major mood disorder and their parents. MFPG initially was administered in six 75-min sessions in a manual-based, multi-family group format . . . Based on
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feedback received in our randomized, controlled pilot study, we expanded MFPG to eight 90-min sessions” (Fristad, Gavazzi, and Mackinaw-Koons, 2003, p. 1002). The MFPG consists of eight 90-min sessions with parents, with concurrent sessions for children with another therapist. MFPG focuses on educating families about the child’s illness and its treatment, decreasing EE, and improving symptom-management, problem-solving, and communication. MFPG is designed for children with BD or a diagnosis of major depressive disorder, dysthymic disorder, and depressive disorder not otherwise specified. In the group format, parents gain support and empathy from peers who are undergoing the same experience. Young and Fristad (2007) point out that for the children in the MFPG group, it is often their first opportunity to meet another child with a similar illness. The group format also enables in vivo practice of social skills and problem-solving strategies. Families are educated to become more involved members of their child’s treatment team, and to identify other needed services. They are provided with information about school services, special education options, and their child’s educational rights. Tailored to the audience, sessions for both parents and children include information on childhood mood disorders and their symptoms; medications; developing problem-solving and coping skills; symptom management, and improving non-verbal communication skills. A therapeutic technique called “Thinking– Feeling–Doing” focuses on increasing the parents’ and child’s insights into the connection between thoughts, feelings, and actions, and to improve their awareness of their own negative mood states. A vital component of the child sessions is the “tool kit” in which a child generates a list of pleasant and relaxing activities to choose from to help cope with or overcome a negative mood or interpersonal conflict. Research findings: In a pilot study, 35 families (children aged 8–11) were randomly assigned to either immediate treatment (IMM) in MFPG or a six-month wait-list (WLC) control group. IMM parents showed significantly more knowledge about mood disorders, improved family interactions, and improved ability to access appropriate services for their child in comparison to WLC parents. IMM children reported a significant increase in perceived social support from parents. However, there was no significant decrease in children’s mood severity (Fristad, Gavzazzi, and Mackinaw, 2003). At Ohio University, individual family psychoeducation (IFP) was developed as a single-family form of the MFPG intervention for families of children with BD who were unable or unwilling to participate in a group. The original IFP protocol consisted of sixteen 50-minute sessions, alternating between parent-only and childonly sessions. A “healthy habits” component was introduced to substitute for the group social skills practice in MFPG, focusing on healthy sleep hygiene, improving nutrition, and increasing exercise. This was considered important because BD can be affected by poor sleep habits, diet and exercise are often needed to offset
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weight gain triggered by some psychotropic medications, and exercise has proven beneficial for depression. Based on feedback from parents, the treatment protocol was expanded to 24 sessions; 20 are manual-driven, and four are “in the bank” sessions to manage crises or reinforce a particularly important topic for the individual family. Research findings: In a pilot study of IFP, 20 children with BD and their parents completed the original 16-session format. They were randomized to the IMM and WLC conditions. Despite some dropouts with concurrent reduction of sample size, children’s mood symptoms improved significantly following treatment, and gains were maintained for 12 months after IFP treatment. EE scores improved significantly more for IMM than WLC families (Young and Fristad, 2007). In Hamilton, Ontario, 31 adolescents aged 13–18 years receiving outpatient services and meeting criteria for major depressive disorder, and their families, were randomized to usual treatment or usual treatment plus FPE over a period of 24 months. Outcome measures were administered at two weeks, mid-treatment, post-treatment, and at three-month follow-up. The FPE was developed by the authors and manualized. The intervention consisted of twelve 90-minute sessions conducted in the home, involving all family members who agreed to participate. According to the authors (Sanford et al., 2006), the theoretical models were based on those used by Falloon, Mikowitz, and other FPE researchers. These were medical, patient education, stress vulnerability, communication, and coping models. The aims were to increase understanding of the experience of depression and its impact on families, to strengthen family communication, and to enhance effective coping, problem-solving, and management of crises and relapse. The intervention was in five phases, advancing from introduction to the therapeutic model, family assessment and goal setting, to education about clinical features and course of illness, to training in communication skills and family problem-solving skills. The usual treatment condition consisted of individual or group counseling and or drug therapy with supportive case management. Primary outcomes were measures of depressive symptoms with the Reynolds Adolescent Depression Scale (RADS); social functioning—Structured Social Adjustment Interview (SSAI); family functioning—Family Assessment Device (FAD); adolescent relationships with mother and father—Adjective Checklist (ACL); and parent-rated disruptive behaviors—Disruptive Behaviors Checklist (DBC). Secondary outcomes included adolescent global functioning on Children’s Global Assessment Scale (CGAS) and adolescent and parent satisfaction were measured on the Client Satisfaction Questionnaire (CSQ). Research findings: In social and family functioning (adolescent–parent relationships) the intervention group moved significantly further than controls toward more positive functioning and relationships. This was despite lower global functioning scores for the FPE group at baseline. Depression on the RADS score
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decreased during each three-month period in both conditions, approaching significance in favor of the intervention group (p<.052). There were no group differences for parent-rated disruptive behaviors. For the adolescent informant, significant improvements were found for relationships with both mother and father, peer relationships, and communication, and affective involvement. For eight of nine outcomes, there was a significant positive effect favoring the FPE group both at post-treatment and follow-up (Sanford et al., 2006). Utilizing a quasi-experimental design, McKay, Gonzalez, Quintana, Kim, and Abdul-Adil (1999) evaluated the effects of a 16-week MFPG comparing families of children with disruptive behavior with peer families receiving traditional individual or family therapy. The assessment focused on parental participation, changes in the child’s behavior after 16 weeks of involvement, and parents’ perceptions of effects of service use. The evaluation found that participation in the MFGs was related to higher rates of mental health service use and reduced dropouts from counseling and group treatments. In a study reported by Ruffolo (2005), 94 parents of youth with serious emotional disturbance (SED) participated in a randomized controlled trial of adjunctive MFPG. The multi-family intervention was titled the Support, Empowerment, and Education (SEE) group. The youth were part of intensive case management (ICM) programs that targeted children and adolescents with histories of inpatient hospitalizations or out-of-home placements. Their mean age at intake was 11.47 years, and the majority were males. The majority of parents were single, poor, and with unstable histories. The primary research question was whether ICM plus adjunctive MFPG for parents (ICM-SEE) was more effective than treatment-as-usual ICM for parents of children with SED to increase parental skills and supportive resources, and decrease child-behavior problems. The SEE intervention used a parent/professional leadership approach in a problem-solving framework. The model emphasized building social supports and increasing knowledge of children’s mental illness to foster parental empowerment. The group used McFarlane’s structured problem-solving format, but also encouraged questions and discussion. SEE met twice a month for a minimum of two hours each, but used an open-group process for attendance. Parents met for a minimum of six months, separately from their children. SEE used a structured group format with problem-solving/solution-finding activities, educational interactive segments, homework tasks, and skill-building activities, with brief time for informal socialization. The primary dependent variables measured at baseline, nine months, and 28 months were parental use of a social support network, parental problemsolving and coping skills, and children’s behavioral symptoms on the Child Behavior Checklist (CBCL) for youth aged 4 to 18 years. Research findings: For perceived social support, parents in both conditions had significantly more supportive resources over time, with no significant differences.
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For parental problem-solving/coping skills, there was a trend toward greater use of parent problem-solving and coping skills in the SEE group, but no significant group differences. With respect to children’s behavioral symptoms, youth behavior in both conditions improved significantly over time in global scores on the CBCL. In the ICM-only group, this was at the 0.05 level, and for the ICM-SEE group, at the 0.001 level. Further analysis indicated that for the ICM-SEE intervention group, clinical T scores on the CBCL decreased significantly on ten scales (internalizing, externalizing, withdrawn, somatic problems, anxious, social problems, thought problems, attention problems, delinquency, and aggression). In the ICM-only condition, there were only four significant changes, in externalizing, withdrawn, somatic problems, and aggression scales. The parents/caregivers viewed the SEE group experiences in positive terms and the format as critical to its success. One important item is that the participants indicated that the on-site child-care and transportation provisions were central to their participation in the group sessions. This is an important consideration for all research participants, particularly studies with families of young children. In summary, this chapter has focused on the application of FPE to prodromal interventions and those for children and adolescents with a diagnosis of SED. One example of the former is the Portland Identification and Early Referral (PIER) program in Maine, in which teachers and health-care workers in 17 school districts collaborate to identify prodromal signs of potential schizophrenia. The children or adolescents have been treated with low-dose medication and counseling, and key interventions include FPE and social networks designed to keep the children in school. Four new sites are being added to the Maine project. The prodromal treatment approach has evoked a controversy over early medication, which is further discussed, together with recruitment difficulties for early interventions. McFarlane’s (2001) multi-family model of FPE with first-episode schizophrenia patients, involving patient and family together, is described, together with the content of sessions. Crucially important in this intervention is reduction of stigmatization by expansion of the patient’s and family’s social networks. This is facilitated by the multi-family model. We go on to describe the integration of multi-family FPE with other treatments for first-episode psychosis in various sites, including the TIPS project carried out in different sectors of Norway and Denmark. Since the end of this project, there has been substantial expansion of early intervention multi-family groups in other services in Europe. Although FPE was developed primarily for families of adults with schizophrenia, it is increasingly being used with families of children with major affective disorders. The chapter presents a review of four family interventions in BD of children and adolescents. These are adjunctive to medication and share the basic components of FPE (Young and Fristad, 2007). The programs are described in detail in terms
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of their manualized content and goals, and the pilot testing that enabled them to develop appropriate models. Multifamily psychoeducation groups (MFPGs) were developed for both hospitalized and outpatient children with mood disorders and their parents, with children and parents receiving separate interventions. The models are described in some detail. Research that compared families receiving immediate MFPG treatment with a waitlist control found significantly more knowledge, improved family interactions, and greater ability to access appropriate service in the treatment group. Individual FPE treatment was also developed for families unable or unwilling to participate in a group, alternating between parentonly and child-only sessions. Materials on healthy sleep hygiene, nutrition, and exercise were substituted for the social skills practice in MFPG. Research on this model, comparing treated and waitlist families, found significant improvement in mood symptoms in the treated group. Another intervention is described involving adolescents with major depressive disorder and their families, who were randomized to usual treatment or usual treatment with manualized FPE. The treated group showed significantly more movement toward more positive social and family functioning than controls. The adolescents reported significant improvement in relationships with both mother and father, peer relationships, communication, and affective involvement. Other studies and research findings are described, indicating that multi-family FPE for parents was more effective than treatment as usual, or than traditional individual or family therapy, in terms of improving disruptive behaviors, relationships, and dropouts from counseling. In another study, targeting underprivileged youth with SED and their primarily poor, single parents, MFPG with intensive case management was compared with the latter alone. When MFPG was added, there was a significant decrease on ten behavioral symptom scales (internalizing, externalizing, withdrawn, anxious, delinquency, aggression, and social, thought, somatic, and attention problems) vis a vis only four significant reductions with case management alone. The interventions with parents of children and adolescents share some commonalities with FPE developed for adults, but obviously there are differences specific to a younger population. The forthcoming chapter deals with application of the basic FPE model, which was initially developed for schizophrenia and administered primarily to parents of adults, to other diagnoses, co-occurring disorders, and other caregiver groups.
7 D I VER S E D I A G N O S E S A N D SP EC IAL P O P U L A TI O N S
DUAL DISORDERS: MENTAL ILLNESS AND SUBSTANCE ABUSE The most recent population-based data indicate that in 2002, an estimated 8.4 million, or 48% of the 17.5 million adults with serious mental illness (SMI), had received treatment for mental health and substance abuse problems during the past 12 months. Younger adults, those with families, were more likely than older adults to receive treatment (Epstein, Barker, Vorburger, and Murtha, 2004). The role of families in helping dually diagnosed patients may include economic assistance and direct care (Clark, 2001), or effecting change through insights and strategies learned through psychoeducation. However, there are limited data on family psychoeducation (FPE) for persons with mental illness and substance abuse. In a review of 36 research studies on the effectiveness of integrated treatment for dually diagnosed patients, FPE is included but no information is offered on its content or effects (Drake, Mercer-McFadden, Mueser, McHugo, and Bond,1998). A later review of 26 controlled studies of psychosocial interventions for dual diagnosis, from 1994–2003, did not include family members as participants (Drake et al., 2001). A family psychoeducational program that specifically targeted dual diagnosis was developed by Mueser and Fox (2002). They pointed out that most dually diagnosed clients tend to have constricted social networks but many have regular contact with their relatives (Clark, 2001). Family work is important for reducing caregiver burden, and unless families are educated, they may inadvertently enable patients’ use of substances. Mueser and Fox developed a new program, Family Intervention for Dual Disorders (FIDD), adapting the stages of dual disorder treatment to family work. FIDD includes both single- and multiple-family group formats for all family participants. The single-family format, provided by a trained clinician, teaches
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the family information and skills needed to manage dual disorders and usually ranges from nine months to two years. Single-family work involves outreach and engagement, education, communication skills, and training in problem-solving for addressing substance use. Immediate goals are to establish a collaboration and buffer the relatives against negative effects of substance abuse, with longrange goals of decreased usage. The multiple-family group format is designed to provide validation and social support to families, offer further information about coping, and with no time limits, to maintain a connection with the treatment team. Content areas are fully described in Mueser, Noordsy, Drake, and Fox (2003). A small pilot study was conducted for six clients whose families completed one year of treatment. Families had an average of 29 single-family treatments, and four attended the multi-family group (MFG) regularly. Results indicated that clinicians could learn to implement the FIDD program, and that families could be engaged and treated successfully. Most clients demonstrated significant improvements in substance abuse over one to two years of treatment (Mueser and Fox, 2002). In the United Kingdom, Barrowclough, Haddock et al. (2001) reported results of integrated treatment including FPE for patients with schizophrenia and substance abuse disorder. They conducted a randomized controlled trial of routine care combined with motivational interviewing, cognitive–behavior therapy, and FPE in a comparison with routine care alone. In the family intervention, shared goals were generated and became the focus of conjoint patient/family sessions. The family intervention consisted of 10–16 sessions, some of which took the form of integrated family/patient sessions, and some of which involved family members alone. The final study consisted of 36 patient–caregiver dyads. Results: From baseline to follow-up at the end of 12 months, the integrated treatment program produced significantly greater improvement in patients’ general functioning, a reduction in positive symptoms and symptom exacerbation, and an increase in the percent of days of abstinence from drugs or alcohol.
OBSESSIVE–COMPULSIVE DISORDER (OCD) An 18-session multi-family behavioral family treatment (MFBT) program for OCD was conducted by Van Noppen (2002) at Brown University School of Medicine in Rhode Island, involving both patients and families. The major goals were to: establish a therapeutic alliance; provide psychoeducation on OCD and on exposure and response prevention; develop and implement a behavioral treatment plan; change family patterns of communication to reduce hostile criticism, over-involvement, excessive accommodation, and increase family problem-solving and support. Families would learn to devise and implement behavioral contracting, independent of a therapist. Other goals were to promote feelings of empowerment, altruism, and empathy, while decreasing feeling of isolation, stigma, shame, and impotence
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through the group process. A major goal was to teach OCD patients to utilize selfinstruction through exposure and response prevention, using homework assignments. The clinicians hoped to provide education to enhance insight into OCD and teach behavioral strategies to manage recurrence of OCD symptoms. The MFG format was selected with the assumption that “group modeling offers patients a normative context to refer to when challenging irrational thoughts and unreasonable behaviors long after the formal group ends” (Van Noppen, 2002, p. 110). The MFBT model for OCD consists of 12 sessions of group treatment and six monthly group sessions to consolidate gains and encourage independent problem-solving. Unfortunately, there are presently no outcome data available on this model.
BORDERLINE PERSONALITY DISORDER (BPD) At Mclean Hospital in Belmont, Massachusetts, Berkowitz and Gunderson (2002) have adapted MFG psychoeducation for families of persons with BPD. Their psychoeducational program for families, with format derived from the work of Anderson, Hogarty, Falloon, Leff, and McFarlane, is based on emerging concepts of BPD as a deficit model. These are their basic principles for the structure and goals of treatment: 1 BPD is characterized by deficits in affect and impulse control; dichotomous thinking; and intolerance of aloneness. 2 The deficits render the person with BPD handicapped but not disabled. They can be held accountable for their actions, although change comes slowly. 3 BPD is a chronic disorder characterized by recurrent crises. Crises may resolve and remit in the absence of stress. 4 Families can influence the course of illness in that they can either diminish the stresses that cause relapse or inadvertently create them. 5 Living with an ill relative has negative consequences for the family. “A major goal of current treatment is to diminish stress within the family independent of the goal of improving psychosocial functioning in the patient” (pp. 276–276). 6 Family members should use education to change their behavior. When they expect only the patient to change, they do not establish limitations and boundaries that would motivate the person to change. 7 Stress within the family may have its root alienation between the individual and family members. Alienation may be diminished by greater understanding of the internal experience of the patient, the affects and motivations that underlie behaviors typical or BPD.
Although this model does not focus on causation, Berkowitz and Gunderson note that “We do not exempt parents from any causal role in the etiology of the illness, as is typically done in psychoeducational approaches to schizophrenia,
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bipolar disorder, or major depression” (p. 276). They note that relevant to their neutral stance to parents is the high frequency with which BPD patients have reported physical, sexual, or emotional abuse by their parents. “Our neutral approach to causality often enables us to form an alliance with parents who are highly sensitive to criticism” (p. 277). Their neutrality presumably enables patients to participate without invalidating their expressed recollections, regardless of whether they are true or false, since the purpose is to facilitate mutual acceptance rather than to discuss causality. I have speculated about some of the reasons for such recollections among persons with BPD, and their effects on parents (Lefley, 2005). This is a disorder of affect dysregulation. People with BPD have great sensitivity to perceived maltreatment or abandonment by others, an unstable sense of self, and a tendency to idealize or demonize others in relation to personal need. Frustration and anger may begin in early childhood. Parents’ inability to yield to unfulfillable demands for attention may generate anger in the child and perceived or actual abusive behavior of parents who don’t know how to handle the neediness. Validation of a patient’s feelings is a hallmark of family psychoeducation in BPD, so patients’ perceptions and recollections cannot be rejected. Although families are taught to deal with irrational guilt, a neutral therapeutic stance toward patients and family members is essential. In structure, the MFG for BPD follows the same three-stage structure as in schizophrenia: joining, psychoeducation; and coping skills. Their guidelines for families are as follows: Goals—go slowly; family environment—keep things cool; managing crises—pay attention but keep calm; addressing problems—collaborate and be consistent; and limit setting—be direct but careful. Families are advised on ways to diffuse tension and improve safety when facing extreme rage and selfdestructive behavior, and limit-setting without creating undue hostility. Research findings: A small pilot study involving eight participating families in two MFGs, all with daughters with BPD, was conducted. Two outcomes were studied: patients’ level of functioning and families’ perceived burden. Findings: The first year of treatment showed a nonsignificant downward trend in self-destructive acts; 66.7% of participants felt that the MFG helped them to modulate angry feelings, and 66.7% felt less burdened. All families felt that the MFG improved their communication with their daughters, 75% at the level of “very great.” For parents, 91.6% felt that the treatment had helped them set limits, and 100% felt supported by the group. After one year of treatment, parents’ concerns about suicidality, unpredictability, and impulsivity diminished, while concerns about independence, resistance to suggestions, and separation increased. The authors felt that this reflected a diminished crisis orientation as the focus of the family moved to psychosocial functioning rather than crisis resolution (Berkowitz and Gunderson, 2002). The Gunderson/McLean program and two other FPE programs for families of people with BPD have been described by Hoffman and Fruzzetti (2007). In the
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Hoffman/New York Hospital program, Perry Hoffman and her associates developed a family intervention based on Linehan’s (1993) dialectical behavior therapy (DBT) for BPD. Their DBT family skills training (DBT-FST) “stresses the importance of education, skill development, and environmental change. Specifically, the program attempts to have family members interrupt the cycle of invalidation that may play a role in maintaining the borderline disorder” (p. 70). In contrast to the majority of FPE approaches, especially those in the United Kingdom, which focus on reducing high expressed emotion (EE) in family members, research has documented that for persons with BPD, high EE in the form of emotional over-involvement has positive effects longitudinally. The researchers felt that borderline patients view emotional over-involvement as caring and validation. This “suggests that borderline patients need the involvement of family as long as emotional validation accompanies any criticism or hostility” (p. 70). DBT-FST includes patients and family members in a group that meets weekly for approximately six-month sessions organized into two parts. The first part is didactic, focused on skill development; in the second part, the group applies DBT skills, manifesting how to effect a balance between acceptance and change. The Fruzzetti/University of Nevada, Reno family program was developed as part of a standard outpatient DBT treatment program for persons with BPD. The training team understood the utility of having family members as well as patients learn complementary skills and use similar language. “This family intervention program includes a core FPE component that may be delivered to individual families or in groups and may include the patient with family members or include only family members of the patient. Certain core skills from individual DBT are included, such as mindfulness and components of emotion regulation. In addition, family skills such as relationship mindfulness, accurate expression, validation, problem management, and closeness skills (for couples) and parenting skills (for parents) are included” (pp. 70–71). The basic premise of the training is that persons with BPD bring certain vulnerabilities, whether biologically based or learned, to react negatively to certain situations. These individuals are at greater risk when living in a family environment that invalidates their emotions, desires, and beliefs by simply ignoring or not understanding them, or with criticism or ridicule. Family reactions to BPD behaviors may range from harshly critical and judgmental to well-intentioned but terribly mismatched in comprehension. The premise of this approach is that helping families and patients find ways to express their experiences accurately will enable others to validate, and that being validated enables people with BPD to identify their emotions and wants and express them accurately. These transactional skills form the basis of DBT training with couples and families. Format may vary. It may be a couples group, a group for parents of adolescents or young adults, a mixedconstellation family group, or part of ongoing family therapy. Ongoing individual
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family sessions are also provided, enabling assessment and intervention for key issues such as suicidal behavior, self-injury, aggression, and drug use. The Family Connections (FC) program was developed by Hoffman and Fruzzetti within the National Education Alliance for Borderline Personality Disorders, an organization for family members of persons with BPD, as a family education version of DBT. The FC program was designed to provide education about BPD; teach families skills to manage their own negative reactions and those of their family members and build better relationships; and provide social support from peers who had lived through similar experiences. The curriculum includes mindfulness skills to manage negative emotions and reduce invalidating responses; family environment skills (understanding interdependence and reciprocity), validation, and problem-management. To date, most FC programs have been led by trained family members, as in NAMI’s Family-to-Family program. The authors state that FC is now available in more than a dozen states, in Canada, and in several European countries. Research findings: To date, two open trials have assessed changes in family members who participated in Family Connections. Forty-four participants representing 34 families completed the pre-, post-, and six-month post-baseline self-report questionnaires. Analyses using hierarchical linear modeling strategies showed significant reductions in grief and family burden. There was a significant increase in mastery from pre- to post-group assessment. These changes were maintained at six-months post-baseline (Hoffman, Fruzzetti, Buteau, and Neiditch, 2005).
EATING DISORDERS A study compared the effects of four months of family therapy (FT) vs. multifamily group psychoeducation (MFG) for anorexia nervosa for female adolescents (Geist, Heinmaa, Stephens, Davis, and Katzman, 2000). Patients severe enough to require hospitalization were randomly assigned to each condition. Subjects assigned to FT received eight 45-min sessions every two weeks for four months, involving the patient, parents, and siblings. The main objective was to encourage parents to take an active role in management of the disorder, also to strengthen the parenting couple through open direct communication. The therapy tried to distinguish eating disorders from normal adolescent strivings and family conflicts, while supporting the development of autonomy and maturation in the adolescent. Subjects assigned to MFG received eight sessions of FPE every two weeks for the four-month period. Adolescents and their parents attended 90-min classes led by a dietitian, an occupational therapist, and a psychiatric nurse. The group leaders presented information on the multi-determined nature of eating disorders, physical and psychological sequelae, weight regulation and consequences of dieting, normal adolescent growth, and physical and psychological consequences
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of starvation. The outcome measures, taken every two weeks, included body weight and psychosocial eating-disorder variables at baseline and four months after treatment. Findings: Significant body weight restoration occurred under both conditions, but no significant change was reported in psychological functioning by either adolescents or parents. The authors surmised that four months may be too short a time to produce measurable psychological change. However, they concluded that FPE is an equally effective and less expensive method than family therapy for providing family-oriented treatment for anorexia nervosa (Geist, Heinmaa, Stephens, Davis, and Katzman, 2000). A program in Japan assessed the effects of MFG on patients with eating disorders. Group sessions were held once a month for their relatives. The group met for five sessions that included both education and problem-solving. EE levels (measured by the Five-Minute Speech Sample), family function (measured by the Family Adaptability and Cohesion Evaluation Scales), the family’s mental state (measured by the Profile of Mood States) and the patients’ symptoms(measured by the Eating Disorder Evaluation Scales, Global Assessment of Functioning, and the Anorexic Behavior Observation Scale) were assessed at first and final sessions in this treatment group-only design. High EE decreased and families’ assessment of symptoms was significantly improved. Twice-repeated multi-variate analysis of variance showed significant improvements in the families’ overall mental state and emotional over-involvement, and in the patients’ anorexic behavior. The investigators suggested that MFG psychoeducation might help lower distress and encourage positive interactions in families, but realized that a randomized controlled trial is needed to further clarify the efficacy of this treatment (Uehara, Kawashima, Goto, Tasaki, and Someya, 2001).
BRAIN AND SPINAL CORD INJURY A group of 27 survivors of brain and spinal cord injury and 28 caregivers participated in MFGT for 12–18 months in monthly and bi-monthly meetings. Among the patients, 13 had spinal cord injury (SCI), 11 had traumatic brain injury (TBI), and three were survivors of both SCI and TBI. The stages of the intervention were as follows: (1) joining in individual sessions; (2) a group educational workshop; and (3) problem-solving groups aimed at managing physical and cognitive challenges and improving psychosocial functioning. The structure and format of the original MFGT model was maintained, but content was modified to accommodate the unique issues of SCI and TBI. In the educational workshop, neuroanatomy basics, aspects of physical rehabilitation, and typical family responses to injury were discussed. Medical complications, equipment issues, rehabilitation activities, adaptations needed in the home, work, and social environment, and managing a new
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self-image were some of the topics addressed. A variety of assessment measures were used, tapping quality of life, survivor and caregiver anger and depression, caregivers’ social support and coping styles, and family burden. Qualitative measures explored participants’ experience in the MFGT groups, perceived effectiveness, and information and coping skills learned in the group. Research findings: Survivors of injury reported a decrease in depressive symptoms and anger expression toward others, and an increase in life satisfaction. Caregivers reported a significant reduction in burden. The qualitative data indicated the normalization of the caregiving experience, the importance of socialization, and improvement both in knowledge about the injuries and a variety of coping skills. Caregivers described learning stress-management techniques, communication skills, and management of medical complications. They also learned strategies to improve self-care and set appropriate limits (Rodgers, Strode, Norell, Short, Dyck, and Becker, 2007).
SPECIALIZED PSYCHOEDUCATIONAL GROUPS FAMILIES OF VETERANS: VETERANS ADMINISTRATION PROGRAMS The Support and Family Education (S.A.F.E.) program was developed specifically for the Veterans Administration hospital system by psychologist Michelle Sherman (2006). It includes post-traumatic stress disorder (PTSD) and was developed as a 14-session professional curriculum for caregivers. Problem-solving skills, creating a low-stress environment, and coping with stigma are emphasized. A five-year evaluation showed high levels of participant retention and satisfaction. Attendance was positively correlated with understanding mental illness, awareness of resources, ability to engage in self-care, and reduced caregiver distress.
SPOUSES OF PERSONS WITH MENTAL ILLNESS Mannion, Mueser, and Solomon, P (1994) have pointed out the dearth of resources available for spouses of persons with SMI. They are not always comfortable in NAMI groups, which tend to have more parental than spousal caregivers, and their burden tend to be different from those in other relationships. In a study of spouses of depressed patients, Fadden, Bebbington, and Kuipers (1987) found that female caregivers experience more burden than males. Burden is especially high if the wife has become the breadwinner while running the household and often acting as a single parent. Her role may become an insult to the husband’s self-esteem and his resentment at his own incapacity may interact with the illness in explosive ways. FPE was developed largely for schizophrenia, and a disproportionately low number of persons with this diagnosis have been able to maintain stable partnerships over time. In traditional agrarian cultures, where FPE is not readily available,
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people with schizophrenia are five times more likely to marry than in the industrial west (Hopper, 2004). People with bipolar disorder (BD) are much more likely to marry, so FPE must be adapted to spousal concerns. The family-focused treatment (FFT) of Miklowitz and Goldstein (1997) at UCLA has been the major model to specifically tailor its approach to spouses of patients with BD, and their research has been previously described under Model Programs. However, there are many married couples who would profit from the briefer educational models, and Mannion, Mueser, and Solomon (1994) have specifically addressed this need by designing psychoeducation for spouses under the auspices of the TEC network of Southeastern Pennsylvania, previously described. Noticing a high drop-out rate of spouses from the general FPE group, they invited all spouses to join a task force that would collaborate on adapting the general family workshop to the special needs of “well-spouses.” In a series of meetings, they then designed a 10-week two-hour group intervention specifically for spouses or partners in committed relationships. In addition to information relevant to schizophrenia spectrum and affective disorders, they adapted for spousal relationships the skills needed for communications, problem management, limit-setting as a partner, managing violent and disruptive behaviors, financial issues, and helping children cope. Research findings: In pre-post analysis of this treatment group-only study, significant improvements were found in the well-spouses’ knowledge about the illness and coping strategies, personal distress, and negative attitudes toward the ill spouse, both at the end of the three-month intervention and at one-year follow-up (Mannion, Mueser, and Solomon, 1994).
YOUNG PARENTS WITH MENTAL ILLNESS AND THEIR CHILDREN Government surveys indicate that among women with a lifetime prevalence of psychiatric disorder, 68% are mothers. Among men, 54.5% are fathers. For adults with non-affective psychoses, the prevalence of parenthood for women is about the same, and is slightly higher for men (Nicholson, Biebel, Katz-Leavy, and Williams, 2004). Although many of their children may have non-parental caregivers, more and more people with SMI are living in the community and fulfilling parental roles. Yet, with few exceptions, there is little in the literature to suggest that their needs, or their children’s, are being met. Beardslee et al. (1997) developed an intervention to address the needs of families in which one or both parents suffer from an affective disorder. Targeting the needs of children between the ages of eight and 15 years, they developed and compared two standardized FPE preventive interventions. The families were randomly assigned to either a clinician-facilitated intervention (CFI), which consisted of six to 10 sessions for parents and children, or two lectures attended only by
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the parents. Parents in the CFI experienced a number of specific behavioral and attitudinal changes, including increased understanding of their own or their spouses’ illness and/or a greater focus on their children and increased understanding of their children. Sustained effects of the intervention were reported 1.5 years after enrollment. Family Options is a new family-centered, strengths-based program for families living with parental mental illness. The program was developed in a communitybased psychosocial rehabilitation center in central Massachusetts. Implementation of the program is now being studied by the Center for Mental Health Services Research at the University of Massachusetts Medical School. The researchers state that one focus explores conditions necessary to shift the organization’s paradigm of working with adults (the parents with mental illness) to working with their families (Woolsey and Biebel, 2007). The SAMHSA/CMHS funded research is now studying five programs in the United States that are serving a parent with mental illness, providing support for them and their children and teaching parenting skills. See Hinden et al. (2002) in Appendix for resource information. The Family Services of the Training and Education Center (TEC) of Southeastern Pennylvania offers a variety of workshops and groups for family members of people with mental illness, including a parenting program for parents with mental illness. Their training manual for these classes includes the following components: dealing with stress and preventing relapse, including helping your child cope with your mental illness; understanding child development; setting limits with respect; taking you children’s feelings seriously; controlling anger and conflict resolution; dealing with feelings about others caring for your children; and parenting from a distance. Many of these issues are specific to the needs of young parents who are either raising their children or coping with their children being raised by others. See Appendix for training manual. Although we have elsewhere reported findings on TEC’s family education, no research data are currently available on the parenting classes.
OLDER CAREGIVERS Future Planning for Relatives with Mental Illness is a program developed by NAMI of Maryland to help older caregivers prepare for the future care of relatives with mental illness. A workshop format is used to cover such topics as identifying a relative's basic needs for care and preparing a written plan to guide future caregivers. A staff person from the local department of mental health is invited to explain the public services available. The financial and legal arrangements (estate planning, wills, trusts, and powers of attorney), which must be arranged, are explained by an attorney specializing in special needs trust. Approximately 500 individuals have participated in these workshops to date (Agnes Hatfield, personal communication, November 20, 2007). This program was also adopted in Madison, Wisconsin.
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Although no data are available on the effectiveness of this program, the group was involved in research on elderly caregivers, 65 years and older, conducted in two states (Maryland and Florida). This study generated a picture of the needs of older caregivers, their problems in planning for the future of a loved one with SMI, and some suggested remedies (Lefley and Hatfield, 1999; Hatfield and Lefley, 2000). Their expressed needs have been a substantial component of the training. Additionally, a study of siblings’ future role was conducted to determine the extent to which the “well children” of aging caregivers could replace them after they were gone (Hatfield and Lefley, 2005). The need for special psychoeducation for both older caregivers and siblings was further manifested in a longitudinal study of families of adults with schizophrenia conducted by Jan Greenberg and his associates at the University of Wisconsin, Madison. Based on a survey of 136 siblings, the experience of growing up in a less cohesive family environment and threatening or violent behavior by the ill member were major contributors to positive or negative relationships in adulthood. The researchers felt that identification of dimensions of the sibling experience would enable mental health providers to engage siblings in the treatment process and help promote stronger bonds of affection (Smith and Greenberg, 2008). Certainly siblings would benefit from learning both the biological and psychological substrates of aberrant behaviors, so that they might develop greater understanding of the actions of their ill family member, and the normalization of their own reactions. In summary, FPE was largely developed for caregivers of adults with schizophrenia, and more recently, major mood disorders, and much of the family research has focused on caregiving parents. The current chapter deals with the application of FPE to a variety of other diagnoses and other family relationships. We begin with co-occurring mental illness and substance abuse. FPE has not been widely used with dual diagnosis, but a program specifically designed for these patients was developed by Mueser and Fox (2002). Their Family Intervention for Dual Disorders (FIDD) includes both single and multi-family formats. With individual families, a trained clinician teaches the family information and skills for a period ranging from nine months to two years. They can also participate in the multi-family group, which has no time limits. A small pilot study of six families participating in both conditions showed significant improvements in substance abuse over one to two years of treatment. In the United Kingdom, Barrowclough, Haddock et al. (2001), studying 36 patient–caregiver dyads, conducted a randomized controlled trial of routine care combined with motivational interviewing, behavior therapy, and FPE, compared with routine care alone for dual disorders. The integrated program produced significantly more improvement in patients’ functioning, reduced symptoms, and increased days of abstinence from alcohol or drugs. FPE models and research findings are presented for family interventions for the following conditions: OCD, BPD, eating disorders, and brain and spinal cord injury.
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The chapter then turns to FPE programs for specialized groups, including families of veterans, spouses of people with mental illness, young parents with mental illness and their children, and elderly caregivers of adult children with mental illness. Research findings on the concerns of older parents, and the role of siblings in subsequent caregiving, are presented and discussed. It is clear from this presentation that most of the studies on disorders other than schizophrenia, and on discrete participant groups, do not fulfill the stringent evidence-based practice (EBP) criteria described in the introductory chapter. However, they have their own usefulness for practitioners and students interested in other diagnostic and caregiver groups and suggest areas where further research is needed. In the following chapter, we deal with international and cross-cultural studies, including both uniformities and variations in content. The focus turns to issues that may arise in administering FPE not only for specialized populations, but for families living in other mental health systems and perhaps subscribing to different cultural norms.
8 I N T E RN A TI O N A L A N D CR OS S - C U L TU RA L S TU DIES uniformities and variations
In this chapter, we present a sample of international studies, and a few studies that primarily focus on ethnic minorities within the United States. Some cultural variations are to be expected in the form and content of family psychoeducation (FPE), but there seems to be substantial uniformity in its basic elements. Most offer the basic content of education about specific mental disorders, together with illness management and problem-solving techniques. Johnson (2007) has stated that outcomes have been much the same in all countries, and cites FPE research in the following nations: Australia, China, Denmark, Germany, India, Ireland, Italy, Japan, Norway, Spain, Sweden, the United Kingdom, and the United States. Contemporary studies from some of these countries, and others, are described in the following paragraphs. Although most outcomes were positive, there are a few negative outcomes. Unexpectedly, these appeared more often in a few American and European studies rather than in more distal cultures such as China. This may have been due to the exceptionally well-designed and rigorous research coming from that part of the world. There is limited knowledge of potential differences among ethnic groups in countries with large numbers of minority populations. A study of psychoeducation for low-income, immigrant, predominantly Mexican-American families produced negative findings and is described in the following paragraphs. In discussing psychoeducational interventions for African-American, Asian-American, and Mexican-American families, Jordan, Lewellen, and Vandiver (1995) recommended attention to the following issues: individualistic versus group orientation (e.g., a preference for extended family, multi-family format); length of treatment, and culturally appropriate content and leadership (e.g., differential styles of egalitarianism and authoritarianism in conveying information). However, it is unlikely that
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these strictures have been incorporated in psychoeducation for minority groups, nor is it known whether they are generalizable across groups that may vary widely in acculturation and in sociocentric norms. Special programs for different ethnic communities have been developed in several English-speaking countries. In the United Kingdom, the Meriden West Midlands Family Programme has adapted its program for Black and Asian families. New York State currently has a Family Psychoeducation Training and Evaluation in Three Diverse Communities project, funded through Substance Abuse and Mental Health Services Administration (SAMHSA) and Center for Mental Health Services (CMHS). At this writing, they are in the process of adapting FPE resource kits for families of persons of African-American, Chinese-American, and Hispanic-/ Latino-American descent with mental disorders. These are very comprehensive manuals and implementation kits, with content specific to each culture. Family assessment instruments, fidelity measures, and a cultural competency assessment scale are ancillary tools. Bae and Kung (2000) developed a family intervention model for Asian-American families of patients with schizophrenia. Their five-stage model, which does not seem to differ substantially from classic FPE models, consists of preparation (building a therapeutic alliance); engagement (including collaboration with community leaders, negotiation of service goals, and concrete help); psychoeducational workshop (information and survivor skills); therapeutic stage, with individual family sessions, supplemented by a multi-family support group; and an ending stage, with ongoing maintenance contacts and consultations. Culturally appropriate treatment such as home-based interventions, collaboration with indigenous healers, and help with immigration issues are included. An example of culturally appropriate FPE for Hispanic families is the University of Miami’s Culturally Informed Therapy for Schizophrenia (CIT-S) project directed by psychologist Amy Weisman de Mamani and funded by the National Institute of Health. This family intervention, now in progress, involves fortifying a strong sense of family unity and utilizing cultural and spiritual beliefs that may help families conceptualize and come to terms with the illness, in addition to education about the illness and teaching effective communication and problemsolving skills. CIT-S is a 15-session treatment program aimed at creating supportive and knowledgeable home environments. There are three basic segments: (1) Family Collectivism aims at fostering as strong sense of family unity so that family members view themselves as a team working toward a common goal; (2) Education is based on the work of Falloon, Boyd, and McGill (1984) and Miklowitz and Goldstein (1997), with special attention to the role of high expressed emotion (EE) and attributions; (3) Spiritual Coping aims at helping participants explore and tap into the spiritual beliefs and values that may help them productively cope with the illness. “CIT-S is expected to result in lower rates of high EE, increased perceived
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collectivism and family cohesion, and the use of more adaptive religious, spiritual, and philosophical coping mechanisms” (Weisman, Duarte, Koneru, and Wasserman, 2006. 183). A successful intervention with new immigrants in Australia was reported by Bradley et al. (2006) who compared consumers and family members who were randomly assigned to multi-family FPE for non-English-speaking Vietnamese families, English-speaking families, or to standard care. Participants received 26 sessions for 12 months provided by staff trained by McFarlane. Outcomes were measured immediately after treatment and 18 months later. The multiple-family group had significantly lower relapse rates than the standard care group (12% vs. 36% at 12 months; 25% vs. 63% at 30 months). There were equally beneficial outcomes for both English- and Vietnamese-speaking families. An unsuccessful intervention with new immigrants was reported by Telles et al. (1995) in the United States. Working with low-income, unacculturated Hispanic-American families, primarily Mexican or Central American, Telles and her colleagues compared the Behavioral Family Therapy (BFT) of Falloon, Boyd, and McGill (1984) with traditional case management. Patients with schizophrenia and their families were randomly assigned, and both treatments were conducted in the clinic setting, in Spanish. In both conditions, patients were seen weekly for the first six months, every two weeks for the next three months, and monthly for the last three months. BFT consisted of patient–family education about schizophrenia, and training in communication and problem-solving skills. Socio-culturally appropriate translations and adaptations of the educational and instructional materials were derived from a pilot study and consensus among the bi-cultural clinicians. Individual case management involved goal-oriented supportive psychotherapy sessions with the patient only. Findings: The level of patient acculturation appeared to be an important factor influencing treatment outcome. Among patients who were below average in level of acculturation, BFT patients had poorer outcomes at year one on numerous subscales of the Brief Psychiatric Rating Scale (BPRS) (Overall and Gorham, 1962) in thought disturbance, anergia, global BPRS severity scores, and in global level of functioning. However, patients who were above average in acculturation level showed a reversed, but non-significant pattern of treatment effects. Overall, the authors state that the efficacy of the two types of treatment did not differ very much if one considers the sample as a whole. However, among least acculturated patients, those on BFT had significantly poorer course and outcome than those receiving case management. The authors concluded that the benefits of BFT are questionable for culturally diverse populations. “It may even be that a highly structured, interactive intervention programme, which includes specific directives and exercises that are culturally dystonic, is experienced as intrusive and stressful. For example, various traditionally minded and unacculturated subjects expressed discomfort about communication exercises . . . that involved establishing
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eye contact or expressing negative feelings; in speaking to an authority (paternal) figure, this was considered disrespectful” (Telles et al., 1995, p. 478). Lopez et al. (2002) have suggested strategies to adapt family interventions for Hispanic patients with schizophrenia. These include involving the extended family, developing trust (confianza), manifesting respect for family elders, and discussing folk concepts of mental illness. These target issues are similar to those mentioned by Weisman, Duarte, Koneru, and Wasserman (2006) in their model of FPE. However, it is of interest that Weisman and her group also seem to focus on reducing EE as part of their intervention with Hispanic families. Telles et al. (1995) state that an unexpected finding was the remarkably low level of EE among their sample of rural immigrants. This finding of low EE is consistent with other research on Hispanic families (Weisman, Lopez, Karno, and Jenkins, 1993) and highlights the importance of acculturation as a factor in how best to educate families. In Los Angeles, California, Kopelowicz, Zarate, Smith, Mintz, and Liberman (2003) reported on a study to evaluate the effectiveness of a skills-training program aimed at teaching disease management to Latino patients with schizophrenia. Their main cultural adaptation was simply including families, so 92 Latino outpatients and their relatives were randomly assigned to three months of skills training(ST) versus customary care (CC), and followed for nine months. “The skills training approach was culturally adapted mainly by including the active participation of key relatives to facilitate acquisition and generalization of disease management skills into the patients’ natural environment” (p. 211). The key relatives consisted on 61 mothers, 12 fathers, three siblings, three offspring, 10 spouses, and three ex-spouses. Patients were assigned to groups of six which met for 90-min sessions four times a week for skills training, focusing on medications, and symptom management and problem-solving. Family members were included in weekly “generalization” sessions with skills-training for relatives, aimed at their becoming coaches and generalization agents. The comparison group received treatment as usual. Results: There was a significant main effect for the treatment group on Medication Management and Symptom Management skills acquisition, for both learning and generalization, also higher level of functioning, and lower relapse rates. In the ST group, only 5.1% were re-hospitalized, versus 22.2% in the CC group, which the researchers attributed to generalization and utilization of disease-management skills. There were no significant differences in quality of life or caregiver burden. However, Kopelowicz et al. (2003) characterized all the relatives in their study as generally low EE, with low caregiver burden and positive expectancies for the future. This is consonant with previous studies of Latino families, but at odds with currently reported research findings of high psychological distress among Latino family caregivers of adults with schizophrenia, with 40% at risk for depression (Magana, Garcia, Hernandex, and Cortez, 2007). Training of caregivers
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to facilitate skills generalization is clearly desirable, for patients and families alike, so more research in this area is clearly required. Whether or not culturally-adapted content leads to better outcome has yet to be determined. Most of the rigorously controlled international studies have been done in the English-speaking countries, several European countries, and China. Most interventions have not varied significantly in presenting the core elements of FPE. At the end of this chapter, we describe several studies of family interventions adapted to Chinese culture. One model was fairly similar to those presented in Western nations. One adapted its model to Confucian values. Still another was distinctly different from most Western FPE. All of these interventions produced salutary effects, but with very different content and emphases. Most studies, both in the United States and elsewhere, essentially focus on shortterm interventions. Many are less than the minimal ten sessions suggested by Cuijpers (1999) or the minimal six months suggested by Johnson (2007). Here again, the issue remains one of sufficient time to produce significant effects on patients’ relapse or functional levels. Nevertheless, the published results do show some salutary effects in other dimensions. The following are a sample of European and Asian studies, and one from Latin America. Studies vary widely in sophistication and rigor, but they do indicate the spread of FPE across various parts of the world.
LATIN AMERICA (CHILE) With the objective of exploring the effectiveness of PFE in reducing family burden in a developing country, Gutierrez-Maldonado and Caqueo-Urizar (2007), randomly assigned 22 family caregivers to an FPE group and 23 to a control group. The latter offered a periodic meeting with staff to monitor effects of the medications. The study was based in a city of 195,000 inhabitants in the north of Chile. The FPE program was held once a week for five months, offering five modules for 17 sessions. These were: the family’s experience of schizophrenia; psychoeducation; skills to improve communication (with role plays organized around Chilean customs, eating habits, and activities); relatives’ self-care; and evaluation. Results: family burden decreased significantly in the FPE condition. There were notable beneficial effects on caregiver emotions (such as shame), behavior, and thoughts and improvements in social life. Treatment was equally effective in caregivers with lower educational levels. However, the intervention did not reduce fears about the patient’s future.
DENMARK Merinder et al. (1999) conducted a randomized study of the effectiveness of an eight-session psychoeducational intervention for patients with schizophrenia and
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their relatives in two community mental health centers in Denmark. Significant increases in knowledge of schizophrenia were found among both patients and relatives, and in satisfaction with families’ involvement in care. However, the authors noted that there were no observable effects on patients in terms of relapse, medication adherence, insight, psychopathology, or social functioning. In the Danish National Multicenter Schizophrenia Project, clinicians from three psychiatric centers established family groups for relatives of patients with first-episode psychosis. Eight educational sessions were devoted to symptoms, etiology, and course of psychosis; treatments, psychological and pharmacological; laws concerning confidentiality and coercion; home environment, with an emphasis on reducing EE; problem-solving; and information about organizations for patients and relatives, social pensions, employment opportunities, housing, and other issues related to community living. An evaluation of this treatment-grouponly study indicated that 95% of the relatives appreciated the education, but the highest ratings for learning went to: (1) the opportunity to listen to others with similar problems, and (2) the group leaders’ attitude toward patient and relatives (Buksti et al., 2006).
GERMANY The Alliance Psychoeducation Program (APP) was developed at the Department of Psychiatry, Technical University of Munich, Germany, as a brief intervention to be implemented in routine clinical treatment. The APP was developed in cooperation with consumers, family members, and health-care professionals from other institutions. It consists of “12 modules that cover symptoms and causes of schizophrenia, effects and side effects of medication, warning signs, contingency plan, psychosocial treatment, tasks of family members, alcohol and drugs and partnership and sexuality, manuals, workbooks, and flip charts are available for each module, and videotapes are available for several” (Rummel-Kluge, Pitschel-Walz, and Kissling, 2007, p. 1226). Separate groups for patients and family members were held once or twice per weeks, with two moderators. Multi-professional teams were trained to moderate in a one-day workshop. The groups met once or twice per week in sessions lasting 60–90 min. On average, patients participated in 7.5 sessions and family members in six sessions. Data are available for 407 patients and 92 family members from 23 hospitals in this treatment-group-only study. For patients, scores on a knowledge-of-illness questionnaire rose significantly. On the Medication Adherence Rating Scale (MARS), adherence also improved significantly. Among family members, knowledge of illness increased significantly. All participants, including professional moderators, reported high satisfaction with the program. The authors reported that the increase in knowledge and medication adherence resulting from
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the brief intervention were comparable to results of the much longer randomized controlled Munich Psychosis Information Project Study, described in Chapter 5. However, a seven-year follow-up of the larger study also found a highly significant reduction in patient-hospitalization days. Nevertheless, the authors concluded that the brief APP is feasible in routine clinical treatment after only a one-day training workshop (Rummel-Kluge, Pitschel-Walz, and Kissling, 2007). An earlier study in Germany by Hornung, Feldmann, Klingberg, Buchkremer, and Reker (1999) had incorporated FPE as “key person counseling” in a prospective, randomized clinical trial that also offered medication management training and cognitive–behavioral psychotherapy to 156 patients with schizophrenia, a control group engaged in structured free-time activities. At two-year follow-up, they found that only patients with a favorable prognosis and better social functioning seemed to benefit significantly from the intervention. At five-year follow-up, there were no significant differences between the treated and control groups.
THE NETHERLANDS Linszen et al. (1996) reported a study in which 76 patients with recent onset schizophrenic disorders were randomly assigned to an individual psychosocial intervention or to an identical intervention combined with behavioral family treatment. Patients were studied for 12 months of outpatient treatment following hospital discharge. Overall the relapse rate was only 16%, and adding the family intervention had no effect on relapse. Unexpectedly, patients in low-EE families relapsed slightly more often during the added family intervention.
SPAIN In a Madrid hospital, Canive et al. (1996) conducted six weekly classes of 90 min each for 63 patients and 99 parents of inpatients with schizophrenia. A control group (non-randomized) received treatment as usual. Mean knowledge scores increased significantly in the FPE group but there were neither significant group differences in patient relapse or re-hospitalization rates, nor in family burden or distress. Lopez (2002) points out several cultural differences of interest. Despite the negative findings, this study showed a high retention rate of families when compared with predominantly Anglo-Saxon families in FPE studies. Also, the number of weekly hours of contact between families and patients (62 h) was considerably higher than the minimum number of hours used to identify high family contact in much of the EE literature. There was a high level of participation of fathers. Compared with mothers, fathers were more optimistic about outcome and reported feeling less annoyed with the patient’s behavior. Canive et al. (1996) suggested
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that significant differences may exist between Spanish and Anglo families in terms of the quality of family interactions with their relatives with schizophrenia. Their findings suggested that FPE intervention need to consider differences in gender and family roles and underline the importance of engaging fathers in treatment. In another study, Montero et al. (2001) conducted a randomized controlled study comparing a relatives’ group (RG) with single-family behavioral family therapy (BFT), both offered as standard treatment in one catchment area in Valencia, Spain. Of a total of 87 patients and their relatives, 41 were assigned to the RG and 46 to single-family home BFT. The length of the active intervention was 12 months, and both groups began with two initial education sessions in which the patient participated. BFT at home included the patient and encompassed patient and family education, training in communication skills, and problem-solving techniques. RG began with two individual educational sessions, followed by open-group 90-min sessions attended only by relatives. The RG aimed at teaching problemsolving skills, reducing criticism and over-involvement, reducing social contacts between patients and relatives, expanding social networks, and lowering expectations. Results: Of the 87 cases, only 60% completed the full course of treatment. There was no significant difference in relapse rate. However, the “delusions” and “thought disorder” scores of patients in the BFT group had significantly decreased at post-treatment, whereas those in the RG group had not. Among BFT patients, mean medication dosage levels were significantly lower at post-treatment compared with baseline dosage, but remained stable in the RG group. Social adjustment showed significant improvement in both intervention strategies, but BFT produced significant changes in more areas than the RG, such as self-care, use of leisure time, household participation, interpersonal friction, and interest in getting a job. Both interventions reduced EE levels in relatives. Families of firstepisode patients were less likely to attend the multi-family group than the singlefamily condition. This might be expected. The need for individual attention may be primary in a family undergoing a first episode, as well as rejection of the possibility of a prolonged illness that would require group support.
ITALY We have reported under Model Programs and passim on a number of studies from Italy, most based on the Falloon or McFarlane models. This one specifically tried to assess two family intervention programs “in a non-Anglo-Saxon cultural context” (Carra, Montomoli, Clerici, and Cazzulo, 2007, p. 28). Of 101 relatives of patients with schizophrenia, 50 were randomly assigned to a weekly 24-session information group (IG) of behavioral family management; 26 to the information sessions
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plus a subsequent support-group program (IG+SG); and the waitlist balance to a control group in which patients received treatment as usual (TAU). Allocation was blind as to subsequent participation in a support group. The main aim was to assess 12-month and 24-month outcomes of the two modes of family intervention compared to standard community care in Italy. Primary outcome measures were hospital admission, relapse, treatment adherence, and employment status. For relatives, objective and subjective burden were measured, as well as the predictive utility of baseline clinical status and relatives’ EE levels in relation to outcomes. Results: Patient’s compliance with standard care was greater at 12 months in the IG condition compared with the TAU control. Reductions in high-EE levels were significantly more frequent in the IG+SG condition, but other clinical and family outcomes did not differ. “However, treatment benefits declined at 24 months, when baseline high EE was again predictive of patients’ admission and relatives were more vulnerable to objective burden. Baseline illness severity variables predicted a number of medium and long-term poor clinical outcomes . . . Effective family interventions for people with schizophrenia probably require continued administration of key elements or ongoing informal support to deal with the vicissitudes of illnesses” (Carra, Montomoli, Clerici, and Cazzulo, 2007, p. 23). Although the authors suggested that their results indicate the need to assess outcomes more internationally, their findings of continued family needs have been echoed in many other studies reported here, regardless of cultural context.
CZECH REPUBLIC A total of 120 patients were recruited upon discharge from two psychiatric hospitals in Prague. In site A (N = 86), FPE was offered to all patients with schizophrenia spectrum disorders, in site B (N = 34) no education was offered. At site A, a professionally-led, clinically-based short term eight-hour programme was offered ro relatives and patients, who participated in separate parallel groups of 8–10 participants in consecutive cohorts. Families received education based on a stress-vulnerability model. Families were taught to provide a safe, predictable, stimuli-controlled environment, and patients were given social-skills training. The program provided a combination of education about mental illness, family support, crisis intervention, communication, and problem-solving-skills training. Social networking was encouraged. Findings: At one-year follow-up after discharge in this quasi-experimental study, FPE participants had a significantly shorter average length of re-hospitalization than site B non-participants. The investigators stated that these findings, together with a high turnout of first-episode patients and positive responses of FPE participants to the training, suggest that involvement of the family in treatment in the early course of illness could positively influence health and social outcomes (Motlova et al., 2006).
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EUROPEAN COMMISSION STUDY (GERMANY, GREECE, ITALY, PORTUGAL, SPAIN, AND THE UNITED KINGDOM) During 2000–2004, the European Commission promoted research to look at the impact of training programs for staff professionals on implementation and effectiveness of FPE for schizophrenia in mental health centers in six countries (Germany, Greece, Italy, Portugal, Spain, and the United Kingdom). Each national center selected four mental health centers in which two professionals were randomly assigned to two different modes of training and to implementing an intervention. The results of the instruction (Magliano and Fiorillo, 2007) are discussed in Chapter 10 on training. Here we present the results of the intervention. A total of 55 patients and 118 relatives received FPE for one year. At follow-up, there were significant improvements in patients’ clinical status and social functioning. For families, there was a significant reduction in burden, and in their use of coercion and resignation as coping strategies. There was an increase in relatives’ positive communication with the patient, and they reported a higher level of professional support at follow-up than at baseline (Magliano et al., 2006).
SWEDEN Berglund, Vahlne, and Edman (2003) explored the effects of FPE on self-assessed family burden in 31 families of inpatients with schizophrenia. During the patient’s hospitalization, 14 families received BFT and 17 received conventional family support. Family burden and attitude were assessed on three occasions during the hospital stay in this quasi-experimental study. At discharge, self-reported family burden was significantly lower for the BFT families at discharge, and attitude toward continued caregiving was significantly more positive for the BFT families than the contrast families.
GREECE Tomaras et al. (2000) investigated two hypotheses: (1) whether FPE combined with individual psychosocial treatment is more effective than individual psychosocial treatment in improving prognosis in schizophrenic patients in high-EE families, and (2) whether FPE actually exerts its effects through reduction of EE. Forty patients from high-EE families were evenly assigned to individual psychosocial treatment, consisting of vocational and skills training, or to FPE plus individual psychosocial treatment. The family intervention comprise 13 group sessions. Patients were treated for 12 months and followed up for the next two years. In the FPE group, the relapse rate was significantly lower at one year (0 vs. 25%), but was not significantly different at two-year follow-up. Although relatives’ EE levels were
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not significantly affected by the intervention, high EE was a predictor of relapse, but not of hospitalization, over the two-year period.
TURKEY This quasi-experimental study investigated whether an FPE program for both patients and families would affect patients’ compliance with medication and outpatient appointments, relapse rates, and caregivers’ EE levels. The sample included 30 inpatients and their caregivers in two psychiatric clinics. In Group A, both patients and caregivers received FPE; in Group B, only the patients received psychoeducation. The patients’ program consisted of schizophrenia and its treatments, disease management and coping strategies, and development of an emergency plan. FPE added the effects of family attitudes on the course of the disease. Results: In Group A, the patients whose families received FPE were significantly more compliant with medications and outpatient appointment. Relapse in Group B was 46.7% vs. 20% in Group A. There was no significant difference in EE levels between the two groups, at onset or six months after the intervention (Cetinkaya Duman, Asti, Ucok, and Kuscu, 2007).
THAILAND This report assessed the effects of a one-day psychoeducational program for 91 caregivers of inpatients with schizophrenia. FPE consisted of a didactic session on schizophrenia, group discussion and communication skill-building. Significant improvement (paired t-test) was seen in pre-post mean scores of knowledge and attitudes (Worakul, Thavichachart, and Lueboonthavatchai, 2007).
JAPAN Zenkaren, the family organization of Japan similar to NAMI, was established in 1965 and has spurred the development of classes for families at various mental health facilities in Japan. A survey of these facilities found that between 1994 and 2001, the percentage of family support programs structured as psychoeducational had increased from 18.9% to 48.6%. However, in mental hospitals they found no change. The researchers indicated that medical fees must be established for FPE (Goto, 2003). In a pilot study of short-term FPE for relatives of patients with schizophrenia, with the aim of introducing this support program into standard care, 46 relatives of inpatients with schizophrenia attended three or four sessions of psychoeducation. Level of anxiety, distress, subjective burden, and EE were measured during and after attendance. Results: In this treatment-group-only study, both state
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and trait anxiety were significantly lower, subjective burden and distress significantly decreased on the sub-scales for family confusion (which had resulted from lack of knowledge about the illness and anxiety about the future). There were significantly fewer difficulties in relationships with the patients. Comparison of high- and low-EE families showed equal effectiveness, but reduction of subjective burden and depression was significantly greater in high-EE families (Yamaguchi, Takahashi, Takano, and Kojima, 2006). A cost-analysis of FPE for high-EE family members of patients with schizophrenia at high risk for relapse was conducted in a mental health facility in Osaka, Japan. Family members of a 30-patient FPE group were compared in this quasiexperimental study with a 24-patient control group with high-EE family members. The mean outpatient medical cost, duration of hospitalization, inpatient medical cost, and total medical cost during the follow-up period were compared. The costs in the FPE group were significantly lower than in the control group. The proportion of patients with a total medical cost greater than the median value was 23% in the FPE group and 54% in the control group. Conclusions: FPE is cost-efficient due to the prevention of re-hospitalization (Mino, Shimodera, Inoue, Fujita, and Fukuzawa, 2007).
CHINA Cultural uniformities and variations in presentation and content are most apparent in the copious research from China. Some family interventions in China, with powerful findings, have been based on content quite at variance with that in Western nations, while others, with equally positive findings, have modeled Western content. For example, Xiang, Ran, and Li (1994) reported on a controlled study to determine whether FPE would increase treatment compliance among psychiatric patients in three rural townships in China. A cohort of 77 patients was randomly assigned to FPE plus medications or medications only. There were 33 schizophrenic and three affective patients in the trial group, and 36 with schizophrenia and five with affective disorders in the control group. According to the authors, the FPE intervention “aimed to teach family members basic knowledge of mental diseases and their treatment, also to help family members identify and solve problems to increase their knowledge of mental health rehabilitation” (p. 545). Using workshops and monthly supervision, the rural Chinese intervention appeared to closely resemble the Western model. What was probably more culturally adaptive was the use of family visits, supplemented by general health education through the village wired radio network. Results: In the FPE group, highly significant differences from the control group were found in the following areas: increase in patients’ full treatment compliance, improvement in social functioning levels, improvement in
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clinical status, increase in the percentage of patients who could do some farm work or housework; and decrease in the percentage of families who thought the patients’ disorders were caused by ghosts or evil spirits and accepted them as a real disease (Xiang, Ran, and Li 1994). In other reported research, a psychoeducational program for families of patients with schizophrenia in five cities in China reduced relapse rates from 35% to 20% per year, and also demonstrated reductions in patients’ disability levels and in family burden (Zhang et al., 1993). Included was a study of first-episode patients (Zhang, Wang, Li, and Phillips, 1994). At the time of discharge from their first stay in a psychiatric hospital, 78 male schizophrenic patients were randomly assigned to a family intervention (FPE) group or a standard care control group and were followed for the next 18 months. “The family intervention consisted of both group and individual counseling sessions . . . that focused on education about the illness and on methods dealing with the patient” (p. 96). It appeared that the intervention closely followed the Western model of FPE. Results were a significantly lower rate of hospital readmission for the FPE group than in the control group (15.4% vs. 53.5%, p<.01). Among those who were readmitted, the mean period of non-hospitalization after discharge was significantly longer in the FPE group than in the control group (245 vs. 130 days, p<.01). The clinical status and overall level of functioning of patients who were not re-admitted were significantly better in the FPE group, and stratified analysis indicated that the family intervention and regular use of medication had independent and additive effects on the outcome. During the 18 months after the index discharge, patients who did not take medication regularly and did not receive the family intervention were almost eight times as likely to be re-admitted as patients who took medication and received the family intervention (Zhang, Wang, and Phillips, 1994). In a large-sample follow-up study with an experimental design, this research group reported their two-year experience in two cities, Jinan and Shanghai, China, with completed cases of 682 caregivers in the FPE and 366 in the control groups. The families in the FPE group received 14 lectures and five group discussions, with conventional services; the control group received conventional services only. Education included coping with psychotic behaviors, psychotropic medications and their side effects, supervision and care of psychotic patients, methods of social and vocational rehabilitation, promoting mental health of caregivers, also marriage and family plans for psychotic patients. Results: Compared with controls, patients in the FPE condition showed a higher rate of recovery and stabilization, a lower rate of exacerbation of symptoms, and a reduction in annual relapse and re-hospitalization rates, most at the p<.01 levels. Among the relatives, knowledge increased, family burden decreased, and psychosomatic health issues decreased for the FPE group compared with controls (p<.01 for all) (Zhang, He, Gittelman, Wong, and Yan, 1998).
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Nevertheless, some family interventions, also with impressive outcomes, seem to have deviated considerably from the Western model. A study by Xiong et al. (1994) seems to have focused on one culturally-appropriate aspect of the Zhang et al. (1998) intervention reported earlier. Seeking to initiate FPE for families of patients with schizophrenia, they surveyed the Western literature on various models of family interventions and discarded them as inappropriate for China. They reasoned that Western models were all based on goals of making the individual less dependent on the family and an independently functioning member of society. There was also the presumption of an overall mental health-care system that would provide ongoing services, a situation unavailable in China. Thus their family-based intervention became a very different model of FPE. They offered the following rationale: “The ultimate social goal of families of mentally ill individuals in China is to develop a sustainable family-based support system for a dysfunctional member. The cultural and legal obligations of parents toward disabled children continue until the child is married, when the responsibility is transferred to the patient’s spouse. The major goals for these parents are to (1) obtain stable employment for their child, (2) find a spouse for their child—often by minimizing the seriousness of the illness and offering a potential spouse (usually of lower social status) benefits such as housing . . . and financial assistance; (3) to encourage the young couple to have their own child as soon as possible as this both secures the marriage and provides someone to care for the patient in his or her old age; and (4) to prevent divorce, by giving financial aid and practical help to the spouse. Once the patient’s acute symptoms are under control, these issues become the major focus of the counseling sessions; the therapist assists patients and family members in their dealings with work sites, helps them negotiate the hurdles of marriage, educates them about the potential problems of pregnancy, and trains the patient to adapt to the demands of marriage and parenthood” (Xiong et al., 1994, p. 240). The idea of arranging a marriage for a person with mental illness and minimizing the seriousness of the disability would pose ethical problems for Western practitioners (see Lefley, 2002). They might also be uneasy with a targeted goal of having children mainly for the purpose of providing caregiving in the patient’s old age. Yet, this intervention was based on education that would facilitate fulfilling a culturally acceptable and pragmatically useful goal. In providing therapeutic case management and counseling, they undoubtedly enhanced the coping strengths of the families in question. What was the outcome? In a randomized controlled trial with three follow-ups, this family intervention in China had highly significant effects in lower proportion of re-hospitalization, shorter duration of re-hospitalization, longer duration of employment, and reduction of family burden (Xiong et al., 1994). It is also possible that this type of intervention, aimed at giving the patient a more normal life, might
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be concordant with the reportedly better prognosis for persons with schizophrenia in developing countries (Jablensky et al., 1991). According to the narratives of persons with schizophrenia, it is clear that in any culture, even the appearance of a normalized life is more desirable than one of disability and marginality (Barham and Hayward, 1998). In contrast to this model is current research from Hong Kong that merged cultural content (Confucian precepts) with educational content developed in the West (Chien and Wong, 2007). These authors conducted a randomized controlled trial of 18 sessions of psychoeducation for families of patients with schizophrenia that consisted of four stages based on the multi-family model of McFarlane (2002)—orientation and engagement (three sessions), educational workshop (six sessions), therapeutic family role and strength rebuilding (seven sessions), and termination (two sessions). The program content was selected from results of a needs assessment of 180 family members. “The program used a culturally sensitive family intervention model, which considered many of the cultural tenets that were taught by Confucius (for example, valuing collectivism over individualism and giving great importance during the needs assessment to family and kinship ties) in respect to family relationships and value orientation” (p. 1004). Multivariate analyses of variance shows that participants in the psychoeducation group reported greater in functioning of patients and families, lower family burden, and the number and length of patients’ re-hospitalizations over a 12-month follow-up period, compared with a standard care control group. In summary, it would seem that despite its underutilization as evidence-based practice in the United States, FPE is increasingly being applied in many countries and is proving useful in multiple cultural contexts, rural as well as urban. Most offer the basic content of education about mental illness, illness-management strategies, and problem-solving techniques. Despite a very few unexpected negative findings (with possible explanations), almost all have yielded similar findings of symptom reduction and fewer needs for hospitalization. Special programs developed for ethnic communities in the United Kingdom, the United States, and Australia are described, with materials reflecting cultural values or norms added to basic FPE content. An FPE intervention among Hispanic families in the United States, which produced negative findings is fully described, with treatment effects linked to level of acculturation. In this case, the negative findings were heuristic in suggesting ways that FPE might be modified for immigrant families. Other suggestions for adapting FPE content and examples of skills training aimed at teaching disease management to Latino patients with schizophrenia are presented, with research results. Examples of FPE and data from a large number of countries, primarily from Europe and Asia, and one from Latin America, are presented. These studies vary in rigor, but they all produced positive findings. The European Commission Study explored both the impact of training for staff professionals and the results of their
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FPE interventions in six countries in Europe. In Asia, Thailand, Japan, and China have also produced positive findings. The Chinese studies have been particularly rigorous, with fairly large Ns. We have noted that family interventions in China have been quite variable. Most have modeled basic Western content, some have added Confucian precepts, and others have been based on content quite at variance with the Western model. Yet all have been well designed and all have yielded positive outcomes, in rural and well as urban settings. From these findings, the trans-national and trans-cultural appropriateness of basic FPE seems to be largely confirmed. However, questions of optimal length of interventions, and the need for and form of cultural adaptation, have yet to be resolved.
9 F A MI L Y E D U C A TI O N
Mueser and Glynn (1999) have pointed out that none of the short-term psychoeducational interventions for schizophrenia-spectrum disorders have had an impact on the patient with the sole exception of a study by Goldstein (Goldstein and Kopekin, 1981). This was based on a six-week crisis-oriented intervention, offered to clients and families, immediately following a hospitalization. A control group received only medication and case management. At six months, significantly reduced relapse rates were found in the intervention group. However, as Mueser and Glynn (1999) noted, “despite the positive findings, this study has not been replicated in over two decades, since it was conducted” (p. 236). A six-week session for families would now be called “family education” rather than psychoeducation. As Solomon (1996) has pointed out, family education is not primarily designed to affect the outcome of the ill relative. So in contrast to family psychoeducation (FPE), there is no evidence that brief family education models affect relapse or re-hospitalization rates. However, Solomon, Draine, Mannion, and Meisel’s (1996) randomized control trial did find improvement in the ill relatives’ attitude toward medication adherence even though they did not attend the sessions. And Chien, Chan, and Thomspon’s (2006) randomized controlled trial in Hong Kong indicated that mutual support groups offering 12 sessions of FPE by trained family members, without the patient present, improved patients’ functioning and re-hospitalization rates even more effectively than 12 more didactic FPE sessions offered by professionals. As noted in Corrigan et al. (2008), there have been at least five randomized trials and one quasi-experimental design of family education. All studies show positive effects on families. Although there is no uniformity of outcome measures, there is a certain commonality in the findings. Families report greater knowledge about serious mental illnesses (SMIs), more understanding of
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the mental health system, reductions in burden, improved self-care, less distress and anxiety, and greater self-efficacy in coping (see Corrigan et al., 2007). The following are descriptions of some major family education programs in the United States (some, as may be seen, are also taught in other countries). Most programs use internal evaluation such as pre-post knowledge tests, but a few have been studied with randomized controlled trials and these are indicated in the following paragraphs. Regardless of outcome data, most programs reach large numbers of families and should be considered useful. The list is suggestive of the commonality of the various models, but cannot be considered inclusive. Included are relevant literature citations for specific programs, some of which may also be found in the reference list. Contact information for the programs and their manuals may be found in the Appendix. The following are a selection of models that have all been manualized, and have all been subjected to adequate and sometimes rigorous research designs. They may offer essentially the same materials as FPE, but they do not satisfy the two criteria that define FPE as an evidence-based treatment for SMI, temporally and in terms of outcome focus. That is, they are briefer than six to nine months, and they may focus primarily on benefits to the family participants rather than to the person with mental illness.
MANUALIZED EDUCATION BY TRAINED FAMILY MEMBERS OR FAMILY-PROFESSIONAL TEAMS, WITH OUTCOME DATA We begin with three major family education programs that must be considered at least on a par with evidence-based FPE, with similar core content. First, they have all been subjected to randomized controlled studies. Second, they have the following characteristics and advantages: family caregivers have been involved in their construction, so their content is responsive to family needs; they are administered solely or with the involvement of rigorously trained family members; they have been constantly updated to incorporate new knowledge, and most have been going on for many years and have reached thousands of families. In the United States, brief family education programs have been developed by the National Alliance on Mental Illness (NAMI). In these programs, carefully trained family members teach a manualized course to other families about the causes and treatment of major psychiatric disorders. Families learn illness management and problem-solving skills. They also learn how to deal with their own emotional reactions and maintain family stability. Two programs, Journey of Hope (JOH) and Family-to-Family Education Program (FFEP) were both developed under the auspices of NAMI. The purpose was to serve the educational and support needs of its members, as well as those of thousands of other families of persons with serious and persistent mental illness.
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Because mental health systems offered practically no help to patients’ caregivers, members of NAMI’s Curriculum and Training Committee had developed local family education projects and manuals (e.g., Bisbee, 1991). Dr Agnes Hatfield, an early president of NAMI, initiated family training programs and wrote a book on family education for professionals and the general public (Hatfield, 1990). However, according to NAMI’s education director, Dr. Joyce Burland, the first “comprehensive family education and support program, created by combining fully developed projects of the Alliance for the Mentally Ill (AMI) of Vermont (in peer family-to-family education) and the Lousiana AMI (in peer family support group facilitation) was founded in 1992 under the Louisiana AMI trademark ‘Journey of Hope.’ In 1997, the National Alliance for the Mentally Ill (NAMI) assumed a leadership role in family education to ensure that the AMI of Vermont’s ‘family to family’ would continue to be offered as an integral part of NAMI’s ongoing education mission.The NAMI-sponsored family education course has been renamed ‘The NAMI Family-to-Family Education Program’” (Burland, 1998). The eight-week JOH is given in a few states, primarily in Louisiana. NAMI’s FFEP is a 12-week course. It has been administered nationwide to many thousands of families of people with SMI. Both programs are taught from a manual. The material is constantly updated to incorporate current information and to expand the number of psychiatric disorders for which adequate information is available.
FAMILY-TO-FAMILY EDUCATION PROGRAM (FFEP) FFEP is based on state-of-the-art information for families of persons with schizophrenia and schizoaffective disorder; bipolar disorder; major depression; borderline personality disorder; panic disorder, and obsessive compulsive disorder; co-occurring brain disorders and addictive disorders. Its 12 classes include: (1) Introduction (normative emotional reactions of family members; goals for ill relative; understanding illness symptoms; etc.), (2) and (3) Description and diagnostic criteria for specific disorders as mentioned earlier, types and sub-types, (4) Basics about the brain, function of key brain areas, research on brain abnormalities, genetic research, etc.,(5) Problem-solving-skills workshop, (6) Medication Review, (7) Inside Mental Illness (understanding subjective experience of coping with a brain disorder), (8) Communication skills workshop, (9) Self-care (handing negative feelings of anger, entrapment, guilt, and grief; balancing caregiver responsibilities, etc.), (10) Vision and potential of Recovery (learning key principles of rehabilitation), (11) Advocacy (combating stigma and learning how to change the system), and (12) Review, sharing, and evaluation. The manual has a glossary of psychiatric terms and definitions and local resource information is available. According to information received from director Dr. Joyce Burland (personal communication, November 19, 2007), Family-to-Family has graduated over
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125,000 people from its classes in the 13 years that records have been kept. It is now available in 48 states and involves more than 3,500 trained NAMI member volunteers who teach in co-leader pairs. It is estimated that they are now graduating some 10,000–12,000 people a year. There are nine classes where the various family members are separated according to their family roles (mothers, fathers, siblings, spouses, adult children). They are asked to work in these groups to define their particular family burden (“What is the hardest part of living your particular role in your family with a member with mental illness?”) In this way, they hope to engender understanding and empathy among the relative groups. FFEP is now taught in Spanish in many parts of the country. All training materials and the curriculum have been translated into Spanish, and expanding this part of the program is a priority in NAMI’s strategic plan for the next three years. De Familia-A-Familia has been hugely successful in Mexico, where over 8,000 people have graduated from the program in three years. The program is being translated into Arabic and Mandarin in California with funding from Proposition 63 (which is slated for mental health purposes). FFEP will go to Italy in the first part of 2008. Research Findings. In a pilot study, 37 family members who participated in FFEP were evaluated by an independent research team from the University of Maryland at baseline, after completing the program, and six months after completion. Participants demonstrated a significantly greater sense of empowerment regarding family, community, and the service system, and reduced displeasure and worry about the ill family member. These benefits were sustained at six months (Dixon, Stewart, Burland, Delahanty, Lucksted, and Hoffman, 2001b). In a second evaluation, 95 consenting family members agreed to four interviews (waitlist, pre- and post-FFEP, and six months post-FFEP). The variables were objective and subjective burden, empowerment, and depression. The FFEP was associated with reduced subjective burden and increased empowerment without changes in objective burden. Knowledge about SMI, understanding the mental health system, and self-care also improved. There was no significant decay at six-month follow-up. The authors concluded that the FFEP is helpful to relatives of persons with SMI by reducing subjective burden and worry, and increasing empowerment and knowledge of SMI, self-care, and understanding of the mental health system (Dixon, Lucksted, et al., 2004). In October 2005, the University of Maryland team received a four-year National Institute of Mental Health grant to continue studying NAMI’s Family-to-Family program.
JOURNEY OF HOPE (JOH) The JOH program was initially developed in 1993 to consist of a 12-week education course and an ongoing support group. Family members could participate in either or both, depending on their needs. NAMI subsequently supplanted JOH with the
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12-week FFEP. NAMI-Louisiana retained the JOH, which was subsequently converted to an eight-week course. In 1997, the JOH curriculum was collaboratively re-written by a team of families, mental health professionals, and mental health consumers. The material focuses on the biological causes and clinical treatments for schizophrenia, schizoaffective disorder, major depression, bipolar disorder, and obsessive-compulsive disorder. Components are similar to those of FFEP, including recognizing signs of relapse, medications, side effects, and non-compliance issues, effects of substance abuse, problem-solving and communication skills, etc. Additionally, the course offers information on the mental health system and how to work collaboratively with service providers. Families’ predictable reactions are normalized, self-care is emphasized to enhance caregivers’ emotional and physical well-being, and consumer recovery is an important part of the curriculum. JOH is taught in non-clinical, public settings and the course and all materials are free (Pickett-Schenk, Lippincott, Bennett, and Steigman, 2008). Research findings. Research on JOH was conducted by the Center on Mental Health Services Research and Policy, University of Illinois at Chicago. The first evaluation, consisting of survey reports from 424 families who had participated in JOH from 1993 to 1996, found increased knowledge of the causes and treatment of mental illness, increased understanding of the mental health service system, and improved morale. Hierarchical regression analysis found that these program outcomes were highly predictive of one another. “This suggests that the JOH program may be successful in helping families attain a broad range of outcomes. Achievement of these outcomes may allow families to be better able to both help their ill relative by increasing their ability to manage problem behaviors and secure services, and to help themselves by decreasing their feelings of guilt and isolation” (Pickett-Schenk, Cook, and Laris, 2000). In a later randomized controlled study of the eight-week JOH course, 462 participants were recruited six times in waves from December 2000 through August 2003. In an evaluation conducted in three southeastern Louisiana cities, 231 family members were randomly assigned to immediate receipt of the JOH course and 231 assigned to a nine-month waiting-list control group. Participants’ knowledge levels, problem-solving skills, psychological well-being, and relationships with their ill relative were assessed at enrollment, three months later at course termination, and eight months post-baseline. Mixed-effects random regression analysis found that JOH participants reported fewer depressive symptoms, greater emotional role functioning, and fewer negative views of their relationships with their ill relatives than peers in the control group. These improvements were sustained over time and were significant for all even when controlling for demographic differences and the clinical characteristics of the ill relative (Pickett-Schenk et al., 2006). The intervention group also reported significantly greater gains in knowledge about mental illnesses and their treatments, problem-management, and community resources, and fewer needs for information on coping with both
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positive and negative symptoms (Pickett-Schenk, Lippincott, Bennett, and Steigman, 2008).
THE TRAINING AND EDUCATION NETWORK (TEC) OF PENNSYLVANIA The Training and Education Network (TEC) is a special project of the Mental Health Assocation of Southeastern Pennsylvania. It is a collaborative of family members and mental health professionals who are experienced in providing psychoeducation to persons with mentally ill relatives. TEC network members developed and facilitated a 10-week psychoeducational group as one of three complimentary family educational services from which family members can choose. The others are family consultation, with the needs of an individual family addressed by a specialist in phone or face-to-face contacts, and questionand-answer programs at regularly held meetings. Research findings. In one study, 183 family members were randomly assigned to receive individual consultation or group psychoeducation or were placed on a nine-month wait list. Subjects were primarily white middle-class women with an adult child with mental illness. The ill relative was not involved in the intervention. Baseline and three-month follow-up interviews included measures of burden, grief, self-efficacy, social support, stress, and adaptive coping. Individual family consultation was administered by a specialist for a minimum of 6 to 15 hours and 11 psychoeducation groups were co-facilitated by a mental illness specialist and a trained family member. Results: The only significant improvement attributable to both psychoeducation and individualized consultation was specific self-efficacy, that is, “confidence in one’s ability to understand mental illness in a relative and to cope with its consequences” (Solomon, Draine, Mannion, and Meisel, 1996, p. 46).
OTHER FAMILY EDUCATION MODELS THE PACIFIC CLINIC INSTITUTES MODEL Christopher Amenson, Ph.D., is faculty chair of the Pacific Clinics Institute, which has been involved in family training for at least a quarter of a century. According to Amenson (personal communication, October 23, 2007), Schizophrenia: A Family Education Curriculum, includes 12 hours of lectures on schizophrenia focusing on family understanding, not blaming themselves or the consumer, understanding and accessing evidence-based treatments, and the family’s role in promoting recovery. There is a companion, Schizophrenia: Family Education Methods that describes how to set up, recruit families, answer questions, and create a positive process in the class. Schizophrenia: A Family Education Curriculum, has been taught, with many revisions, for 25 years to over 50,000 families in eight languages. The course has been published in English, Spanish, and Japanese and translated by
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individual trainers into Mandarin, Cantonese, Vietnamese, Tagalog, and Russian. “I have trained 120 professionals and family members to teach the course . . . The course is also on videotape and DVD. Families, who are less comfortable with public exposure, often take the course at home by tape or DVD. I gave the video rights to the local NAMI, San Gabriel Valley, which sells them at a nominal fee (626-577-6697). Locally, we have used my course as a complement to Family-toFamily with many local families attending both. Different families want different doses of my information-packed class and the terrific small group process of Family-to-Family. I have also written Family Skills for Relapse Prevention for any diagnosis. This 10-session course is attended by the consumer and at least one family member. They monitor symptoms, identify potential triggers, and develop plans in conjunction with their treatment team for responding to everything from a minor flair up through advanced directives for involuntary hospitalization . . . When there is no available family (homeless programs), the course can be taught to the consumer and his case manager or other significant support.” A further discussion may be found in Amenson and Liberman (2001).
THE THREE R’S PSYCHIATRIC WELLNESS REHABILITATION PROGRAM The following description was provided by the model’s founder, Dr. Mary Moller, a professor of psychiatric nursing (personal communication, October 24, 2007). The Three R’s educational model is an inter-disciplinary model designed to have a teaching team comprised of an advanced practice nurse, social worker/therapist/ psychologist, and consumer. It was started in Omaha in the mid-l980s. The model was developed as a community education course for patients, family members, and also providers who were working with the patients and family members of persons with mental illness. The Three R’s program has been taught continuously in Tacoma, Washington since 1991, and was selected as an NIMH Best Practices model in 1994. As of 2000, 6,281 different people had taken the courses. The Three R’s program has been given in numerous mental health centers and hospitals in the following states: Alabama, Arizona, Kansas, Kentucky, Massachusetts, Montana, Nebraska, Ohio, Oregon, Texas, Utah, Washington, and Wisconsin, also in Edmonton, Alberta, and London, Ontario, Canada. In 2000, the model also began to be implemented in Israel. The program is offered under the auspices of the Psychiatric Resource Network, Tacoma, Washington. It is described more fully in Moller and Murphy (1997) and Murphy and Moller (1996).
PEBBLES IN THE POND The following information was provided by co-founder Larry Baker (personal communication, October 14, 2007). Pebbles in the Pond: Achieving Resilience in
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Mental Health is both a 600-page textbook and a psychoeducation curriculum for 12 weekly sessions of three hours each. The program brings together individuals with severe and persistent mental illnesses, their family members and friends, as well as the mental health professionals with whom they work. Because of the funding stream for the program—a community federal block grant and an allocation from United Way of Pierce county (WA)—the program welcomes community residents who have an interest in the topics. Both the classes and the textbook are available without charge. The program is offered through the Community Education department of Comprehensive Mental Health in Tacoma, WA. Four identical sessions are offered each week in four area mental health centers. The intellectual property, which is “Pebbles in the Pond,” belongs to a non-profit educational organization with offices in Gig Harbor, WA. The organization has a volunteer board of 15 members, over half of whom are consumers or family members of consumers. The co-authors of the “Pebbles” book and curriculum are Karen A. Landwehr, M.C., and Larry S. Baker, M. Div. Between themselves, Karen and Larry have nearly 50 years of experience in the public-sector mental health system. Currently, “Pebbles” is offered three times a year—winter, spring, and fall. Individuals can join the class at any time during the 12 weeks. They can pick up classes missed during the next cycle. Some individuals have attended the series ten times or more. It becomes an integral part of their recovery strategies. In a calendar year, the course draws between 350 and 450 individuals. One of the unique features distinguishing “Pebbles” from other psychoeducation models is the simultaneous involvement of consumers, family members, and care providers. For ten years, the program has utilized pre- or post-session 10-item knowledge inventories for the first 11 sessions and a comprehensive 50-question review at session 12. In developing contract language with funders, 15% overall improvement in scores was the goal. This envisioned each person attaining one or more important pieces of information each week. In fact, the participants have far exceeded that goal. See appendix for more information, also Baker and Landwehr (2007). The following two models primarily offer training in family education to educators.
BRYCE HOSPITAL, ALABAMA MODEL Training in psychiatric patient and family education has been offered since the 1980s at Bryce Hospital in Tuscaloosa, AL. The training (which was originally developed by Dr. Kay McCrary and Dr. Cynthia Bisbee) consists of a three-day intensive workshop on the content and process of psychiatric patient and family education (including study of Dr. Bisbee’s manual, Educating Patients and Families about Mental Illness). This workshop is followed six weeks later by a content examination and
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demonstration-teaching of a specific topic. Over 500 people have received this training in Alabama. They in turn have administered education in mental illness to numerous families and patients in psychiatric facilities. The psychiatric patient and family education method is designed to be a specific details complementary segment of an overall treatment plan that may involve a variety of treatment modalities, including psychopharmacology, individual or group psychotherapy, skills training and other rehabilitative methods, family consultation, and family therapy. The format consists of illness management, coping skills, and diagnostic groupings of depression, bipolar disorder, and schizophrenia; 12-topic curriculum for families addressing the etiology and treatment of mental illness; management skills (e.g., relapse prevention); rights and responsibilities; and general coping skills. The manual includes specific handouts and overheads for each topic. There has been informal research on patient satisfaction and increase in knowledge, but no controlled research using the specific manual. The manual contains a 12-item “psychiatric patient education” and “family education” information test to assess knowledge about mental illness, which can be used as a preand post-test measure. The manual also includes an “attitude checklist” to assess attitudes toward mental illness. See Bisbee (1991, 1995) for manual information.
PARTNERSHIP FOR RECOVERY Like the Bryce Hospital Program, Partnership for Recovery, developed by Patricia L. Scheifler MSW, PIP, primarily offers manualized education for educators and service recipients. Patricia Sheifler has authored two Family Education resources. “Managing Crisis and Emergency Situations,” part of the Team Solutions library of psychoeducational workbooks. It is currently in its third edition and is published by Eli Lilly and Company. The workbook is written for family members, caregivers, and frontline staff and it focuses on teaching calm, non-critical communication skills. The workbook can be downloaded free of charge from www.treatmentteam. com. There is no indication that any outcome studies have been conducted using the workbook. Scheifler’s other family education resource is a video tape, “When Mental Illness Invades the Family: Developing Practical Communication Skills.” Like the Bryce Hospital model, this is primarily a teaching program with a variety of teaching psychoeducational resources authored or co-authored by Scheifler, and listed in the Appendix. In summary, family education (FE) shares uniformities of content with FPE but differs substantially in length, format, target group, and expected outcomes. It is brief, generally ranging from six to 12 weeks; it is targeted to caregivers—families and friends; it is always in group form, typically without the presence of the ill family member, and its expected outcomes are greater knowledge of illness management and reduced distress and burden of family caregivers. There may be a hope,
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but there is no presumption of reduced relapse or hospitalization of the ill family member. Most programs use internal evaluations, some with pre-post knowledge tests, but only a few have research findings of effectiveness. FE programs have largely been developed under the aegis of advocacy groups, most by The NAMI and Mental Heath America (MHA). Two NAMI programs, taught by well-trained family members, have been manualized and evaluated in research designs that almost fulfill the EBP criteria, with the exception of replication by a different research team. These are Journey of Hope (JOH) and Familyto-Family Education Program (FFEP). Together these 8–12-week programs have reached many thousands of families, and have been supported by state administrations as a service to families. This chapter describes these programs in detail with their research findings. For other research, we note the Training and Education Network (TEC), a project of the MHA of Southeastern Pennsylvania. TEC is a collaborative of professionals and family members who are experienced in providing manualized FE. TEC also offers family consultation for individual families. In a randomized design, with individual consultation compared with group FE, both interventions yielded greater self-efficacy in participants than a waitlist control. Because many other sites and clinical facilities have developed manuals and provide education and training to those families who need it, a sampling of other programs are provided. Although they usually have evaluation forms tapping knowledge acquisition or satisfaction with the training, for the most part they have no research data to qualify as EBPs. Yet, these programs are rich in detail, and some are services for families that have been provided for many years by concerned clinicians. Their manuals and other publications may be found in the Appendix.
10 T R A I N I N G A N D TRA I N I N G ISSU ES
McFarlane (2002) has probably been most proficient in training staff for family psychoeducation (FPE) in various states in the United States, as well as in numerous research programs. In the New York State and Ohio Training and Dissemination Programs, staff was trained in two different methods of delivering family-based interventions; multi-family and single-family FPE. In a six-site study in New York, clinicians received intensive training in a three-day workshop. This was repeated annually through the four years of the research, with content varied to reflect the changing level of care provided by families during this period. Videotaped family interventions were viewed by senior supervisory staff on a weekly basis, and clinicians received weekly telephone supervision of 45 min per session based on the content of the videotapes. Changing the belief system of clinicians, most of who initially viewed families as somehow causing schizophrenia, was the first task in disseminating FPE (Dixon and Dunne, 2002). Training of clinicians was further augmented by orientation and training of administrators and other key personnel. In the Ohio study, there was an intensive training of staff from five agencies. Training was in two phases. First was a two-day program with didactic materials, including books, a treatment manual, and video. The second phase was planned with participants at each site, paired with a trainer providing three months of technical assistance and support to each site by phone. Trainees were promised up to five hours of phone contact with the trainer. The results of the training are further indicated in the chapters on Model Programs and on Implementation. McFarlane has also trained staff working in prodromal projects, such as the Portland Identification and Early Referral (PIER) project discussed in Chapter 6. Between 2000 and 2004, the European Commission promoted a study to investigate the effects of both standard and augmented staff training on implementation and
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effectiveness of FPE for schizophrenia. The study involved six European countries and was carried out by the Departments of Psychiatry of the Universities of Naples (Italy), Athens (Greece), Lisbon (Portugal), Granada (Spain), and Dresden (Germany), and the Birmingham and Solihull Mental Health Trust (United Kingdom). Each center chose four mental health services, and each service trained two professionals in the FPE model of Falloon, Boyd, and McGill (1985). The aim was to investigate the possibility of providing FPE in routine clinical settings by training regular staff, and to assess the difficulties and benefits experienced by staff. The standard training format, a basic course on FPE, was 40 hours (full-time for five days). The augmented program consisted of three 2-day monthly modules. The latter added training for staff to use communication and problem-solving skills to cope with implementation problems on homework on FPE techniques. The two professionals from each center were randomly assigned to attend one of the two training courses and to implement FPE in their center for one year. The 48 trainees, all of whom completed the course, consisted of the following disciplines: psychiatrists (31%), nurses (29%), clinical psychologists (15%), social workers (15%), occupational therapists (2%), and other professionals (8%). In follow-up, the 48 trainees reported a significant improvement in their relationships with patients and their families, and in clinical results. (The latter are reported in the chapter on culture.) The most frequent difficulties reported were work overload, difficulties in integrating family work with other responsibilities, and inadequate time to run the intervention. There were no significant differences in effects of the two training programs (Magliano et al., 2005; Magliano and Fiorillo, 2007). Probably the most continuous training program today is Meriden, the West Midlands Family Programme in the United Kingdom. Meriden is funded by the British National Health Service (NHS), and the overall aim of the Meridan Programme is to train staff in NHS Trusts providing mental health services in the skills needed to work with families. Their major training is in Behavioral Family Therapy (BFT), previously described, the model that has informed most FPE programs. Since 1998, over 2300 therapists have been trained across the West Midlands and there are at least 130 trainers representing all professions from all specialty areas. Families and consumers are actively involved as consultants to the program, and several have themselves trained as therapists and subsequently as trainers. The program provides training in a range of special areas, including early psychosis, family work in forensic settings, and delivering caregiver education and support programs. A number of key areas have been developed including liaison with primary care and child and adolescent services. Meriden was developed as a cascade model, “the only one that would be likely to be successful in training a large number of staff in a short space of time. This involved the training of staff in each trust to become trainers and supervisors. These therapists, drawn from all professions, could then offer training courses
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within their own service” (Fadden and Birchwood, 2002). Concomitantly, a community mental health program was developed at the University of Birmingham as a partnership between local mental health services and the university. Mental health service providers release staff to engage in the program, and thus are promised a supply of fully trained staff with supervision from the academic sector. The program explicitly adopted a value base focused around the express needs of service users and their families, similar to the consumer-oriented focus that would later be emphasized in the President’s Commission report in the United States (New Freedom Commission on Mental Health, 2003). Fadden (1998), who helped initiate the successful Meriden Project in the United Kingdom, has stated that implementation of FPE and staff training is intricately linked. The successful adoption of FPE in any program depends on a workforce trained in the skills necessary to work with families as a psychoeducator rather than as a person administering family therapy. She notes that in the United Kingdom, as in the United States and elsewhere, the pre-service training of most mental health professionals does not equip them with the skills that are needed. Many are not familiar with the literature, and with the exception of social workers, often have minimal experience with families. She states that many practitioners find the prospect of simultaneously making an alliance with both patients and their relatives quite intimidating. Research has demonstrated that successful outcomes of FPE are significantly correlated with therapists’ competencies, and with “treatment integrity,” again the province of those with training and experience. Moreover, training in FPE often involves “undoing unhelpful attitudes formed at early stages of training. Beliefs that parents are responsible for their child’s schizophrenia, or that families are dysfunctional rather than normal people trying to cope with abnormal situations are still pervasive . . . Another common attitudinal barrier for professionals is the loss of power and control, which derives from the collaborative style that is intrinsic in both psychoeducational interventions and interventions with relatives” (Fadden, 1998, p. 302). Fadden suggests that an effective way of producing attitude change is to use audiotapes or videotapes of families relating their experiences. In a study reported by Amenson and Liberman (2001), it was noted that two days of staff training did not produce any change, but intensive training for several months resulted in implementation of new family programs at a majority of sites. “Working with Families” was a project to introduce FPE in the Los Angeles Mental Health Department by gaining commitment of top management to designate family education as a required service. Extensive staff training was conducted for 39 psychologists, social workers, and nurses selected by their program directors. The three-phase training included essential topics taught for several months (see Amenson, 1998 for content). Successful implementation included “administrative support from top management, a congruent treatment philosophy in their clinics, the availability of external consultation, and encouragement from a respected
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colleague to use the skills. Two trainees adapted the use of the family education courses in Japan, and the curricula have been published in Japanese” (Amenson and Liberman, 2001, p. 591). Some training sessions for FPE are general and others are targeted to a specific discipline. A six-session training program for mental health practitioners focused on increasing their knowledge of families caring for a relative with mental illness, improving their attitudes about working with families, and increasing their contact with families. Seventy participants were divided into experimental and control groups. The trainees showed increased knowledge and improved attitudes about working with families, but no changes in actual patterns of contact (Thomas, Guy, and Ogilvie, 1999). Gall, Atkinson, Elliott, and Johansen (2003) studied the effects of innovations in nursing education in Scotland to support carers of persons with schizophrenia. They found that nurses reported changes in practice in key areas: they built collaborative relationships with carers, acknowledged and supported the carer role, and made progress in identifying carer needs and accessing resources to meet those needs. Training to administer FPE is probably insufficient if mental health professionals do not receive adequate education on working with families in their pre-service clinical training (Lefley, 1988). A publication of the Center for Mental Health Services specifically addresses the required competencies of mental health staff to work with families (Glynn, Liberman, and Backer, 1997). They list seven essential competencies. The worker must have the knowledge and skill to be able to do the following: •
•
•
•
•
•
Develop a collaboration with the family (make a positive first contact, interview about consumer and family’s history, needs, wants, and assets) Offer information on mental illness (answer questions about mental illness, help families understand the long and variable course of illness, conduct multiple family groups) Enhance family communication and problem solving (teach family communication and problem-solving skills) Help with service system use (help families participate in treatment plan; inform families about different roles of mental health workers and establish liaison person for each family; help families understand the language of mental health services, and assist them in crisis) Help the family meet its own needs (establish connection to community resources, including NAMI affiliates; relieve burden and grief; empower families to become involved in advocacy; encourage families to learn about stress management skills; help families use educational materials wisely) Help with special characteristics of ill family members (be able help families of consumers who are treatment refractory; had recent onset of mental illness; are
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FAMILY PSYCHOEDUCATION FOR SERIOUS MENTAL ILLNESS substance-abusing or in criminal justice system; or families of children with serious mental illness) Manage confidentiality and cultural diversity (manage issues of confidentiality between family and ill relative; address cultural diversity as it relates to family involvement) (Glynn, Liberman, and Backer, 1997, pp. 1–2)
Training skills, however, must be incorporated in receptive mental health systems. In its international initiatives to encourage greater family involvement in mental health care, the World Fellowship for Schizophrenia and Allied Disorders (WFSAD) collaborated with FPE pioneers Ian Falloon, Julien Leff, and William McFarlane in proposing fifteen principles for working with families. These are relevant to the training of both clinicians and administrators as essentials of all patient care. They are: (1) co-ordinate all elements of treatment and rehabilitation; (2) pay attention to social as well as clinical needs of patients; (3) provide optimum medication management; (4) listen to families and treat them as equal partners; (5) explore family members’ expectations; (6) address family’s strengths and difficulties; (7) help resolve family conflicts; (8) address feelings of loss; (9) provide relevant information for patient and family at appropriate time; (10) provide an explicit crisis plan and professional response; (11) encourage clear communication; (12) provide training for family in structured problem-solving techniques; (13) encourage family to expand their social support networks; (14) be flexible in meeting the needs of the family; and (15) provide the family with easy access to a professional in case of need if there is a cessation of work with the family (Froggatt et al., 2007, pp. 151–154). To sum up, except for McFarlane’s (2002) continuing work with mental health personnel in several states, and staff training in Los Angeles by Amenson and Liberman (2001), training for FPE has been implemented to a greater extent in Europe than in the Western hemisphere. In 24 mental health services in six European countries, 48 mental health professionals were trained in the Falloon, Boyd, and McGill (1985) model to determine whether FPE could be provided in routine clinical settings by regular staff. During follow-up, the trainees reported significant improvement both in clinical results and in relationships with patients and their families. As expected, the most frequent difficulties were work overload, conflicting responsibilities, and inadequate time. The most continuous training program today is Meriden, the West Midlands Family Programme in the United Kingdom, which has trained over 2300 therapists since 1998. Meriden has added specialty areas such as family work with early psychosis and liaison with primary care and child and adolescent programs. In terms of actual content, Glynn, Liberman, and Backer (1997) list seven essential competencies for clinical staff to be able to work successfully with families. WFSAD, an international mental health advocacy organization that has long
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pressed for family involvement in treatment, collaborated with FPE researchers in proposing 15 principles for working with families. These are relevant to the training of both clinicians and administrators as essentials of all patient care. It is clear that successful training is only the beginning of the adoption of new services. Administrative support, adequate reimbursement, the availability of sufficient time, both for training staff and for implementing programs, minimal pressure of competing commitments, and above all, the positive attitudes and interest of staff are all required for training to transfer to practice. And programs must make an effort for outreach and engagement of families. These issues are further discussed in the chapter on Implementation.
11 I M P L E ME N T A TI O N I N S E R V IC ES
Despite the large body of research evidence on effectiveness, family psychoeducation (FPE) has been poorly implemented in most mental health systems in the United States, with an estimate that only 10% of families participate in FPE programs (Dixon et al., 2001). This is not unusual, since implementation of all evidence-based practices (EBPs) for serious mental illness has been seriously deficient. As Torrey et al. (2001) have noted, major professional groups have published recommendations, guidelines, consensus statements, and treatment algorithms relevant to the care of adults with serious mental illness. Yet evidence-based psychosocial interventions such as FPE, assertive community treatment, integrated dual diagnosis treatment, or supported employment continue to be under-represented in most mental health systems. In a comprehensive analysis of implementation of McFarlane’s multi-family model in the real world, Dixon and Dunne (2001) described a carefully constructed process of research, implementation, and dissemination in four states and assessed the results as “partial successes and partial failures” (p. 355). A survey of all psychiatric institutions in Germany, Austria, and Switzerland found that although 86% of the responding facilities claimed to offer psychoeducation of some kind, a mean of 21% of the patients with schizophrenia and only 2% of their family members had participated (Rummel-Kluge, Pitschel-Walz, Bauml, and Kissling, 2006) in such programs. There are guidebooks for families on how to become involved in their relatives’ care (e.g., Glynn and Backer, 1997), but ineffective pressures on mental health systems to incorporate not only FPE, but EBPs in general (Aarons and Sawitzky, 2006). The following discussion attempts to explore some of the barriers to FPE, on the part of both participants and service providers. Experiences and problems in implementations, and fidelity issues, are also discussed.
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BARRIERS TO IMPLEMENTATION Barriers to implementation are both general and specific. As noted by McFarlane, McNary, Dixon, Hornby, and Cimett (2001), FPE “is not compatible with clinical training of many clinicians. It is more complex than standard medication treatment, it cannot readily be tried in a brief or easily evaluated form, and the outcomes—by design—emerge over the long term and are therefore not readily observable” (p. 936). In response to a request for information on their experiences in implementing FPE, McFarlane indicated that too many clinicians and administrators reject the whole concept of EBPs. In some agencies at least “the biggest barrier was rejection of the whole concept of evidence related to practice. The other barrier was lack of time and ‘productivity’ pressures in agencies” (W.R. McFarlane, personal communication, May 12, 2008). Bisbee (2007), an administrator in a major urban mental health authority, has noted barriers to implementation on the part of service recipients as well as providers. First, there may be a general reluctance of families and consumers to simply attend. There may be practical obstacles such as accessibility and transportation, reluctance to invest time and energy, underestimation of the value of psychoeducation for themselves, fear of increased expectations if they take the training, fear of generalized stigma, and previous bad experiences with the system. Clinician and administrator issues may include negative attitudes and beliefs about families, job and organizational factors, lack of support from leadership, and insufficient resources. They may also underestimate the value of psychoeducation for families. Barrowclough and Lobban (2008) have empirically confirmed some of these difficulties with staff, and also with caregivers’ reluctance to participate in family work. “Several studies of community samples have shown that caregiver participation in family intervention is relatively low, with only 50% or so of caregivers taking up the offer of either a support service or family intervention . . . with possibly higher rates when help is offered at a time of crisis or at first episode” (p. 221). Brent and Giuliano (2007) used a case example to explore barriers to implementing family interventions in acute and outpatient treatment venues. Their discussion “highlights the convergence of problems in the mental health-care system with clinicians’ typical capacities and practices, difficulties intrinsic to the nature of psychotic-spectrum illness itself, and the burden and stigmatization of families of the severely mentally ill. Taken together, these factors undercut the implementation of evidence-based family interventions” (p. 161). First, there must be efforts to engage families, many of whom are overwhelmed and reluctant to participate in outside activities that require time and commitment. Some are defensive about needing help. Biegel and Song (1995) studied facilitators and barriers to caregiver support group participation among 198 lower
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socioeconomic status African-American and Caucasian caregivers of persons with SMI. They found many of the same responses. Barriers included accessibility and transportation difficulties, lack of time, concerns for confidentiality, and disavowing the need of outside aid in caring for their ill relative. Murray-Swank and Dixon (2004) state that in clinical practice with persons with SMI, the degree of involvement and role of family members and significant others should be routinely assessed and the key principles of FPE should be initiated for all interested parties. Families are usually interviewed simply to get a history, rarely for participation in the patient’s treatment. Yet, as Amenson and Liberman (2001) have pointed out, administrative interest is essential for the inclusion of FPE in the spectrum of services in any mental health facility. Unfortunately, many administrators and program directors still lack knowledge of the research findings on FPE, despite its obvious cost–benefit in lowering hospitalization rates. Clinicians themselves may not be current in their personal knowledge base. They may be unfamiliar with the state-of-the-art information in most FPE courses, and would have to devote time to new learning. In today’s mental health systems with ever-diminishing resources, few staff members want to take on extra roles or responsibilities. For clinicians, there may be a carry-over of old prejudices toward families and reluctance to afford them any role in the treatment process. They may have learned in their early training, and still be convinced, that intensive psychodynamic or systemic family therapies are the gold standard, whereas education has lesser merit. To these we may add the ever-present problem of reimbursement. Third-party payers, both private and public, are variable in their reimbursement policies. Some states, such as Alabama, have a Medicaid code for Patient and Family Education and Support, but many do not. In many cases, FPE can be reimbursed only if administered to individual patients and their families and billed under another code, such as family therapy.
RESEARCH FINDINGS ON IMPLEMENTATION The New York State Family Support and Demonstration Project was conducted at five state-operated psychiatric centers and one city hospital, with 20 clinicians and a total of 172 families and patients (McFarlane, Dunne, et al., 1993). The project was conceptualized as having three phases: research, implementation, and dissemination. The research, designed to compare single- and multi-family approaches, is more fully described in the chapters on model programs and on training. The research phase indicated the superiority of multi-family group (MFG) over singlefamily approaches, so Phase 2 was initiated to emphasize MFG as the treatment of choice. Dixon and Dunne (2002) have noted a large number of variables that affected both implementation and dissemination of the project. Administrators were less
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involved in Phase 2, and clinicians no longer received extra compensation for the MFGs. Because research was no longer conducted, there was no need for a site coordinator or interviewers. Moreover, two of the sites had complete administrative turnover, with less commitment from new administrators. The dissemination phase attempted to use the same teachers and supervisors in other clinical settings in NewYork state, with the offer of regional training. During this phase, however, private clinics began competing for Medicare reimbursement, and these agencies were less responsive to mandates from the State Office of Mental Health. Participating agencies were required to subsidize the entire effort, and sometimes, their agency philosophies were at odds with the psychoeducational model. Clinicians were often at the pre-master’s level and had no training in the model, and their supervisors often had little preparation. When funding for the dissemination phase ended, most of the activity in the regional sites also ended (Dixon and Dunne, 2002; McFarlane, Dunne et al., 1993). In another attempt to determine whether research findings could be translated into FPE in routine clinical practice, a two-state study was conducted with 15 mental health agencies in Maine and 51 in Illinois. In these centers, clinicians and administrators were trained in McFarlane’s multi-family model of FPE. Participants were surveyed after their initial training session, and nine months later. The initiatives in Maine and Illinois had set a goal of disseminating FPE across each state. In the Maine Family Support Action Initiatives (MFSAI), they proposed to provide FPE support for at least two years by trained practitioners. From March 1998 to December 2000, approximately 380 clinicians from 33 agencies, hospitals, and centers were trained. The implementation design included needs assessment, epidemiologic profiles of populations and family availability, orientation and consensus building, clinical training, and ongoing consultation and supervision. A statewide advisory council encouraged local consensus building by clinicians, families, and consumers. The Illinois Family Psychoeducation Dissemination Project trained clinical staff of 51 agencies in nine service areas that contained approximately 100 mental health agencies. According to McFarlane, McNary et al. (2001), the states differed in the following important ways: (1) in Illinois, dissemination was initiated by the state mental health department, promoting adoption in independent non-profit agencies through regional directors and encouraging voluntary participation; financial incentives were provided to the implementing centers; (2) Illinois placed much less emphasis than the Maine initiative on consensus building and community acceptance; (3) few sites in Illinois used supervision and consultation after the training; (4) direct expenditures in Maine were 25 cents per capita, and in Illinois only one cent per capita; and (5) the project’s director was involved in Maine mental health services. An independent evaluation team administered a post-training survey tapping seven domains: trainees’ demographic characteristics, knowledge, satisfaction,
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intention to use the new approaches, beliefs about the agency’s intent and ability to implement MFG, perceived obstacles, and perceived value of various supportive resources for implementation. A total of 537 trainees from 69 sites completed surveys. The most common perceived obstacles to implementation were growing staff caseloads with intense pressure, and less time for new approaches; excessive current demands; perceived lack of reimbursement for non-traditional treatment; longer duration of the MFG treatment approach; and uncertain about agency financing as a whole. The overall regression analysis yielded a model that significantly predicted implementation of MFG at nine months (N = 53). The home state, Maine, made more progress toward implementation than the Illinois sites. Greater progress was achieved in sites where there were fewer predicted limitations of the model. Counter-intuitive findings were: (1) sites where trainees rated inducements as less helpful make greater progress and (2) sites where trainees rated FPE as less consistent with current methods made greater progress. Paradoxically, the least influential factor was the empirical evidence of the superiority of FPE over other models. Finally, in terms of actual implementation, as of December, 2000, MFG and single-family support services had been implemented at 14 sites or 93%, in Maine. In Illinois, of the 51 core mental health centers comparable to those in Maine, five sites, 10%, had implemented services and a small number were in the process of developing them. The Schizophrenia Patient Outcomes Research Team (PORT) selected the McFarlane MFG model for dissemination. In Ohio, they then conducted a study to determine whether either of two dissemination approaches led to changes in service delivery at the agency level, and to enhanced family participation at the patient level. A standard didactic presentation (“road show”) was compared to the standard presentation augmented by intensive on-site training in the MFG approach. The road-show was a one-hour presentation that highlighted the recommendation with evidence from the literature documenting the effectiveness of MFG. The presentation concluded with breakout group sessions, one organized around the intervention, the other around participants’ identified role in the agency. Intensive training was in two phases, didactic two-day sessions followed by participants paired with trainers for ongoing technical assistance and telephone contact, with an on-site booster session. Results: the four agencies receiving the road-showonly standard condition did not make any changes in services. Of the five sites that received intensive training, two implemented the MFG model, one modified existing programs to incorporate MFG principles, and two made no changes. The intensive training was thus viewed as a partially successful mode of implementing MFG (Dixon and Dunne, 2002).
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APPLICATION AND FIDELITY ISSUES The Evidence-Based Practices National Demonstration Project (EBPP) at Dartmouth Medical School focuses on implementation of empirically-supported clinical practices for severe mental illness. A team of national experts developed implementation packages for six EBPs: Medication management; Assertive Community Treatment (ACT); Family Psychoeducation (FPE): Illness Management and Recovery (IMR); Integrated Dual Diagnosis Treatment (IDDT); and Supported Employment SE). Implementation packages developed during Phase I included instructional videotapes, important research articles, fact sheets, workbooks, and fidelity scales. During Phase II, implementation packages together with consultation were field-tested in 52 agencies across eight states (Marshall, 2007). The Dartmouth EBPP analyzed implementation issues for the five EBPs (eliminating medication management) (Isett et al., 2007). Teams conducted interviews with state mental health authorities, consumers, families, representatives of local mental health authorities, and other relevant state agencies. Interviews took place at two points in time at least one year apart. With respect to FPE, the following key elements were specified: For families and other people who provide support to a consumer Collaboration between family and clinician optimizes the outcome of mental illness Family education helps relatives support their loves ones in pursuing recovery goals Reducing family stress and improving coping can improve the quality of all members’ lives Family support can validate the experiences of all members and facilitate shared problem-solving Family collaboration is long-term, not short-term Structure: joining sessions to develop an alliance with the family, educational workshop and ongoing education about the illness, and multi-family group with a focus on problem-solving (Isett et al., 2007)
FPE was implemented in three states, Maryland, Vermont, and New Hampshire, as part of a patient’s overall treatment plan. Marshall (2007) described the process as follows: •
•
Clinicians met with consumers and families individually and jointly and established rapport. They participated in a one-day educational forum and then joined a multi-family group that meets bi-weekly for nine months or more. Consultants, trained by FPE toolkit developer William McFarlane, M.D., and Dartmouth staff, were assigned to participating agencies. They provided intensive
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FAMILY PSYCHOEDUCATION FOR SERIOUS MENTAL ILLNESS training and technical assistance for the first two years of the project. They worked with state planners to open a Medicaid code so that agencies can bill for individual and group FPE services. For this project, the State Mental Health Authorities also provided a $10,000 incentive for start-up costs. Implementation monitors visited sites monthly for a period of two-and-a-half years as participant–observers and also attended key agency events. They conducted fidelity assessments every six months, including chart reviews and interviews with key stakeholders such as administrators, clinicians, consumers, and family members.
MAJOR ISSUES IN IMPLEMENTATION Marshall (2007) described the process and outcome of implementation in one fee-for-service mental health clinic. During the course of the EBPP, the clinic instituted two FPE multi-family groups. The first group consisted of eight clients and 12 family members and met for nine months. The second group consisted of five clients and seven family members and was still meeting after 12 months at the end of the EBPP. Nevertheless, “While the FPE staff was able to successfully conduct two FPE multi-family groups with high fidelity to the model, the agency was unable to develop a sustainable FPE program” (p. 116). Problems seemed to consist of staff attrition—loss of psychiatric staff with appropriate training. Although staff were enthusiastic and observed significant improvements in the wellbeing of their clients, the agency had no plans to recruit new staff or to integrate the FPE program into standard services. In the EBPP study, issues regarding implementation of Family Psychoeducation were as follows: 1 Reimbursement. Does the consumer need to be present for reimbursement? A session with collateral individuals may not be reimbursed. 2 Consensus- building and commitment of stakeholders. There were some fears that FPE within the system might be competitive with NAMI’s Family-to-Family program, which also receives state money for family education. 3 Training and Appropriate Administration.
The survey indicated questions about the appropriate persons who were competent to provide psychoeducation. Many in the consumer movement believe that only people who have experienced the illness or have been affected by the illness, such as family members, can effectively communicate what it is like and what to expect. Family-to-Family, as indicated, is provided by family members carefully trained by a psychologist-family member, using manualized materials. Again, this barrier against incorporating FPE as standard practice seemed like competition with Family-to-Family or Peer-to-Peer.
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The authors acknowledged that respondents were identified and suggested by the mental health commissioner’s office. This office was most likely to identify individuals with whom they were familiar, those in the consumer and family advocacy organizations who served on their planning boards. Thus, a major barrier came from advocates themselves who, having given up hope for educational services from the mental health system, had developed their own models of family education. A further study looked at fidelity outcomes for the five EBPs that were implemented in 53 community mental health centers across eight states. For a two-year period, the study looked at implementation of supported employment, assertive community treatment, integrated dual disorders treatment, FPE, and illness management and recovery in these sites. FPE, assertive community treatment, and supported employment were at or above the threshold value for fidelity. However, it is noteworthy that FPE was implemented in an average number of states (three), but the least number of sites (six initially, and four final sites), in contrast to nine to 13 sites for the other EBPs (McHugo et al., 2007).
SOME SUGGESTED SOLUTIONS Marshall’s conclusions regarding implementation of FPE or any EPB were as follows: 1 2 3 4 5
Align financial incentives to promote the EBP Revise agency policies to integrate EBP principles Revise agency procedures such as intake and employee position descriptions Educate staff agency-wide to develop understanding of the EBP Integrate EBP process and outcome measures into their quality assurance process (Marshall, 2007, p. 121)
The reimbursement issue continues to be problematic. There is considerable variability both in insurance and Medicaid policies with respect to FPE as a discrete treatment. In my own work I have discovered that families must be enrolled as patients themselves in order to receive services, and FPE is generally covered as family therapy although it is a totally different type of type of intervention. McFarlane has probably had the most experience in implementing MFG. In the United States he states that “In New York, Michigan, and Maine, there are special Medicaid rates and codes for MFG and family work in general, and the Northeast Medicare carrier adopted specific codes and rates. . . . Many places have tried the family therapy routine . . . this needs a federal solution” (W.R. McFarlane, personal communication, May 12, 2008).
Two letters to Psychiatric Services by clinicians and researchers who have been active in delivering family services offer some solutions to problems of implementing FPE
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in community mental health centers (CMHCs). Mueser and Fox (2000) suggest that the major obstacle is the lack of specific individuals who have the authority to see that family services are provided. They “propose that each CMHC designate an individual who is the director of adult family services . . . empowered by the agency to ensure that appropriate, culturally competent, and collaborative services are provided to families of persons with serious mental illness” (p. 1452). The authors provide a job description designating primary functions, which include identifying and training clinicians in family work; leading and supervising family work; monitoring the delivery of family services; developing, implementing, and overseeing family programs; working with a family advocate as a liaison with NAMI; and participating in continuing education activities. They propose that the director of family services be on the same level as directors of vocational rehabilitation, dual disorders, and other service specialty areas. In a subsequent letter, Mannion, Solomon, and Steber (2001) fully supported this suggestion and added additional solutions based on meetings with providers, consumers, family members, and administrators. The three major barriers were identified as confidentiality issues, providers’ reluctance to deliver a non-billable service, and the need for staff training for effective collaboration with families. They suggested the following implementation activities: (1) secure a commitment from the county mental health administrator for program funding, or to include family education as an in-plan service when the county shifts to managed care; (2) implement a single-family model of collaborative family education for designated family members, complemented with referrals to support groups and NAMI family education programs; (3) produce a training manual for staff training; (4) ask all supervisors to identify staff members interested in family education. In the absence of grant monies to implement EBPs, the authors suggest that “educating country administrators about the costs of ignoring this problem may help start the process of system change” (Mannion, Solomon, and Steber, 2001, p. 387). In this chapter we have presented research findings that indicate a relatively low degree of adopting FPE in clinical services. Barriers to implementation may include reluctance on the part of families, clinicians, and administrators. There may be reluctance from some consumers concerned with independence or confidentiality, although to date there are no empirical data indicating consumer objections. Many families have practical problems, such as time and distance, with participation. Clinicians may be reluctant to assume added responsibilities and may lack the requisite knowledge and skills. Administrators are reluctant to add services without additional funding and may ignore the long-term cost– benefits of FPE. Research on implementation of FPE in several states disclosed the process undertaken and fidelity issues. The major issues identified included reimbursement and financial incentives; commitment of stakeholders; and training and appropriate administration. Various solutions were offered by seasoned
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FPE researchers and clinicians, such as establishing an agency position for familyfriendly services, staff training, and funding commitments from county or state mental health administrators. Research-based FPE, focusing on patient outcome, has reached far fewer participants than the thousands of families reached by briefer family education models. As we indicated, there are findings of improved knowledge and family well-being from the two major family-led educational programs, Journey of Hope and Family-to-Family. But evidence of positive effects on patients comes primarily from the FPE research. Moreover, the key elements in designing the implementation research previously discussed specify that more than education is needed. There must be collaboration between clinicians and family support persons, and the collaboration must be long-term. This suggests far more than simply educating families about the illness. It implies a clear role for supportive families in the treatment plan.
12 UN R ES O L V E D I S S U E S I N F AM IL Y PSYCHOEDUCATION a critical assessment
We have discussed a variety of studies of FPE from many different countries. There have been a few negative or unexpected findings. Among unacculturated Spanishspeaking immigrant families in the United States, Telles et al. (1995) found that an empirically-validated model of behavioral family treatment led to significantly poorer outcomes than did standard case management. In Spain, Canive et al. (1996) found no differences between an FPE and control group. In a Danish study, group sharing and mutual support seemed more important than simply gaining knowledge of psychosis (Buksti et al., 2006). In the Netherlands, Cuijpers and Stam (2000) found that family support groups were significantly more effective in reducing family burden than education alone. Linszen et al. (1996) found that families with low expressed emotion (EE) can find training in communication and problem-solving stressful, and experience it as criticism rather than helpful. This may even trigger relapse rather than preventing it. Yet, the vast majority of studies of FPE are indeed based on developing communication and problem-solving skills, and these show benefits in terms of lower relapse and re-hospitalization rates, improved social functioning, greater understanding of the illness, better adherence to treatment, reduced family burden, and enhanced family functioning. Schooler et al. (1995) have pointed out that although family interventions have been offered in various modes of presentation, they have not differed significantly in outcomes. In a study of what participants themselves find helpful, Budd and Hughes (1997) found that in addition to knowledge, the positive impacts of emotional support, backup, and reassurance were even more valued than behavioral techniques and skills acquisition. And recently, a valuable tool has been developed by a team of researchers who have conducted numerous studies of FPE in the Optimal Treatment Project in Europe. The Questionnaire of
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Family Functioning, has been validated as a standardized instrument to evaluate family psychoeducational treatments (Roncone, Mazza, Ussurio, Pollice, Falloon, et al., 2007). Many questions remain, however, with respect to formats, presentations, duration, and content that will be optimally beneficial to most families and patients. First, what do participants learn, and how do they apply it? An interesting study questioned whether there were gender differences in knowledge acquisition during a six-week FPE program. Over a 46-month study period, 115 caregivers (58% female) participated, with a highly significant (p<.001) improvement in six specific areas of knowledge. However, there were gender differences in types of knowledge acquired. Females gained more knowledge overall and specifically in the areas of signs and symptoms, recovery, and caregiver support. Males gained more knowledge about risk factors, while gains in medication knowledge were equal (McWilliams, Hill, Mannion, Kinsella, and O’Callaghan, 2007). Aside from the plurality of female relatives in FPE sessions, are there other distinguishing characteristics of those likely to attend? A study by Kronmuller et al. (2006) in Germany of FPE groups for affective disorders found that relatives of male patients were more likely to attend, and relatives of bipolar patients were more likely to attend than those with unipolar depression. How do we deal with families who are unable to come, or to stay for the full number of sessions? What resources are available for them? Is psychoeducation best with individual patients and families, or in multigroup format, with or without the presence of patients? Of considerable interest is the study by Chien, Chan, and Thompson (2006) in Hong Kong, which found the mutual support group, without the patient present, significantly superior to psychoeducation and standard care. The McFarlane multi-family model is increasingly being utilized in many parts of the world as the most cost-effective form of FPE, its relative advantages indicated in Table 5.5 and Figure 5.1. It would seem that regardless of culture, the mutual support offered by family groups may be beneficial to patients even when they do not actively participate in the intervention. Is a standardized, manualized approach most beneficial in real world settings, or should format and content be adapted to different populations or to different cultural groups? Do different family members, such as parents, siblings, spouses, and adult children require approaches tailored to those relationships? Should content be adapted to different stages in the family life cycle, or to coinciding stages of the illness? In a study of parental age and its relationship to family burden, Cook, Lefley, Pickett, and Cohler (1994) found different concerns at different stages in the family life cycle. They suggested that among younger patients, FPE might focus more on managing difficult behaviors and substance abuse. For aging parents, coping with anxieties about their own growing disabilities and planning for patients’ future after the death of their caregivers may be topics of greatest need. Indeed, research on aging parents of dependent adults with mental illness clearly
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indicates that fears about the future of their loved ones and inadequate planning are their most worrisome concern (Lefley and Hatfield, 1999; Hatfield and Lefley, 2000). Mental disorders are variable both in course and intensity, and there is currently a strong emphasis on recovery. In addition to life-cycle changes, is FPE more effective if it is tailored to stages of recovery? (Lefley, 2007). Do first-episode or early-intervention patients require a different approach? Do different diagnoses require a different approach? Is specific content needed for families of patients with co-occurring substance abuse, forensic problems, or maladies such as AIDS? And is FPE in itself an adequate treatment, or does it need to be offered within a larger package of evidence-based services for multiproblem patients? And for chaotic families facing exceptional difficulties, are psychoeducational techniques sufficient? Or can some benefit more from adding multi-systems family therapy (Leff, 2005) or even from systemic family therapy alone (Bressi et al., 2008) Finally, is time-limited FPE, even the research-based minimal nine-month model, adequate for disorders that may last for many years and pose unforeseen problems all of which cannot possibly be addressed? We have presented evidence here of long-range positive effects in specific dimensions, but there is also evidence that unanticipated aspects of family burden may clearly arise over time. Carra, Montomoli, Clerici, and Cazzulo (2007) found that the benefits of FPE declined after 24 months and that relatives again became more vulnerable to objective burden. Is FPE an adequate answer, or should service systems make available ongoing support to caregivers over the course of an illness? What if the patient has no family? Should psychoeducation be extended to those in loco parentis, to staff of residential centers or support persons in group homes? Several reports in the literature indicate that the FPE model can be applied successfully in non-familial residential settings (Drake and Osher, 1987). Ranz, Horn, McFarlane, and Zito (1991) reported on a three-component FPE model that was used to creating a calm, supportive low-demand environment of graduated expectations in a supervised residence. In contrast to their prior emphasis on goal attainment, which is often stressful, staff members were trained in supportive interaction, a medication-monitoring program, and a behavioral approach to problem-solving. Does patient psychoeducation differ in its effects from psychoeducation that includes their families? Whether alone or as supplemental to psychotherapy, psychoeducation has now been incorporated in the armamentarium of treatment interventions for the clients themselves. As with families, it is offered in individual and group form. A recent meta-analysis of the research evaluated short- and long-term efficacy of psychoeducation that is directed solely at the persons with mental illness vis a vis psychoeducation that includes or is directed toward family members. The variables of interest were relapse, symptom-reduction, knowledge, medication adherence, and level of functioning. From an analysis of 199 studies,
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19 comparisons of family-client or client-alone psychoeducation met the inclusion criteria. The authors found that independent of treatment modality, psychoeducation produced a medium post-treatment effect for relapse and a small effect for knowledge, but no effect on symptoms, functioning, and medication adherence. Effect sizes for relapse and re-hospitalization remained significant for 12 months after treatment, but failed significance for longer follow-up periods. Interventions that included families were more effective in reducing symptoms and preventing relapse at 7- to 12-month follow-up, whereas effects for psychoeducation directed at clients alone were not significant (Lincoln, Wilhelm, and Nestoriuc, 2007). The importance of avoiding high EE is relatively salient in FPE, but the actual role of high EE in promoting symptomatic behavior is still problematic. While this is considered almost axiomatic, several findings in the literature question whether EE is properly assessed, and if so, why there should be negative findings with certain populations. For example, a study of the effects of integrated treatment, which included Assertive Community Treatment, FPE, and social skills training, on medication adherence found that patients living in families with low EE were less adherent than patients living in families with high EE (Morken, Grawe, and Widen, 2007). This is a surprising finding, unless the emphasis on avoiding high EE makes some families fearful of insisting on patients taking their medications. Another study of EE in families of persons with borderline personality disorder (BPD) also suggests that responses of people with schizophrenia or bipolar disorder may differ significantly from those with BPD (Hooley and Hoffman, 1999). To recapitulate, high EE in a family member is not only hostile criticism but emotional over-involvement with the patient. People with schizophrenia and bipolar disorder have a greater tendency to relapse under these conditions. On the other hand, people with BPD seem to respond positively to emotional over-involvement and do better with these parental behaviors. The authors suggested that heightened concern and over-protectiveness may be perceived as a kind of validation by people with BPD. Another issue relates to the role of criticism and how it is assessed. A study by Chambless and Steketee (1999) investigated the relationship of EE levels to the outcomes of behavior therapy for obsessive–compulsive disorder (OCD) and panic disorder with agoraphobia. Controlling all other EE variables, relatives’ hostility was related to six times the risk of a patient dropping out of therapy. However, contrary to expectations, non-hostile critical comments predicted significantly better outcome. Van Noppen (2002) noted that “when delivered without hostility toward the person as a whole, criticism may be a potential motivator for OCD patients who use avoidance to neutralize anxiety . . . (It) might push patients to face their fears, an important ingredient in exposure-based therapy” (p. 109). Evidence-based FPE was designed primarily by professionals. There has been subsequent input from families from time to time as models and manuals were refined. Nevertheless, there are concerns that most models fail to address many
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issues that are part of the caregiving experience. Glanville and Dixon (2005) have noted that while FPE is expected to alleviate family burden, “the definitions and operationalization of this experience into subjective and objective components neglects the complexity and the multi-dimensional nature of the caregiving experience. In addition . . . family interventions have neglected to address the range of issues and concerns that impact those caring for mentally ill relatives. These two factors may be significant contributors to the under-utilization of family-based services by relatives of individuals with schizophrenia” (p. 2005). They note that the briefer models developed by NAMI, Journey of Hope, and Family to Family, do address some of these issues. This leads to the question of the role of peer-led versus professional-led FPE. Although peer-led family education focuses on the needs of families, the research by Chien, Chan, and Thompson (2006) indicated that sometimes, FPE groups led by trained family members may be even more effective than professional-led FPE groups in improving patients’ functioning. Pollio, North, and Foster (1998) conducted an interesting study in which participants in a psychoeducational workshop were asked to identify and rank order the problems they faced in managing mental illness. A total of 355 items were analyzed for content, and 11 problem categories were identified and ranked. They were then compared with the content of multi-family psychoeducation programs. The results suggested important distinctions, particularly in families’ greater emphasis on negative symptoms and on family relationships. Items of concern to families included patients’ denial and non-adherence to medications; disruptive and problem behaviors; interpersonal and social relationships; issues of dependence and independence; mood disorders; and especially dealing with negative symptoms of schizophrenia. Although many of these issues are discussed in FPE, there is differential emphasis on didactic components vis a vis dealing with here-and-now problems in family relationships. This need was especially evident in a large study of caregiving burden and burnout among relatives attending 19 FPE groups organized by nine community mental health centers in the Netherlands. Their findings suggested that “psychoeducation should concentrate on helping relatives cope with the strain of the relationship with patient and on improving their ability to cope with the patient’s behavior” (Cuijpers and Stam, 2000, p. 375). Finally, does the patient remain the major focus of interest? Or is alleviation of family burden and caregiver distress an equally legitimate target? It is clear that most mental health systems are concerned only with their patients, and most mental health professionals are trained to involve others only as in a secondary capacity, as adjuncts to treatment. Our whole professional culture is built on the premise that the patient is our central concern. Even the “identified patient” of family therapy is the core for whom records are kept and third-party payers are billed. We return to the original distinction between FPE and family education. The patient’s progress and the overall well-being of the family are presumably
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inter-related, but is it legitimate to target alleviation of relatives’ burden without any effects on the patient’s illness? Evidence-based psychoeducational interventions were studied in funded research projects, with rigorous designs and adequate length of time. They had clear outcome measures such as relapse reduction and symptomatic and functional improvement. Studies of interventions that alleviate caregivers’ distress, typically limited to family education without the patient present, are hampered by the typically briefer time frames and less rigorous sampling. Many reviews have reported positive effects on families’ burden or distress, but these are not always significant or consistent with positive outcome of patients (Kazarian and Vanderheyden, 1992; Solomon, 1996). Johnson (1994) reviewed six studies of family interventions that focused on relief of family burden. Three studies had positive effects, and three studies reported no significant effects. Szmuckler et al. (1996) conducted a controlled trial of six weekly home-based counseling sessions for caregivers with the patient absent. A control group received a one-hour educational session. There were no group differences in coping style or negative aspects of caregiving. The authors concluded “It is easier to influence understanding of, and attitudes toward the patient than caregiver distress or coping” (p. 154). Cuipers (1999) conducted a meta-analysis of 16 studies of family interventions in which at least one outcome measure involved family burden. The measure had to refer to an element that connoted subjective burden (e.g., psychological distress) or objective burden (e.g., provision of support). The analysis revealed that family interventions can have considerable effects on relatives’ psychological distress, patient–family relations, and family functioning. However, effects were modest at post-test. Large effects were found in only a subset of six studies, the majority of which had 13 or more sessions. Cuipers concluded that interventions with less than 10 sessions have little effects on relatives’ burden. Cuijpers also concluded that “it is possible that greater effects can be expected from interventions aimed at partners or relatives of patients with other illnesses than schizophrenia” (pp. 282–283). This is a very important consideration. As I have noted previously (Lefley, 2001), it is possible that the behaviors and disruptive effects of schizophrenia are such that more than psychoeducation is needed to alleviate family burden. Here, opportunities for respite, or adequate residential facilities that permit the consumer to live outside the family home, may be equally as or more important than psychoeducation. Additionally, opportunities for advocacy that yields funding for better services or for needed research, antistigma campaigns, police training, and other efforts targeting changes in public attitudes, may be greater relievers of burden than simply participating in psychoeducational groups. In sum, this chapter has noted that despite some negative or unexpected findings. The vast majority of studies of FPE have shown impressive effects. For persons with mental illness, these are manifested in lower relapse and recidivism
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rates, improved social functioning, greater understanding of their illness, and better adherence to treatment. For their relatives, there is evidence of reductions in family burden and distress, and improvements in family functioning. Nevertheless, questions remain as to appropriate format and content, and optimal duration. We have mentioned research on differences in male and female participants with respect to areas of knowledge acquisition. Other studies have shown differences in family attendance according to the sex or diagnosis of the patient. We question how FPE can be delivered to the many families who cannot attend FPE sessions, and how resources can be provided to them. Other questions are posed with regard to patient present or absent, individual or multi-family format, the importance of manualization, and cultural adaptation. Should content be adapted to the age of the patient, to different kin relationships, to different stages in the family life cycle, or different stages in the illness trajectory? Optimal duration of FPE sessions, even as high as 48 months, cannot deal with unanticipated aspects of family burden that arise during the course of the illness. Is FPE sufficient without the availability of ongoing clinical support? Finally, with increasing community residence outside of the family home, should FPE be targeted to case managers or staff of residential facilities rather than to family caregivers? The continuing salience of high EE as a basic feature of FPE is discussed, in light of research that demonstrates diagnostic differences in response to emotional overinvolvement. Research also suggests possible dangers in families perceiving the EE findings as a need to avoid non-hostile criticism or reasonable demands. We also discuss the complexity and multi-dimensional nature of the caregiving experience, and the inability of FPE to address the range of problems that may be of greatest concern to caregivers. Research suggests that families place greater emphasis on issues that cannot be fully dealt with in FPE. These include patients’ denial and non-adherence to medications, disruptive and problem behaviors, negative symptoms and moods, family relationships, and handling issues of dependence and independence. Finally, we raise the critical question of whether the patient alone should remain the central concern of clinicians. When families develop specific psychological and practical needs generated by the illness of one of their members, what is the responsibility of the patient’s clinician? Are families simply adjuncts to treatment, or is there a need to alleviate their distress? This question may inform the basic structure and content of psychoeducational interventions. We also question whether FPE is sufficient to alleviate family burden without adequate residential facilities for consumers to live outside the home and a treatment system that serves their social as well as psychiatric, medical, and rehabilitative needs. FPE is arguably just one element in an integrated system of care. For families and patients, FPE alone is desirable but insufficient. It should be accompanied by a forum for advocacy that can insure public and legislative support for a high-level system of care.
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The introduction of any innovation in care must be viewed within the context of barriers, available resources, and incentives. In terms of acceptability, however, perhaps the zeitgeist is the most important consideration. In this final chapter, we discuss future trends in mental health care, particularly the roles of different stakeholder groups in the mental health enterprise. These may affect the availability of evidence-based practices (EBPs), including family psychoeducation (FPE), in the service repertoire. Most of this book focuses on mental health systems and policy in the United States. In terms of government policy, the Community Support Program of the Center for Mental Health Services (CMHS) was highly instrumental in aiding the development of the family organization, National Alliance on Mental Illness (NAMI), as well as the consumer movement, and offering grant inducements to fund their multiple activities (Lefley, 2008). CMHS also helped provide funding to individual state administrations for offering the NAMI “Family to Family” program. More recently, the Department of Veterans Affairs (VA) sponsored a conference, the Family Forum “to assess the state of the art regarding family psychoeducation and to form a consensus regarding the next steps to increase family involvement. The forum reached consensus on these issues: family psychoeducation treatment models should be optimized by efforts to identity the factors mediating their success in order to maximize dissemination, leadership support, training in family psychoeducation models for managers and clinicians, and adequate resources are necessary to successfully implement family psychoeducation” (Cohen et al., 2008, p. 40). Because FPE may not be possible or appropriate for all families, the forum developed a population-based family services heuristic for working with families of persons with severe mental illness at different levels of intensity, tailored to individual needs and circumstances.
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Some other nations seem to have a more direct policy of helping families who care for persons with disabilities, including means of communicating with and educating caregivers (called carers in the United Kingdom and other English-speaking countries). In the United Kingdom, a government Web site aimed at professionals who work with carers specifies required services and good practice in the interactions of service providers and carers. The Carers Equal Opportunities Act of 2004 seeks, “to give carers more choice and better opportunities to lead a more fulfilling life by ensuring that carers receive information about their rights to an assessment . . . Clause 2 ensures that those assessments now consider the carer’s wishes in relation to leisure, training, and work activities. The third clause provides for cooperation between local authorities and other public authorities, including housing, education, transport, and health, in relation to the planning and provision of services that may help support the carer in their caring role” (United Kingdom Department of Health. The Carers Act, 2004. Retrieved 10-22-07). Under this Act, many authorities conduct carer awareness sessions for hospital and frontline staff. Building Family Skills Together is a two-year implementation and research project that aims to implement family psychoeducation as part of routine care within an Adult Mental Health Service in Melbourne, Australia (O’Hanlon, 2007). The project focuses on incorporating behavioral family therapy (BFT) within the case management provided by continuing care teams for people with serious mental illness (SMI). The project has a significant research component to compare outcomes for consumers and families receiving BFT with an appropriately matched control group. The World Fellowship for Schizophrenia and Allied Disorders (WFSAD) has advocated an Integrated Mental Health Care Program based on the research of Ian Falloon and the Optimal Treatment Project (Froggatt, Fadden, Johnson Leggatt, and Shankar, 2007). Adapted for developing countries, this model could well form the core of services in the industrialized world as well. The program has the following steps: 1 Form a patient resource group, consisting of the mental health worker, family and friends, and the patient. 2 The mental health worker will assess the symptoms and teach about the disorder, explain the medication, help the family and patient cope with stress by teaching coping skills; encourage them to find new ways of handing difficult problems and to practice problem-solving; help with crises in their lives; and teach them to reward each other. 3 The resource group will meet in regular one-hour sessions for about 10–12 weeks. 4 During this time, the participants would come to understand the mental disorder, practice new skills, assess problems and goals of patients and family
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members, understand each other’s problems, strengths, and weaknesses, and use all the resources they could find to develop a good treatment plan.
This book also offers recommendations on what service recipients can do to affect national mental health policy, although this may vary from county to country. Among the trends shaping the future of mental health care in the United States is the increasingly important role of mental health consumer advocates. Mental Health, United States, 2004 (Center for Mental Health Services, 2006) reported that from 1990 to 2002, the number of mental health consumer organizations doubled to about 2100, with a growing influence on federal policy. The President’s New Freedom Commission on Mental Health Report (2003) similarly indicated that such groups will have a larger role in providing information and coordinating services for persons with mental illness. Daly (2007) notes that “Although these organizations have many limitations and frequent funding shortfalls . . . they may be the only entities in the community that interact with each of the disparate federal, state, and local agencies and provide integrated services, supports, and opportunities for recovery in one location” (p. 11). A spokesperson for the CMHS is quoted as saying “The evolution of the consumer movement has a tremendous impact on federal policy”(p. 11).
DIVERGENT INTEREST GROUPS Consumer organizations, however, seem to be divided into those that merge selfhelp and clinical treatment, with an emphasis on personal problem resolution and growth, and others that merge self-help with political advocacy for a consumer role in services (see Kaufman, 1999; Lefley, 2008; Rismiller and Rismiller, 2006). The consumer movement, which is primarily composed of proponents of consumer empowerment, seems to have a large number of highly talented and articulate individuals. It is assumed that all persons who identity as consumers, ex-patients, or survivors have endured the agonies of mental disorder, social stigma, and demeaning experiences. Some have experienced forced treatment and unwanted hospitalizations, others homelessness or even jail. They have all suffered and a substantial number feel that the services they received were counter-therapeutic. Yet many members are highly functional and not necessarily representative of an extremely heterogeneous group of individuals identified as seriously mentally ill. The issue of who represents whom may be compounded by the directive of the New Freedom Commission on Mental Health (2003) that places equal emphasis on two approaches; consumer-driven recovery models and clinician-driven evidencebased practices (EBPs). Most state initiatives plan to devote equal funding and resources to each approach (Daly, 2007).
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Sy Saeed, M.D., Chair of the Department of Psychiatric Medicine of East Carolina University points out that “Some patient groups regard evidence-based practices as almost a ‘right-wing conspiracy’ because they run counter to the recovery model’s emphasis on phenomenological experiences and the autonomous rights of those in recovery” (Daly, 2007). Several “prosumers,” clinicallytrained mental health professionals who themselves have a history of mental illness, have written cogently about the distinction between these two groups with respect to the recovery vision (Frese, Stanley, Kress, and Vogel-Scibilia, 2001). These authors state that advocacy for evidence-based practices, such as that offered by NAMI, is essential for the more seriously disabled consumers. Advocates who focus on consumer empowerment are those who are further along the road to recovery. These consumers merit increasing autonomy and input into the types of treatment and services they receive. The authors propose an integrative theory that maximizes the virtues and minimizes the weaknesses of each model. They also suggest that graduate and professional schools should be encouraged to recruit consumers in recovery for their training programs, both as teachers and as students. This way the programs will benefit from consumers’ experiential input and provide a scientific background for consumers to become knowledgeable mental health providers. Among those consumers designated as seriously disabled are many who lack insight, refuse to acknowledge their disorder, and reject treatment. Perhaps because of this, there are paradoxical discrepancies in the value of psychoeducation for families, and for consumers. Peter Weiden, M.D., Director of the Psychosis Program in the Department of Psychiatry, University of Illinois Medical Center in Chicago, has pointed out that it is important to differentiate FPE from patient psychoeducation. He noted that among patients with families, FPE has demonstrably improved medication adherence. However, with patients with schizophrenia, particularly those who reject the diagnosis, an educational program that explains the disorder may have completely opposite effects. “We risk the problem of turning off the very patient we want to help engage in treatment. That is, in my opinion, one of the central problems to psychosocial interventions to improve adherence in schizophrenia—the lack of insight and not acknowledging having schizophrenia or whatever name for the psychiatric disorder is used is a real barrier to engaging people into taking medication” (Weiden, 2007, p. 2). His research demonstrated that cognitive–behavioral therapy,by addressing patients’ definition of their problems, exploring the effects of medications, and eschewing a biomedical explanatory model, provided greater treatment adherence than psychoeducation. On the other hand, it has been pointed out that lack of insight does not prevent patients from benefiting from illness management training (Gingerich and Mueser, 2005) and that family psychoeducation has often provided explicit guidelines on how to collaborate with patients who lack insight (Mueser and Glynn, 1999).
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The future may thus be shaped by divergent views within two distinct groups: (1) clinicians and consumers and (2) families and consumers. With respect to implementing the New Freedom Commission report’s recommendations, Daly (2007) notes that “Clinicians . . . are concerned that an emphasis on consumerdirected care may result in patients and their families telling trained professionals how to provide care” (pp. 14–15). Yet the collective term “patients and their families” may describe two very different constituencies. Families of persons with severely disabling mental illnesses are likely to prefer professionals to administer treatment with consumers playing a supportive rather than directive role. The “patients” in this linked term may declaim their desire for autonomy, but would probably have no desire or capability to run service systems. “Patients” in this context are different from consumers. Because the definition of consumer is extremely broad and inclusive of all levels of disability, persons active in the consumer movement may or may not be current recipients of psychiatric services. They may not even need professional interventions themselves. Their claim to expertise in administering mental health services comes from prior experience, both with mental illness and with the mental health system, but in most cases, it is idiosyncratic and based on individual experience rather than standardized training. The issue is rather different when it comes to Family-to-Family or Peer-to-Peer, programs administered by people who have been trained with professional state-of-the-art materials. But these are educational programs, not training for administrative or clinical positions in mental health systems.
CONSUMERS IN THE MENTAL HEALTH WORKFORCE The National Council for Community Behavioral Healthcare, an association of 1300 behavioral health-care providers, has published a manual for incorporating consumers in the mental health workforce (Townsend and Griffin, 2006). They state that member organizations employ approximately 250,000 staff and include clinics, community mental health centers, rehabilitation, clubhouse and residential programs, and community hospitals. The manual was developed to answer questions on how they can successfully recruit and integrate consumer staff. Consumers are defined here as persons “diagnosed as having a mental illness that impedes competitive employment opportunities and/or a history of inpatient psychiatric admissions” (p. 2). The authors stated that although consumers are primarily hired into specialized peer support positions, they serve in many different roles at all different levels, including direct service, management, administration, and board of directors. The manual, however, is oriented primarily toward direct service and realistically addresses issues involved in this type of employment. This manual makes a valiant attempt to view consumers both as regular staff members and as staff members with special needs. On the premise that many
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consumers receive disability benefits, jobs are frequently for reduced hours and minimum pay scales that will not jeopardize receipt of federal entitlements. What expectations and accommodations are appropriate for employees with a mental disability? This issue is carefully discussed, together with a list of reported difficulties that can affect their work. Problems may involve screening out environmental stimuli, sustaining concentration and stamina, handling time pressures and multiple tasks, responding to negative feedback, and dealing with side effects of psychotropic medications while working. These issues require understanding and accommodation in terms of agency policies. Examples given are job restructuring or reassignment, part-time or modified work schedules, or unpaid leave. And when a consumer-employee doesn’t work out, there must be clear discharge policies that do not exacerbate the illness. The authors attempt to provide guidelines for the complicated employment of persons with dual identities. There is a salutary sample code of ethics derived from Hawaii and New Mexico manuals. Happily, the manual states that agencies should not automatically prohibit “fraternization,” and that consumer-providers should be able to maintain prior friendships while being clear about maintaining boundaries between work and socializing. Yet, agency policy may make it very difficult to hire someone who is personal friends with, lives in the same facility, or shares a therapist or support group with agency clients. In areas where the community of mental health clients is relatively small, this may rule out potentially valuable applicants. The parameters of “intimacy” and “boundaries” are exceptionally difficult to resolve for consumer employees. In fact, they are largely derived from older psychodynamic treatment models and may require redefinition for the field as a whole. The vast area of issues covered by the manual suggests that it may be quite difficult to maintain a constant consumer presence in existing mental health systems. Yet, it is quite unlikely that states would fund consumer-run mental health services without a concurrent professionally-run system, nor would society stand for the elimination of professionals from mental health care. Moreover, the research on consumer-operated services shows great promise, but rarely the level of effectiveness required for keeping people stabilized and out of hospitals.
CAN FAMILY PSYCHOEDUCATION LEAD TO FAMILY ROLES IN TREATMENT? Glynn, Cohen, Dixon, and Niv (2006) have discussed the potential impact of the recovery movement on family interventions for schizophrenia. They note that at a basic level, family interventions are entirely in accord with a recovery orientation because they are primarily community-focused and deal with the real world. They also note that consumers’ participation in family psychoeducation has been
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correlated with higher consumer scores in knowledge, empowerment, hope, and optimism (although not in satisfaction with life). Nevertheless, these authors feel that the interventions generally reflect older models of serious mental illness that are grounded in assumptions of chronicity rather than of persons capable of taking responsibility for their own recovery. Despite this caveat, these authors state “There are aspects of existing family interventions that resonate with a recovery outlook, including consumer-directed goal setting and problem focus, educating consumers about their own illness, and focusing on the whole person by assessing his or her quality of life and not simply symptom constellations and hospitalizations. Yet there is still work to do to align family research and services with a recovery orientation, including working toward recognition of different family constellations, adjusting for illness phases and unique consumer characteristics, and broader operationalization of family services” (p. 460). To this end, they recommend systems change that, with consumer consent, promotes making family members a part of the treatment team. Families’ participation in treatment seems to be a natural concomitant of family psychoeducation. People who invest time and interest in psychoeducational sessions have indicated their commitment to understanding the illness and to helping their loved ones achieve some degree of recovery. On a practical level, family members observe behavioral changes, responses to specific medications, and prodromal cues of decompensation. They are familiar with diurnal rhythms that affect mood and sleep patterns, and they can identify stressors. They know good periods as well as bad. They know patients’ strengths and are usually eager to help them develop their native talents and capabilities. They can provide valuable information as well as receiving it. Their participation in treatment legitimates their identity as a resource to the team and an ally of the patient.
CONFIDENTIALITY: THE PERVASIVE ISSUE What happens with confidentiality when families are part of the treatment team? It is unfortunate that in the mental health field in particular, the boundaries of confidentiality have been most often defined by service providers rather than by consumers. Clinicians and agencies can make unilateral decisions not to share information that they define as confidential, without involving the individual in the decision. They may also withhold information from the individuals themselves. There are cases in which patients, denied access to their own psychiatric records, have had to take legal action to retrieve them (see Lefley, 2000a, 2000b). Confidentiality is an ethical imperative in most mental health services and professional organizations. For example, the code of ethics of The National Association of Social Workers (NASW) emphasizes protecting and safeguarding information and instructs social workers to receive client consent before fulfilling any
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request for release of confidential information (Marshall and Solomon, 2004). In mental health services, boundaries to information sharing have been especially strict when applied to patients’ families. This is partially a carryover from the psychotherapeutic model in which the patient’s private disclosures obviously cannot and should not be shared with others. However, families have long claimed that they do not want to know intimate details of patients’ thoughts and feelings. But they do need to know something about the patients’ medications and their anticipated behavioral effects, potential interactions and side effects, and how to ensure medication adherence without angering their relatives or encroaching on their autonomy. Much of this is taught in general terms in psychoeducational interventions, but in individual treatment plans, medications and dosage levels may change. Families want to be able to assess accountability and expected level of performance at different points in the illness trajectory. When necessary, they want to provide relevant information that may affect both medication regimens and psychosocial treatments. Many of these issues require ongoing collaboration with the treatment team, so family members should be involved. Petrila and Sadoff (1992) have suggested that rigid confidentiality rules should be carefully examined when they compromise the ability of families to function effectively as caregivers. They also note that there may be legal liability when providers fail to share critical information with families and this leads to adverse consequences, citing various court cases to prove their point. From a recovery perspective, however, it is important to acknowledge that it is the patient, not the service provider, who is the primary owner of confidentiality. In most cases, this is the person who should make the decisions regarding its boundaries. Ideally, patients should be encouraged to sign a release-of-information form designed specifically for families, an example of which may be found in the Appendix. Another release form example may be found in Solomon, Marshall, Manion, and Farmer (2002). If the release form is presented at a time when the patient can provide informed consent, and as an instrument that is likely to benefit their treatment, patients are usually willing to authorize the release of relevant information to their families. In the Pittsburgh area, for instance, where standard confidentiality procedures are used in the public mental health system, 90% of patients approached in this manner choose to sign the release form (Marsh and Lefley, 2003). Marshall and Solomon (2004) have described a model intervention that clarified confidentiality policies regarding release of information to families. Comparison of an agency receiving this intervention with another agency using standard confidentiality procedures indicated that the intervention produced greater contact, more information and greater satisfaction from families. They suggested the model may enhance collaboration between providers, consumers, and families. If a release form has not been previously signed, it may be highly therapeutic to have the patient work out the specifics of information-sharing in a conjoint
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meeting of consumer, service provider, and family members. Here, the patient is put in charge of confidentiality and makes decisions regarding specific areas to be shared, such as diagnosis, names of medications, and medication regimens and oversight. Such a meeting might also establish contractual commitments, such as the patient’s degree of participation in household tasks and decision-making, or the family’s contributions to transportation, educational expenses, and the like.
CONCLUSIONS More than 20 years ago, The National Forum on Educating Mental Health Professionals to Work with Families of the Long-Term Mentally Ill was convened by National Institute of Mental Health (NIMH) and NAMI. The conference brought together leading clinicians, researchers, and academicians with mental health professionals who had experienced major mental illness in members of their own families. The object was to obtain consensus on a number of the following questions: “Can we enable clinicians to view families as groups of individuals coping with inordinate pain, stressors, and life disruptions, rather than as malfunctioning systems contributing to the patient’s psychopathology? Can we teach them to view families as an asset rather than a liability, a resource rather than an antagonist to the therapeutic process? Can we thus enable new generations of clinicians to develop new models of working collaboratively with families, through provision of professional expertise, consultation, and liaison with advocacy groups, training, and partnership in resource development? Can we teach them also to enhance their own technologies by learning from families about human strengths, coping strategies, and learned techniques for prevention of relapse? Finally, what are the best ways of promoting institutional change and acceptance of new paradigms by mental health professionals?” (Lefley, 1990, p. xviii). The field has made some progress in recognizing the strengths of consumers and families, in appreciating the value of collaborative efforts in advocacy, but most of these questions have yet to be fully answered. FPE is mutually beneficial to all parties involved. By creating more educated caregivers, psychoeducation helps consumers and families get along, contributes to recovery, reduces relapse and re-hospitalization, improves families’ well-being, and thereby benefits providers of mental health services and society at large. Clinicians interacting with family and consumer groups are also being educated themselves. They learn the lived experience of mental illness. They also learn about strengths, insights, coping strategies, problem-solving, and potential for recovery. Eventually, greater involvement of families may come about through public demand. Exposure in the popular media of this new approach to long-term treatment of major psychiatric disorders may be one channel. A long article in the Wall Street Journal describes “family-based” or “family-focused” therapy, which differs
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in premise and structure from traditional family therapy and “forges new territory on privacy and doctor–patient confidentiality issues” (Bernstein, 2007, p. D1). The article describes modes of family education and information-sharing, consent forms that resolve confidentiality issues, and refers readers to popular diagnosisspecific books by some of the psychoeducators as well as to NAMI’s Family-toFamily classes. In Italy, a group of Optimal Treatment Project (OTP) researchers trained by Ian Falloon are still able to produce evidence of efficacy of FPE in numerous sites. Yet they point out, “Family psychoeducational treatments are not easy to implement, because they are not compatible with the theoretical training of many clinicians, are more complex to organize than standard medication and individual psychotherapy, and the positive outcomes take a rather long time” (Roncone et al., 2007). Yet, in the United States, assessments of implementation of FPE in Maine and Illinois found that many clinicians seemed ready and motivated to try new approaches. In agencies that implemented FPE, staff trainees were less inclined to accept barriers or to rely on external inducements. “The successful agencies were apparently those in which staff viewed fiscal and operational barriers as significant, dealt with or neutralized those barriers, and went on to implement MFG” (McFarlane, McNary, et al., 2001, p. 940). It may be that FPE will become a part of standard practice in some mental health systems, and remain absent from others. However, as more and more consumers live their lives in community settings other than the family home, in their own apartments, in program-affiliated residences, or assisted-living facilities, it may become increasingly important to offer psychoeducation to residential staff, case managers, and others involved in community re-entry. Several studies have looked at applying the family psychoeducational model in non-familial living situations. They involved lowering high EE in staff and teaching them the rudiments of crisis intervention, recognizing prodromal cues of decompensation, or simple problemsolving. The focus was on using FPE when there is no family (Drake and Osher, 1987). Ranz, Horen, McFarlane, and Zito (1991) described using three components of the FPE model for staff training in a supervised residence. They offered training in supportive interaction, medication-monitoring, and a behavioral approach to problem-solving, with resident groups promoting each of these components. The virtues of psychoeducation clearly go beyond family instruction. They may well be incorporated in all professional curricula, in pre-service as well as in-service training for all staff members working with persons with SMI. Because psychoeducational interventions give far more indications of practicality and acceptance by service recipients, and produce more salutary outcomes than many forms of psychotherapy, psychoeducation needs to be accorded respect as a therapeutic intervention. The current emphasis on incorporating EBPs in clinical training is hopefully a step in that direction.
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SUMMATION This book is one of a series on evidence-based practices, and family psychoeducation (FPE) is now a well-accepted treatment for schizophrenia and other forms of serious mental illness. We began with operational definitions of evidence-based treatment (EBT) and evidence-based practices (EBP), and have defined FPE as one EBP in an integrated system of care for serious mental illness (SMI). This term is then defined, with data on its prevalence, and on the scope of family caregiving in the lives of people with SMI. We have noted various models of family interventions, with their basic theoretical premises and expected outcomes. Among these, FPE is the only empiricallysupported family intervention for schizophrenia. It is increasingly being viewed as an EBP for mood disorders and various disorders of children and adolescents, and the book presents some of these programs and their supportive research findings. When we consider the historical background of the emergence of FPE, it appears that this powerful tool followed from now discredited theories of the etiology of schizophrenia and the failure of their correlative therapies. Concurrent with a proliferating body of research on the biological basis of major mental disorders was the movement toward de-institutionalization. Community re-entry generated a need for families to resume roles as caregivers or support persons, despite little knowledge of the illness or its treatments. These responsibilities formed some of the sources of family stress, and there was an emergence of research on family burden. The expressed emotion (EE) research that ushered in the era of FPE viewed families as exacerbating rather than precipitating the illness, and sought ways of training families to alter behaviors that might trigger relapse. Along with this came a recognition that families had their own needs for education, illness management, problem-solving, and other coping strategies. FPE is based on the theoretical premise of diathesis-stress in the etiology of major mental illness. The basic notion is that underlying biological deficits in certain individuals make them exceptionally vulnerable to environmental stimuli that are perceived as stressful. Family conflict, inappropriate expectations, or a hostile or emotionally demanding environment may generate hyperarousal and dysregulation, generating relapse. Data from a large number of meta-analyses are presented, confirming that FPE reduces relapse and re-hospitalizations, and improves social functioning, as well as family knowledge and well-being. We then describe in detail a large number of the seminal FPE research programs at various sites in the United States and the United Kingdom, with their format, rationale, content, and research findings. These include both schizophrenia and affective disorders. Long-term follow-up data are presented that confirm the prolonged effects of FPE in helping to prevent relapse.
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Although FPE was developed for adults, the basic format is now being applied in prodromal cases and with serious emotional disturbance of children and adolescents. We describe FPE as a supplement to early interventions with young people showing prodromal signs of developing mental illness, and its utilization with children and adolescents. Applications with diverse diagnoses, including co-occurring substance abuse, and with special populations are then described. International and cross-cultural studies are presented, along with their research findings. We discuss questions of uniformities and variations across ethnic and national boundaries, and issues of cultural adaptation. Family education (FE) is a unique subcategory as an EBP. Family education is briefer and tailored to needs of families rather than patients. The only studies that satisfy most criteria of an EBP are of programs offered by advocacy groups and delivered by well-trained family members, not professionals. Some other professionally-led programs and models, including those lacking research data, are presented because of their widespread usage over the span of many years by thousands of families. We have discussed training and training issues, and the problems of implementing FPE in mental health services with a discussion of major barriers. An assessment of unresolved issues involves the content of FPE and whether it should be adapted to the family life cycle, different kinship roles, the trajectory of the illness, specific diagnoses, and the like. In a critical assessment of the current state of the mental health system, we look at future trends of families’ involvement in treatment, consumers’ roles in mental health systems, and the relations of the consumer and family movements. We see an important role for families in treatment planning, which evokes the thorny issue of confidentiality and some suggestions as to its resolution. At this juncture, FPE is still widely used in Europe, especially in the Optimal Treatment Project (OTP) program developed by Ian Falloon and his colleagues. William McFarlane’s multi-family model is being applied in numerous sites in the United States and Europe both for long-term patients and as prodromal interventions. FPE is still alive and well in China. Research continues on this now well-validated model, and every article, book, and book chapter that deals with schizophrenia lists FPE as a major evidence-based treatment. The data are there. The struggle to translate research findings into standard practice goes on.
APPENDIX
RESOURCES FOR CAREGIVERS BOOKS AND WORKBOOKS Froggatt, D., Fadden G., Johnson D.L., Leggatt, M., and Shankar, R. (2007). Families As partners in care: a guidebook for implementing family work. Toronto: World Fellowship for Schizophrenia and Allied Disorders. Glynn, S. and Backer, T.E. (1997). Involving families in mental health services: Guidebook for families and consumers. Human Interaction Research Institute, Los Angeles. Gunderson, J.G. and Hoffman, P.D. (Eds.), Understanding and treating borderline personality disorder: a guide for professionals and families. American Psychiatric Publishing Inc., Washington. Hatfield, A.B. (1990). Family education in mental illness. Guilford, New York. Miklowitz, D.J. (2002). The bipolar disorder survival guide: what you and your family need to know. Guilford, New York. Morey, B. and Mueser, K.T. (2007). The family intervention guide to mental illness. New Harbinger, Oakland, CA. Mueser, K.T. and Gingerich, S.L. (2006). The complete family guide to schizophrenia: helping your loved one get the most out of life. Guilford, New York. Scheifler, P. (1998). Handling Anger, patient education workbook. Psychiatric Management Resources, San Diego, California. Scheifler, P. (1998). Medication Management, patient education workbook. Psychiatric Management Resources, San Diego, California. Scheifler, P. (1998). Problem Solving, patient education workbook. Psychiatric Management Resources, San Diego, California.
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Scheifler, P. (1997). Team solutions: helping yourself prevent relapse, patient education workbook. Eli Lilly and Company. Scheifler, P. and Mullaly, R. (1985). Medication Maze. Intuition Press. Torrey, E.F. (2001). Surviving schizophrenia: a manual for families, consumers, and providers. 4th edition. HarperCollins, New York. Weiden, P.J., Scheifler, P.L., et al. (2001). Treatment resources for understanding Schizophrenia. (TRUST) Pfizer. Weiden, P., Diamond, R., Scheifler, P. and Ross, R. (May 1999). Breakthroughs in Antipsychotic Medications: A Guide for Consumers, Families, and Clinicians. WW Norton & Co, New York. Wintersteen, R.T. (1987). Families educating families: a guide for family-run psychoeducatinal workshops. University of Kansas School of Social Welfare, Lawrence KS.
VIDEO Scheifler, P.L. (1987). When Mental Illness Strikes the Family: Developing Practical Communication Skills. Videotape, Alliance for the Mentally Ill of Huntsville, 701 Andrew Jackson Way, Huntsville, AL 35801, (205) 534–2628. Scheifler, P.L. (1997). Getting on the Road to Recovery. Videotape, Alliance for the Mentally Ill of Huntsville, 701 Andrew Jackson Way, Huntsville, AL 35801, (205) 534–2628.
FOR ADOLESCENTS Sherman, M.D. and Sherman, D.M. (2007). I'm Not Alone: A Teen's Guide to Living with a Parent Who Has a Mental Illness. (Focuses on living with a parent who has schizophrenia, bipolar disorder, or major depression.) Available only through www.seedsofhopebooks.com or 1-800-901-3480.X118.
ORGANIZATIONAL RESOURCES FOR CAREGIVERS (INCLUDING THOSE IN COUNTRIES THAT PARTICIPATED IN “KEEPING CARE COMPLETE,” AN INTERNATIONAL SURVEY OF CAREGIVERS OF PERSONS WITH SERIOUS MENTAL ILLNESS). INTERNATIONAL LEVEL World Federation for Mental Health (WFMH): http://www.wfmh.org European Federation of Associations of Families of People with Mental Illness (EUFAMI): http://www.eufami.org Mental Health Europe (MHE): http://www.mhe-sme.org
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Australia ARAFMI National Council: http://www.arafmiaustralia.asn.au/ Mental Illness Fellowship of Australia: http://www.schizophrenia.org.au Mental Illness Fellowship of South Australia Inc.: http://mifsa.org Mental Illness Fellowship of North Queensland: http://www.mifnq.org.au Mental Illness Fellowship of Western Australia: http://www.mifwa.com Mental Illness Fellowship Victoria Inc: http://www.mifellowship.org/ The Schizophrenia Fellowship of NSW Inc.: http://www.sfnsw.org.au Schizophrenia Fellowship Queensland Inc: http://www.sfq.org.au/ Carers Australia: http://www.carersaustralia.com.au/ Germany BApK: http://www.bapk.de/ France Advocacy France: http://advocacyfrance.com Italy Associazione Aiutiamoli: http://www.aiutiamoli.it Fondazione Mario Lugli - DI.A.PSI.GRA.: http://www.fondazionelugli.it Associazione per la Riforma dell'Assistenza Psichiatrica (A.R.A.P.): http://www. arap.it/dati/roma.html UNASAM: http://www.unasam.it/index.php Caffe' Dell'Arte: http://www.caffedellarte.net Progetto Itaca: http://www.progettoitaca.org Spain La Confederación Española de Agrupaciones de Familiares y Personas con Enfermedad Mental (FEAFES): http://www.feafes.com/ Canada The Mood Disorders Society of Canada: http://www.mooddisorderscanada.ca/ The Schizophrenia Society of Canda: http://www.schizophrenia.ca/ The World Fellowship for Schizophrenia and Allied Disorders: http://www.worldschizophrenia.org/ The Centre for Addiction and Mental Health: http://www.camh.net/ United States National Alliance on Mental Illness Family-to-Family Program: http://www. nami.org
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Mental Health America (formerly National Mental Health Association) http:// www.mentalhealthamerica.net Families for Depression Awareness (FDA) http://www.familyaware.org American Health Care Association: http://www.acha.org National Alliance for Caregiving: http://www.caregiving.org Family Caregiver Alliance Web site: http://www.caregiver.org National Family Caregivers Association: http://www.nfcacares.org/ Well Spouse Association: http://www.wellspouse.org Depressive and Bipolar Support Alliance (DBSA) http://www.DBSAlliance.org Source:World Federation for Mental Health.www.wfmh.org retrieved 8-20-07.
RESOURCES FOR EDUCATORS Barrowclough, C. and Tarrier, N. (1992). Families of schizophrenic patients: Cognitive behavioural Intervention. Chapman & Hall, London. Corcoran, J. (2003). Clinical application of evidence-based family interventions. Oxford University Press, New York. Department of Health & Human Services, Substance Abuse and Mental Health Services Administration, Center for Mental Health Services (2003). Family psychoeducation implementation toolkit. Author.Rockville, MD. Diamond, R. and Scheifler, P. (2007). Treatment Collaboration, In Evidence-based mental health practice: A textbook (WW Norton Drake, R.E., Merrens, M.R, and Lynde, D.W., 2005). Norton, New York. Froggatt, D., Fadden, G., Johnson, D.L., Leggatt, M., and Shankar, R. (2007). Families As partners in care: A guidebook for implementing family work. World Fellowship for Schizophrenia and Allied Disorders, Toronto. Glynn, S.M., Liberman, R.P., and Backer, T.E. (1997). Involving families in mental health services: Competencies for mental health workers. Human Interaction Research Institute, Northridge, CA. Gunderson, J.G. and Hoffman, P.D. (Eds.) (2005). Understanding and treating borderline personality disorder: A guide for professionals and families. American Psychiatric Publishing Inc., Washington. Hatfield, A.B. (1990). Family education in mental illness. Guilford, New York. Hatfield, A. and Lefley, H.P. (Eds.) (1987). Families of the mentally ill: Coping and adaptation. Guilford, New York. Hatfield, A.B. and Lefley, H.P. (1993). Surviving mental illness: Stress, coping and adaptation. Guilford, New York. Kawanishi, Y. (2006). Families coping with mental illness: Stories from the U.S. and Japan. Routledge, New York. Hinden, B., Biebel, K., Nicholson, J., Henry, A., and Stier, L. (2002). Steps toward evidence-based practices for parents with mental illness and their families. Unpublished
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paper prepared for the Center for Mental Health Services, SAMHSA. Center for Mental Health Services Research, Department of Psychiatry, University of Massachusetts Medical School, Amherst, MA. Keitner, G.I. (1990). Depression and families: Impact and treatment. American Psychiatric Press, Washington DC. Kuipers, L., Leff, J., and Lam, D. (2002). Family work for schizophrenia: A practical guide, 2nd edition. Gaskell, London. Leff, Julian. (2005). Advanced Family Work for Schizophrenia: An Evidence-Based Approach. Gaskell, London. Lefley, H.P. (1996). Family caregiving in mental illness. Thousand Oaks, Sage, California. Lefley, H.P. and Johnson, D.L. (Eds.) (2002). Family interventions in mental illness: International perspectives. Praeger, Westport CT. Lefley, H.P. and Wasow, M. (Eds.) (1994). Helping families cope with serious mental illness. Harwood Academic, Newark, NJ. Marsh, D.T. (1992). Families and mental illness: New directions in professional practice. Praeger, New York. Marsh, D.T. (1998). Serious mental illness and the family: The practitioner’s guide. Wiley, New York. Marsh, D.T. (2001). A family-focused approach to serious mental illness: Empiricallysupported interventions. Professional Resource Press, Sarasota, FL. Miklowitz, D.J. and Goldstein, M.J. (1997). Bipolar disorder: A family-focused treatment approach. Guilford, New York. Mueser, K.T. and Glynn, S.M. (1999). Behavioral family therapy for psychiatric disorders, 2nd edition. New Harbinger, California. Sartorius, N., Leff, J., Lopez-Ibor, J.J., Maj, M., and Okasha, A. (2005). Families and mental disorders: From burden to empowerment. Wiley, Chichester, UK. Schaub, A. (Ed.) (2002). New family interventions and associated research in psychiatric disorders. Springer-Verlag, New York. Smith, G., Gregory, K., and Higgs, A. (2007). An integrated approach to family work for psychosis: A manual for family workers. Jessica Kingsely, London. Thorsen, G-R.B., Gronnestad, T., and Oxnevad, A.L. (2006). Family and multi-family work with psychosis. Routledge, New York.
CONTACTS FOR FAMILY EDUCATION COURSES AND MANUALS (SEE CITATIONS BELOW FOR RESEARCH ARTICLES ON SPECIFIC PROGRAMS IN REFERENCES LIST) Training, Education, & Consultation (TEC) Family Center, Philadelphia, PA. Mannion, E. (2000). Training manual for the implementation of family education in the adult mental health system of Berks County, Pennsylvania. Philadelphia: University
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of Pennsylvania, Center for Mental Health Policy and Services Research. (see Mannion and Solomon in References). Journey of Hope (www.namilouisiana.org) (see Pickett-Schenk in References). Family-to-Family www.NAMI.org (see Burland and Dixon in References). Pacific Clinics Training Institute Christopher S. Amenson, Ph.D. Faculty Chair, Pacific Clinics Institute (http://www.pacificclinics.org/traininginstitute.html) (see Amenson in References). Amenson, C.S. (1998). Family skills for relapse prevention. Pacific Clinics Institute, Pasadena, CA. Pebbles in the Pond Larry S. Baker, M.Div. and Karen A. Landwehr. M.C., Directions in Education, Training & Consultation, P.O. Box 2478, Gig Harbor, WA98335 (email:
[email protected]) Baker, L.D. and Landwehr, K.A. (2007). Pebbles in the Pond: Achieving resilience in mental health. Directions in Education, Training, & Consultation, Gig Harbor, WA. Partnerships for Recovery Patricia L. Scheifler MSW, PIP (email: plscheifler@ recovery.bz; Web site: www.recovery.bz). Three R’s Rehabilitation Program (multidisplinary training for mental health professionals) Dr. Mary D. Moller DNP, ARNP. (www.psychiatricwellness. com; e-mail:
[email protected] or
[email protected]) (see Moller in References). Bryce Hospital, Alabama Program Cynthia Bisbee, Ph.D.Email:
[email protected] Bisbee, C. (1991, 1995). Educating Patients and Families about Mental Illness: A Practical Guide. 484 Farmington Lane, Pike Road, AL 36064. Program for Parenting Well, University of Massachusetts Medical School (www.parentingwell.org) (see Hinden et al. in References).
ONLINE LEARNING COURSES Scheifler, P.L. (2004). Effective Educational Strategies, Essential Learning, www. essentiallearning.com. This course helps mental health service providers enhance their skills for conducting psychoeducation classes. Scheifler, P.L. (2003). Effective Educational Strategies. University of Medicine and Dentistry at New Jersey and Eli Lilly and Company, This video teaches mental health service providers a set of skills for conducting psychoeducation classes.
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SAMPLE FORM FOR RELEASE OF INFORMATION TO FAMILIES CONSENT TO RELEASE CONFIDENTIAL INFORMATION TO FAMILY MEMBERS n ame: ___________________ d o b : ___________________ s s # : ____________________ I hereby request and authorize (s pe ci fy pr o v i d e r ) ______________________________ to release information regarding me to the individual(s) listed below. I understand that the purpose of this release is to improve communication between the above-named agency and the individual(s) listed below and to assist in my treatment. Treatment began at this agency on (specif y date )________________________. *
*
*
*
*
I hereby request and authorize you to release the information indicated below to the following individual(s) (spe ci fy nam e / r e l at i o ns hi p): ________________________ ____________________________________________________________________________ You have my permission to release the following information: ___ Name of Therapist
___ Psychological Evaluation
___ Name of Case Manager
___ Scheduled Appointments
___ Treatment Programs(s) ___ Medication ___ Treatment Plan
___ Admission to/Discharge from Any Facility
___ Treatment Summary
___ Discharge Plans
___ Progress Notes ___ Other (SPECIFY): ________________________________________________________ I understand that this gives my consent for the release of information to the individual(s) listed above. I also understand that this allows the above-mentioned individual(s) to provide information to my therapist or case manager. I may revoke this release at any time except to the extent that the person who is to make the disclosure has already acted upon it. Except as noted above, this release will expire on (s pe ci fy d a t e )____________ or under the following circumstances: ______________________/_____________ wi t n es s #1
da te
______________________/_____________ wi t n es s #2
da te
_______________________/_____________ pa tient
_______________________/_____________ pa rent/l egal gu ardi an dat e
(Second witness needed if patient is unable to give verbal consent.) r e p r in t e d f r o m m a r s h & l efl ey , 20 0 3 .
dat e
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RE F E RE N C E S
Aarons, G.A. & Sawitzky, A.C. (2006). Organizational culture and climate and mental health attitudes toward evidence-based practice. Psychological Services, 3, 61–72. Abramowitz, I.A. & Coursey, R.D. (1989). Impact of an educational support group on family participants who take care of their schizophrenic relatives. Journal of Consulting and Clinical Psychology, 57, 232–236. Agius, M., Shah, S., Ramkisson, R., Murphy, S., & Zaman, R. (2007). Three year outcomes of an early intervention for psychosis service as compared with treatment as usual for first psychotic episodes in a standard community mental health team final results. Psychiatria Danubina, 19(3), 130–138. Amador, X. (2000). I am not sick, I don’t need help! Peconic NY: Vida Press. Amenson, C.S. (1998). Family skills for relapse prevention. Pasadena, CA: Pacific Clinics Institute. Amenson, C.S. & Liberman, R.P. (2001). Dissemination of family psychoeducation: the importance of consensus building. Psychiatric Services, 52, 589–592. American Psychiatric Association. (1994). Diagnostic and statistical manual of mental disorders (DSM-IV), (4th ed.). Washington, DC: Author. Anderson, C.M., Reiss, D.J., & Hogarty, G.E. (1986). Schizophrenia and the family: A practitioner’s guide to psychoeducation and management. New York: Guilford. Bae, S-W. & Kung, W.W-M. (2000). Family intervention for Asian-Americans with a schizophrenic patient in the family. American Journal of Orthopsychiatry, 70, 532–541. Barham, P. & Hayward, R. (1998). In sickness and in health: Dilemmas of the person with severe mental illness. Psychiatry, 61, 163–170. Baronet, A.M. (1999). Factors associated with caregiver burden in mental illness: A critical review of the research literature. Clinical Psychology Review, 19, 819–841. Barrowclough, C. (2005). Families of people with schizophrenia. In N. Sartorius, J., Leff, J.J. Lopez-Ibor, M. Maj, & A. Okasha, A. (Eds.), Families and mental disorders: From burden to empowerment. (pp. 1–24). Chichester,UK: Wiley. Barrowclough, C., Haddock, G., Tarrier, N., Lewis, S.W., Moring, J., O’Brien, R., et al. (2001). Randomized-controlled trial of motivational interviewing, cognitive behavior therapy, and family
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N A ME I N D E X
A
Benedict, P., 24 Bennett, C., 100, 101 Berglund, N., 89 Berkowitz, C.B., 70, 71 Berkowitz, R., 35, 36 Bernheim, K. F., xii, 10 Bernstein, E., 138 Biebel, K., 76, 77, 145 Biegel, D.E., xiii, 22, 113 Birchwood, M., xi, 36, 108 Bisbee, C., xii, 5, 98, 103, 104, 113 Blitz, C.L., 21 Bond, G.R., 49, 68 Boyd, J.L., 28, 35, 37, 40, 44, 81, 82, 107, 110 Bradley, G.M., 82 Brekke, J.S., 3, 5 Brent, B.K., 113 Bressi, C., 17, 124 Buchkremer, G., 86 Budd, R.J., 122 Buksti, A.S., 85, 122 Burland, J., xii, 98, 99 Buteau, E., 73
Abdul-Adil, J., 65 Abramowitz, I.A., 112 Adams, C., 30 Agius, M., 61 Alford, J., 1 Amador, X., 19 Amenson, C.S., xii, 101, 102, 108, 109, 110, 114 American Psychiatric Association, 2 Anderson, C.M., xi, 28, 35, 38, 39, 46, 70 Aschbrenner, K.A., 24 Asti, N., 90 Atkinson, J., 109
B Backer, T.E., 103, 109, 110 Bae, S-W., 81 Baker, L.D., 103 Baker, L.S., 102, 103 Barham, P., 94 Barker, P., 2, 68 Baronet, A.M., 22 Barrowclough, C., xi, 25, 26, 35, 36, 37, 38, 53, 54, 69, 78, 113 Bauml, J., xi, 6, 31, 53, 112 Beardslee, W.R., 76 Bebbington, P., xi, 30, 36, 75 Bebbington, P.E., 22 Becker, S., 75 Beels, C.C., 17, 18 Bellack, A.S., 45
C Canive, J.M., xi, 86, 122 Caqueo-Urizar, A., 84 Carra, G., 87, 88, 124 Cazzulo, C.L., 87, 88, 124 Center for Mental Health Services, 131 Cetinkaya Duman, Z., 90 Chambless, D.L., 1
167
168 Chambless, S., 125 Chan, S.W.C., 96, 123, 126 Chen, F-P., 24 Chien, W.T., 94, 96, 123, 126 Chuang, Y-L., 29 Cimett, E., 48, 113 Cirillo, S., 17 Clark, R., 68 Clark, R.E., 3 Clerici, M., 87, 88, 124 Cohen, A.N., 30, 129, 134 Cohen, J., 2 Cohler, B.J., 123 Conn, V., xii Cook, J.A., xii, 100, 123 Corrigan, P., 20 Corrigan, P.W., 30, 96, 97 Cortez, R., 83 Coursey, R.D., xii, 1, 112 Coverdale, J.H., 30, 31, 32 Crilly, J., 47 Cuijpers, P., 84, 122, 126, 127
D Daly, R., 131, 132, 133 Davis, R., 73, 74 Delahanty, J., 99 Department of Health & Human Services. Substance Abuse and Mental Health Services Administration., viii DeRisi, W.J., 5 Dixon, L., xi, xii, 5, 11, 30, 31, 32, 40, 48, 99, 106, 112, 113, 114, 115, 116, 126 Dixon, L.B., 134 Doherty, W.J., 10 Domenici, P., 20 Draine, J., xii, 13, 96, 101 Drake, R.E., 3, 49, 68, 69, 124, 138 Duarte, E., 25, 82, 83 Dunne, E., 106, 112, 114, 115, 116 Dushay, R., 47 Dyck, D.G., 47, 75
E Eack, S.M., 52 Eberlein-Fries, x, 35 Edman, A., 89 Elliott, L., 109 Endicott, J., 2 Epstein, J., 2, 68 Evert, H., 3
F Fadden, G., xi, 27, 30, 35, 36, 75, 108, 130
NAME INDEX Falloon, I.R.H., xi, 25, 28, 30, 31, 32, 35, 37, 40, 44, 45, 48, 49, 50, 54, 58, 70, 81, 82, 107, 110, 123, 150 Farber, L., 2 Farberow, N.L., 17 Farmer, J., 136 Feldmann, R., 86 Fiorillo, A., 30, 31, 54, 55, 57, 89, 107 Fitzgerald, P., 60, 61 Fitzpatrick, E., 53 Fjell, A., 61 Fleiss, J.L., 2 Flory, J.D., 45 Foster, D.A., 126 Fox, L., 68, 69, 78, 120 Frese F.J., xiii, 132 Frese, P., xiii Friis, S., 61 Fristad, M.A., xi, 27, 61, 62, 63, 64, 66 Frobose, T., 6 Froggatt, D., 110, 130 Fromm-Reichmann, F., 15 Frongia, P., 17 Fruzzetti, A.E., 71, 73 Fujita, H., 91 Fukuzawa, K., 91
G Gabbard, Glen, O., 16 Gall, S.H., 109 Ganguli, R., 52 Garcia, J.I.R., 83 Garety, P., 30 Gavazzi, S.M., 27, 63 Geddes, J., 30 Geist, R., 73, 74 George, E.L., 52 Gingerich, S., 132 Gittelman, M., 92 Giulianio, A.J., 113 Glanville, D.N., 126 Glei, D.A., 29 Glynn, S.M., xi, 30, 40, 44, 45, 96, 103, 109, 110, 132, 134 Goldman, N., 29 Goldstein, M.J., xi, 35, 40, 51, 56, 76, 81, 96 Gonzalez, J., 65 Gorham, D., 82 Goto, M., 74, 90 Grawe, R.R., 125 Greenberg, J.S., 24, 78 Greenley, J.R., 24 Gregory, K., 145
169
NAME INDEX Griffin, G., 133 Gronnestadm T., 145 Guirguis, W.R., 18 Gunderson, J.G., 70, 71, 141 Gutierrez-Maldonado, J., 84 Guy, S.M., 109
H Haas, G.L., 45 Haddock, G., 37, 69, 78 Harbin, H.T., 17 Harvey, C.A., 3 Harvey, E.J., 24 Hatfield, A., xii, 28 Hatfield, A.B., 5, 28, 77, 78, 98, 124 Hayward, R., 94 Hazel, N.A., 47 He, Y., 92 Heinmaa, M., 73, 74 Held, T., 30, 31, 32 Henry, A., 145 Hepworth, J., 10 Herman, H., 24 Hernandez, M.G., 83 Higgs, A., 145 Hill, S., 123 Hinden, B., 145 Hoffman, M., 99 Hoffman, P.D., 71, 73, 125, 141 Hogarty, G.E., xi, 28, 29, 35, 38, 39, 46, 52, 70 Hollon, S.D., 1 Hooley, J.M., 25, 125 Hopper, K., xi, 76 Horen, B.T., 124, 138 Hornby, H., 48, 113 Hornung, W.P., 86 Howells, J.G., 18 Hughes, I.C.T., 122
I Inoue, S., 91 Invernizzi, G., 17 Isett, K.R., 117
J Jablensky, A., 94 Jenkins, J., xi, 83 Johannesen, J.O., 61 Johansen, R., 109 Johnson, D.L., xii, 12, 16, 23, 80, 85, 127, 130 Jordan, C., 80
K Karno, M., 83
Katz-Leavy, J., 76 Katzman, D.K., 73, 74 Kaufmann, C.L., 131 Kawashima, Y., 74 Kazarian, S.S., 127 Kazdin, A.E., 1 Keith, S.J., 44 Keitner, G.I., 52 Kennedy, P., 20 Kennedy, T., 20 Kessler, R.C., 2 Kim, L., 65 King, L., 5 Kinsella, A., 123 Kissling, W., 85, 86, 112 Klingberg, S., 86 Knudsen, K.J., 24 Koeter, M.W.J., 22 Kojima, T., 91 Koneru, V., 25, 82, 83 Kopekin, H.S., 35, 96 Kopelowicz, A., 83, 86 Kornblith, S.J., 39 Kottgen, C., 31 Kraemer, S., 6 Krajewski, T., 17 Kress, K., 132 Kronmuller, K-T., 123 Kuipers, E., 11, 22, 30 Kuipers, L., xi, 26, 28, 35, 36, 75 Kulkarni, J., 60, 61 Kung, W.W-M., 81 Kuscu, M.K., 90 Kymalainen, J.A., 26
L Laidlaw, T.M., 30, 31, 32 Lam, D., xi, 26, 28, 36 Lamb, H.R., 3 Landwehr, K.A., 103 Laris, A., 100 Larsen, T.K., 61 Larson, J.E., 20 Leff, J., xi, 3, 13, 17, 25, 26, 28, 35, 36, 37, 70, 110, 145 Lefley, H.P., 2, 5, 8, 10, 12, 18, 25, 27, 28, 71, 78, 93, 109, 123, 124, 127, 129, 131, 135, 136, 137, 145 Leggatt, M., 130 Lehman, A., xi Lehman, A.E., 31 Lehman, A.F., 3, 6, 54, 58 Leon, A.C., 2 Lewellen, A., 80
170 Li, J., 92 Li, S., 91, 92 Liberman, D.B., 43 Liberman, R.P., xi, 4, 5, 40, 43, 45, 83, 102, 103, 108, 109, 110, 114 Liem, J.H., 17 Lincoln, T.M., 3, 125 Linehan, M., 29, 72 Link, B., 47 Linszen, D., 30, 31, 86, 122 Lippincott, R.C., 100, 101 Lobban, F., 113 Lopez, S.R., xi, 83, 86 Lopez-Ibor, J.J., 145 Lucksted, A., 30, 32, 99 Lueboonthavatchai, P., 90 Lukens, E., 18, 30, 32, 46
M Mackinaw-Koons, B., 27, 63 Magana, S.M., 83 Magliano, L., xi, 30, 31, 51, 54, 55, 56, 57, 89, 107 Maj, M., 145 Manenti, S., 17 Mannion, E., xii, 10, 13, 75, 76, 96, 101, 120, 136 Mannion, N., 123 Maranhao, T., 17 Marchal, J., 47 Mari, J., 30, 32 Marsh, D.T., xii, 8, 10, 13, 18, 136 Marshall, T., 3, 117, 118, 119, 136 Masanet, M., xi, 26, 54, 57 Mathiesen, S.G., 3, 5 Mazza, M., 123 McCrary, K., 103 McDaniel, S.H., 10 McFarlane, W.R., viii, xi, 10, 11, 12, 13, 17, 18, 28, 30, 32, 36, 40, 46, 47, 48, 54, 56, 58, 59, 60, 61, 66, 70, 82, 94, 106, 110, 113, 114, 115, 117, 119, 124, 138, 140 McGill, C.W., 28, 35, 37, 40, 44, 81, 82, 107, 110 McGlashan, T.H., xi, 16, 21, 58, 59 McGorry, P., xi, 59 McHugo, G.J., 68, 119 McKay, M., 65 McNary, S., 48, 113, 115, 138 McWilliams, S., 123 Meisel, M., 10, xii, 13, 96, 101 Mercer-McFadden, C., 68 Merinder, L.B., 84 Miklowitz, D.J., xi, 40, 51, 52, 56, 61, 62, 76, 81 Milligan, S., 22 Mino, Y., 91
NAME INDEX Mintz, 83 Moller, M.D., xii, 102 Moltz, D.A., 52 Montero. I., xi, 87 Montomoli, C., 87, 88, 124 Morey, B., 141 Morken, G., 125 Motlova, L., 88 Mueser, K.T., xi, 13, 40, 44, 45, 46, 49, 68, 69, 75, 76, 78, 96, 120, 132, 141 Murphy, M.F., 102 Murphy, S., 61 Murray-Swank, A.B., 30, 114 Murtha,C., 2, 68
N Neiditch, E.R., 73 Nestoriuc, Y., 3, 125 New Freedom Commission on Mental Health, 108, 131 Newmark, M., 52 Nicholson, J.M., 76 Niv, N., 30, 134 Noordsy, D.K., 69 Norell, D.M., 75 North, C.S., 126
O O’Hanlon, B., 162 O’Callaghan, E., 123 Ogilvie, L.P., 109 Okasha, A., 145 Olfson, M., 2 Oliphant, E., 3 Orbach, G., 30 Osher, F.C., 124, 138 Ostman, M., 23 Overall, J., 82 Oxnevad, A.L., 145
P Parabiaghi, A., 23 Parker, G., 18 Pavuluri M.N., 62 Petrila, J.P., 136 Pharoah, F., 30, 32 Phillips, M.R., xi, 92 Pickett, S., 123 Pickett-Schenk, S., xii, 100, 101 Pilling, S., 30 Pitschel-Walz, G., xi, 6, 11, 31, 85, 86, 112 Pollice, R., 123 Pollio, D.E., 126
171
NAME INDEX Porceddu, K., 53 Porcellana, M., 17 Portera, L., 2 Putnam, P., 22
Q Quintana, E., 65
R Ramkisson, R., 61 Ran, M., 91, 92 Randolph, J., xi, 40, 45 Ranz, J.M., 124, 138 Rapp, Charles, xii Rathbone, J., 30, 32 Reiss, D.J., 28, 35, 38, 39, 46 Reker, T., 86 Rentrop, M., 6 Reynolds, D., 17 Richard, L., 52 Richards, J.A., 52 Rismiller, D.J., 131 Rismiller, J.H., 131 Rodgers, M.L., 75 Roncone, R., xi, 30, 31, 32, 51, 123, 138 Rothman, D.J., 3 Ruffolo, M.C., 65 Rummel-Kluge, x., 85, 86, 112
S Sadoff, R.L., 136 Safarjan, B., 1 Sanford, M., 64, 65 Sartorius, N., 145 Schaub, A., 145 Scheifler, P.L., 104 Schene, A.H., 22, 24 Schmidt, C., 58, 59 Schooler, N.R., xi, 44, 45, 52, 56, 122 Schuman, M., 17 Sellwood, W., 37, 38, 54 Selvini Palazzoli, M., 8, 17 Selvini, M., 17 Selye, H., 29, 32 Sengupta, A., 46 Severe, J.B., 44 Shah, S., 61 Shankar, R., 130 Shaw, D., 17 Sheehan, D.V., 2 Sherman, M.D., 75 Shi, J., 21 Shimodera, S., 91
Short, R.A., 75 Simoneau, T.L., 52 Smith, G., 145 Smith, M.J., 78 Smith, V.G., 83 Solomon, P., xii, 3, 10, 11, 13, 75, 76, 96, 101, 120, 127, 136 Someya, T., 74 Song, L-Y., 113 Sorrentino, A.M., 17 Spaulding, W., 37 Spitzer, R.L., 2 Spitzer, S.P., 17 Stam, H., 126 Stanley J., 132 Steber, S-A., 120 Steigman, P.J., 100, 101 Steketee, G., 125 Stephens, D., 73, 74 Stephens, S., 20 Stewart, B., 99 Stier, L., 145 Strachan, A., 36 Strode, A.D., 75 Suddath, R.L., 52 Sullivan, H.S., 16 Szmukler, G.I., 23, 24, 127
T Takahashi, A., 91 Takano, A., 91 Tarrier, N., xi, 35, 36, 37, 38, 53, 54 Tasaki, S.I., 74 Telles, C., 30, 31, 82, 83, 122 Teplin, L.A., 21 Terkelsen, K.G., 3 Thavichachart, N., 90 Thomas, C.W., 109 Thompson, D.R., 96, 123, 126 Thorsen, G.R.B., 61, 145 Tomaras, V., 89 Torrey, W.C., 112 Townsend, W., 133
U Ucok, A., 90 Uehara, T., 74 Ussurio, D., 123
V Vahlne, J.O., 89 Van Noppen, B., 69, 70, 125 Van Wijngaarden, B., 22
172
NAME INDEX
Van Wijngaarden, S., 22 Vanderheyden, D.A., 127 Vandiver,V., 80 Vaughn, C., xi, 17, 25, 36 Vearnals, C.R., 26 Veltro, F., 54 Vogel-Scibilia, S., 132 Vorburger, M., 2, 68
Wolff, N., 21 Wong, K-F., 94 Wong, W., 30, 32 Wong, Z., 92 Woolsey, K., 77 Worakul, P., 90 World Federation for Mental Health, 19, 20 Wynne, L.C., 10
W
X
Walsh, F., 15 Wang, M., 92 Warner, R., 5 Wasow, M., xii, 145 Wasserman, S., 25, 82, 83 Weiden, P., 132 Weinstein, M., 29 Weisman de Mamani, A.G., 26, 81 Weisman, A.G., xi, 25, 82, 83 Widen, J.H., 125 Wilhelm, K., 3, 125 Williams, V.F., 76 Winefield, H.R., 24 Wintersteen, R.T., xii Wittkowski, A., 38, 54
Xiang. M., xi, 91, 92 Xiong, W., xi, 5, 93
Y Yamaguchi, H., 91 Yan. H., 92 Young, M.E., 61, 62, 63, 64, 66
Z Zaman, R., 61 Zarate, R., 83 Zhang, M., xi, 92, 93 Zhang, M.Y., 92 Zito, J.M., 124, 138
S U BJ E C T I N D E X Note: f = figure; t = table
A
Audiotapes, attitude change and, 108 Australia, research studies in, 60, 82, 130 Austria, psychiatric institutions in, 112
ACT (assertive community treatment), 46, 125 Adolescents, interventions for antipsychotic medication, 58–59 bipolar disorder, 66–67 family-focused treatment, 61–62 major depressive disorder, 64–65, 67 multi-family interventions, 65–67 prodromal cases, 140 Advocacy, 127, 131–132 Affective disorders, 51, 123 (see also Bipolar disorder) African-American families, 80–81 Alabama model, Bryce Hospital, 103–104 American Psychological Association, Division, 12, 1 Anosognosia, 19 Antipsychotic medication adherence/compliance, 41, 85–86, 90, 125 for adolescents, 58–59 dose reduction, 44–46, 56 for first-episode psychosis, 61 for prodromal signs, 58–59, 66 relapse/re-hospitalization and, 56 for schizophrenia, 41 ARIETE, Italy, 40 Arranged marriages, for mentally ill relatives, 92 Asian-American families, 80–81 Assertive community treatment (ACT), 46, 125 Attitude changes, from training programs, 108–109
B Behavioral family therapy (BFT) content, basic, 40t efficacy, 44–46 family burden and, 89 focus, 56 Meriden program, 81, 107–108, 110 research studies, 56, 130 single-family, 87 vs. case management, 82 Behavior-management model, 42t–43t BFT. See Behavioral family therapy Biological deficits, 33 Bipolar disorder in children/adolescents, 27, 61–64 expressed emotion and, 27, 125 family focused treatment, 51–52, 61–62 individual family psychoeducation for, 63–64 spousal programs, 76 type 1, 2 Borderline personality disorder (BPD) treatment model, 70 expressed emotion and, 125 family psychoeducation programs, 70–73 symptoms, 29 BPRS (Brief Psychiatric Rating Scale), 82 Brain and spinal cord injury, traumatic, 74–75
173
174 Brief family education programs. See Family education programs Brief Psychiatric Rating Scale (BPRS), 82 Bryce Hospital, Alabama model, 103–104 Building Family Skills Together, 130
C Camberwell Family Interview (CFI), 25 Canada, early interventions in, 64–65 Caregivers burden of (See Family burden) gratification for, 24–25 international study on, 19–20 older, programs for, 77–78 one-day psychoeducational program for, 91 preparation, need for, 4 Caregiving Inventory, 24 Carers Equal Opportunities Act of 2004, 130 Cascade model, Meriden as, 1017–109 CBCL (Child Behavior Checklist), 65–66 Center for Mental Health Services (CMHS), 2, 7 CFI (Camberwell Family Interview), 25 CFT (crisis family intervention), 46 Child Behavior Checklist (CBCL), 65–66 Children, interventions research studies for bipolar disorder, 27, 61–67 family-focused treatment, 61–62 mood disorders, general, 62–63 prodromal cases, 59–60, 140 severe emotional disturbance (SED), 65 Chile, research studies in, 84 China, family caregiving, 5 China, research studies in, xii, 91–95 Chronic mental illness. See Serious mental illness CIT-S (Culturally Informed Therapy for Schizophrenia), 81–82 Clinician-driven evidence-based practice, 131 Clinician-facilitated intervention (CFI), 76–77 CMHC (Community mental health centers), 120 CMHS (Center for Mental Health Services), 2 Cochrane Data Base of Systematic Reviews, 32–33 Cognitive-behavioral therapy, 35, 50, 132 family interventions, 53–54 needs-based, 37–38 Columbia Unversity Study, 46 Community mental health centers (CMHC), 120
SUBJECT INDEX Confidentiality issues, 120, 135–138 Consensus-building, 118 Consumer-driven recovery models, 131 Consumers, mental health, 131–134 Coping, 24, 48t Cost-benefit analysis, 46–47, 91 Criminal justice system, 19 Crisis family intervention (CFT), 46 Criticism, OCD and, 125 Cross-country differences, in family burden, 22 Culturally Informed Therapy for Schizophrenia (CIT-S), 81–82 Culture cross-cultural studies, 80–95, 140 expressed emotion and, 26 family burden differences and, 22 sensitivity toward, 94 Czech republic, research studies in, 88
D Danish National Multicenter Schizophrenia Project, 84–85 Dartmouth Medical School, 40 DBT (dialectical behavior therapy), 71–72 DBT-FST (Dialectical behavior therapy family skills training), 71 De-institutionalization, 4 Delusions, 87 Denmark, research studies in, 61, 66, 84–85, 122 Department of Veteran Affairs, Family Forum, 129 Developmental disorders, biological basis, 16 Dialectical behavior therapy (DBT), 71–72 Dialectical behavior therapy family skills training (DBT-FST), 71 Diathesis-stress model, 28, 41, 139 Dissemination approaches, 114–116 Double-bind interactions, 17–18 Drugs. See Antipsychotic medication Dual disorders (mental illness & substance abuse) family psychoeducation programs, 68–69 Duration of therapy, 54–57, 90–91, 128 Dysregulation, emotional, 29, 33, 139
E Early interventions, 58–67 for adolescents (See Adolescents, interventions for) for children (See Children, interventions for) for first-episode psychosis, 60–61 for prodrome of psychosis, 58–59, 66, 140
SUBJECT INDEX Eating disorders, 73–74 EBP (evidence-based practice), advocacy for, 132 EBPP (Evidence-Based Practices National Demonstration Project), 117 EBT. See Evidence-based treatment Education, expressed emotion and, 26 EE. See Expressed emotion Efficacy of family psychoeducation, 4 in clinical settings, 50–51 for schizophrenia, 84–85 in schizophrenia, 84–85, 106–107 short-term vs. long-term, 124–125 Elderly caregivers, programs for, 77–78 Ethnic minorities caregiving and, 5 psychoeducation for, 80–84, 94 European Commission Study, 89, 94–95, 106–107 Evidence-based practice (EBP) advocacy for, 132 definition of, 1, 6 family psychoeducation as, 5–7, 30–31 implementation, 112, 119–121 operational definition, 139 as “right-wing conspiracy,” 132 use of term, 7 vs. evidence-based treatment, 1 Evidence-Based Practices National Demonstration Project (EBPP), 117 Evidence-based treatment (EBT). See also specific types of evidence-based treatment definition of, 1, 6 operational definition, 139 vs. evidence-based practice, 1 Experience of Caregiving Inventory, 24 Expressed emotion (EE) caregiver levels, 90 cross-cultural differences in, 25–26 definition and measurement of, 25 high EE, 88–91 in prodromal patients, 59 reduction of levels, 87, 138 relapse and, 29, 39, 53 research, 25–27, 36, 139 symptomatic behavior and, 125, 128 in borderline personality disorder, 125 in clinical and residential staff 26 low EE, 53, 86, 122 in Hispanic Families, 83
F FACT (Family-Aided Assertive Community Treatment Outcome Trials), 46
175 Falloon model. See Optimal Treatment Project Family/families blaming, 21 burden of (See Family burden) categories of, 17 in China, social goals of, 92 of dually diagnosed patients, 68 extrusion from community programs, 19 involvement in therapy, 137–138 negative attitudes/beliefs about, as implementation barrier, 113 as objects of contempt by mental health professionals, 16–17 with schizophrenic member, 17 stressors (See Stressors) treatment roles for, 134–135 of veterans, 75 working with, competencies for clinical staff, 110–111 Family-Aided Assertive Community Treatment Outcome Trials (FACT), 46 Family burden as barrier to implementation, 113–114 international studies on, 89 male vs. female, 75 mental illness diagnoses and, 23 objective, 18–19, 27 reduction of, 75, 84, 122, 127 international studies, 93–94 in schizophrenia, 92 research on, 22–25, 27 stress-appraisal coping and, 23–24 stressors and, 18–20, 21, 27 subjective, 18, 19, 27 Family caregiving, scope of, 5 Family Connections program (FC), 72 Family consultation, 9t, 10, 13 Family-dynamic multi-family group (FDMFG), 46 Family education characteristics of, 9t definition of, 96 internal evaluation of, 97 manual for, 103–104 models, 96–105 (See also specific models) theoretical premises, 9t, 28 vs. family psychoeducation, 11–13, 104–105 Family-focused treatment (FFT) for bipolar disorder, 51–52 for children/adolescents, 61–62 description, 51 long-term effects, 52–54 for major affective disorders, 56–57
176 Family-focused treatment (FFT) (cont.) objectives, 51 research findings, 51–52 for spouses, 76 Family Intervention for Dual Disorders (FIDD), 68–69, 78 Family interventions. See also specific treatment models common theme, 13–14 for first-episode psychosis, 60–61 limitations of, 126 models (See also specific models) description of, 9–12, 9t merged, 12–14 in non-Anglo-Saxon cultural context, 87–88 in schizophrenia, 34 stages, for prodromal patients, 59–60, 66 variations, 12–13 Family involvement in treatment, 134–135 Family Options, 77 Family psychoeducation unresolved issues, 122–128 Family psychoeducation (FPE) characteristics of, 9t core elements, 11 definition of, 139 effects of, 32, 33–34 as evidence-based practice, 5–7, 30–31 family roles in treatment and, 134–135 historical background, 4–5, 139 illness-management techniques, 11 indications, 139 (See also under specific diagnoses; specific populations) with individual psychosocial treatment, vs. individual psychosocial treatment, 89–90 length of interventions, 54–55 literature overviews, 31–34 long-term effects, 52–54 multi-family model (See Multi-family group) needs-based cognitive-behavioral, 37–38 for schizophrenia (See Schizophrenia, family psychoeducation) theoretical premises, 28, 139 evidence-based practice, 30–31 literature overviews, 31–34 psychobiological response to stress, 29–30 toolkit, viii unresolved issues, 122–128 validation studies, 35 vs. family education, 11, 13, 126–127 vs. patient psychoeducation, 132 vs. standard treatment, 4, 32, 54
SUBJECT INDEX Family psychoeducation and treatment program, 38–39 Family psychosocial interventions, 6 Family roles in treatment, 134–135 Family Skills for Relapse Prevention, 102 Family support and advocacy group, 9t, 12 Family therapy characteristics, 9t modalities, 8–10 replacement paradigm, 17 for schizophrenia, 17 systemic, 17 theoretical premises, 8, 9t, 13 traditional, 138 vs. multi-family group psychoeducation, for eating disorders, 73–74 Family-to-Family Education program (FFEP), 98–99, 105, 126 FC (Family Connections program), 72 FDMFG (Family-dynamic multi-family group), 46 Fear of diagnosis, 59 FFEP (Family-to-Family Education program), 98–99, 105, 126 FFT. See Family-focused treatment FIDD (Family Intervention for Dual Disorders), 68–69, 78 Fidelity, 119 Fluphenazine, 44–45 FPE. See Family psychoeducation Fruzzetti/University of Nevada program, for BPD, 71–72 Future Planning for Relatives with Mental Illness program, 77–78 Future treatment directions, 129–140 confidentiality and, 135–137 consumers in mental health workforce, 133–134 divergent interest groups and, 131–133 family participation in, 134–135
G GAAF (Global Assessment of Functioning), 2 Gender differences, in knowledge acquisition, 123 Germany, research studies in, xii, 85, 89, 112, 123 Global Assessment of Functioning (GAF), 2 Gratification of caregiving, 24–25 Greece, research studies in, 89–90 Gunderson/McLean program, for borderline personality disorder, 70–71
177
SUBJECT INDEX H Health professionals, attitudinal barriers for, 108 Hispanic families, 81–83, 94 Hoffman/New York Hospital Program, for borderline personality disorder, 71 HOMES (Home-Oriented Management of Early Psychosis), 60–61 Homework, 45t Hong Kong, 96 Hospital access, 19 Hospitalization. See Relapse/re-hospitalization Hostile criticism. See Expressed emotion Hyperarousal, 29, 33, 139
I Iatrogenic stressors, 21, 27 ICM (intensive case management), 65–66 IEQ (Involuntary Evaluation Questionnaire), 22, 23 IFP (individual family psychoeducation), for childhood bipolar disorder, 63–64 Illinois Family Psychoeducation Dissemination Project, 115–116 Illness-management techniques, in family psychoeducation, 11 Immigrants, psychoeducation programs for, 82 Implementation of FPE in services, 112–121 application issues, 117–118 barriers, 113–114 Building Family Skills Together, 130 fidelity issues, 117–118 international, 112 major issues, 118–119 research findings, 114–116 suggested solutions, 119–121 training and, 108 Individual family psychoeducation (IFP), for childhood bipolar disorder, 63–64, 67 Institute of Psychiatry, London. See London Institute of Psychiatry Insurance, 119 Integrated Mental Health Care Program, 130–131 Intensive case management (ICM), 65–66 Intensive Family Support Services, New Jersey, 10 Interest groups, divergent, 131–133 International collaborative group. See Optimal Treatment Project International studies 80–95. See also under specific countries
Involuntary Evaluation Questionnaire (IEQ), 22, 23 Involuntary treatment and families, 19 Italy, family caregiving, 5 Italy, research studies in, xii, 87–89, 138 (see also Optimal Treatment Project)
J Japan, research studies in, 74, 90–91 Journey of Hope (JOH), 97–101, 105, 126
K Keeping Care Complete, 19–20
L Latin America, research studies in, 84 Latino families, skills training vs. customary care, 83–84 Length/duration of family intervention, 54–57, 90–91, 128 Literature reviews, methodology, 31–34 London Institute of Psychiatry, 26, 36, 37, 55
M Maine Family Support Action Initiatives (MFSAI), 115–116 Maine Medical Center (see also McFarlane, William) 46 Major affective disorders bipolar disorder (See Bipolar disorder) family interventions (See Family Focused Treatment) incidence/prevalence, 2 symptoms, 29 McLean Hospital program, for borderline personality disorder, 70–71 Medicaid, 119 Medication. See Antipsychotic medication Mental Health America (MHA), 5, 7, 12, 20 Mental health consumer organizations, 131 Mental health consumers- persons with SMI-SED adolescents (See Adolescents) children (See Children) families of (See Family/families) incarceration of, 21 negative symptoms, 23 number living with family, 3 rejection of medication, 23 with substance abuse, family psychoeducation programs, 68–69
178 Mental health professionals attitudinal changes from training, 108–109 competencies for family interventions, 109–110 hostility/dislike of families, 16–18 theoretical assumptions of, 16–18 Mental health services system (see also Implementation of FPE) parity with medical health care, 20 underfunding of, 20–21 Meriden program, West Midlands Family Program, UK, 81, 107–108, 110 Mexican-American families, psychoeducation for, 80–83 MFBT (multi-family behavioral family treatment), for OCD, 69–70 MFG (multi-family group). See Multi-family group MFSAI (Maine Family Support Action Initiatives), 115–116 MHA (Mental Health America), 12, 20 Milan school, 8, 17 Modeling, by therapist, 45t Model research programs, 35–57. See also specific model research programs behavioral family therapy, 40, 43 in California, 35 cognitive-behavioral, 35 family psychoeducation and treatment program, 38–39 in London, 35 for major affective disorders, 51–57 in Pittsburgh, 35 research design and findings, 39, 43–44 for schizophrenia behavioral family therapy, 40, 42t–43t, 43–46, 45t family psychoeducation (See Schizophrenia, family psychoeducation) Mood disorders. See Major affective disorders Mothering practices, childhood psychiatric disorders and, 15–16 Multi-family behavioral family treatment (MFBT), for OCD, 69–70 Multi-family group (MFG) advantages of, 48–49, 48t, 49f for borderline personality disorder, 71 for children/adolescents, 62–67 comparison with other therapies, 46–48, 56, 114 cost-effectiveness, 123 for dual diagnosis, 69
SUBJECT INDEX for first-episode psychosis, 61, 66 implementation, 36, 116 for prodromal patients, 59, 66 for spinal cord injury, 74–75 for traumatic brain injury, 74–75 Munich Psychosis Information Project, 53, 57, 87
N NAMI. See National Alliance on Mental Illness NASW (National Association of Social Workers), 135–136 National Alliance on Mental Illness (NAMI) Curriculum and Training Committee, 98 Education, Training, & Peer Support Center, xii Family-to-Family Education program, 98–99, 105, 126 Future Planning for Relatives with Mental Illness program, 77–78 historical perspective, 4–5 Journey of Hope program, 97–101, 105, 126 parity of mental health care with medical health care, 20 National Association of Social Workers (NASW), 135–136 National Comorbidity Survey, 2 National Council for Community Behavioral Healthcare, 133–134 National Forum on Educating Mental Health Professionals to Work with Families of the Long-Term Mentally Ill (NAMINIMH) 137 National Instutute of Mental Health (NIMH), 44, 137 NIMH Multi-site study, 56 National Mental Health Association (see Mental Health America) Netherlands, research studies in, 86, 122, 126 New Freedom Commission on Mental Health, 131, 133 New Hampshire FPE implementation in, 117–118 New York State Family Psychoeducation Study, 45, 56 New York State Family Support and Demonstration Project, 114–115 New York State Psychiatric Institute, 46 New York Training and Dissemination Program, 106 NIMH study, multi-site, 56 Non-billable services, 120 Non-familial resident settings, 124
179
SUBJECT INDEX Norway, research studies in, 61, 66
O Obsessive-compulsive disorder (OCD), 69–70, 125 Ohio State University Psychoeducation Program, for Childhood Mood Disorders, 62–63 Ohio Training and Dissemination Program, 106 Older caregivers, 77 Omega-3 fatty acids, 59 Optimal Treatment Project (OTP), xi, 40, 48–51, 138 (see also, Falloon, Ian) efficacy, 56, 138 implementation, 140 Questionnaire of Family Functioning, 122–123 research findings, 50–51 steps in, 130–131 Outcome long-term effects, 52–54 measures (See Relapse/re-hospitalization) therapist competency and, 108 Over-involvement. See Expressed emotion
Prevention and Recovery of First-Episode Psychosis (PREP), 60 Prodrome of psychosis, 58–59, 66, 140 Prognosis, for major psychiatric disorders, 3 “Pseudo-self” vs. “solid-self,” 17 PSFT (psychoeducational single-family treatment), 46 Psychiatric patient education manual, 103–104 Psychoanalysis, historical errors of, 15–16 Psychoeducational support group, 9t, 12, 13 Psychoeducation groups, specialized, 75–79 Psychopathology, level, caregiver gratification and, 24–25 Psychosis, first-episode, 60–61 Psychosocial interventions, for prodromal schizophrenia, 58–59, 66 Psychotic disorders, biological basis, 16 Psychotropic medication. See Antipsychotic medication PTSD (posttraumatic stress disorder), 75 Public Law 102–321, 2
Q Questionnaire of Family Functioning, 122–123
P
R
Pacific Clinics Institute model, xii, 101–102 Panic disorder, with agoraphobia, 125 Parents effects of poor parenting skills, 15–16 young parents with mental illness, 76–77 Parents of Adult Children of San Mateo County, 4 Partnership for Recovery, 104 Patient Outcomes Research Team (PORT), 6, 54–55, 116 Pebbles in the Pond: Achieving Resilience in Mental Health, 102–103 Peer-led FPE, vs. professional-led, 126 PIER (Portland Identification and Early Referral), 58, 66, 106 Pittsburgh program, 55–56 PMFG (psychoeducational multi-family group), 46 PORT (Patient Outcomes Research Team), 6, 54–55, 116 Portland Identification and Early Referral (PIER), 58, 66, 106 Portugal, research studies in, 89 Positive reinforcement, 45t Posttraumatic stress disorder (PTSD), 75 Pre-morbid personality, grieving loss of, 19
RADS (Reynolds Adolescent Depression Scale), 64–65 RAINBOW program, 62 Recovery consumers in the workforce, 133–134 evidence-based OTP approach, 50 expressed emotion and, 26 family interventions, concordance with recovery, 134–135 Recruitment of prodromal patients, 59 "Refrigerator mother," 16 Rehearsal, 45t Reimbursement issues, 114, 118, 119 Relapse/re-hospitalization antipsychotic medication and, 44–46, 56 expressed emotion and, 25 family psychoeducation and, 32, 57, 127–128, 139 inclusion of key family members and, 31 international studies, 86–87, 90, 93–94 long-term effects and, 52–54 in schizophrenia, 49f, 53–54, 88, 92 short-term, 96 multi-family groups and, 45–46 single-family approaches and, 45, 87 Release-of-information form, 136
180 Reynolds Adolescent Depression Scale (RADS), 64–65
S S.A.F.E. (Support and Family Education), 75 Salford Family Intervention Project, 53, 57 SAMHSA/CMHS, viii, 77 (see Substance Abuse and Mental Health Services Administration/Center for Mental Health Services Schizophrenia. See also Optimal treatment program antipsychotic medication, dose reduction, 44–46 behavioral family therapy, 82, 87–88 behavior-management model, 42–43 caregivers, one-day psychoeducational program for, 91 case management, 82 developmental theories, of family culpability, 27 family burden, 127 family education, 41 family psychoeducation, 2–4, 36–37, 40, 90, 92, 132 disability levels and, 92 efficacy of, 84–85, 106–107 with individual psychosocial treatment, 89–90 multi-family group, 46–48 needs-based cognitive-behavioral, 37–38 Pittsburg program, 38–39 relapse/re-hospitalization and, 49f, 53–54, 88, 92 family therapy models, 8 in Hispanics families, 83 incidence/prevalence, 2 inpatient care, 2–3 pathogenesis, 15–16 prodromal signs, 58 recent-onset, individual psychosocial intervention vs. behavioral family therapy, 86 spousal programs, 75–76 with substance abuse, 69 symptoms, 29 treatment strategies, 5, 44–46 Schizophrenia: A Family Education Curriculum, 101–102 Schizophrenia Patient Outcomes Research Team (PORT), vi, 5–6, 7, 54–55, 116 Schizophrenia-spectrum disorders, 88, 96 Schizophrenic family, 17
SUBJECT INDEX “Schizophrenogenic mother,” 15–16 SEE (Support, Empowerment, and Education group), 65–66 Serious mental illness (SMI), 130. See also Major affective disorders; Schizophrenia definition of, 1–2 incidence/prevalence, 2, 68 in young parents with children, 76–77 Service system deficits, as family stressor, 18–19 Shaping, 45t Single-family treatments, for dual diagnosis, 69 Skills training therapy, vs. customary care, 83–84 SMI. See Serious mental illness Societal stressors, 20–21, 27 Spain, research studies in, 86–87, 89, 122 Spanish-language programs, 99, 122 Spinal cord injury, 74–75 Spouses of persons with mental illness, programs for, 75–76 STEP-D (Systematic Treatment Enhancement Program), 52 Stigma, generalization to relatives, 20 Stress, psychobiological responses, 29–30 Stress-buffering hypothesis, 29 Stressors for families environmental, 29 iatrogenic, 21, 27 responses to, 33 situational, 18–20, 27 societal, 20–21, 27 Stress theory, 28 Substance abuse, with mental illness, 68–69 Support, Empowerment, and Education group (SEE), 65–66 Support and Family Education (S.A.F.E.), 75 Sweden, research studies in, 89 Switzerland, FPE implementation in, 112 Systematic Treatment Enhancement Program (STEP-D), 52
T TBI (traumatic brain injury), 74–75 TEC (Training, Education and Consultation Center), 10, 77, 101, 105 Thailand, 90 Therapists behavior of, 45, 45t competencies, 108 double messages of, 17–18 Thinking-Feeling-Doing technique, 63
181
SUBJECT INDEX Third-party reimbursement problems, 19 Thought disorders, 87 Three R’s Psychiatric Wellness Rehabilitation Program, 102 Time constraints, as implementation barrier, 113 TIPS (Treatment and Intervention in Psychosis), 61, 66 Training, 106–111, 118, 140. See also specific training programs attitudinal changes from, 108–109 for clinical settings, 107 competencies, 109–110 components, 138 content, 110–111 European Commission Training Study, 106–107 in dialectical behavior therapy, 71 implementation and, 120 in Europe and U.S. 110 in Meriden Project, UK, 107 multi-family vs. single-family, 106 Training, Education and Consultation Center (TEC), 10, 77, 101, 105 Traumatic brain injury (TBI), 74–75 Treatment and Intervention in Psychosis (TIPS), 61, 66 Treatment compliance, 90, 91–92 Treatment Strategies in Schizophrenia project, 45–46 Turkey, research studies in, 90
U United Kingdom Carers Equal Opportunities Act, 130
dual diagnosis programs, 78 European Commission Study, 89 family psychoeducation programs, for schizophrenia with substance abuse, 69 London Institute of Psychiatry, 36, 37, 55 programs for Black and Asian families, 81 United States FPE implementation in, 117–118 research studies in, 55–56 University of Birmingham, UK, 36 University of California at Los Angeles, 40, 43 University of Manchester UK, 36, 37 University of Pittsburgh, 38 University of Southern California, 40
V Veterans’ families, 75 Videotaping, of family interventions, 106, 108 Vietnamese-speaking families, programs for, 82
W Western Psychiatric Institute and Clinic, 38, 44 “Working with Families,” Los Angeles Mental Health Department, 108–109 World Fellowship for Schizophrenia and Allied Disorders (WFSAD), xii. 110, 130
Z Zenkaren Family Organization, Japan, 90
