ACCESS, QUALITY AND SATISFACTION WITH CARE, Volume 24: CONCERNS OF PATIENTS, PROVIDERS AND INSURERS (Research in the Sociology of Health Care) (Research in the Sociology of Health Care)

ACCESS, QUALITY AND SATISFACTION WITH CARE: CONCERNS OF PATIENTS, PROVIDERS AND INSURERS

RESEARCH IN THE SOCIOLOGY OF HEALTH CARE Series Editor: Jennie Jacobs Kronenfeld Recent Volumes: Volume 17:

Volume 18: Volume 19:

Health Care Providers, Institutions, and Patients: Changing Patterns of Care Provision and Care Delivery, 2000 Health, Illness, and Use of Care: The Impact of Social Factors, 2000 Changing Consumers and Changing Technology in Health Care and Health Care Delivery, 2001

Volume 20:

Social Inequalities, Health and Health Care Delivery, 2002 Volume 21: Reorganizing Health Care Delivery Systems: Problems of Managed Care and Other Models of Health Care Delivery, 2003 Volume 22: Chronic Care, Health Care Systems and Services Integration, 2004 Volume 23:

Health Care Services, Racial and Ethnic Minorities and Underserved Populations, 2005

RESEARCH IN THE SOCIOLOGY OF HEALTH CARE VOLUME 24

ACCESS, QUALITY AND SATISFACTION WITH CARE: CONCERNS OF PATIENTS, PROVIDERS AND INSURERS EDITED BY

JENNIE JACOBS KRONENFELD Department of Sociology, Arizona State University, Arizona, USA

Amsterdam – Boston – Heidelberg – London – New York – Oxford Paris – San Diego – San Francisco – Singapore – Sydney – Tokyo JAI Press is an imprint of Elsevier

JAI Press is an imprint of Elsevier The Boulevard, Langford Lane, Kidlington, Oxford OX5 1GB, UK Radarweg 29, PO Box 211, 1000 AE Amsterdam, The Netherlands 525 B Street, Suite 1900, San Diego, CA 92101-4495, USA First edition 2007 Copyright r 2007 Elsevier Ltd. 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 written permission of the publisher Permissions may be sought directly from Elsevier’s Science & Technology Rights Department in Oxford, UK: phone (+44) (0) 1865 843830; fax (+44) (0) 1865 853333; email: [email protected]. Alternatively you can submit your request online by visiting the Elsevier web site at http://elsevier.com/locate/permissions, and selecting Obtaining permission to use Elsevier material Notice No responsibility is assumed by the publisher for any injury and/or damage to persons or property as a matter of products liability, negligence or otherwise, or from any use or operation of any methods, products, instructions or ideas contained in the material herein. Because of rapid advances in the medical sciences, in particular, independent verification of diagnoses and drug dosages should be made British Library Cataloguing in Publication Data A catalogue record for this book is available from the British Library ISBN-13: 978-0-7623-1320-4 ISBN-10: 0-7623-1320-X ISSN: 0275-4959 (Series) For information on all JAI Press publications visit our website at books.elsevier.com Printed and bound in The Netherlands 07 08 09 10 11 10 9 8 7 6 5 4 3 2 1

CONTENTS ix

LIST OF CONTRIBUTORS SECTION I: ACCESS, QUALITY AND SATISFACTION WITH CARE ACCESS, QUALITY AND SATISFACTION: THREE CRITICAL CONCEPTS IN HEALTH SERVICES AND HEALTH CARE DELIVERY Jennie J. Kronenfeld

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SECTION II: PATIENTS AND SPECIAL TYPES OF CARE ACCESS, QUALITY AND SATISFACTION WITH CARE: CONCERNS OF VIETNAM VETERANS Katherine S. Virgo, Jennette R. Piry, Mary P. Valentine, Darcy R. Denner, Gery Ryan, Nathan K. Risk and Rumi Kato Price DISPARITIES IN OUTCOMES OF ACUTE MYOCARDIAL INFARCTION ACROSS HEALTH INSURANCE STATUSES Jay J. Shen, Elmer L. Washington, Ralph Bell, Kyusuk Chung and Donna Gellatly RACIAL AND SOCIOECONOMIC DIFFERENCES IN PREDICTORS OF DENTAL CARE USE Sam S. Kim, Jennie J. Kronenfeld and Patrick A. Rivers

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GETTING YOUR OWN DOCTOR IS ‘‘A STAB IN THE DARK’’: EXPLORING THE PRESENCE OF ON-CALL DOCTORS AT HOSPITAL BIRTHS AND POTENTIAL IMPLICATIONS FOR NURSING PRACTICE Heather Dillaway and Sonica Rehan

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SECTION III: ELDERLY CARE ISSUES DREAMS OF HOT TOAST AND SMILING NURSES: TOWARD A MODEL OF PATIENT-RESPONSIVE CARE IN NURSING HOMES Eva Kahana

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INSTITUTIONAL CONSTRAINTS ON RESIDENTS IN LONG-TERM CARE FACILITIES FOR THE ELDERLY Samantha Sterns and Eva Kahana

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SECTION IV: ACCESS, QUALITY AND SATISFACTION IN FOREIGN HEALTH CARE SYSTEMS THE TRIAD OF HEALTH CARE – ACCESS, QUALITY, AND COST: A STORY OF HUNGARY IN 2006 Katalin Papp and Beth Furlong BETWEEN A ROCK AND A HARD PLACE: ACCESS, QUALITY AND SATISFACTION WITH CARE AMONG WOMEN LIVING IN RURAL AND REMOTE COMMUNITIES IN CANADA Ivy L. Bourgeault, Rebecca Sutherns, Margaret Haworth-Brockman, Christine Dallaire and Barbara Neis

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SECTION V: SATISFACTION, ACCESS, AND QUALITY ISSUES IN PUBLIC SYSTEMS OF CARE PUBLIC HEALTH CARE FOR LOW-INCOME AND MINORITY WOMEN WITH CHILDREN IN AN AGE OF WELFARE REFORM Vicky M. MacLean, Patricia Parker and Melissa Sandefur STEPS TO A NEGOTIATED CONSENSUS: A FRAMEWORK FOR DEVELOPING COMMUNITY HEALTH INITIATIVES Teresa L. Scheid, Dennis R. Joyner, Marcus G. Plescia and Kelly Blasky

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LIST OF CONTRIBUTORS Ralph Bell

Department of Health Administration, Governors State University, IL, USA

Kelly Blasky

Charlotte Area Health Education Center, Charlotte, NC, USA

Ivy L. Bourgeault

Department of Sociology & Health, Aging & Society, McMaster University, Hamilton, Ontario, Canada

Kyusuk Chung

Department of Health Administration, Governors State University, IL, USA

Christine Dallaire

School of Human Kinetics, University of Ottawa, Ottawa, Ontario, Canada

Darcy R. Denner

Department of Chemistry & Biochemistry, University of Missouri St. Louis, St. Louis, MO, USA

Heather Dillaway

Department of Sociology, Wayne State University, Detroit, MI, USA

Beth Furlong

School of Nursing, Creighton University, Omaha, NE, USA

Donna Gellatly

Department of Health Administration, Governors State University, IL, USA

Margaret HaworthBrockman

Prairie Women’s Health Centre of Excellence, Winnipeg, Manitoba, Canada

Dennis R. Joyner

Carolinas Community Health Institute, Carolinas Health Care System, Charlotte, NC, USA

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Eva Kahana

Department of Sociology, Case Western Reserve University, Cleveland, OH, USA

Sam S. Kim

Department of Sociology, Arizona State University, Tempe, AZ, USA

Jennie J. Kronenfeld

Department of Sociology, Arizona State University, Tempe, AZ, USA

Vicky M. MacLean

Department of Sociology and Anthropology, Middle Tennessee State University, Murfreesboro, TN, USA

Barbara Neis

Department of Sociology, Memorial University, St. John’s, Newfoundland, Canada

Katalin Papp

Faculty of Health Sciences, University of Debrecen, Nyiregyhaza, Hungary

Patricia Parker

Department of Sociology and Anthropology, Middle Tennessee State University, Murfreesboro, TN, USA

Jennette R. Piry

Department of Surgery, Saint Louis University Medical Center, St. Louis, MO, USA

Marcus G. Plescia

North Carolina Division of Public Health, Raleigh, NC, USA

Rumi Kato Price

Department of Psychiatry, Washington University School of Medicine, St. Louis, MO, USA

Sonica Rehan

School of Medicine, Karmanos Cancer Institute, Wayne State University, Detroit, MI, USA

Nathan K. Risk

Department of Psychiatry, Washington University School of Medicine, St. Louis, MO, USA

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Patrick A. Rivers

College of Applied Sciences and Arts, Southern Illinois University, Carbondale, IL, USA

Gery Ryan

RAND Corporation, Santa Monica, CA, USA

Melissa Sandefur

Department of Sociology and Anthropology, Middle Tennessee State University, Murfreesboro, TN, USA

Teresa L. Scheid

Department of Sociology, University of North Carolina at Charlotte, Charlotte, NC, USA

Jay J. Shen

Department of Health Care Administration and Policy, School of Public Health, University of Nevada at Las Vegas, Las Vegas, NV, USA

Samantha Sterns

Sociology Department, Case Western Reserve University, Cleveland, OH, USA

Rebecca Sutherns

Department of Sociology & Health, Aging & Society, McMaster University, Hamilton, Ontario, Canada

Mary P. Valentine

New York University, New York, USA

Katherine S. Virgo

Department of Surgery, Saint Louis University Medical Center & Department of Veterans Affairs Medical Center, St. Louis, MO, USA

Elmer L. Washington

Aunt Martha’s Youth Services Center, Chicago Heights, IL, USA

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SECTION I: ACCESS, QUALITY AND SATISFACTION WITH CARE

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ACCESS, QUALITY AND SATISFACTION: THREE CRITICAL CONCEPTS IN HEALTH SERVICES AND HEALTH CARE DELIVERY Jennie J. Kronenfeld ABSTRACT This chapter provides an introduction to the volume and reviews some issues related to access, quality and satisfaction with care as three critical concepts in health services and health care delivery. In addition to this review of some of the material on access, quality and satisfaction with care, this chapter also serves as an introduction to the volume. As such, the chapter explains the organization of the volume and briefly comments on each of the chapters included in the volume.

The theme of this volume is Access, Quality and Satisfaction with Care: Concerns of Patients, Providers and Insurers. The volume is divided into five sections. The first section discusses the overall issues of access, quality and satisfaction with care. In addition, the first chapter also provides an introduction to the other chapters in the volume. The next section includes chapters that are about patients and special types of care, such as for

Access, Quality and Satisfaction with Care: Concerns of Patients, Providers and Insurers Research in the Sociology of Health Care, Volume 24, 3–14 Copyright r 2007 by Elsevier Ltd. All rights of reproduction in any form reserved ISSN: 0275-4959/doi:10.1016/S0275-4959(06)24001-8

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Vietnam veterans, patients with myocardial infarctions, and dental care and maternity care. The third section relates to elderly care issues. The fourth section looks at issues of access, quality and satisfaction with care from the perspective of foreign countries, more specifically the health care systems of Canada and Hungary. The last section deals with satisfaction, access and quality issues in public systems of care. Traditionally in health services research, cost, quality and access to care have been viewed as the three major issues of health care delivery (Blendon, Kim, & Benson, 2001; Kronenfeld, 2002). Satisfaction is often viewed as a specialized aspect of access to care. Given the sociological focus of this volume, costs are less of a focus, but access, quality and satisfaction are important aspects of health services delivery concerns and have been for more than 30 years (Andersen, 1995). A review of some of the findings related to all of the concepts, including costs, helps to introduce the topics in this book. The idea of focusing on studies of cost, quality and access to care is tied in with the development of health services research in the United States. When the National Center for Health Services Research (NHSR) was started as a federal government agency in the United States in late 1960s (today the organization is known as AHRQ (Agency for Health Care Research and Quality), its major foci were to improve the funding for health services research and to gain greater recognition for that type of work. Some sources emphasize the role of Kerr White as a linchpin in the creation of modem health services research. His work at North Carolina, Johns Hopkins and elsewhere brought him into contact not only with the leaders of his generation, such as Cecil Sheps, but, in his role as teacher, with the leaders of the next generations as well. In this manner, White’s influence spread beyond Johns Hopkins to include researchers at the other major centers of activity, such as RAND (a private research firm in California) and the Robert Wood Johnson Foundation, one of the major foundations that focuses on philanthropic efforts in health, and especially that has a focus on non-clinically based health research such as social science research in health and health services research. One of the strengths of the early efforts by White was that he self-consciously sought to advance the identity of the field, as his efforts to create the National Center for Health Services Research and Development demonstrated (History of Health Services Research Project, 2006). The National Center for Health Services Research and Development came into existence on May 2, 1968. Health services research had acquired what amounted to its own National Institute of Health. Major concerns of the new center were quality, access, costs, efficacy and efficiency.

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Over time, the focus of the agency broadened and expanded and it was renamed The Agency for Health Care Research and Quality (AHRQ) and became the lead federal agency charged with improving the quality, safety, efficiency and effectiveness of health care for all Americans. As 1 of 12 agencies within the Department of Health and Human Services, AHRQ supports health services research that will improve the quality of health care and promote evidence-based decision-making. There are also other US federal government agencies that take some responsibility for research in this area. The Centers for Disease Control and the Centers for Medicare and Medicaid Services have some independent research capacities in these areas, as does the Veterans Health Administration in terms of Veterans Administration health care facilities. The National Centers for Health Statistics assures that researchers have access to important health data, and the National Institutes of Health also funds some research in this area. Part of Academy Health, a research organization in health services research includes a coalition that is the advocacy arm of the overall group. The coalition is focusing on insuring that mechanisms are in place to strengthen the infrastructure for health services research including more funding for graduate students and early career researchers, investigator initiated research and targeted initiatives as well as making sure that health data sets with special interests for health services researchers remain available (Academy Health, 2005). While this volume focuses on research on the sociology of health care, some aspects of research into health care are multidisciplinary, and health services research has become the accepted term to describe these types of research. Sociologists conduct this research, as do other social scientists such as economists, political sociologists and anthropologists along with researchers trained in schools of public health, perhaps in health administration, behavioral sciences, health policy or health services research or medical care programs. The review of the basic concepts will focus more heavily on sociological approaches, but will review access (including costs), quality and satisfaction research.

ACCESS, COST AND SATISFACTION WITH CARE While the relative amount of emphasis in debates in health policy as well as medical sociological concerns on access versus quality or cost varies from one time period to another, generally researchers from a variety of perspectives (medical sociology, health services research and health policy) have all viewed issues of access to care as fundamental for any health care system

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to resolve. In contrast to researchers and policy-makers, the general public often views issues of access to care to be the most important in periods of time when people fear losing their own health insurance coverage. The last few years have again become one of those periods for many people, as the cost of health care insurance has been increasing, leading some employers to consider no longer offering the benefit or making it much more expensive for workers. Another trend related to health insurance and other workplace benefits has been to hire people not as regular employees with benefits but as contract workers. As contract workers, people are responsible for paying for their own benefits including health insurance. This reorganization of some types of jobs has especially created concerns for younger people as they enter the workforce. Most experts agree that rising costs of health insurance have led directly to declining coverage. If we look at the 2003 US average costs per person for health care (medical care, drugs, supplies and insurance), they were $5,241, with projections that these costs will double by 2013. These figures were much lower in the past, with per capita expenses increasing from $30 in 1940 to $143 in 1960, $348 a person in 1970 on up to $1,067 in 1980 in constant dollars. Prior to World War II, only 4 percent of the nation’s overall wealth each year was spent on health care. By 1960, this figure had increased only to 5.1 percent of the gross domestic product (GDP) and continued to increase to 7 percent in 1970 and 8.8 percent in 1980. By 1990, health care expenditures reached $695 dollars, up to 12 percent of the GDP, and in 2004, total health care spending represented 16 percent of the GDP and is projected to reach 20 percent of GDP in the next decade. The United States is the high spender compared to other countries, with few other countries spending as much as 10 percent of their GDP on health care, despite providing coverage to all citizens. In any given year, about 85 percent of the US community population has some medical expenses. The average total expense (including out of pocket costs and costs covered by insurance of some type) for people who had any medical expenses was $2,400. About half of all people with medical expenses spent less than $559, the median expense. This is because a small proportion of people have a disproportionately large share of medical expenses (Per Capita Health Care Expenses, 1996, 2000). Because the costs of health care are increasing and are very high for some people, the costs of health insurance are increasing and more Americans are losing health insurance coverage at their workplace or paying much higher costs for the health care insurance. In 2000, about 40 million Americans did not have health insurance, a figure that increased to 45 million by 2004, or

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about 18 percent of the population under the age of 65 years (almost all people 65 and more years have coverage through the Medicare program) (Kaiser Commission on Medicaid and the Uninsured, 2006). Ethnicity plays an important role in variation in health insurance coverage, with one-third of Hispanics and one-quarter of Native Americans uncovered. About 21 and 20 percent of African Americans and Asian Americans are uncovered versus only 13 percent of white Americans. Rates of coverage also vary by state, partially because Medicaid (the program that covers some of the poor) is more generous in some states than in other states. People in the south and southwest are twice as likely to be uninsured as those in better covered regions such as the Upper Midwest. Since 2000, more Americans, especially adults under 65 years of age, are without health insurance. Employer sponsored health insurance has decreased from 2000 to 2004 by 5 percentage points, and now covers 61 percent of the non-elderly, down from 66 percent in 2000. For children, publicly funded health insurance, both Medicaid and SCHP (State Children’s Health Insurance Program) have helped to fill the gap (Kaiser Commission on Medicaid and the Uninsured, 2006). There is a strong relationship between health insurance coverage and access to medical services. People with health insurance coverage are more likely to receive care in most years, and the lack of health insurance ultimately harms people’s health because they are less likely to receive preventive care, more likely to be hospitalized for preventable problems and more likely to be diagnosed in the later stages of illness (Kaiser Commission on Medicaid and the Uninsured, 2006). There are also people with some health insurance coverage, but much less than complete coverage. These people are often described as the underinsured Americans, people whose coverage often leaves them with more medical bills than they can afford to pay. Based on 2003 US data, nearly 16 million Americans ages 19–64 years were underinsured. Most of these people were either chronically ill or had only a low to moderate income. They often reported rates of financial stress similar to those who are uninsured (Schoen, Doty, Collins, & Holmgren, 2005). In some models of explanation of health care services utilization, satisfaction is viewed as an example of realized access to care (Aday, Andersen, & Fleming, 1980). Satisfaction with care can only be discussed if people have access into the health care delivery system. Using this approach, satisfaction to care is part of a subjective measure of access to care. Consumer satisfaction refers to attitudes toward the medical care system of people who have experienced a recent enough contact with the health care system to be able to provide a subjective assessment of how they felt about that delivery

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care setting. Satisfaction is not the same as beliefs about the health care system, but should be tied to more specific and discrete situations of having received health care. In many manage care systems currently, there are phone satisfaction surveys that are conducted usually within a week or two of an office visit to try to determine how satisfied patients were with the care received in that specific office visit. Patients may be asked about how long they waited before being seen, how long they waited to see the physician or nurse practitioner once preliminary care aspects (weight, blood pressure measurements) were handled, how concerned and pleasant the office staff as well as the health care providers were during that care visit, as well as questions about overall satisfaction with care and satisfaction with the outcome of the visit. Because satisfaction with care has an important aspect of qualitative judgment by the patient, it is an aspect of care that is well suited to qualitative research approaches. There are also attempts to develop better quantitative measurements of satisfaction. In health care in recent decades, there has been some renewed emphasis on patient satisfaction from a multidisciplinary perspective, sometimes drawing upon business models and even discussing customer satisfaction as might be discussed in business, non-health care settings (Brown, Nelson, Bronkesh, & Wood, 1993). In some of these approaches, part of the emphasis is a realization that clinical quality is one aspect of satisfaction and service quality is another aspect. Together, the two provide a more complete sense of patient satisfaction. This way of thinking of satisfaction links satisfaction as a measure linked to access to quality as well, since one part of overall satisfaction is clinical quality, as discussed in the next section.

QUALITY OF CARE Quality is generally defined as the degree of excellence or conformation to high standards. Thus, quality cannot be defined without a clear understanding about the expected standards of excellence. In 1990, the Institute of Medicine (IOM) defined quality as ‘‘the degree to which health services for individuals and populations increase the likelihood of desired health outcomes and are consistent with current professional knowledge’’ (Lohr & Schroeder, 1990, p. 710). A different way to think about this is to ask whether services are being provided in a technically competent manner, with good communication, shared decision-making and cultural sensitivity. Many concerns about quality of health care are not new. Some of the most discussed fairly recent efforts in the United States to discuss quality of

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care concerns relate to three IOM reports in 1999 and 2001, although some discussion of the earlier efforts, especially the history of concern about quality in the late 1980s is instructive (IOM, 1999a, 1999b, 2001). For example, in the first six months of 1988, four different public agencies all released reports about issues in quality of health care (Becher & Chassin, 2001). After this flurry of activity, physician organizations, quality experts and legislators ended up agreeing that new efforts were needed. The initial most visible result of this concern was the already mentioned transformation of what had been the federal agency focused on overall health services research, the National Center for Health Services Research (NCHSR) into the Agency for Health Care Policy and Research (AHCPR), now slightly renamed again as AHRQ (Agency for Health Care Research and Quality). The renamed agency was charged to invest in research on the effectiveness of health care services and to develop practice guidelines to assist providers in improving quality. By 1990, MEDTEP, the Medical Treatment and Effectiveness Program was created. Congressional authorizations provided for funding as high as $185 million by 1994. The MEDTEP program had four elements: medical treatment effectiveness research, development of databases for such research, development of clinical guidelines, and the dissemination of research findings and clinical guidelines. The specific name for the effectiveness research program was PORTs (Patient Outcomes Research Teams). PORT projects included a review and formal synthesis of available research to serve as the basis for specifying research hypotheses. PORTs were to collect and analyze data to identify and explain variations in clinical practice and patient outcomes. PORTs were funded to study acute myocardial infarction, locally invasive prostatic carcinoma, low back pain, cataracts, colon cancer, hip fracture, chronic ischemic heart disease, stroke and several smaller more specialized problems. The goal was to produce a leaner, trimmer health care system in which procedures that were effective could be funded and spread through the country and procedures that were not could be eliminated. Several concerns and controversies have arisen about this process. Some researchers argue that too many funds were concentrated on a few projects. Some practicing physicians feared that researchers removed from the reality of patients and clinical situations were making decisions to eliminate procedures that are helpful to individual patients. As one example, the results from the low back pain and myocardial infarction study initially generated controversy (AHCPR, 1991) because the back pain study PORT indicated that most episodes of low back pain improved rapidly with little or no intervention and that few patients even required plain X-rays, much less

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more sophisticated treatment (AHCPR, 1991). Some experts now argue that this whole emphasis has produced a more rigorous body of research that has demonstrated just how serious and widespread quality problems are (Schuster, McGlynn, & Brook, 1998). A number of recent articles have tried to summarize the new quality concerns in the United States, incorporating especially the critiques of the IOM (2001) report that argued that physicians, nurses and other health professionals are doing their best to provide good quality care but that the current system does not reward innovation and communication. The 1999 report ‘‘To Err is Human’’ found that more people die each year from medical mistakes than from highway accidents, breast cancer and AIDS. Both among the public and among health professionals, the report created enormous concern, many arguing that the public was becoming unnecessarily panicked about such problems. The more recent report has been received more favorably from within the medical profession, and is raising among experts a number of questions about how to best think about quality issues. In some ways, there are three different types of quality problems (Becher & Chassin, 2001). The first type of harm is if patients do not receive beneficial health services. The second is when patients undergo treatments or procedures from which they do not benefit. The third situation is when patients do receive appropriate medical services, but the services are provided inappropriately. A simple way to summarize these three types of problems is as underuse, overuse and misuse. Health services research literature demonstrates that, on average, half of Americans do not receive recommended preventive care, 30 percent do not receive recommended care for acute conditions and 40 percent for chronic conditions. Similarly high rates of overuse have been demonstrated, about 30 percent for acute conditions and 40 percent for chronic (Schuster et al., 1998). Studies of misuse are more complicated. Some occur in hospitals and one of the best known of these studies, the Harvard Medical Practice Study (1990), found that 1 percent of patients hospitalized in New York hospitals in 1984 had an injury from negligence. A retrospective implicit review of medical records from 1995 to 1996 at seven Veterans Administration medical centers found that almost one-quarter of active care patient deaths were possibly preventable by optimal care, and 6 percent were rated as probably or definitely preventable (Haywood & Hofer, 2001). The 2001 IOM report argues that the current US health care system is a tangled, highly fragmented web that often wastes resources with unnecessary services and duplicated efforts. Possible solutions are to revamp the system to deal not only with the needs and values of patients, but also to

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develop greater teamwork among health professionals and greater use of information technology. Some of the technological suggestions are better use of computers in the maintenance of medical records and information, automated medication order entry systems to reduce human error and the use of e-mail to facilitate communication between patients and doctors. The report also suggests that AHRQ should identify 15 or more chronic health problems and help develop strategies and action plans to improve care for each of these priority conditions over the next decade. The report also recommends that the US Department of Health and Human Services should monitor and track quality improvements in six key areas: safety, effectiveness, responsiveness to patients, timeliness, efficiency and equity. Some of these ideas sound quite similar to the reaction in the late 1980s to the concern about quality. Hopefully, however, new research in new decades does uncover additional findings, resulting in a cumulative improvement in our understanding of quality concerns in health over time.

REVIEW OF ORGANIZATION OF THE BOOK This volume is divided into four sections. The first section is this introductory chapter on access, quality and satisfaction with care. The second section includes four chapters, all relating in various ways to patients and special types of care. The first chapter in this section is by Virgo, Piry, Ryan, Risk and Price and focuses on access, quality and satisfaction with care among the special group of Vietnam veterans. The study uses a combined quantitative/qualitative approach to examine the extent of access to care problems and barriers and facilitators to care. The chapter also examines patient-perceived quality of care concerns. One important, although not unexpected, finding was that those at high risk for suicide were significantly more likely to have psychiatric conditions and substance use conditions as compared to those at low risk of suicide. The chapter also makes rich use of its qualitative data to discuss long-term effects of the health care seeking experience. The second chapter examines disparities in outcomes of acute myocardial infarction patients focusing on the impact of different health insurance statuses by Shen, Washington, Bell, Chung and Gellatly. Compared to patients who have private health insurance, patients with Medicaid have a higher mortality risk related to severity of illness and level of risk of their basic cardiac problems. Patients with no insurance have the highest mortality risks, related to interactive effects between insurance status and hospital characteristics. The third chapter in this section looks at dental care

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as a special type of care. The chapter by Kim, Kronenfeld and Rivers uses quantitative analytical techniques to explore racial and socioeconomic differences in predictors of dental care use. Minority status, income and education are all predictive of delay in the receipt of dental care. The last chapter in this section examines patients giving birth in hospitals. Dillaway and Rehan explore the impact of on-call doctors, that is a doctor who was not the person chosen for care by the pregnant woman, during the birthing experience. Qualitative research techniques indicate that women often do not expect or desire the on-call doctors’ presence at their births and this leads to greater reliance on obstetric nurses for information and support. Section 3 of the book explores issues of elderly care. This section includes two chapters, one by Kahana and one by Sterns and Kahana. In the first chapter, Kahana examines issues of patient-responsive care in nursing homes and includes important suggestions for ways to improve quality of care in nursing homes. The second chapter in this section explores the problems in care related to institutional constraints on residents in longterm care facilities for the elderly. In long-term care institutions such as nursing homes, assisted living facilities and continuing care retirement communities, life is often regimented and residents are presented with many rules and expected patterns of behavior. This chapter applies sociological theory to 168 residents’ self-reports of their lives and problems they experienced in their first months of living in these settings. Section 4 of the book explores issues of access, quality and satisfaction with care from the perspective of other health care systems besides the United States. The first chapter in this section, by Papp and Furlong, explores issues of access, quality and cost in the Hungarian health care system in 2006. The changes within the health care system in Hungary are explored within the context of ongoing political, economic, technological and cultural changes in Western, Central and Eastern Europe. The largest focus is on the changes in the preparation of health care professionals, especially the nursing subsector. The second chapter, by Bourgeault, Sutherns, Brockman, Dallaire and Neis, looks at issues of access, quality and satisfaction with care among women living in rural and remote communities in Canada. The relationship between health services restructuring and health care experiences of women in rural and remote areas are explored through a mixture of focus group interviews, telephone interviews and online survey responses. One of the most important limitations for access with these women is the increasing distances that women have to drive (or even fly) to get to care and the costs related to this. Other concerns are turnover in personnel in rural areas and patronizing attitudes of some providers.

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The last section of the book, Section 5, includes two chapters that deal with issues of satisfaction, access and quality issues in public systems of care. Both of these chapters explore health care within the context of broader societal issues. The first chapter, by MacLean, Parker and Sandefur, looks at issues related to publicly funded health care for low-income and minority women in this era after welfare reform. Using focus groups as part of a qualitative case study approach, concerns among pregnant women or women who already have children about health care access and satisfaction are presented. All the women have some difficulty in accessing health care services, but problems with accessibility and information barriers are more prominent in rural areas, while urban women report greater barriers with bureaucratic barriers and longer waiting times. The second chapter, by Scheid, Joyner, Plescia and Blasky, reports on a framework for developing community health initiatives with a focus on negotiated consensus. The chapter uses the efforts by a regional health care system as a guide, and points out how a negotiated consensus must take into account differences among key stakeholders such as community advocates, agency leaders, service providers and consumers of care. This broader, more systemic oriented chapter helps to close this volume’s exploration of issues of access, satisfaction and quality by focusing on broad, system concerns rather than the individual level data of a number of the other chapters in the book.

REFERENCES Academy Health. (2005). Year in review. http://www.academyhealth.org/publications/ 2005yearinreview.pdf Aday, L. A., Andersen, R., & Fleming, G. V. (1980). Health care in the US: Equitable for whom? Beverly Hills, CA: Sage Publications. Agency for Health Care Policy and Research. (1991). Report to Congress: Progress of research on outcomes of health care services and procedures. Washington, DC: US Department of Health and Human Services. Andersen, R. M. (1995). Revisiting the behavioral model and access to medical care: Does it matter? Journal of Health and Social Behavior, 36(1), 1–10. Becher, E. C., & Chassin, M. R. (2001). Improving the quality of health care: Who will lead? Health Affairs, 20, 164–179. Blendon, R. J., Kim, M., & Benson, J. M. (2001). The public versus the World Health Organization on health system performance. Health Affairs, 20, 10–20. Brown, S. W., Nelson, A. M., Bronkesh, S. J., & Wood, S. D. (1993). Patient satisfaction pays: Quality service for practice success. Gaithersburg, MD: Aspen Publishers, Inc. Harvard Medical Practice Study. (1990). Patients, doctors and lawyers: Medical injury, malpractice litigation, and patient compensation in New York. Cambridge, MA: Harvard University.

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Haywood, R. A., & Hofer, T. P. (2001). Estimating hospital deaths due to medical errors. Journal of the American Medical Association, 286, 415–420. History of Health Services Research Project. (2006). http://www.nlm.nih.gov/hmd/nichsr/ intro.html#w49-3 Institute of Medicine (IOM). (1999a). To err is human. Washington, DC: National Academy of Sciences. Institute of Medicine (IOM). (1999b). Measuring the quality of health. Washington, DC: National Academy of Sciences. Institute of Medicine (IOM). (2001). Crossing the quality chasm: A new health system for the 21st century. Washington, DC: National Academy of Sciences. Kaiser Commission on Medicaid and the Uninsured. (2006). The uninsured: A primer: Key facts about Americans without health insurance. Washington, DC: Henry J. Kaiser Family Foundation. Kronenfeld, J. J. (2002). Health care policy: Issues and trends. Westport, CT: Praeger. Lohr, K., & Schroeder, S. A. (1990). A strategy for quality assurance in Medicare. New England Journal of Medicine, 322, 707–712. Per Capita Health Care Expenses, 1996. (2000). MEPS (Medical Expenditure Panel Survey) Highlights, No. 12. Schoen, C., Doty, M. M., Collins, S. R., & Holmgren, A. L. (2005). Insured but not protected: How many adults are underinsured? Health affairs. Web exclusive. http://content. healthaffairs.org/cgi/content/abstract/hlthaff.w5.289v1 Schuster, M. A., McGlynn, E. A., & Brook, R. H. (1998). How good is the quality of health care in the United States? The Milbank Quarterly, 76, 517–563.

SECTION II: PATIENTS AND SPECIAL TYPES OF CARE

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ACCESS, QUALITY AND SATISFACTION WITH CARE: CONCERNS OF VIETNAM VETERANS$ Katherine S. Virgo, Jennette R. Piry, Mary P. Valentine, Darcy R. Denner, Gery Ryan, Nathan K. Risk and Rumi Kato Price ABSTRACT The objectives of the current interim report are to measure the extent of the access to care problem, identify and compare the types of patient- and system-based barriers experienced by Vietnam veterans at risk for suicide when seeking care for physical, psychiatric, and substance abuse conditions, analyze patient-perceived quality of care for individuals who obtained access to care, and identify how the care-seeking experience effected future care seeking. This study is based on a longitudinal sample of 494 Vietnam veterans discharged from military service in September $

The views expressed in this paper are those of the authors and should not be construed as reflecting the official position of Saint Louis University, New York University, University of Missouri Saint Louis, RAND Corporation, Washington University, or the Department of Veterans Affairs.

Access, Quality and Satisfaction with Care: Concerns of Patients, Providers and Insurers Research in the Sociology of Health Care, Volume 24, 17–40 Copyright r 2007 by Elsevier Ltd. All rights of reproduction in any form reserved ISSN: 0275-4959/doi:10.1016/S0275-4959(06)24002-X

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1971 and subsequently identified as at risk for suicide (306 low risk; 188 high risk). Seventy-one percent (350) of 494 participants completed an extensive qualitative and quantitative interview covering, among other topics, physical conditions, psychiatric conditions, substance use, barriers to care, facilitators of care, and quality of care. Barriers, satisfaction, and effect of the experience were compared by type of condition and suicidal risk category using w2 analysis and Fisher’s as appropriate. The analysis is based on 257 interviews (73 percent) with qualitative data transcribed thus far. Results: Of the 195 patients with self-reported health conditions, 76 (39.0 percent) and 45 (23.1 percent) expressed system-based barriers to care, respectively. The group at higher risk of suicide was significantly more likely (po0.01) to report patient-based barriers to care and system-based barriers to care (po0.05), and more likely (po0.05) to experience negative effects of the care-seeking experience. Both selfperceived and system-based barriers to care pose obstacles for patients at high risk of suicide. Targeted interventions are required to reach out to these patients to address needs for care currently unmet by the health care system and to reduce negative effects of the health care experience.

The market for health care services is unique. In this market, the patient is generally not an informed consumer. Unlike other items in the marketplace for which patients shop for the best value for their money and often conduct research to acquire detailed information prior to making a purchase, for health care services patients place their trust in an intermediary, their physician. The patient trusts that this intermediary will select the health care services best suited to their needs and will not subject the patient to undue risk by requesting unnecessary tests or denying access to needed services. It is also assumed that the physician will be up to date on all emerging research that may at any time concern the physical and mental health of the patient. Further complicating this trust relationship are insurance and reimbursement issues. In the absence of a well-funded national health insurance system, disjointed incremental U.S. health policy has produced a patchwork quilt of public programs (Medicare, Medicaid, CHIP) designed to provide needed health services to select vulnerable populations. The remainder of the population receives health services based on ability to purchase insurance coverage or pay for services as needed. Among the privately and publicly insured, reimbursement caps often prohibit patients from receiving needed services. Some managed care corporations are viewed as rewarding physicians for limiting certain services.

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It is no surprise that many patients in the U.S. lack access to needed health care services. Access to care for behavioral health problems is a particularly problematic area in the current health care system. According to data from the National Comorbidity Survey, for those respondents with three or more lifetime psychiatric disorders, only 60 percent ever receive any care for those illnesses, only one-third receive care for a current episode, and only one-fifth receive any specialty mental health care for the current episode (Kessler et al., 1994). The Community Tracking Study, which tracks changes in the U.S. health system in 60 sites representative of the nation, reported that 16 percent of patients in metropolitan areas believed that their doctor might not refer them to a specialist when needed. Twenty-five percent of physicians stated that it was not always possible to provide high-quality care to all of their patients. Of the primary care physicians, 20 percent reported difficulty in obtaining referrals to high-quality specialists for their patients though medically necessary (Health System Change, 1998–1999). According to Kohn, Saxena, Levav, and Saraceno (2004: 859), a bridging of the treatment gap is needed. The treatment gap or median untreated rate is: ‘‘the absolute difference between the true prevalence of the disorder and the treated proportion of individuals affected by the disorder.’’

Particularly for psychiatric conditions, this treatment gap is wide. Based on a literature review of studies of adults 15 years of age and older for 1980 forward, the treatment gap is 56.3 percent for major depression, 57.5 percent for generalized anxiety disorder, and 78.1 percent for alcohol abuse and dependence. It is estimated that 33 percent of all years lived with disability are attributed to neuro-psychiatric conditions. For patients who succeed in obtaining care, few studies evaluate whether the care was actually appropriate for the patient’s needs as assessed by both the physician and the patient. Traditional models of health care quality assessment often do not factor patient satisfaction into the mix. It is often believed that patients are not informed enough to know if they are receiving good-quality care (Ward, Rolland, & Patterson, 2005). Evidence also suggests that patient evaluations of health care quality are often highly correlated with health status (Hall, Milburn, & Epstein, 1993; Marshall, Hays, & Mazel, 1996). Patients with widely divergent self-reported health status may evaluate the same health service very differently. Rarely are the longterm effects of the care-seeking experience examined. For those with psychiatric problems, the patient’s evaluation of health care need and quality may often be colored by the psychiatric diagnosis.

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Conducted as part of a longitudinal study of Vietnam veterans discharged from military service in September 1971, the current study focuses on 494 respondents subsequently identified as at varying levels of risk for suicide (Price, Chen, Risk, Haden, & Lewis, in press). The scope of the full project is broad focusing on significant life events, post-traumatic stress disorder, suicidal ideation/attempts, effects of 911, worst negative events, barriers to and facilitators of care, and quality of care. The first objective of the current interim report is to measure the extent of the access to care problem and identify specific barriers to care seeking for self-reported physical, psychiatric, and drug use problems. The second objective is to analyze patient-perceived quality of care for those individuals who obtained access to care and to identify how the care-seeking experience effected future care seeking.

BACKGROUND Barriers to care have often been categorized as either individual/personal or structural/institutional in nature (Melnyk, 1988; Vogt et al., 2006). Common barriers to care identified in health services utilization studies include language, culture, child or adult care costs, travel distance and associated commuting costs, residing in a rural area or poor community, absence of health insurance or funds to pay for treatment, lack of a regular source of care, limited office or clinic hours, and personal obligations (Fortney, Rost, Zhang, & Warren, 1999; Gresenz, Stockdale, & Wells, 2000; Li, Logan, Yee, & Ng, 1999; McFall, Malte, Fontana, & Rosenheck, 2000). Male gender has been identified as a barrier to care and as a major predictor of delay in care seeking (Galdas, Cheater, & Marshall, 2005; Husaini, Moore, & Cain, 1994; McKay, Rutherford, Cacciola, Kabasakalian-McKay, & Alterman, 1996; Padesky & Hammen, 1981; Thom, 1986; Weissman & Klerman, 1977). Barriers to care specific to female veterans have also been identified. In a recent telephone survey of 942 female veterans, the leading barrier to care among users of the Department of Veterans Affairs (VA) health care system was ease of use, measured as waiting times for check-ups, ability to contact VA staff by phone, and level of the facility’s cleanliness (Vogt et al., 2006). Alternatively, others suggest that behavior and attitudes associated with particular career and lifestyle choices, rather than gender, serve as barriers to care seeking (Lee & Owens, 2002). Additional barriers specifically faced by patients with behavioral health problems include a knowledge gap regarding the range of available

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treatment options and mental health benefit entitlements, fear of rejection by the health care system due to the social stigma and labeling associated with substance abuse and mental disorders, confidentiality concerns, perception of symptoms as somatic rather than psychiatric in origin, a reluctance to appear foolish, weak, or to be labeled as a hypochondriac, and difficulty negotiating the health care system due to a psychiatric diagnosis (Copeland, 1997; Mickus, Colenda, & Hogan, 2000). Barriers also stem from inadequate or poor-quality care and lack of adherence by clinicians to established treatment guidelines. Even when individuals with behavioral health problems are receiving medical care for other conditions and have the requisite financial resources and geographic access to care, they are less likely to receive behavioral health services. Studies have shown health care systems failing to provide any treatment for mental or substance use illnesses or treating only one condition when co-occurring conditions exist (Kessler et al., 2005; Mechanic & Bilder, 2004). Although mental and substance use conditions frequently co-occur with general medical problems, the coordination of clinicians to provide comprehensive treatment is often inadequate (New Freedom Commission on Mental Health, 2003). Recent health care utilization analyses have also identified factors that seem to facilitate access to care. For example enhanced managed care organization presence may facilitate access by emphasizing prevention, educating the community about the need for prevention through advertising, or fostering increased competition among doctors vying for patients, resulting in reduced fees and thus reduced costs to patients (Gresenz et al., 2000; Manning, Wells, & Benjamin, 1987; Norquist & Wells, 1991). Factors that improve access to care for patients discharged from VA psychiatric units include receipt of VA compensation payments, discharge from a facility with greater resources committed to medical-surgical care, and prompt mental health follow-up (Druss & Rosenheck, 1997). Patient navigators have also served as an effective mechanism to assist patients with maneuvering through the complicated health care system. Assuming access is achieved, quality-of-care assessments often take the Donabedian approach focusing on structure, process, and outcome (Donabedian, 1980; Donabedian, 1982; Donabedian, 1984; Donabedian, 1986). Structural measures address whether the facility, the equipment, and the staff are adequate. Process measures focus on the various steps involved in delivering care and ways to improve efficiency. Outcomes are the effects on the patients of having received health care services and are measured by changes in health status, complication rates, mortality rates, and length of stay.

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Assessments of VA health care quality based on patient satisfaction have found mixed results, particularly when gender comparisons are made (Hoff, Rosenheck, Meterko, & Wilson, 1999; Kressin et al., 1999; Rothman, 1984; Turpin, Darcy, Weaver, & Kruse, 1992). Attempting to clarify the question somewhat, a recent nationwide survey of veterans who use VA health care services found that male and female veterans reported similar overall quality of VA outpatient care services, after controlling for patient attributes (Wright, Craig, Campbell, Schaefer, & Humble, 2006). For inpatient care services, males were significantly more satisfied than females on the dimensions of transitions, physical comfort, involvement of family and friends, courtesy, coordination, and access. However, this study did not incorporate organizational characteristics known to affect patient satisfaction into their models. Complicating our ability to analyze barriers to and quality of care is the use by many patients of multiple systems of care, such as veterans using both VA and non-VA systems of care. In a study of 10 surgical procedures commonly performed in the elderly, Fleming, Fisher, Chang, Bubolz, and Malenka (1992) showed that VA patients in the New England region and in New York state receive from 17.6 to 37.4 percent of their hospital care outside the VA system. The dual use problem was a limitation documented by Virgo, Price, Spitznagel, and Ji (1999) in a recent study which demonstrated that drug use, depression, and psychiatric care seeking were important predictors of VA health services utilization over the two-decade period after discharge from military service in Vietnam. All predictors were selected from data collected either at discharge from military service in 1971, one year after discharge, or three years after discharge. It was shown that Vietnam veterans with substance use problems prior to or immediately after the Vietnam War utilized VA health care services more intensively during the next two decades than Vietnam veterans without these behaviors. With only partial knowledge of all the health services utilized by a given patient, it is difficult to determine whether access to care is compromised and barriers to care exist. The current on-going study extends previous work through the use of both quantitative and qualitative approaches to collecting self-reported VA and non-VA health services utilization data. This multi-pronged approach increases the depth and breadth of data available from a purely quantitative approach alone and improves generalizability by directly addressing the potential problem of dual use/eligibility. Interim results are provided using data available to date.

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METHODS Project History The current study is a continuation and addition to the Vietnam Drug User Return Study conducted in 1971–1974 (Helzer, Robins, Wish, & Hesselbrock, 1979; Robins, Davis, & Goodwin, 1974a; Nace & Meyers, 1974; Robins, Helzer, & Davis, 1975; Robins, Davis, & Nurco, 1974b). The Vietnam Drug User Return Study was conducted at the request of the White House Special Action Office for Drug Abuse Prevention because of concern about the large number of returning Vietnam veterans addicted to narcotics while in Vietnam. The first wave of face-to-face interviews was conducted in 1972, one year after the veterans’ departure from Vietnam. The second wave was completed in 1974. The Vietnam Drug User Return Study used three subsamples. First, a probability sample of veterans was selected from the Army’s active duty roster consisting of all 13,760 September 1971 returnees (N ¼ 470). The U.S. Surgeon General identified veterans whose urine was drug positive for opiates, amphetamines, or barbiturates at Date Eligible for Return from Overseas (DEROS). These soldiers were estimated to comprise 10.5 percent of the entire veteran population coming home during this time. ‘‘Drug positives’’ were purposely over sampled (N ¼ 512) to permit a detailed study of the adult course of substance abuse among veterans. ‘‘Drug positives’’ comprised over 50 percent of the final study sample. Finally, the 1974 survey added a comparison sample of non-veterans originally selected from the Selective Service system list, who did not go to Vietnam, and were matched to the general sample with respect to draft eligibility, size and location of pre-draft residential area, age, and education (N ¼ 284). The total sample size was 1,227. Variables of interest included demographics, family history, childhood problems, war experience, depressive syndrome, as well as detailed information on use and abuse of six classes of psychoactive drugs, alcohol, and nicotine. In 1996–1997, a 25-year follow-up study was conducted to assess longterm outcomes of respondents from the Vietnam Drug User Return Study (Price, Risk, Murray, Virgo, & Spitznagel, 2001a; Price, Risk, & Spitznagel, 2001b). Because of two decades of hiatus since the last contact for the 1974 survey, the Vietnam Era Study (VES) included four stages: phase I-feasibility plan, phase II-implementation, phase III-main epidemiological study, and phase IV-current study consisting of a subsample of 494 cases. Of the

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1,024 respondents interviewed from the Vietnam Drug User Return Study, 841 were re-interviewed (129 had died, 74 were unable to be located) for VES-III. VES-III collected data on demographics, family history, significant life events, military experience, post-traumatic stress disorder, social networks, substance use, antisocial personality traits, depression, physical health, and health services utilization (Price, Risk, Haden, Lewis, & Spitznagel, 2004; Virgo, Risk, Spitznagel, & Price, 2004). In addition, VES-III implemented a suicide intervention protocol due to a suicide event that occurred a few weeks after one respondent’s interview. VES-IV is based on a longitudinal sample of 494 Vietnam veterans who participated in the VES-III and were subsequently identified as informative to examine risk and protective factors associated with suicide and other suicidal behaviors (306 at low risk and 188 at high risk). The goal was to interview 71 percent (350) of this subsample considering mortality rates and the nature of the fieldwork. These 350 are the subject of the current study. An extensive interview integrated qualitative and quantitative data collection focusing on significant life events, post-traumatic stress disorder, suicidal ideation/attempts, worst negative events, barriers to and facilitators of care, and quality of care (Price et al. in press). The focus of this report is an analysis of barriers to care as well as an analysis of patient assessments of quality of care and the long-term effects of the care-seeking experience.

Suicidality Risk Level For the purpose of fieldwork efficiency, VES-III respondents were stratified by risk of suicide based on a predictive scale constructed from self-reported suicidal behavior, past and current psychopathology, as well as family history of psychopathology. Data on respondents who had previous suicidal ideation or attempts were analyzed using logistic regression techniques in SAS. A scale predictive of suicidal ideation was created based on these results. Originally, the highest-risk group was to include 168 participants (Price et al. in press). However, a preliminary search of VA death records found a larger than expected number of deceased among the highest-risk group. Thus, the high-risk threshold was expanded, permitting the addition of 20 more cases, totaling 188 (168 alive; 20 deceased). Lowest-risk sample members were selected from the bottom of the predictive scale and the sample size was set at 246. Later, 60 new low-risk cases were added to the sample from the lowest two points of the predictive scale to compensate for refusals and decreased cases. This yielded a total tracing sample of 494.

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Interview Procedures Place of residence and telephone contact information were obtained from the contacts made during the VES-III fieldwork, as well as from the original interviews completed in 1972 and 1974. Additional tracing information collected from such sources as TransUnion, PhoneDisc, and various Internet directories were used to update residence and contact information. Under the supervision of the Washington University Study Coordinator, the VES cohort members were contacted by telephone to confirm identities, addresses, and telephone contact numbers. At first contact, permission to mail explanatory study materials was obtained, the study’s toll-free telephone number was provided to the respondent, and interviews were scheduled for those willing to participate. Qualified field staff trained in suicide prevention and intervention and other referral services conducted postinterview quality assurance and suicide risk assessment follow-up calls. A clinically trained MSW-level interviewer traveled to the respondent’s home or nearby location chosen by the respondent for an in-person interview. Interviews usually lasted from three to five hours and respondents were provided with money orders for $60–90 (depending on the interview length). In the health care utilization component of the interview, quantitative data were collected regarding respondents’ insurance status, chronic health care conditions, whether care was sought, for those who attempted to obtain care, the basis on which care was received (inpatient vs. outpatient), category of the health care facility where care was received (VA or military hospital, non-profit clinic, private hospital or doctor’s office, universityconnected facility), and dates of health service provision. Qualitative data were also collected using an anthropologic episode-based open-ended question approach (Kleinman, 1980; Ryan & Weisner, 1998). Such data included the respondents’ evaluation (positive or negative) of care received or reasons why no health care was sought. The effect of the health care experience on the future health-seeking patterns of respondents was also addressed. For example, as a result of the experience, the patient may now be more willing to see his doctor on a regular basis. The goal of the open-ended questions was to acquire detailed descriptions of patients’ experiences in their own words. We were particularly interested in understanding patient-based and system-based barriers to care for physical, psychiatric, and substance use conditions. Although it is helpful to identify the chronic health conditions respondents were experiencing and the types of health care facilities they were using via closed-ended questions, without qualitative data it would have been impossible to get a detailed

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picture of the thoughts and feelings of patients regarding the quality of care that they received in these facilities. Perhaps more importantly, the specific factors that kept others from using, or in some instances even attempting to seek, health services would have been missed. In depth information obtained with the open-ended qualitative questions also provided a means to determine if respondents appropriately interpreted the initial quantitative feeder question. For example, if a respondent said he had no outpatient care in the last six months for his hypertension, the standard open-ended follow-up questions would attempt to elicit reasons why no care was received. If the patient responded that his hypertension was controlled with medication and in fact his primary care doctor checked his blood pressure and renewed his prescription for anti-hypertensive medications three months ago, the response to use of outpatient services would be recoded as a ‘‘yes.’’ Verbatim transcriptions of the interviews were entered into the text management software Atlas.ti v5.0 (Scientific Software Development, 2006). The program facilitates the management and exploration of large amounts of text. Users can identify themes and relationships, build and apply multi-level codebooks, conduct complex searches, and export data to statistical programs for further analysis.

Code Book To help identify themes found in the transcribed interviews, a hierarchical codebook was developed (available from the first author). Upper-level (family) codes included use and non-use of inpatient care and use and nonuse of outpatient care for physical conditions, psychiatric conditions, and drug use. Under each upper-level code, further subcodes were defined (Bernard, 1996; Billings & Moos, 1982; Lazarus, 1980; Taylor & Aspinwall, 1996). These included reasons for respondents not seeking inpatient or outpatient treatment for health concerns (e.g. doesn’t think doctors can do anything for condition, doesn’t trust doctors), positive and negative factors effecting quality of care (e.g. nurses were attentive, doctors did not listen), and the effect of the experience (e.g. took preventive measures, will change doctors). Each code and subcode was defined by a short description, detailed description, inclusion criteria, exclusion criteria, typical exemplars, atypical exemplars, close-but-no exemplars, and key words. After the codebook was completed, coders read through the text and marked passages that pertained to each code.

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Data Analysis After coding the transcripts in Atlas.ti, the informant-by-theme data were exported to the Statistical Package for the Social Sciences (SPSS) for analysis creating a 195-case-by-481-variable matrix (one case per respondent and one variable per family code or subcode). All entries for both family codes and subcodes were coded in a dichotomous fashion as present (1) or absent (0). Chi-square analysis and Fisher’s exact test were used as appropriate to compare dichotomous measures of health services utilization of respondents at highest risk for suicidal behavior to respondents at lowest risk for suicidal behavior. Dichotomous measures of barriers to care were compared by suicide risk category. Similar analyses were conducted for respondent evaluations of quality of care for those who used health care services. The impact on access to care of patient insurance status, number of reported conditions (physical, psychiatric, drug use), and type of facility where treated was also examined.

RESULTS The VES-IV tracing sample consisted of 494 possible respondents. This number was reduced by a death rate of 7.7 percent (N ¼ 38) and a loss to follow-up rate of 7.5 percent (N ¼ 37) to date, leaving 419 respondents for tracing. A refusal rate of 12.6 percent (N ¼ 62) further reduced the follow-up sample. In addition, 1.4 percent (N ¼ 7) was not available to the study due to incarceration (N ¼ 1) or medical or physical hardship (N ¼ 6). A total of 350 (71%) interviews were completed to meet the study goal in October 2004. Of these 350 interviews, 257 (73%) have been transcribed and coded thus far. Of the 257 interviews that have been coded, 62 (24%) of the respondents had no health care concerns (51) or the interviewer did not use the required prompts to inquire about self-reported health concerns (11) and therefore no qualitative data were obtained. Thus, 195 cases are currently evaluable. Overall 42.1 percent of the 195 respondents used inpatient care for at least one condition since their last interview in 1996/1997 and 68.7 percent used outpatient care for at least one condition in the six months preceding the VES-IV interview (Table 1). The average elapsed time between the VES-III and VES-IV interviews was 6.3 years (range: 4.9–7.7 years). For inpatient care, VA (17.9%) and state/county/city (14.9%) were the most frequent health care facility types. For outpatient care, non-VA physician’s office (32.3%) and VA physician’s office (21.5%) were the most frequently

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Table 1.

KATHERINE S. VIRGO ET AL.

Health Care Utilization Characteristics and Insurance Status of Respondents (N ¼ 195)a.

Independent Variables

Percent

Physical condition Average number of physical conditions High blood pressure Back condition Diabetes Hepatitis C Arthritis Heart attack Chronic lung disease Ulcer Asthma Hepatitis – unknown Cancer (excluding skin cancer) Colon polyps Chronic headaches Chronic pain Epilepsy/Seizure Hepatitis B Joint injury Kidney stones Cirrhosis Diverticulitis Prostate condition Sleep disorder Stroke

92.3 (2.29, 1.54) 51.3 19.5 16.4 14.9 12.3 9.7 9.2 8.2 5.6 5.1 4.6 3.6 3.1 3.1 2.6 2.6 2.6 2.6 2.1 2.1 2.1 2.1 2.1

Psychiatric condition Average number of psychiatric conditionsb Depression Post-traumatic stress disorder/anxiety Bipolar disorder Schizophrenia Obsessive compulsive disorder Incompetence Panic attack Suicidal ideation

42.1 (1.65, 0.67) 33.3 29.7 2.1 1.5 1.0 0.5 0.5 0.5

Substance use Average number of substance use conditionsc Alcohol use Drug use

24.6 (1.25, 0.44) 16.4 14.4

Insurance status Average number of insurance types reported

94.9 (1.93, 1.07)

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Table 1. (Continued ) Independent Variables Insurance through own or family members’ work VA HMO or PPO Medicare Medicare that covers Doctors’ bills Other CHAMPUS/CHAMPUSVA Medicaid Bought plan from agent

Percent 55.4 52.8 40.5 14.4 10.8 9.2 7.7 7.2 4.6

Inpatient facility types Average number of times usedd VA State/County/City For-profit/Non-university Non-profit/Church operated University-connected Military hospital Other

42.1 (1.20, 0.43) 17.9 14.9 7.7 3.6 2.6 2.1 1.5

Outpatient facility types Average number of times usede Dr.’s office/Non-VA other Dr.’s office/VA hospital Dr.’s office/VA other Dr.’s office/Non-VA hospital Other Emergency room

68.7 (1.39, 0.66) 32.3 21.5 12.3 11.3 3.6 3.1

a

Values in parentheses represent means and standard deviations. All other values represent percents. b The mean and standard deviation for the number of psychiatric conditions is based on the 82 respondents who reported the presence of a psychiatric condition. c The mean and standard deviation for the number of substance use conditions is based on the 48 respondents who reported a substance use condition. d The mean and standard deviation for number of times inpatient facilities were used is based on the 82 respondents who used inpatient care. e The mean and standard deviation for the number of times outpatient facilities were used is based on the 134 respondents who used outpatient care.

reported types of facilities used. Only 5 percent of the evaluable cases had no insurance. The average number of insurance types was 1.9. The most common forms of insurance were health benefits through work (55.4%), VA (52.8%), and HMO/PPO (40.5%).

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Over 90 percent of respondents reported at least one physical health condition with the most frequent being high blood pressure (51.3%), back condition (19.5%), diabetes (16.4%), hepatitis C (14.9%), and arthritis (12.3%). Patients reported an average of two physical conditions. Inpatient health care was used by 34.4 percent of respondents for at least one physical condition and 64.1 percent used outpatient health care for at least one physical condition. Approximately 42 percent of respondents reported psychiatric conditions with depression (33.3%) and post-traumatic stress disorder/anxiety (29.7%) being the most frequently stated psychiatric conditions. For a psychiatric condition, inpatient care was received by 11.3 percent of respondents and 24.1 percent received outpatient care. Nearly a quarter of the sample (24.6%) reported substance use problems excluding cigarette smoking. For substance use problems, 10.8 percent of respondents sought inpatient care and 8.7 percent used outpatient care.

Patient-Based Barriers to Care Patient-based barriers to care were reported by 39 percent (N ¼ 76) of respondents. Those with psychiatric or substance use conditions were significantly more likely (po0.001 and po0.01, respectively) than those without these conditions to have experienced patient-based barriers to care. Patients with physical conditions were less likely (37.8%) than those without physical conditions (53.3%) to report patient-based barriers to care, though this relationship was not significant. Respondents had many reasons for not wanting or seeking care for physical, psychiatric, or substance use conditions (Table 2). Many respondents had a strong belief in selfhealing: ‘‘I’m not drinking in excess a lot. I want it to end but I can be the only one to do that. It ain’t going to take hospitalization, it’ll have to come from inside.’’

or, ‘‘I’ve always been a self-healer kind, you know. Lots of times I should have had stitches and never went and got them. That’s just me, you know, I’ve always been that way. Independent, I guess.’’

Others hoped their conditions would resolve without treatment: ‘‘I’ve been through these [headaches] before and they go away eventually if you can just stand it for that long. The longest I’ve ever had them is 30 days. If you can just get past that, then you know you’ll be all right.’’

Access, Quality and Satisfaction with Care

Table 2.

31

Barriers to, Quality of, and Long-Term Effects of Health Care Utilization (N ¼ 195)a.

Independent Variables Patient-based barriers to care Didn’t want care Self treats with drugs or alcohol Time-inconvenient Self treats with alternative care methods Doesn’t like/trust doctors System-based barriers to care Lacking/Limited insurance Doctors could do nothing Bad experience in health care situation

Percent

15.9 6.7 5.1 5.1 5.1 9.7 6.7 6.7

Positive comments regarding quality of care Provider generally good, positive experience Professional/Efficient/Thorough Good communication/relationship Provider seemed to care/treated patient well Treatment was effective Care was outstanding/excellent Provider prescribes tolerable medications Sees same provider every time Provider is attentive to needs/responsive Answered all questions

67.7 22.6 21.0 18.5 13.3 11.3 10.3 7.2 6.2 5.1

Negative comments regarding quality of care Care not effective/inadequate Insurance/Financial problems Long waiting time Does not like doctor/staff at facility Medications/Therapies not needed/couldn’t handle Generally poor/negative experience Worst negative event

11.3 9.2 8.2 6.7 6.7 6.2 5.1

Positive effects of the care-seeking experience Comfortable going for care Continues outpatient schedule Took preventive measures Reduced/Stopped substance use

53.3 28.2 7.7 5.6

Negative effects of the care-seeking experience Complaint/Dissatisfaction but no change in provider Changed providers

10.8 7.2

a

Codes with a frequency of 5% or higher are listed. Some respondents reported more than one code in each category, therefore percentages may total to more than 100%.

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KATHERINE S. VIRGO ET AL.

The hassle of seeking care was also a barrier: ‘‘Any drug use to me is serious enough to seek help, but I just don’t want to be botheredyeven outpatient. I just don’t want to be bothered. Just too much.’’

Still others were delaying treatment for as long as possible: ‘‘Yeah, he [the doctor] suggested for me to get the operation. He said eventually I’m gonna have to have it. It’s gonna get so bad that I can’t stand it. Well, it’s gotta be where I can hardly walkyI can’t bear to function.’’

Some had concerns about intrusion upon their privacy: ‘‘I could have gotten help, but then they would have invaded my privacy. They could come in my home. They could tell my employersythat they didn’t like me, to harass me. I just couldn’t stand that kind of invasion of my privacy.’’

Not surprisingly, the most frequent patient-based barrier was did not want any help (15.9%) as this respondent shared with an interviewer: ‘‘I never wanted help. I enjoy doing heroin. I know it’s not good for me, but it feels good. There have been times when I thought about it [getting help], but haven’t because I’m really not ready to stop. Even though I know I need to. And then I have this fear that I’ve been doing it for so long that if I stop, I think that I might get seriously sick.’’

System-Based Barriers to Care System-based barriers also restricted or limited access to care with 23.1 percent (N ¼ 45) of respondents reporting this type of barrier. As was the case for patient-based barriers to care, those with psychiatric or substance use conditions were significantly more likely (po0.05 and po0.001, respectively) to have experienced system-based barriers to care. Examples include being denied access, having a prior negative experience in a health care situation, believing doctors could do nothing for the condition, feeling that the condition will be ignored by the VA, and having limited or no insurance (Table 2). One respondent who felt his condition would be ignored said: I have a friend who went out [to the VA] and they just told him that he had gas. His wife took him back home and he was hurting, so she took him back up there [to the VA] again. They kept him again and said that he just had gas. She started to take him back home and he said, ‘‘I think I’m going to throw up, I’ve got to get out of this car.’’ She pulled over and when he got out of the car he fell down a bank. Luckily, right down the road from where he fell down the bank was a fire department. She went to the fire department and they ran down there and got him. They called our ambulance at the mission, brought him back, and he had a major heart attack. They called VA and told them ‘‘Did you just see this man?’’ and they said, ‘‘Yes.’’ His wife was literally going insane. The VA said to send

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33

him right back out there. This doctor said, ‘‘No you saw him twice and you didn’t diagnose him. We’ve got him here and we’re going to keep him. We’ll send you the bill. That makes me wonder whether it would do me any good to go out [to the VA].’’

Suicidal Risk As expected, respondents at highest risk for suicide were significantly more likely to report psychiatric conditions (69.8%) and substance use conditions (41.9%) than those at lowest risk for suicide (20.2% and 11.0%, respectively (po0.001)). The highest-risk group also reported more patient-based (58.1% highest risk vs. 23.9% lowest risk) and system-based (31.4% highest risk vs. 16.5% lowest risk) barriers to care (po0.05). This suggests that those who were considered most at risk for suicidality may be less likely to receive the care they need, assuming that perceived barriers are in fact real barriers. Some barriers perceived by patients with psychiatric or substance use conditions may be a symptom of the underlying psychiatric condition or substance use. Also interesting is that among patients who used health services, those at highest risk of suicide were more likely to be effected negatively by the experience (34.9% highest risk vs. 20.2% lowest risk; po0.05). Thus, in addition to those at highest risk of suicide having less access to care, those who do seek help are more likely to perceive the experience negatively.

Quality of Care Of those who utilized health care services, 73.3 percent (N ¼ 143) had both positive and negative health care assessments of their experiences depending on the condition that was being treated (Table 2). An additional 1.0 percent (N ¼ 2) had only positive experiences and 2.6 percent (N ¼ 5) had only negative experiences. Positive assessments of health care quality ranged from very short positive remarks such as, ‘‘They did a good job,’’ or ‘‘Was a good doctor that did my hip surgery. I highly recommend him,’’ to more elaborate statements: ‘‘I love going to see her. She’s probably the person I can be most open with other than you [interviewer] today. I really like her. I think the world of her. She’s a fine lady. She’s done a good job for me,’’

or, ‘‘Well, I knew God was in the plan. I knew that he would make it [the surgery] good. I knew that man was just an instrument used by God’s hand. I really liked this doctor. He was a good doctor. He explained things really well and he took his time. He didn’t rush.

34

KATHERINE S. VIRGO ET AL. He made sure that I was satisfied with everything he was saying. And made sure he answered all my questions. And he knew the Lord. That always helps,’’

or, ‘‘The VA has done well for me. I figure every time I’ve been in there, they have been saving my life. Because every time I went in there, I would just be depressed or suicidal. The therapy programs they have there are very helpful.’’

Negative assessments of health care quality included statements that often suggested a lack of understanding on the part of the patient regarding the process or what to do if a given treatment was ineffective (Table 2). Perhaps better explanation by the hospital staff may have helped. For example: ‘‘You get where you can’t breathe and I went down to see the doctor. And they looked at it and said I had pneumonia. This was on a Friday. And I went to the emergency room and they took me in, put me on the bed, and said, since it’s a Friday, there’s no use putting you in the hospital. However you feel, you’d feel about the same if I put you in the hospital. Well he gave me those pills and that didn’t help a bit,’’ or ‘‘They sent me to the emergency room, and then they called the ambulance and had the ambulance take me to the VA hospital. They admitted me. Said I had a cerebral hemorrhage. But the only thing that the doctor noticed here at home was that my blood pressure was up.’’ or ‘‘It is frustrating because I felt I wasted my time, the doctor’s time, and the nurse’s time. Nothing showed up. Before that I had been going for MRIs every six months. Nothing changes I guessyvery frustrating. Not seeing any improvement, not seeing anything worse, just staying the same.’’

Effects of the Experience Perceptions of the quality of care received contributed to 21.5 percent (N ¼ 42) of respondents experiencing both positive and negative long-term effects of the health care encounter depending on the condition being treated (Table 2). An additional 43.6 percent (N ¼ 85) had only positive effects of their health care encounters and 5.1 percent (N ¼ 10) had only negative effects of their encounters. Thus, a total of 65.1 percent (N ¼ 127) had a positive effect from at least one encounter, while a total of 26.7 percent (N ¼ 143) had a negative effect from at least one encounter. Positive effects of the experience included, ‘‘It helped me realize that I have to face what’s coming at me. They put me back on Prozac. Sitting around talking about it [depression] won’t help me face it,’’

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35

or, ‘‘I have a lot of respect for the people who run that program [28-day inpatient substance use program] out there. But you know, what kind of holds me back is shame. I know that it’s the same people that are running that program again. I’m ashamed to go back to them again and say that I have a problem.’’

Negative effects of the experience often included statements regarding seeking alternative physicians or forms of care (Table 2). Examples are: ‘‘I left the doctor after about two months, maybe about a month. I was still in pain and he said he couldn’t understand why, and he said it should be healed up by now, so I went to a different doctor,’’

or, ‘‘It was a private doctor’s office, like a pain clinic that my doctor referred me to. The epidural did not work [for back pain]. No relief. If my insurance will cover it, I may try acupuncture. A customer of mine said you have about four choices. You can live with it, you can have surgery on your back, you can try a chiropractor, or you can try acupuncture.’’

Cost of care was also a problem: ‘‘They [inpatient facility] sent me a bill for $9,000.00. I don’t go to them no more. I go to the VA hospital.’’

DISCUSSION Major depression and drug and alcohol use and dependence combined are the leading cause of death and disability in American women and the second highest in men. Many mental and/or substance use problems co-occur with physical illnesses and have a large-scale effect on individuals and society as a whole. As with general health care, for behavioral health care, there is a discrepancy between the level and type of care known to be effective and the care that is actually delivered (Institute of Medicine Committee on Crossing the Quality Chasm, 2006). Barriers to receiving high-quality health care can be encountered at all levels within the health care system. Considerable attention is now being given to these barriers and discrepancies in an attempt to improve the care and services provided to those in need. Research and technology continues to improve techniques and treatments, however, delays in or total lack of implementation of these improvements into mainstream health care facilities both contribute to the inadequate treatment often received by patients.

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The goals of the study were to measure the extent of the access to care problem for both general as well as behavioral health care and identify specific barriers to care seeking for self-reported physical, psychiatric, and drug use problems. The second objective was to analyze patient-perceived quality of care for individuals who obtained access to health care and to identify how the care-seeking experience effected future care seeking. The study has successfully applied a combined quantitative/qualitative approach to data collection and analysis. Using this rich data source, more in-depth analysis is planned once the study reaches completion. As expected, those at highest risk for suicide were significantly more likely to report psychiatric conditions and substance use conditions than those at lowest risk of suicide, as well as more patient- and system-based barriers to care. Particularly interesting was that those at highest risk of suicide were also more likely to perceive the experience negatively. Comments regarding quality of care often suggested problems with process of care and need for patient education. Also identified were revealing quotes regarding long-term effects of the health-care-seeking experience. A limitation of this study is that it is not representative of the general population of Vietnam veterans. Drug-positive veterans at the time of discharge from the service were over sampled. Also no women, commissioned officers, or non-Army military personnel were included and veterans at the September 1971 discharge represent a later cohort of veterans, which probably over represents lower socioeconomic status. Another limitation is that patient self-report was used to measure inpatient and outpatient utilization of health services. However, the limitations inherent in using patient self-report are minimized in the current study because standard recall time periods were approximated. For inpatient use, which for most people is relatively infrequent, the previous five years is the standard recall period used. For our study, the duration since the last interview (average 6.3 years) adequately approximates this standard. As outpatient use is generally much more frequent, the previous six months was the recall period. However, there is always some chance of memory error, especially for individuals with behavioral health conditions. Also occasional interviewer failure to ask appropriate follow-up questions regarding reported health concerns was an additional limitation. This tended to occur more often with very early cases when the interviewers were still new to the process and also for very long interviews. Thus, the impact of this limitation is expected to be slight. Another limitation is that approximately 100 interviews still need to be transcribed and coded, thus the results are not final. These last interviews most likely represent those respondents

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who were harder to locate and make include more homeless individuals with greater access to care problems. A comparison of these last cases with the earlier cases should prove insightful. Nonetheless, we expect to continue observing the major trends documented in this report. In summary, the current on-going study illuminated the extent and sources of both patientand system-based barriers to care so prevalent among Vietnam veterans at varying levels of suicidal risk. Education to improve symptom recognition and reduce the stigma associated with psychiatric illness and substance abuse may be better ways to improve psychiatric care utilization than attempts to improve the efficiency of health care systems.

ACKNOWLEDGMENTS The authors acknowledge the National Institute of Drug Abuse and National Institute of Mental Health (R01DA09281, R01MH060961) for their financial support.

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DISPARITIES IN OUTCOMES OF ACUTE MYOCARDIAL INFARCTION ACROSS HEALTH INSURANCE STATUSES Jay J. Shen, Elmer L. Washington, Ralph Bell, Kyusuk Chung and Donna Gellatly ABSTRACT The number of uninsured has increased during recent years. This study explores underlying factors associated with the insurance-status disparities in hospital care by examining 80,730 acute myocardial infarction discharges in the National Inpatient Sample. Compared to patients having private insurance, Medicaid patients’ higher mortality risk related to severity of illness while the higher mortality of uninsured patients related to interactive effects between insurance status and hospital characteristics. Primary care strategies are likely to improve the hospital care for Medicaid patients while ensuring access to high quality care for patients with limited financial means can improve outcomes for uninsured patients.

More and more Americans become uninsured during the last several years. Since the 1990s, the number of uninsured increased about a million a year. Access, Quality and Satisfaction with Care: Concerns of Patients, Providers and Insurers Research in the Sociology of Health Care, Volume 24, 41–60 Copyright r 2007 by Elsevier Ltd. All rights of reproduction in any form reserved ISSN: 0275-4959/doi:10.1016/S0275-4959(06)24003-1

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The percentage of uninsured non-elderly Americans has grown steadily from 39.6 millions in 2000 to 46.5 millions in 2004 (Kaiser Commission on Medicaid and the Uninsured, 2005). If the number of underinsured is included, a total of 61 millions adults ages 19 to 64 are either uninsured or underinsured (Schoen, Doty, Collins, & Holmgren, 2005). As a result, lack of health insurance coverage was the top health policy story of 2005 based on an on-line survey conducted by the Commonwealth Fund and the Health Affairs journal (Commonwealth Fund, 2005). Health insurance coverage remains an important enabling factor across subgroups of the population. Unfavorable health insurance status implies vulnerability in using health care (Aday, Begley, Lairson, & Slater, 1998; Shi, 2001). Health insurance status, a frequently used socioeconomic status indicator, reflects the degree of financial and social barriers preventing access to health services and good outcomes (Altman, Reinhardt, & Shields, 1998; Berk & Schur, 1998; Mueller, Patil, & Boilesen, 1998; Schoen & DesRoches, 2000; Williams & Collins, 1995). Disparities in hospital care, including the care for acute myocardial infarction (AMI), across insurance subgroups have been widely documented. Studies have reported that, compared with those with private insurance, Medicaid patients are more likely to go to teaching hospitals while uninsured patients are more likely to go to rural hospitals (Gaskin, 1998; Gaskin, Hadley, & Freeman, 2001; Reuter & Gaskin, 1998; Wyatt et al., 1997). Both Medicaid and uninsured patients receive fewer clinical procedures (Blustein, Arons, & Shea, 1995; Canto et al., 2000; Haas & Goldman, 1994; Leape, Hilborne, Bell, Kamberg, & Brook, 1999; Sada et al., 1998; Shen, Wan, & Perlin, 2001; Wenneker, Weissman, & Epstein, 1990; Young & Cohen, 1992), and Medicaid patients tend to stay in hospital longer while uninsured patients tend to stay shorter (Bradbury, Golec, & Steen, 2001; Canto et al., 2000; Haas & Goldman, 1994; Hadley, Steinberg, & Feder, 1991; Joyce et al., 1999). Moreover, while only a few studies have not detected significant disparities in outcomes (Canto et al., 2002), most studies have found that Medicaid or uninsured patients experience poorer outcomes and quality of care than other patients (Bradbury et al., 2001; Canto et al., 2000; Haas & Goldman, 1994; Roetzheim et al., 1999; Romano, Luft, Rainwater, & Zach, 1997; Shen et al., 2001). Prior studies, however, have focused less on identifying underlying factors resulting in disparities in hospital care across insurance subgroups. Although health insurance status is correlated with factors such as gender, race, education, income, and severity of illness (Shi, 2001; Williams & Collins, 1995), limited knowledge has existed with regard to how the health insurance

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status interacts with these factors, as well as with treatment environments, to affect outcomes of hospital care (Canto et al., 2002; Haywood et al., 1993). Although studies have compared use of clinical procedures, resource consumption, and outcomes of hospital care for AMI across insurance subgroups or socio-demographic subgroups (Canto et al., 2000; Philbin & DeSalvo, 1998), few seemed to examine possible relationships among these dimensions. Although other studies have found associations of insurance subgroups with hospital characteristics (Gaskin et al., 2001; Reuter & Gaskin, 1998; Wyatt et al., 1997), they have not yet addressed whether or how the insurance status interacts with the hospital characteristics to affect mortality. Similarly, although studies have found insurance related disparities in the use of clinical procedures (Bradbury et al., 2001; Jha, Shlipak, Hosmer, Frances, & Browner, 2001; Philbin & DeSalvo 1998; Shen et al., 2001), little exploration has been done on how frequency of clinical procedures and insurance status interact to effect outcomes. The elimination of disparities relating to health insurance status is of critical importance to creating a health care system that performs at a consistently high level of quality and promotes timely access to care all the time, increasingly mandated of providers by insurers and patients. The Institute of Medicine report ‘‘Crossing the Quality Chasm: A New Health System for the 21st Century’’ points out that inconsistencies in quality, efficiency, and access to care abound, in part manifested by disparities (Institute of Medicine, 2001). Research designed to create a more accurate understanding of the underlying causes of disparities and ultimately contribute to their elimination is a major component to improving the overall performance of the health care system. With varying contributors to health disparities showing different patterns across different insurance statuses, improving the health care system to maximize responsiveness to the needs of different groups is a step toward a more patient centered approach described in the Institute of Medicine report (Institute of Medicine, 2001). Furthermore, disparities related to health insurance are associated with modifiable factors, such health care system, access to care, lifestyle choices largely influenced by socioeconomic status. Given that Medicaid and uninsured patients are at a higher risk of having adverse outcomes and that analyzes on interaction of insurance status with other relevant underlying factors have been limited, we sought to explore multiple factors related to dimensions of hospital care primarily reflective of these underlying factors. Policy informed by such research can play a key role in eliminating disparities in health care in the future and ensuring a consistent level of high quality care and timely access to care for all patients.

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JAY J. SHEN ET AL.

METHOD Data We abstracted non-Medicare AMI discharges from the 1998 and the 1999 National Inpatient Sample (NIS), maintained by Hospital Cost and Utilization Project (HCUP). We excluded Medicare patients due to Medicare’s universal coverage for people within the special age group (Z65 years old). Details about the disease selection and data abstraction were discussed elsewhere (Health Care Financing Administration 2000; Shen 2002). Our final sample contained a total of 80,730 AMI discharges.

Severity of Illness and Risk Adjustment As literature suggests that researchers working with large administrative databases shall use multivariate analysis to derive their own comorbidity weights, we obtained our AMI specific Charlson comorbidity index based on the NIS data (Charlson, Pompei, Ales, & MacKenziek, 1987; Deyo, Cherkin, & Clol, 1992; Ghali, Hall, Rosen, Ash, & Moskowitz, 1996; Romano, Roos, & Jollis, 1993). First, we identified a total of 36 AMI relevant clinical conditions by incorporating results of several studies by Romano et al. (1997) and by Elixhauser, Steiner, Harris, & Coffey (1998). Then, based on the 1998 and 1999 NIS data, we retained 29 conditions from the 36 that were statistically significant in predicting the mortality (Deyo et al., 1992; Elixhauser et al., 1998). These 29 conditions were also validated by using the 1995–1997 NIS data. Third, we conducted the stepwise multiple logistic regression using the 29 comorbidities as independent variables and retained comorbidities with po0.10 in the model. Fourth, we converted the odds ratio (OR) of the remaining comorbidities to weights as follows: an OR of o1.2 is discarded, an OR of 1.2–1.49 received a weight of 1, an OR of 1.5–2.49 received a weight of 2, and so forth. Twenty four of the 29 conditions whose OR was equal or greater than 1.2 were used to assign the weight. They were acute and unspecified renal failure, aspiration pneumonia, cardiac arrhythmias, catastrophic sequelae of AMI, central nervous system disease, cerebrovascular disease, chronic renal failure, coagulopathy, coma, complete atrioventricular block, complicated diabetes, congestive heart failure, high-risk or secondary malignant neoplasm, fluid and electrolyte disorders, infarction sites on the anterior wall, ischemic bowel or liver, liver disease, other infarction sites, paralysis, paroxysmal ventricular tachycardia,

Disparities in Outcomes of AMI Across Health Insurance Statuses

45

pulmonary edema, seizure disorder, shock, and weight loss. Five conditions that were not used for assigning (ORo1.2) weight were depression, hypertension, obesity, peptic ulcer disease excluding bleeding, and thyroid disease. Finally, we summed all weights to obtain a comorbidity index score for each patient (Ghali et al., 1996; Romano et al., 1993). As anticipated, this AMI comorbidity index, derived from our data, predicted hospital mortality better (c-Statistic, 0.91) (Hanley & McNeil, 1982) than the AMI specific comorbidity list developed by the California Hospital Outcome Project (Romano et al., 1997) (c-Statistic, 0.84), the comprehensive comorbidity list developed by Elixhauser et al. (1998) (c-Statistic, 0.86), and the general Charlson morbidity list (Charlson et al., 1987; Deyo et al., 1992) (c-Statistic, 0.79). Measures We used three variables to measure hospital characteristics. They were hospital size, teaching hospital status, and rural hospital status (Agency for Healthcare Research and Quality, 2001). Small, non-teaching, or rural hospitals are less experienced in providing sophisticated and specialized services than their large, teaching, or urban counterparts (Birkmeyer et al., 2002; Blustein & Weitzman, 1995). The prevalence of teaching, urban, and rural hospitals also varies with geographic location with most teaching hospitals being located in metropolitan areas (Kahn et al., 1994). We did not include hospitals’ ownership characteristics because some states that participated in the HCUP did not provide hospital ownership information to the NIS, which resulted in hospitals that treated 57% of patients in our sample without ownership information. We measured hospital process by four variables, the hospital’s AMI volume, and frequency of three AMI-conjunctive specialized procedures specifically, coronary arteriography, percutaneous transluminal coronary angioplasty (PTCA), and coronary artery bypass graft (CABG) (Iezzoni, Ash, Shwartz, & Mackiernan, 1997; Shen et al., 2001). Hospital volume, expressed as the total number of AMI patients discharged per year, is often negatively associated with mortality (Birkmeyer et al., 2002; Luft, Bunke, & Enthoven, 1979). The hospitals in our data set were ranked in order of increasing total AMI volume. Low-volume hospitals were defined by the selection of a whole-number cutoff point that most closely sorted the patients at the bottom 10th percentile. High-volume hospitals were defined by the selection of a whole-number cutoff point that most closely sorted the patients at the top 10th percentile (90%) (Birkmeyer et al., 2002).

46

JAY J. SHEN ET AL.

We used in-hospital mortality as the primary clinical outcome measure because AMI has relatively high in-hospital mortality. Hospital morality has been one of the most frequently used clinical outcome measures (Rosenthal et al., 2000). Since the rates of the outcome measure was lower than 10% (4.1% of the patients died in hospital), the ORs obtained from logistic regression were similar to the relative risk (RR) (Zhang & Yu, 1998). In addition, we also examined age at death as well as resource consumption that was measured by length of stay and total charges (Rosenthal, Harper, Quinn, & Cooper, 1997). We categorized insurance status, the primary exploratory variable, as private insurance including HMO/prepaid health plans, Medicaid, and uninsured. Two dummy variables were created for Medicaid and uninsured while private insurance was used as the reference in comparison. Through multivariate analysis, we included several control variables such as the comorbidity index described earlier, age, sex, and race/ethnicity. The comorbidity index was collapsed into six levels (0 – 5, with 5 representing the highest severity) when used as a control variable for risk adjustment. We categorized race/ethnicity as non-Hispanic white, African American, Hispanic American, and other ethnic groups. African American ethnicity was often associated with Medicaid coverage due to disproportionately high rates of poverty, while Hispanic ethnicity was often associated with uninsured status (Agency for Healthcare Research and Quality, 2002). Also, race was a proxy for potential cultural characteristics of ethnic groups, as well as other unidentified socioeconomic traits (Belgrave, Wykle, & Choi, 1993; Mueller et al., 1998; Schulman, Rubenstein, Chesley, & Eisenburg, 1995; Williams & Collins, 1995). We also controlled for the median income, by zip code of patient’s residence to measure the community’s overall economic and socioecological conditions associated with health care outcomes (Claudio, Tulton, Doucette, & Landrigan, 1999; Pappas, Hadden, Kozak, & Fisher, 1997). Finally, we controlled for geographic variations by creating dummy variables for each of the states participating in the HCUP (Guadagnoli et al., 2001; Morris & Munasinghe, 1994). We conducted logistic regression to analyze the dichotomous response variable and the least square regression to analyze continuous response variables. When the dependent variable of multivariate analysis (i.e., the least square regression or the survival analysis) was continuous, age of the patient was a continuous variable. When the dependent variable (i.e., logistic regression) was dichotomous, for the purpose of expanding the age to a meaningful interval, we divided age into six age groups: younger than 40, 40–49, 50–59, 60–69, 70–79, and 80 or older.

Disparities in Outcomes of AMI Across Health Insurance Statuses

47

RESULTS Sociodemographic and Hospitalization Characteristics Table 1 compared unadjusted sociodemographic and hospitalization characteristics of Medicaid and uninsured patients with patients having private insurance. On average, both Medicaid patients (56.9 years old) and uninsured patients (54.1 years old) were younger than privately insured patients (58.1 years old). Medicaid patients had a marked higher proportion of female patients (44.7%) than that of both uninsured and privately insured patients (27.8% and 27.2%). The sex distribution of our data indicated that males under age of 65 were more likely to have AMI than females. Among the three insurance groups, Medicaid had the highest proportion of minority patients while the privately insured group had the lowest. In addition, more Medicaid patients lived in low-income areas while more privately insured patients lived in higher-income areas. Regarding both measures, proportion of minority patients and income level of residence, the uninsured group was in the mid range between that Medicaid and privately insured groups. Finally, the average comorbidity index score of all patients was 3.62, with Medicaid patients above average (5.05) and uninsured and privately insured patients below average (3.43 and 3.44). Percentages of patients admitted to hospitals of different sizes (i.e., small, median, or large) were fairly similar among the three insurance groups. There was a considerable difference in hospitalization in teaching hospitals, with the highest percentage in the Medicaid group (53.2%), the lowest percentage in the uninsured group (43.7%), and the private insurance group (47.5%) in the mid range. Finally, 12.3% of uninsured patients, 10.7% of Medicaid patients, and 10.4% of privately insured patients went to rural hospitals. Patients covered by private insurance had higher percentages of receiving all of the three specialized procedures (60.1% for arteriography, 33.4% for PTCA, and 12.2% for CABG) than that of both the Medicaid patients (51.2%, 24.5%, and 10.8%) and the uninsured patients (56.7%, 29.8%, and 9.5%). Medicaid patients stayed in the hospital much longer (6.1 days) than both the uninsured patients (4.6 days) and privately insured patients (4.7 days). Medicaid patients incurred the highest charges ($27,845) while uninsured patients incurred the lowest ($23,211). Finally, 6.7% of Medicaid patients were discharged to non-acute health care facilities while the percentages for uninsured patients and patients covered by private insurance were only 3.6% and 4.5%, respectively. The raw

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JAY J. SHEN ET AL.

Table 1.

Patients’ Sociodemographic and Hospitalization Characteristics by Insurance Statusa. All Patients (n ¼ 80,730)

Sociodemographic characteristics Age at admission, mean 57.5 (SD), year Female 23,602 Ethnicity Non-Hispanic White 64,688 African American 7,344 Hispanic 4,766 Other ethnic groups 3,932 Median income by zip code of residence r$25,000 4,782 $25,000–$34,999 25,463 $35,000–$44,999 25,084 Z$45,000 25,401 Comorbidity index, 3.62 mean (SD) Hospital Care Hospital Size Small Median Large Admission in teaching hospital Admission in rural hospital Receiving Arteriography Receiving PTCA Receiving CABG Outcome Length of stay, mean (SD), day Total charges, mean (SD), $ Discharge status equals death Age- and sex-adjusted hospital mortality, % Sex-adjusted age at death (n ¼ 3,288), year a

8,850 23,168 48,712 38,532

Medicaid (n ¼ 9,064)

Uninsured (n ¼ 8,184)

Private Insurance (n ¼ 63,482)

(11.9)

56.9 (12.5)

54.1 (11.4)

58.1 (11.8)

(29.2)

4,047 (44.7)

2,271 (27.8)

17,284 (27.2)

(80.1) (9.1) (5.9) (4.9)

5,321 1,615 1,184 944

(58.7) (17.8) (13.1) (10.4)

5,997 934 694 559

(73.3) (11.4) (8.5) (6.8)

53,370 4,795 2,888 2,429

(84.1) (7.6) (4.6) (3.8)

(5.9) (31.5) (31.1) (31.5) (7.12)

1,337 3,773 2,396 1,558 5.05

(14.8) (41.6) (26.4) (17.2) (8.25)

743 3,226 2,559 1,656 3.43

(9.1) (39.4) (31.3) (20.2) (6.95)

2,702 18,464 20,129 22,187 3.44

(4.3) (29.1) (31.7) (35.0) (6.89)

(11.0) (28.7) (60.3) (47.7)

960 2,681 5,423 4,820

(10.6) (29.6) (59.8) (53.2)

854 2,111 5,219 3,572

(10.4) (25.8) (63.8) (43.7)

7,036 18,376 38,070 30,140

(11.1) (29.0) (60.0) (47.5)

8,588 (10.6)

971 (10.7)

1,010 (12.3)

6,607 (10.4)

47,731 (59.1)

4,644 (51.2)

4,640 (56.7)

38,447 (60.1)

25,840 (32.0) 9.470 (11.7)

2,219 (24.5) 974 (10.8)

2,438 (29.8) 775 (9.5)

21,183 (33.4) 7,721 (12.2)

4.9 (4.6)

6.1 (6.1)

4.6 (4.1)

4.7 (4.3)

25,918 (28,117)

27,845 (33,109)

23,211 (21,968)

25,992 (28,021)

531 (5.9)

365 (4.5)

4.1

4.3

4.1

3.3

67.2

63.5

64.4

68.7

3,288 (4.1)

Data are expressed as number and percentage unless otherwise indicated.

2,392 (3.8)

Disparities in Outcomes of AMI Across Health Insurance Statuses

49

hospital mortality was highest among Medicaid patients (5.9%), in the mid range among uninsured patients (4.5%), and lowest among patients covered by private insurance (3.8%); whereas the age- and sex-adjusted hospital mortality for the three groups were 4.3%, 4.1%, and 3.3%, respectively. Health Insurance Status and Hospital Care Table 2 shows adjusted results from testing the hypothesized relationships between insurance status and hospital care. Compared to patients covered by private insurance, Medicaid patients were more likely to be treated in a small hospital (OR, 1.16) (the 95% confidence interval (CI) displayed in the table) or a teaching hospital (OR, 1.18), whereas uninsured patients were less likely to be admitted to a teaching hospital (OR, 0.91) but more likely to be admitted to a rural hospital (OR, 1.11). Compared to their privately insured counterparts, Medicaid patients were less likely to be treated in a high-volume hospital (OR 0.73), less likely to receive arteriography (OR 0.79) and PTCA (OR 0.81), but more likely to be treated in a low-volume hospital (OR 1.33); whereas uninsured patients were less likely to receive arteriography, PTCA, and CABG (ORs, 0.86, 0.87 and 0.87, respectively), but more likely to be treated in a low-volume hospital (OR 1.31). Medicaid patients stayed in the hospital longer and incurred higher total charges (regression coefficiencies (RCs), 0.068 and 0.051, respectively, po0.01) while uninsured patients had shorter lengths of stay (RC, 0.112, po0.01)) than the privately insured group. Factors Associated With Hospital Mortality: With and Without Interactions Table 3 compared results of the four mortality models that contained different independent variables. Model A, a generic model, only included the insurance status and sociodemographic factors as independent variables. According to Model A, Medicaid patients and uninsured patients were about 50% more likely than privately insured patients to die in the hospital (ORs, 1.59 and 1.46, respectively). Model B, another generic model that includes the comorbidity index, shows no mortality difference between Medicaid and privately insured patients (OR [CI], 1.09 [0.97–1.24]), without much change in the mortality difference between the uninsured and the privately insured patients (OR, 1.42). After adding the variables related to

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JAY J. SHEN ET AL.

Table 2. Relationships Between Insurance Status and Hospital Care (n ¼ 80,730)y. Dependent Variable

Hospital care Admission in a small hospital Admission in a teaching hospital Admission in a rural hospital Hospital AMI volume Low volume: within the bottom 10th percentile High volume: within the top 10th percentile Receiving Arteriography Receiving PTCA Receiving CABG Outcomez Length of stay, parameter estimate, SEy Total charges, parameter estimate, SE, adjusted R-squareJ Discharged to SNF or other health facility

Medicaid

Uninsured

OR

95% CI for OR

1.16

1.07–1.26

1.08

1.00–1.18

0.68

1.18

1.11–1.24

0.91

0.86–0.96

0.72

1.01

0.93–1.09

1.11

1.03–1.21

0.80

1.33

1.26–1.41

1.31

1.23–1.38

0.65

0.73

0.67–0.79

1.00

0.92–1.08

0.72

0.79

0.74–0.83

0.86

0.81–0.91

0.80

0.96

0.76–0.86 0.89–1.04

0.87 0.87

0.82–0.92 0.80–0.94

0.79 0.75

0.068

0.025

0.112

0.026

0.051

0.007

0.004

0.007

0.58

1.27

1.15–1.40

0.81–1.04

0.79

0.81

OR

c-statistic

0.92

95% CI for OR

 po0.10.  po0.05. po0.01. y

Results are expressed as OR, 95% CI, and c-statistic unless otherwise indicated. The full-table results containing all variables are available upon request to the corresponding author. z Results of hospital mortality are shown in Table 3. y Results from the survival analysis. J Results of the least square regression, dependent variables transformed by the natural logarithm during regression.

Exploratory Variables

Insurance status Medicaid Uninsured Socio-demographic characteristics Age group Sex, female African American Hispanic American Other ethnics Median income by zip code Comorbidity index (CMBI)y

Model B

Model C

Model D

(c-Statistic ¼ 0.73)

(c-Statistic ¼ 0.90)

(c-Statistic ¼ 0.91)

(c-Statistic ¼ 0.91)

OR

95% CI for OR

OR

95% CI for OR

OR

95% CI for OR

OR

1.59 1.46

1.42–1.78 1.28–1.65

1.09 1.42

0.97–1.24 1.23–1.64

1.03 1.39

0.91–1.17 1.20–1.60

1.04 0.99

0.91–1.18 0.63–1.55

1.84 1.46 1.19 0.86 0.99

1.78–1.90 1.35–1.58 1.04–1.36 0.73–1.00 0.83–1.17

1.25–1.35 1.16–1.39 0.71–0.96 0.64–0.90 0.73–1.08

1.30 1.27 0.83 0.75 0.91

1.25–1.35 1.16–1.39 0.71–0.96 0.63–0.89 0.74–1.11

z

1.38–1.48 1.22–1.45 0.81–1.09 0.71–1.00 0.74–1.09 0.91–1.00

1.30 1.27 0.83 0.76 0.89

z

1.43 1.33 0.94 0.84 0.90 0.95

z

z

z

z

2.53

2.46–2.61

2.52

2.44–2.59

2.49

2.41–2.57

1.21 1.22

1.13–1.29 1.11–1.35

1.21 1.25

1.13–1.29 1.13–1.38

0.63

0.54–0.75

0.64

0.54–0.76

z

z

z

z

95% CI for OR

51

Hospital care Hospital size Admission in a teaching hospital Admission in a rural hospital Hospital AMI volume Hospital volume within the bottom 10th percentile

Model A

Disparities in Outcomes of AMI Across Health Insurance Statuses

Factors Associated with In-Hospital Mortality (n ¼ 80,730)y.

Table 3.

52

Table 3. (Continued ) Exploratory Variables

Hospital volume within the top 10th percentile (HVH) Receiving Arteriography (ARTE) Receiving PTCA Receiving CABG Interactions Uninsured*CMBI Uninsured*HVH Uninsured*ARTE Uninsured*PTCA

Model A

Model B

Model C

Model D

(c-Statistic ¼ 0.73)

(c-Statistic ¼ 0.90)

(c-Statistic ¼ 0.91)

(c-Statistic ¼ 0.91)

OR

OR

OR

95% CI for OR

OR

95% CI for OR

0.85

0.72–1.01

0.78

0.64–0.93

0.43

0.38–0.48

0.45

0.40–0.51

0.68 0.66

0.58–0.79 0.56–0.77

0.65 0.65

0.56–0.77 0.55–0.76

1.10 1.58 0.54 1.71

1.00–1.22 0.98–2.57 0.37–0.79 1.06–2.77

95% CI for OR

95% CI for OR

JAY J. SHEN ET AL.

Note: Model A: Generic Model (1); Model B: Generic Model (2); Model C: Without Interactions, Model D: With Interactions.  po0.10.  po0.05. po0.01. y In the restricted step-wise logistic analysis, health insurance status, age, sex, race and the comorbidity index were forced into the model. The full-table results containing all variables are available upon request to the corresponding author. z Variable not selected by the step-wise regression model at the significant level of po0.1. y The comorbidity index was collapsed to six levels (0–5) based on distributions.

Disparities in Outcomes of AMI Across Health Insurance Statuses

53

hospital characteristics in Model C, the mortality difference between Medicaid and privately insured patients was still not significant and the mortality OR between the uninsured and the privately insured patients was slightly reduced to 1.39. To further examine the persisting higher mortality risk of the uninsured patients after including all of the main effect variables, we added interaction terms in the analysis. In Model C, in addition to the uninsured insurance status, 11 other main effect variables were at least marginally statistically significant (po0.10). A total of 11 interaction terms between the uninsured and the 11 variables then were created, respectively. We added those 11 interaction terms into Model C to form Model D with results indicating that the mortality OR between the uninsured and the private insurance was no longer significant (OR [CI], 0.99 [0.63–1.55]). However, four interactive factors, those of uninsured status, comorbidity index, high AMI-volume hospital, and frequency of specialized procedures (coronary arteriography and PTCA), were significant. In other words, the main effect of uninsured status on mortality was largely replaced by the four interactive effects that were shown in Table 4. Table 4 lists the interactive ORs, differentiating the uninsured patients from the insured patients. First, among insured patients, receiving treatment in a hospital with an AMI volume within the 90th percentile contributed to significantly reduced mortality risk as compared to receiving treatment in other hospitals (OR [CI], 0.73 [0.64–0.93]). Receiving care in high-volume hospitals, however, made no differences in the mortality risk among uninsured patients (OR [CI], 1.23 [0.73–1.78]). Second, receiving arteriography was associated with a much greater reduction in mortality among the Table 4.

Interactive Effects of the Univsured Status with other Factors on Mortality Risk (n ¼ 80,730).

Interactive Factors

Comorbidity index Hospital volume within the top 10th percentile Receiving Arteriography Receiving PTCA

Uninsured (n ¼ 8,184)

Insured (n ¼ 72,546)

OR

95% CI for OR

OR

95% CI for OR

2.75 1.23

2.49–3.03 0.78–1.94

2.49 0.77

2.41–2.57 0.64–0.93

0.24

0.17–0.35

0.45

0.40–0.51

1.11

0.70–1.76

0.65

0.55–0.76

54

JAY J. SHEN ET AL.

uninsured patients (OR [CI], 0.24 [0.17–0.35]) than among the insured patients (OR [CI], 0.45 [0.40–0.51]). Finally, although receiving PTCA was associated with reduced mortality risk among insured patients (OR, 0.64), no such association was found among uninsured patients (CI, 0.69–1.73). In addition, among the six levels of the comorbidity index, the mortality OR between neighboring levels (a higher level versus its neighboring lower level), was similar among both groups, insured (OR, 2.49) and uninsured (OR, 2.75).

DISCUSSION Disparities in hospital care of AMI across health insurance subgroups exist. Differences were similar in some aspects but varied in others. Disparities in Hospital Care Between Medicaid and Private Insurance Although Medicaid patients tended to be treated in small or low-volume hospitals, they also tended to receive treatment in teaching hospitals more frequently than the comparison groups. With teaching hospitals being more frequently located in metropolitan areas, this is not surprising (Kahn et al., 1994). Even after controlling for sociodemographic factors, severity of illness, and hospital characteristics, Medicaid patients still received fewer specialized procedures for two of the three procedures that were measured. Since the use of those procedures was negatively associated with mortality in our study, factors related to this unequal treatment need to be identified in future studies. One possible factor might relate to unidentified clinical conditions in our data (e.g., prehospitalization delay) that prevented the use of certain specialized procedures (Goff et al., 1999; Philbin et al., 2001). Notwithstanding these differences, hospital mortality rates were comparable between Medicaid and privately insured patients when severity of illness was controlled. Disparities in Hospital Care Between the Uninsured and Private Insurance It is consistent that more uninsured patients were treated in rural hospitals or in hospitals with a low AMI volume. At the same time, relatively fewer uninsured patients went to a teaching hospital. This could be explained by larger numbers of uninsured patients residing in rural area (Lessler & Avins, 1992). This might also explain the lower frequency of procedures which are

Disparities in Outcomes of AMI Across Health Insurance Statuses

55

typically less available in non-teaching, low volume, and rural hospitals (Blustein et al., 1995; Canto et al., 1999). Another reason that uninsured patients used fewer specialized procedures might relate to the provider’s financial incentives or concerns since the uninsured patients were less able to pay for expensive services (Blustein et al., 1995; Sada et al., 1998). On this note, this may also explain why uninsured patients had lower lengths of stay. Financial disincentives by potential accepting hospitals may also explain the lower frequency of transfers. Differences in illness severity and hospital characteristics explain most of the extra mortality risk for uninsured patients as compared to privately insured patients. This relationship is potentially reflective of reduced access to high quality care in the rural setting combined with barriers to accessing higher quality care in an appropriate setting. Further analysis yields some interesting observations. First, although going to hospitals having an AMI-volume within the 90th percentile reduced the mortality risk among the insured patients, this association was not observed among the uninsured patients, which merits further exploration. This might be due to the fact that relatively few uninsured patients went to these more experienced hospitals limiting the impact on uninsured patients at large. In addition, although receiving arteriography was associated with reduced mortality risk for both insured and uninsured patients, the association was greater among the uninsured than among the insured. This suggests that the uninsured group is actually a heterogeneous group with respect to risk factors and financial means potentially ranging from patients in poverty to those in the middle class range. Given that arteriography is a diagnostic procedure that could not be expected to directly and independently influence outcomes, a likely explanation is that this procedure is performed more frequently among the subgroup of uninsured patients with greater financial means and concomitant lower risk. Third, although receiving PTCA, an invasive treatment procedure, significantly reduced the mortality risk among the insured patients, it did not reduce the mortality risk among the uninsured patients. This might be explained by the fact that the efficacy of this procedure can be highly operator dependent. Having this procedure at a less experienced hospital with less experienced practitioners may create risks that offset the benefits. Integrating all of the interactive effects, the higher mortality risk of the uninsured patients may be related to barriers to access to high-quality care in specialized institutions. The usual limitations of using administrative data apply here. First, the NIS data did not allow us to link either multiple admissions or other data sources, which made it impossible to examine the post-discharge outcomes

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(e.g., 30-day, 60-day, or 180-day mortality). Second, although we identified 29 clinical risk factors, clinical information in the NIS data set was still limited. Some information such as other effective treatments (e.g., aspirin or Beta-blocker administration), vital signs and laboratory tests, and the time between the onset of the AMI symptoms and the arrival at hospitals were unavailable, all of which could be important contributing factors. In summary, our study provided a comprehensive analysis on complex relationships between health insurance status and acute hospital care for AMI. Although some disparities across the insurance subgroups are yet to be fully explored, we were able to make several conclusions with relevant policy implications and possible directions for future studies. First, higher hospital mortality in Medicaid patients is mainly explained by severity of illness and level of risk as determined by cardiovascular complications and sequelae, and comorbid conditions rather than from the hospital characteristics. For Medicaid patients, efforts should be made to improve access to primary care and prevention. In addition, long-term outcomes (e.g., postdischarge mortality) should be followed in order to further assess the longterm effectiveness of hospital care. Second, the higher mortality risk of uninsured patients was strongly associated with hospital characteristics. Increased access to high-quality care in high-volume hospitals will be helpful in reducing higher mortality risk among the uninsured. In addition, future studies that meaningfully stratify subpopulations within the uninsured group will help explore hypotheses suggested by this study related to higher risk and poorer outcomes among uninsured patients at lower income levels. Finally, less frequent utilization of specialized clinical procedures among Medicaid and uninsured patients as compared to patients with private insurance persisted even after adjusting for other factors. Factors other than patients’ sociodemographic characteristics, severity of illness, and hospital characteristics accounted for unequal treatment between groups (Philbin et al., 2001). In order to reduce insurance related disparities, quality improvement initiatives should systematically seek to ensure that care provided to uninsured and Medicaid patients meets similar process and outcome standards as compared to care provided to those with private insurance.

REFERENCE Aday, L. A., Begley, C. E., Lairson, D. R., & Slater, C. H. (1998). Evaluating the healthcare system: Effectiveness, efficiency, and equity.6 Ann Arbor, MI: Health Administration Press.

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RACIAL AND SOCIOECONOMIC DIFFERENCES IN PREDICTORS OF DENTAL CARE USE Sam S. Kim, Jennie J. Kronenfeld and Patrick A. Rivers ABSTRACT Despite the biological and clinical advances in oral health, dental disease is still a problem for those of low socioeconomic (SE) status, as well as racial and ethnic minorities. In this study, we use the Andersen Behavioral Model of predisposing, enabling, and need factors to examine the effects of race, ethnicity, and income on dental care utilization. Using the Medical Expenditure Panel Survey (MEPS) household component and dental event data (n ¼ 8,685), we tested the hypothesis that longer survival or delay in dental care utilization is associated with both minority and lowered SE statuses. Analyses confirm that minority status, income, and education, are predictive of the delay in dental care utilization. This study lends support to the theorized assumption that there are racial and ethnic differences in the pattern of dental care utilization and that these differences as well as other factors contribute to disparity in dental care utilization.

Access, Quality and Satisfaction with Care: Concerns of Patients, Providers and Insurers Research in the Sociology of Health Care, Volume 24, 61–79 Copyright r 2007 by Elsevier Ltd. All rights of reproduction in any form reserved ISSN: 0275-4959/doi:10.1016/S0275-4959(06)24004-3

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INTRODUCTION Access to dental care is a major barrier to maintaining good oral health. Biological and clinical advances have reduced the rate of dental decay over the last 30 years. However, despite these advances, dental disease remains a problem for those of lower socioeconomic (SE) status and for some racial and ethnic minorities (Drury, Garcia, & Adesanya, 1999; Zabos et al., 2002). National studies on dental care utilization show that Blacks, Hispanics, the poor, and those with lower levels of education receive less dental care than non-minorities and the economically advanced (Dolan, Corey, & Freeman, 1998; Manski & Magder, 1998). In the National Access to Care Survey, 75% of those surveyed indicated that financial difficulties prohibited them from obtaining proper dental care. The Surgeon General’s Report on Oral Health indicated income as a factor contributing to the disparities for a variety of oral diseases (US Department of Health and Human Services, 2000). A study by Kiefe et al. (2000) showed that during the period from 1992 to 1996, disparities increased when income was taken into account. This study also proved income to be the most significant predictor of access to care. Blacks encountered the most problems with access, which was attributed to differences in income. Longitudinal improvements in access were observed in the highest and middle income groups, but not for persons in the lower income group. Having insurance improved access to services, however access varies depending on the type of insurance (Zabos et al., 2002). Manski and Magder (1998) also found similar results from their analysis of National Health Interview Survey (NHIS) data in which enabling factors such as income and insurance status significantly predicted a disparity in access to dental care services. The lack of dentists in low income neighborhoods, as well as more limited financial means, remains the most significant barriers to dental care access. The absence of dental offices in low income areas leads to use of the hospital emergency room as the main source of dental services for the poor. This type of dental care subsequently results in increased costs of dental service and thereby reduces its effectiveness. Full-time employees and those within high income groups had lowered numbers of visits to the emergency department (Kiefe et al., 2000). Additional characteristics that affect dental care include one’s personal characteristics, environment, and the dental care delivery system available (Fryer et al., 2003). Race/ethnicity is one of the personal characteristics that greatly affect dental care. Research on ethnic group differences in health service utilization suggested that having a lowered SE status and belonging

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to an ethnic minority group were factors associated with decreased use of health services (Davidson, Cunningham, Nakazono, & Anderson, 1999; Zabos et al., 2002). Studies conducted from 1978 to 2002 suggest that progress in oral health has not benefited all segments of society (Andersen & Davidson, 1997; Capilouto, 1990; Garcia & Juarez, 1978; Ismail & Szpunar, 1990; Manski & Magder, 1998; Morey & Leung, 1993; Zabos et al., 2002). These studies show that ethnic minorities do not utilize dental care services as much as whites. Empirical evidence shows that not only does a lower level of education and knowledge about oral disease reduce the use of dental services, but the lack of enabling sources is also a factor used to explain low utilization among minorities (Andersen & Davidson, 1997). Earlier studies on utilization of dental health services examined whites and non-whites. These studies did not examine the differences in patterns of utilization that might exist between Whites and other ethnic minority groups. Newman and Anderson (1972) reported that Whites were more likely to receive cleanings, examinations, and fillings, when compared to other ethnic minority groups. Other studies showed that a high percentage of Blacks, Hispanics, and Mexican Americans had never visited a dentist (Davidson et al., 1999). Atchison, Davidson, and Nakazono (1997) showed that 43% of Hispanic adults reported a primary source of dental care when compared to 71–84% for other groups. The overall findings of this study showed that there are differences between Whites and the four ethnic groups (Blacks, Hispanics, Native American: Navajo and Lakota) studied. The International Collaborative Study of Oral Health Outcomes (ICS-II) data used for the study also suggested that Whites had both higher incomes and levels of education (Atchison et al., 1997). A study by Bloom, Gift, and Jack (1992) compared Black and Hispanic adults to Whites, in the age cohorts of 35–44 and 65–74. The results of this study showed that Whites in both age cohorts reported higher percentages of dental visits within 1 year. The disparities in dental health care between Whites and ethnic minorities seem to be increasing with time. A study by Jones, Fedele, Bolden, and Bloom (1994) addressed this particular disparity. This study examined NHIS dental service utilization data collected over a 30-year period. It documented disparities between Whites, Blacks, Hispanics, and non-Hispanics from 1957 to 1989. The largest gap was identified in older Blacks. Reported dental visits among older Whites and Blacks were 65% and 31.7%, respectively. A recent study by Gilbert et al. (2002) also showed that Blacks were less likely to seek dental care when compared to Whites. This was primarily due to financial status (a strong predictor of the pattern of dental care utilization among Blacks).

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The dental health care system includes dental practices that are mostly private and on a fee-for-service basis, which influences the accessibility, availability, acceptability, and convenience of dental care service (Andersen & Davidson, 1997; Zabos et al., 2002). Thus, patient satisfaction is an essential element in the study of utilization since it allows us to measure quality of care. Handelman, Fan-Hsu, and Proskin (1990) conducted a study on dental patient satisfaction using three components of patient satisfaction: dentist care and communication, dental staff, and efficiency of the dental office. The results of this study showed lowered scores for ethnic minorities in all components. An additional study by Liddell and Locker (1992) also showed that patient satisfaction is directly related to regular use of dental services. Cunningham and Cornelius (1995) reported that in addition to having a primary source of dental care, income was significantly correlated with health service utilization. Davidson et al. (1999) showed that ethnic minority groups reported fewer dental visits when compared to Whites. Ethnic minorities in the age cohorts of 34–44 and 45–65 reported significantly fewer dental visits within 1 year when compared with Whites. This study also showed that having a primary source of dental care significantly increases the probability of dental visits in all ethnic minority groups. People who visit dental care professionals on a regular basis have a better chance of preventing oral disease. It has been recommended that individuals visit a dentist 1–2 times per year to prevent oral diseases (Newman & Gift, 1992). Irregular dental visits may increase individual susceptibility to oral diseases and result in long term health consequences, eventually leading to more severe health problems. According to the American Dental Association (ADA), gum disease is linked to higher rates of heart attacks and strokes (‘‘Life Stages: Adults’’, n.d.). Since disparities in oral health still persist, it is imperative that we identify variables that might serve as barriers to dental care accession.

THEORETICAL FRAMEWORK In this study, the Andersen Behavioral Model of predisposing, enabling, and need is adopted to measure factors that influence the use of dental health care services (Andersen, 1995). The Andersen model views health care utilization as the result of characteristics of the population at risk and the system of health care delivery. Availability of resources in a community is essential to utilization trends within a population. Besides the availability of resources, other predisposing and enabling factors are critical when

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examining specific groups. The conceptual framework of this study focuses on the effects of structural barriers on the utilization of dental services among ethnic minorities. In particular, we will focus on the differences in utilization among minority groups and non-Hispanic Whites. Predisposing characteristics are structural factors that exist prior to disease such as age, sex, education, marital status, race, and ethnicity. Enabling characteristics are financial resources that influence one’s ability to access appropriate health care services. Potential enabling factors include household income, dental insurance status, usual source of dental care, and availability of dental health services in the community. Need is measured by a perceived need for dental services.

OBJECTIVES AND HYPOTHESIS Dental care service is considered to be more discretionary when compared to hospital services or many physician services. Andersen (1995) notes that access to dental services is ‘‘more likely to be explained by social structure, beliefs, and enabling factors.’’ Thus, the main goal of this study is to investigate whether predisposing, enabling, and need characteristics are predictive of dental care utilization. In particular, we are interested in finding factors that are associated with the delay in accessing dental health care services. We also examined whether there are differences in the pattern of dental care utilization across race/ethnicity, and among different income groups. Finally, this study will identify other possible factors and their impact on influencing access to American dental health services. Based on the literature reviewed in this chapter, we hypothesize that a lower percentage of minorities received dental care service during the study period, the pattern of dental care utilization will vary across race/ethnicity and income groups, and minorities are less likely than non-Hispanic Whites to utilize dental health services regularly.

METHODS Sample Data for this prospective longitudinal study were obtained from the 1999 and 2000 Medical Expenditure Panel Survey (MEPS) sponsored by the Agency for Healthcare Research and Quality (AHRQ). MEPS (2000a,

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2000b) is a nationally representative survey with an overlapping panel design that enables longitudinal study of a large cohort for a 2-year period. Its sample consists of households and individuals that had taken part in a previous NHIS. In this study, we used household component records which characterize individuals and families. Household component records provide data on demographic characteristics, health status, health care use, access to care, and insurance status. We also used dental event records, which profile the respondent’s dental care visits in the calendar years 1999 and 2000. We created a longitudinal file by merging dental event records onto household component files. We followed the respondents who were part of panel 4. Panel 4 was comprised of 14,178 respondents who were subjected to five rounds of interviews between January 1, 1999 and December 31, 2000. Of this group, we focused on a subsample of 8,685 persons aged 18 and older, because these respondents had complete data on all of the study variables used in the statistical models. Combined records were weighted to permit the calculation of national estimates over a 2-year period. Measures Dental Care Visits Our focal outcome measure of interest is the amount of time elapsed before the first dental visit of any kind occurring between January 1, 1999 and December 30, 2000. Duration was measured in days. The event indicator was assigned the number code 1 if the respondent’s first visit to a dental care service provider occurred between the times specified above. Respondents who did not visit any dental health services within the 2-year period were considered censored. Since the pattern of utilization might vary for respondents who visit specialized dental service providers (e.g., hygienist), we created multiple event indicators to examine first visits to both general dentists and hygienists. The pattern might also vary for respondents who use preventive dental services; therefore, we included an event indicator to record the first dental exam or consultation received in the study period. Independent Variables We derived our predictors from the Andersen Behavioral Model of health care utilization. The predictors used in our analysis were predisposing, enabling, and need variables. Predisposing variables in our analysis included age, gender, marital status, race and ethnicity, education, and employment status. Age reflected the person’s age as of January 1, 1999, and was coded into four distinct categories. Race/ethnicity was coded into four categories

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(Hispanic, Asian and Pacific Islander (AAPI), non-Hispanic Black, and nonHispanic White). Family income, as a percent of poverty line, was included as an enabling variable. MEPS asked the respondent’s usual source of care, dental insurance status, and geographic location in relation to the Metropolitan Statistical Area (MSA). We included the above variables as enabling variables. Self-perceived health status was included as a need variable. All of the study variables were time fixed. Results of the descriptive statistics and case-wise diagnostics confirmed that there was very little variation in the study variables, and the degree of change in health measures was modest after five rounds of interviews. The variables reflect the person’s status as of January 1999. Because MEPS data (2002a, 2002b) does not provide detailed information regarding oral health, we used the respondent’s primary source of care and self-perceived general health status as opposed to using the source of dental care and oral health status. Data Analysis Descriptive analyses were performed on all study variables. We calculated weighted percentages between each of our predictors and our event indicators. We then examined survival and hazard curves stratified by ethnicity and income. We used the Kaplan–Meier method to obtain weighted quartile estimates of elapsed time before the first dental visit, in order to assess proportionality of the hazard and the log-rank tests for equality over strata of race/ethnicity and family income as a percent of poverty line. We analyzed our multivariate models using Cox proportional hazard regression. We estimated the effect of predisposing, enabling, and need characteristics on the transition to the respondent’s first dental visit that occurred within the study period. We used SUDAAN Version 9 on all analyses (Research Triangle Institute, 2004). In all analyses, standard errors were adjusted to take into account weighting, clustering, stratification, and increased variability, a result of MEPS survey design complexity, particularly the substantial over-sampling of certain racial and ethnic minorities.

RESULTS Descriptive Results Table 1 shows descriptive statistics for the overall sample (n ¼ 8,685). Subsamples of respondents were stratified according to those who received any

Weighted Percentages for Each Variable in the Analysis, for the Full Sample, and Sub-Samples Stratified by Types of Dental Service Recieved. All Dental Visits

General Dentist Visits

Hygienist Visits

Dental Exams

22.0 32.0 24.9 21.2

19.3 33.4 26.9 20.4

18.6 33.6 27.3 20.5

19.5 33.9 27.0 19.5

19.4 34.1 27.1 19.3

47.7 52.3

43.1 56.9

43.5 56.5

42.9 57.1

43.2 56.8

54.7 45.3

59.0 41.0

59.8 40.2

59.5 40.5

59.8 40.2

10.3 3.3 11.3 75.1

6.6 2.7 8.1 82.5

6.3 2.7 7.9 83.2

6.3 2.9 7.3 83.6

6.1 2.9 7.1 83.9

19.9 32.2 23.0 24.8

12.5 29.5 25.0 33.0

12.2 29.4 25.1 33.4

11.0 28.2 25.6 35.2

10.9 28.1 25.8 35.1

29.3 70.7

26.1 73.9

25.9 74.1

25.1 74.9

24.8 75.5

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Predisposing variables Age 18–29 30–44 45–59 60–oldest Gender Male Female Marital status Not married Married Race and ethnicity Hispanic AAPI Non-Hispanic Black Non-Hispanic White Education Less than high school High school Some college College graduate or more Employment Not employed Employed

MEPS Full Sample

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Table 1.

Need variables Perceived health status Poor Fair Good Very good Excellent N (unweighted) N (weighted)

22.1 77.9

16.7 83.3

16.5 83.5

16.6 83.4

16.7 83.3

53.8 46.2

45.6 54.4

45.5 54.5

43.2 56.8

43.4 56.6

9.9 3.9 12.5 31.0 42.8

7.0 2.6 9.1 29.9 51.4

7.0 2.5 8.7 29.8 52.0

6.4 2.2 8.3 29.7 53.5

6.4 2.2 7.9 29.7 53.8

18.7 81.3

17.1 82.9

17.1 82.9

16.1 83.9

16.4 83.6

3.3 9.0 24.6 33.3 29.8

2.4 7.5 23.2 34.4 32.4

2.5 7.3 23.2 35.0 32.0

1.9 6.8 22.8 35.0 33.6

1.9 6.8 22.9 35.2 33.2

8,685 192,543,987

4,559 109,554,255

4,224 101,592,044

3,689 90,091,624

3,478 84,897,810

Racial and SE Differences in Predictors of Dental Care Use

Enabling variables Have regular source of care? No Yes Have dental insurance? No Yes Family income Poor Near poor Lower middle income Upper middle income High income MSA Non-MSA MSA

Note: Missing values were deleted case-wise so that unweighted N reflects the number of respondents used in the analysis.

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type of dental care in the 2-year study period (n ¼ 4,559), those whose first dental event included a visit to a general dentist (n ¼ 4,224) or dental hygienist (n ¼ 3,689), and those who received a dental exam and/or consultation (n ¼ 3,478). Seventy-five percent of the overall sample was non-Hispanic Whites, 11.3% were non-Hispanic Blacks, 10.3% were Hispanic, and 3.3% were AAPIs. Thirty-two percent were between 30 and 40 years of age, 52.3% were female, 45.3% were married as of January 1999, and 29.3% were unemployed. Thirty-two percent had completed high school and 47.8% had post-secondary education. Our measure of income reflected family income as a percentage of the poverty line. Approximately 26% of respondents were in the poor, near poor, or lower middle income category. Seventy-eight percent had a regular source of health care and 46.2% had dental insurance. Eighty-one percent lived within the MSA. Selfperceived health status by respondents was either excellent (29.8%), very good (33.3%), good (24.6%), fair (9%), or poor (3.3%). Table 2 shows weighted percentages between our event indicators and our focal independent variables (e.g., family income as a percent of poverty line, and race/ethnicity). Results show that there is decreased use of dental health services among Hispanics, non-Hispanic Blacks, and non-Hispanic AAPIs, when compared to non-Hispanic Whites during the study period. During the study period, a higher percentage of non-Hispanic Whites (61%) received some form of dental health care service, when compared to Hispanics (34.8%), non-Hispanic Blacks (39.6%), and Asians (47.3%). In addition, 67% of the respondents in the high income category had received some form of dental health care services; however, percentages were lower in other income groups. The Kaplan–Meier method was used to obtain survival curves for elapsed time before the first dental event. Fig. 1 shows weighted survival curves stratified by race/ethnicity and income as a percent of poverty line. We assessed the log-rank statistic for equality over the strata and proportionality of hazards. Results from the log-rank tests allowed us to reject the equality assumption (po0.001). This finding is supportive of our second hypothesis. Fig. 1 shows that the higher probability of delay in visits to dental health care services is characterized by minority status (except AAPIs) and lower income.

Multivariate Results Table 3 shows hazard ratio (HR) from weighted Cox regression models. HR reflect the ratio of median survival time. In our models, we estimate the

The Characteristics of the First Dental Event by Race and Ethnicity and Family Income as Percent of Poverty Line. Any Dental Services

Visited General Dentist

Visited Hygienist

Received Exams or Consultations

Yes

No

Yes

No

Yes

No

Yes

No

Race and ethnicity Hispanic AAPI Non-Hispanic Black Non-Hispanic White

34.8 47.3 39.6 61.4

65.2 52.7 60.4 38.6

31.3 42.3 35.9 57.5

68.8 57.7 64.1 42.5

26.8 39.2 28.6 50.8

73.2 60.8 71.4 49.2

24.9 37.4 26.7 48.1

75.1 62.6 73.3 51.9

Family income Poor Near poor Lower middle income Upper middle income High income

34.9 34.9 37.2 51.0 67.4

65.1 65.1 62.8 49.0 32.6

32.0 30.9 33.9 47.2 63.0

68.0 69.1 66.1 52.8 37.0

25.5 22.9 27.0 41.3 57.2

74.5 77.1 73.0 58.7 42.8

24.3 20.9 25.5 38.9 53.9

75.7 79.1 74.5 61.1 46.1

Overall sample

52.5

47.5

48.6

51.4

42.5

57.5

40.0

60.0

Racial and SE Differences in Predictors of Dental Care Use

Table 2.

Note: All percentages shown are weighted percentages.

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SAM S. KIM ET AL. 1.0

Hispanic

0.9

AAPI

KM Survival Distribution

0.8

Non-Hispanic Black

0.7

Non-Hispanic White 0.6 0.5 0.4 0.3 0.2 0.1 0.0 0

a

50

100

150

200

250

300

350

400

450

500

550

600

650

700

750

Number of Days from January 1st 1999 to the First Dental Visit 1.0

Poor 0.9

Near Poor

KM Survival Distribution

0.8

Lower Middle Income 0.7

Upper Middle Income

0.6

High Income

0.5 0.4 0.3 0.2 0.1 0.0 0

b

50

100

150

200

250

300

350

400

450

500

550

600

650

700

750

Number of Days from January 1st 1999 to the First Dental Visit

Fig. 1. Weighted Kaplan–Meier Survival Distribution Predicting Elapsed Time before the First Dental Event Stratified by (a) Race and Ethnicity and (b) by Income as a Percent of Poverty Line.

HR from Weighted Cox Regression for the Sample Stratified by the Types of Dental Care Providers and Services. All Dental-related Visits Model 1

Predisposing variables Age 18–29 30–44 45–59 60–oldest Gender Male Female Marital status Not married Married Race and ethnicity Hispanic AAPI Non-Hispanic Black Non-Hispanic White Education Less than high school High school Some college College graduate or more Employment Not employed Employed

Model 2

Model 3

Provider and Service-Specific Visits Model 4

General Dental Visits

Hygienist Visits

Dental Examsy

Model 5

Model 6

Model 7

0.84 0.86 0.93 1.00

– – – –

– – – –

0.84 0.86 0.91 1.00

0.81 0.85 0.91 1.00

0.88 0.89 0.93 1.00

0.89 0.90 0.93 1.00

0.97 1.00

– –

– –

0.98 1.00

0.99 1.00

0.97 1.00

0.97 1.00

1.03 1.00

– –

– –

1.00 1.00

1.02 1.00

1.00 1.00

1.01 1.00

0.80 0.95 0.83 1.00

– – – –

– – – –

0.83 0.99 0.84 1.00

0.79 0.96 0.81 1.00

0.81 1.01 0.76 1.00

0.79 1.02 0.74 1.00

0.75 0.84 0.90 1.00

– – – –

– – – –

0.81 0.88 0.91 1.00

0.80 0.88 0.92 1.00

0.72 0.82 0.90 1.00

0.72 0.83 0.91 1.00

1.04 1.00

– –

– –

1.10 1.00

1.09 1.00

1.13 1.00

1.11 1.00

Racial and SE Differences in Predictors of Dental Care Use

Table 3.

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74

Table 3. (Continued ) All Dental-related Visits Model 1

Enabling variables Have regular source of care? No Yes Have dental insurance? No Yes Family income Poor Near poor Lower middle income Upper middle income High income MSA Non-MSA MSA

Number experiencing event

y

Dental exams and consultation.

Model 4

General Dental Visits

Hygienist Visits

Dental Examsy

Model 5

Model 6

Model 7

– –

0.85 1.00

– –

0.87 1.00

0.87 1.00

0.86 1.00

0.86 1.00

– –

0.93 1.00

– –

0.91 1.00

0.91 1.00

0.86 1.00

0.87 1.00

– – – – –

0.81 0.76 0.83 0.90 1.00

– – – – –

0.89 0.85 0.88 0.94 1.00

0.89 0.82 0.84 0.94 1.00

0.86 0.73 0.83 0.93 1.00

0.86 0.73 0.78 0.92 1.00

– –

0.93 1.00

– –

0.92 1.00

0.92 1.00

0.87 1.00

0.89 1.00

– – – – –

– – – – –

0.93 0.84 0.94 0.99 1.00

0.96 0.88 0.94 1.00 1.00

0.98 0.87 0.95 1.03 1.00

0.76 0.82 0.92 0.99 1.00

0.79 0.84 0.95 1.01 1.00

4,559

 po0.05.  po0.01.  po0.001.

Model 3

4,224

3,689

3,478

SAM S. KIM ET AL.

Need variables Perceived health status Poor Fair Good Very good Excellent

Model 2

Provider and Service-Specific Visits

Racial and SE Differences in Predictors of Dental Care Use

75

timing to the first dental event. Thus, longer survival reflects a delay in the timing of the respondent’s first dental visit. Model 4 in Table 3 shows the full model estimating the effect of predisposing, enabling, and need characteristics on the transition to the respondent’s first visit to any dental health care provider during the study period. The rate of visits to dental health care services for non-Hispanic Blacks (HR 0.84, 95% CI 0.74–0.95) and Hispanics (HR 0.83, 95% CI 0.75–0.92) were significantly lower when compared to non-Hispanic Whites. There was a significant delay as well as lowered rates of visits to dental health services for respondents in the middle income category when compared to those in the high income category. Lowered rates of dental visits were also a characteristic of respondents in poor, near poor, and low income categories, however, these results were not statistically significant. Our results also confirm that a low level of education is predictive of delay in dental health care utilization. The rate of dental visits for respondents who had no high school education (HR 0.81, 95% CI 0.71–0.92) was 19% lower than respondents with a college education, and 12% lower for those with high school diplomas (HR 0.88, 95% CI 0.81–0.96). Interestingly, being unemployed (HR 1.10, 95% CI 1.01–1.19) increased the rate of visits. As the coefficients show, older respondents (60 years of age and above), who are less likely to work, had greater rates of visits than younger respondents. Other significant factors with a negative effect on visits to dental health services included not having a primary regular source of dental care (HR 0.87, 95% CI 0.79–0.97) or dental insurance (HR 0.91, 95% CI 0.83–0.99). Respondent’s gender, marital status, and MSA all contributed to a lowered rate of visits to dental health services. However, these variables were not statistically significant. Models 5 through 7 in Table 3 were used to test the assumption that the predictors of utilization might vary for respondents who visited specialized dental service providers (e.g., hygienists). Since most of the respondents in Model 4 were included in Model 5, the HR for the study variables were similar both in magnitude as well as significance level. In other words, a dental event for most of the respondents consisted of a visit to a general dentist. Generally, people are less likely to receive specialized dental services unless they are referred by general dentists. Model 6 examines the rate of visits to a dental hygienist. The factors predicting lowered rate or delay in visit to a dental hygienist are similar to the factors mentioned in the previous models. We find that income was one of the stronger predictors in this particular model. There was a significant delay in dental hygienist visits in the lower income group. The most noticeable change from previous models, other than family income, was that

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those living in a non-MSA exhibited a significant delay in visits to a hygienist. The rate of visits to a dental hygienist was 13% lower for respondents living in a non-MSA (HR 0.87, 95% CI 0.76–0.99) when compared to those living in MSAs. This is possibly due to the lack of availability of dental hygienists in the rural areas. There was also a significant association between lowered levels of self-perceived health status and lowered rates of visits. The rate of visits for respondents who reported poor health (HR 0.76, 95% CI 0.60–0.97) and fair health (HR 0.82, 95% CI 0.69–0.96), were 24% and 18% lower, respectively, when compared to those who reported an excellent health status. Finally, Model 7 examined the rate of receiving dental exams and/or consultations. In this model, a lowered rate of dental visits was characteristic of respondents who were 18–29 years of age, Hispanic, non-Hispanic Black, and less educated. The absence of a primary care source, insurance, or belonging to a low income family also predicted the delay. Similar to Model 6, the rate of visits to dental care providers for dental exams or consultations was significantly lower for respondents who perceived that their health was below average. Non-Hispanic Blacks (HR 0.74, 95% CI 0.62–0.87) had a lowered rate of dental visits for dental exams and consultations when compared to non-Hispanic Whites.

DISCUSSION Analyses show support for each of our hypotheses. The lowered rate of regular dental visits is associated with minority status and low income. The pattern of dental care utilization varies by race/ethnicity and income groups. Longer survival or delay in dental health care utilization is also associated with low income and minority status. Additional predictors had varying influences on different services. Income is a strong predictor of the delay in visit to dental care specialists and preventive services. As seen in previous studies, our results suggest that Blacks, Hispanics, those from low income families, those with little education, the absence of a primary care source, and no insurance are all factors associated with lowered rates of dental care service utilization. Additional factors that reduce the rate of dental care services utilization include living in a non-MSA and young age. We also found that gender and marital status were not predictive of a lowered rate of dental care services utilization. In summary, the main findings of this study suggest that the disparity in access to US dental health care still exists for minorities and lower income groups.

Racial and SE Differences in Predictors of Dental Care Use

77

This significant difference in the rate of dental health care utilization among minorities further suggests that it may contribute to more prevalent and severe oral health decrements among this group. In general, the low rate of health care utilization among minorities is attributed to the lack of knowledge about the importance of preventive health care and the fact that private dental insurance is often unaffordable to them and less likely to be provided by their employers. It is also worth mentioning that the cultural and ethnic difference in preventive health measures may further explain the low utilization among minorities, especially among recent immigrants to the US. It is important that public education programs which promote the importance of preventive care and appropriate use of health care services also stress dental care as one of those important services. Public education messages about the importance of dental care would be helpful, not only in general media outlets but also in those that target racial and ethnic minorities. For many lower income patients, Medicaid and State Children’s Health Insurance Program (SCHIP) in many states cover dental care. Thus, these programs may serve to provide better public education to recipients so that these services are used, thereby, assuring that these traditionally underserved populations gain a better understanding of the importance of oral health and preventive dental care. Nowadays, since cutbacks are prevalent in publicly funded health insurance (especially in those states participating in the SCHIP program), some states have suggested that dental care be eliminated as a provided service. Such a cutback will not improve disparities in dental care between racial ethnic groups and lower income families, and hopefully can be avoided in most states. The present study advances prior research in several ways. Most studies that assess dental health care utilization use large cross-sectional data to measure whether the likelihood of use and non-use varies by different subgroups. However, the results from such studies do not provide the rate of change over time. Our results present a more accurate description of the pattern of dental health care utilization over time. Studies of dental care utilization are often limited in that they employ very selective samples. Either they use small, local, and often unrepresentative samples, or large, representative samples drawn from a homogenous population that limits the ability to look at most racial and ethnic minorities. The data used in this study provide a more representative sample of racial and ethnic minorities. Of course, additional studies would continue to improve our knowledge of health care disparities for dental services utilization. Large national surveys, such as the one used in this study, are limited in that they do not provide the

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detailed understanding of groups with multiple social inequities. A smallerscale study that over-samples ethnic minorities and income groups may be the best solution for understanding all disparities in dental health care. In particular, we recommend that dental service utilization should be examined separately for different ethnic groups within AAPIs since ethnic group differences in SE status is greatest among this particular minority group.

REFERENCES Andersen, R. M. (1995). Revisiting the behavioral model and access to medical care: Does it matter? Journal of Health and Social Behavior, 36(1), 1–10. Andersen, R. M., & Davidson, P. L. (1997). Ethnicity, aging and oral health outcomes: A conceptual framework. Advance in Dental Research, 11, 203–209. Atchison, K. A., Davidson, P. L., & Nakazono, T. T. (1997). Predisposing, enabling, and need for dental treatment characteristics of ICS-II USA ethnically diverse groups. Advances in Dental Research, 11(2), 223–234. Bloom, B., Gift, H. C., & Jack, S. S. (1992). Dental services and oral health: US 1989 vital and health statistics. Series 10: Data from the National Health Survey [DHHS Pub. No. (PHS) 93–1511]. Washington, DC: US Government Printing Office. Capilouto, E. (1990). Improving the oral health of at-risk children. Journal of Health Care for the Poor and Underserved, 2(1), 132–146. Cunningham, P. J., & Cornelius, L. J. (1995). Access to ambulatory car for American Indians and Alaska Natives; the relative importance of personal and community resources. Social Science Medicine, 40, 393–407. Davidson, P. L., Cunningham, W. E., Nakazono, T. T., & Anderson, R. M. (1999). Evaluating the effect of usual source of dental care on access to dental services: Comparisons among diverse populations. Medical Care Research and Review, 56(1), 74–93. Dolan, T. A., Corey, C. R., & Freeman, H. E. (1998). Older Americans’ access to oral health care. Journal of Dental Education, 52(11), 637–642. Drury, T. F., Garcia, I., & Adesanya, M. (1999). Socioeconomic disparities in adult oral health in the United States. Annals of the New York Academy of Sciences, 89, 322–324. Fryer, G. E., Green, L. A., Dovey, L. A., Yawn, B. P., Phillips, R. L., & Lanier, D. (2003). Variation in the ecology of medical care. Annals of Family Medicine, 1, 81–89. Garcia, J. A., & Juarez, R. Z. (1978). Utilization of dental health services by Chicanos and Anglos. Journal of Health and Social Behavior, 19, 428–436. Gilbert, G. H., Shah, G. R., Shelton, B. J., Heft, M. W., Bradford, E. H., Jr., & Chavers, L. S. (2002). Racial differences in predictors of dental care use. Health Services Research, 37(6), 1487–1507. Handelman, S. L., Fan-Hsu, J., & Proskin, H. M. (1990). Patient satisfaction in four types of dental practices. Journal of American Dental Association, 121, 624–630. Ismail, A. I., & Szpunar, S. M. (1990). The prevalence of tooth loss, dental caries, and periodontal disease among Mexican Americans, Cuban Americans, and Puerto Ricans: Findings from NHANES 1982–1984. American Journal of Public Health, 80(Suppl), 66–70.

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Jones, J. A., Fedele, D. J., Bolden, A. J., & Bloom, B. (1994). Gains in dental care use not shared by minority elders. Journal of Public Health Dentistry, 54, 39–46. Kiefe, C. I., Williams, D., Weissman, W., Schreiner, P. J., Sidney, S., & Wallace, D. D. (2000). Changes in US health care access in the 90’s: Race and income differences from the CARDIA study. Ethnicity and Disease, 10, 418–431. Liddell, A., & Locker, D. (1992). Dental visits satisfaction in a group of adults aged 50 years and over. Journal of Behavioral Medicine, 15(4), 415–427. Life stages: Adults. (n.d.). Retrieved November 1, 2004, from http://www.ada.org/public/ manage/stages/adults.asp Manski, R. J., & Magder, L. S. (1998). Demographic and socioeconomic predictors of dental care utilization. Journal of American Dental Association, 129(2), 195–201. MEPS: Household Component Event Files (2002a). Rockville, MD: Agency for Healthcare Research and Quality. MEPS: Household Full Year Population Characteristics Files (2002b). Rockville, MD: Agency for Healthcare Research and Quality. Morey, D. P., & Leung, J. J. (1993). The multicultural knowledge of registered dental hygienists: A pilot study. Journal of Dental Hygiene, 67(4), 180–185. Newman, J. F., & Anderson, O. W. (1972). Patterns of dental service utilization in the United States: A Nationwide Social Survey. Chicago, IL: Center for Health Administration Studies, University of Chicago. Newman, J. F., & Gift, H. C. (1992). Regular pattern of preventive dental services – measure of access. Social Science in Medicine, 35(8), 997–1001. Research Triangle Institute. (2004). SUDAAN: Software for the Statistical Analysis of Correlated Data, Version 9. Research Triangle Park, NC: Research Triangle Institute. US Department of Health and Human Services. (2000). Oral health in America: A report of the surgeon general. Rockville, MD: National Institutes of Health (available at http:// www.nidcr.nih.gov/sgr/execsumm.htm). Zabos, G. P., Northridge, M. E., Marguerite, J. R., Trinh, C., Vaughan, R., Howard, J. M., Lamster, I., Bassett, M. T., & Cohall, A. T. (2002). Lack of oral health care for adults in Harlem: A hidden crisis. American Journal of Public Health, 92(1), 49–51.

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GETTING YOUR OWN DOCTOR IS ‘‘A STAB IN THE DARK’’: EXPLORING THE PRESENCE OF ON-CALL DOCTORS AT HOSPITAL BIRTHS AND POTENTIAL IMPLICATIONS FOR NURSING PRACTICE Heather Dillaway and Sonica Rehan ABSTRACT Frequently women are attended by someone other than their chosen doctor during labor and delivery, that is, an ‘‘on-call’’ doctor. This chapter draws from interviews with 19 women who gave birth in a Mid-Atlantic state during late 1995 and early 1996. Of these women, 13 received care from an on-call doctor. Using existing social–psychological perspectives, the authors analyze situations in which an on-call doctor was present, and how this provider influenced women’s birth experiences as well as satisfaction with those experiences. In general, women do not expect or desire on-call doctors’ presence. As a result, they may rely on obstetric nurses, rather than these unfamiliar doctors, when they need information or support. Access, Quality and Satisfaction with Care: Concerns of Patients, Providers and Insurers Research in the Sociology of Health Care, Volume 24, 81–105 Copyright r 2007 by Elsevier Ltd. All rights of reproduction in any form reserved ISSN: 0275-4959/doi:10.1016/S0275-4959(06)24005-5

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INTRODUCTION Over 4 million babies are born in the U.S. each year (U.S. Census Bureau, 2003). Almost all of them (95%) are born in hospitals; of this population 95.5% are born with a physician in attendance (Leavitt, 1986; Wolfe, 1995). Yet who is this physician? And does it matter for the course of the birth, or for women’s satisfaction? There is abundant research on the nature of childbirth experiences in the U.S. and other countries, both within and outside of the hospital setting (Arney, 1982; Davis-Floyd, 1992; Eakins, 1986; Kahn, 1995; Leavitt, 1986; Oakley, 1984; Romalis, 1981; Wertz & Wertz, 1977). There are also numerous bodies of literature on doctors, midwives, nurses, and relationships between these health care providers and their female patients (Danziger, 1986; Eakins, 1986; Fisher, 1986, 1995; Hueston & Rudy, 1993; Kitzinger, 1988; Litoff, 1978; Martin, 1992; Roter & Hall, 1992; Rothman, 1991, 1993; Todd, 1989). However, there is a considerable lack of attention concerning women’s relationships or experiences with doctors who are unfamiliar or strangers to them, how these unfamiliar doctors may impact women’s satisfaction with their births, and what becomes of nurses’ roles within these situations. This chapter focuses on the presence of ‘‘on-call’’ doctors during labors and deliveries, a phenomenon that women in the U.S. have dealt with for generations (since the development of hospital birth) but that is perhaps increasingly common today for all groups of women in the face of managed care (Armstrong, 2000; Hartley, 1999; Pascali-Bonaro & Kroeger, 2004). In many cases, birthing women in the U.S. are attended by a doctor (or doctors, depending on the length of their birth) they have never seen or only met in passing. The doctor(s) they chose, from whom they received their prenatal care, and with whom they often developed rapport, are nowhere in sight at the time of their births. By learning what women’s experiences of ‘‘on-call doctors’’ are, and how birthing women in the U.S. actually think about and describe their experiences with ‘‘on-call’’ doctors, we can better understand their conceptualizations of birth and medical professionals and what causes dissatisfaction during childbirth. That is, we can better understand how certain contexts of birth and medical care determine women’s feelings about their birth experiences (Fox & Worts, 1999; Pascali-Bonaro & Kroeger, 2004). We can also begin to explore how certain health care providers – that is, obstetrical nurses – have potentially critical roles in shaping women’s hospital birth experiences (Corbett & Callister, 2000; Farley & Widman, 2001; PascaliBonaro & Kroeger, 2004). In the face of on-call doctors, obstetrical nurses

Getting Your Own Doctor is ‘‘A Stab in the Dark’’

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may have a more important effect on women’s satisfaction with hospital birth experiences than we realize. This chapter initiates these explorations.

LITERATURE REVIEW U.S. women’s labors and deliveries historically were attended by other women – midwives, community healers, family members, friends, and community members (Davis-Floyd, 1992; Leavitt, 1986; Martin, 1992; Oakley, 1984; Wertz & Wertz, 1977). Beginning in the nineteenth century with the rise of organized medicine, however, male medical practitioners began to gain control over childbirth, usurping power from midwives and lay women. Birth was gradually removed from the home and from women’s control and, starting in the early twentieth century, became primarily a male-controlled, hospital event (Leavitt, 1986; Wertz & Wertz, 1977). Midwives and birthing women themselves became disenfranchised and deskilled in the face of medical experts and a ‘‘technocratic model of birth’’ (Davis-Floyd, 1992; Kitzinger, 1988; Leavitt, 1986; Litoff, 1978; Romalis, 1981). Women’s entry into the hospital setting and the eventual prescription of regular prenatal care with/by physicians have symbolized their lack of control over the entire process of pregnancy and birth (Armstrong, 2000; Davis-Floyd, 1992; Rothman, 1989). Jordan (1980) goes so far as to say that childbirth is defined as a ‘‘medical procedure’’ in the contemporary U.S. The dominant cultural meaning of childbirth which birthing women face is that childbirth is medically dangerous, potentially pathological, and needs to be controlled by an external force. The majority of women themselves currently define childbirth as a process that needs medical supervision and control (Arney, 1982; Jordan, 1980; Martin, 1992; Oakley, 1984). Consequently, Jordan (1980, p. 33) proposes that when a birthing woman is admitted to a hospital, ‘‘decision-making power and responsibility for her state pass from her to hospital personnel and the physician in charge.’’ Studies show that by merely going to a hospital, a woman does often hand over control (Baldwin, 1993; Fullerton & Severino, 1992; Martin, 1992; Rothman, 1991). In fact, in the U.S., handing over power and responsibility for birth to a doctor is an accepted cultural act. While some women may feel comfortable rejecting dominant cultural norms, most individuals are oriented toward adhering to pre-established, accepted social behaviors. Some authors suggest that the ideological models for birth ‘‘mimic class relations of industrial production under capitalism: Women’s bodies are

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seen as more or less efficient machines, women as unskilled workers, and doctors as managers’’ (Fox & Worts, 1999, p. 329; see also Martin, 1992; Rothman, 1993). One of the few decisions women are left with, then, appears to be in choosing a ‘‘good manager’’ who can guide them through the processes of prenatal care and childbirth. Making this decision, however, encourages women to expect and assume that this manager will be present at their births. Whether this doctor is actually present at births and functioning as a birth manager is suspect, as our findings suggest below. Not only do we need to explore further the presence and absence of doctors at births and women’s feelings toward these doctors, but we also need to examine how doctors’ presence or absence can affect the roles that other health professionals have in the birth setting. For instance, Steiber and Krowinski (1990) acknowledge that in most hospitalizations, patients interact more with nurses than any other medical professional (see also Corbett & Callister, 2000; Farley & Widman, 2001; Fisher, 1995; Pascali-Bonaro & Kroeger, 2004). There is evidence that other health professionals besides doctors (such as nurses) perform as much as 80% of office medical practice and a considerable amount of medical work (including the ‘‘management’’ of labor) in the hospital setting as well (Freund, McGuire, & Podhurst, 2003, p. 281). This may be particularly the case in the face of an on-call doctor who is unfamiliar with a woman’s prenatal records or birth plan. Nurses also exhibit less ‘‘role distance’’ from the patient than the doctor traditionally does (see Goffman, 1961, for a discussion of role distance; see also Farley & Widman, 2001; Fisher, 1995; Matthews & Callister, 2004; Rinker, 2000). While doctors and patients in consultation often interpret complaints and their causes differently (causing contestation to arise), nurses are more apt to agree with patients’ complaints as well as the causes (Farley & Widman, 2001; Fisher, 1995; Matthews & Callister, 2004). Fisher (1995, p. 193) notes that doctors ‘‘consistently revivify their institutional authority,’’ whereas nurses do not. Turner (1995) also discusses doctors’ protection of their institutional authority. Fisher (1995, p. 193) states that ‘‘the nursing encounter is more fluid, moving between positions that reinscribe and dismantle the asymmetry usually associated with the provider– patient relationship.’’ Rinker (2000, p. 100) similarly notes that nurses have the power and ability to ‘‘humanize’’ the birth experience (see also Fenwick, Barclay, & Schmied, 2001). Matthews and Callister (2004) report nurses greeting birthing women with expressions such as, ‘‘This is so exciting! How long have you been having contractions?’’ Because of their support, encouragement, and continuity of their care, nurses are therefore the health care providers most respected by a lay public (Freund et al., 2003; Matthews

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& Callister, 2004). Bramadat and Dreidger (1993) mention that the development of rapport between nurses and birthing women is not unusual, and describe how many women look to nurses as a source of support, stability, and authority during their childbirth experiences (see also Fisher, 1995; Steiber & Krowinski, 1990). Fox and Worts (1999) suggest that women who secure nurses’ and other hospital staff’s support during birth actually report more satisfaction with birth experiences overall than those who do not garner such support. As mentioned, there has been considerable research into women’s experiences of childbirth in the hospital setting. Yet there is little to no research on the doctors who are present or absent in the hospital birth setting and how this may affect birthing women and other health professionals present at births. This research, therefore, deals with an unexplored aspect of hospital birth experiences and should illustrate to readers that there are many contexts of the birth experience that are still worth of query.

Analyzing Women’s Accounts and Conceptions of their Birth Roles: A Conceptual Framework Research by Marvin Scott and Stanford Lyman (1968) on ‘‘accounts’’ grounds this analysis of women’s birth narratives. These scholars define ‘‘accounts’’ as ‘‘linguistic devices employed whenever an action is subjected to valuative inquiry’’ (1968, p. 219). Such devices are a crucial element, Scott and Lyman (1968, p. 219) state, in maintaining the social order since they ‘‘prevent conflicts from arising by verbally bridging the gap between action and expectation.’’ Thus, an account is ‘‘a statement made by a social actor to explain unanticipated or untoward behavior – whether that behavior is [her] own or that of others, and whether the proximate cause for the statement arises from the actor [her]self or from someone else,’’ (Scott & Lyman, 1968, p. 220). In this study, respondents were trying to make sense of the contradictory experiences they had with on-call doctors. Women attempted to ‘‘justify’’ or ‘‘excuse’’ why their actual experiences did not meet their expectations, and thus provided an ‘‘account’’ of their births (see Scott & Lyman, 1968, for a discussion of justifications and excuses as types of accounts). A second piece of research that provides the basis for this analysis is Ralph Turner’s work on role-taking and role-making – what he calls the differences between ‘‘conformity’’ and ‘‘process’’ (1990). A discussion of roles helps to tease out the experience women have in the face of an on-call doctor. Turner (1990, p. 86) discusses how roles – we can define roles here as

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‘‘meaningful groupings’’ of behaviors to be acted out within a certain interaction or relationship – exist ‘‘in varying levels of concreteness and consistency, while the individual confidently frames her behavior as if they had unequivocal existence and clarity.’’ In other words, there are few roles that exist in such concreteness that we know how to act in every situation. This idea becomes important in a discussion of childbirth, for women formulate ideas of the roles and/or expectations of themselves and others during prenatal care, which may or may not play out in their childbirth experiences. Turner (1990) discusses a process of ‘‘role-making’’ as different and more complex than simple ‘‘role-taking,’’ and posits that more opportunities for role-making are available than we might think. In other words, individuals do not just take a role and conform, but rather formulate or modify each role to fit their needs in each situation. Confronted by an unfamiliar doctor, then, women may have to modify the roles they were planning on taking and, in a sense, start over in conceptualizing their roles in the birth process. Throughout the rest of this chapter, we utilize these social–psychological concepts to frame the presentation and discussion of findings. While we realize that there are other conceptual frameworks that would prove helpful in analysis of the presence of on-call doctors at hospital birth experiences, and while existing perspectives may not be able to help us analyze all parts of women’s narratives, we utilize this particular framework to jumpstart our analysis and knowledge of this phenomenon. Other researchers should make use of other theoretical lenses (and develop their own lenses) to analyze the presence of on-call doctors at hospital births.

METHOD Sample Between September and December 1996, the first author conducted 19 indepth interviews with 19 women in a Mid-Atlantic state about their childbirth experiences.1 The sample was secured through ‘‘snowball’’ or purposive sampling procedures. Contacts with respondents were made through mothering organizations, breastfeeding support organizations, childcare centers, registered nurses, pediatricians, as well as the use of well-placed flyers and word of mouth. Most interviews were scheduled in person or via telephone, although a few appointments were made via e-mail. Most respondents were interviewed in their homes, but three were interviewed in more neutral

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locations (e.g., a bookstore and a campus conference room). Interviews lasted between one and two-and-a-half hours. With women’s permission, interviews were audiotaped with a hand-held tape recorder and transcribed, to insure greater accuracy of the interview data. All women were assured that their interviews would remain confidential, per the guidelines of the university’s institutional review board (IRB). All interviewees had given birth within the last year and a half prior to the interview; that is, women in this study gave birth sometime between Fall 1995 and Summer 1996. According to women’s reports, thirteen were determined ‘‘low-risk’’ during their prenatal care by their doctors; the remaining six women reported being diagnosed as ‘‘high-risk’’ by their doctors during prenatal care, having some complication before or during their pregnancy that could potentially affect labor and delivery (e.g., high blood pressure, gestational diabetes, or a previous Cesarean). Seventeen out of nineteen women were non-Hispanic White or European American; only one African American and one Asian American woman agreed to be interviewed in this pilot study. All except for one respondent were married. The age of interviewees ranged from 19 to 36 years, with the majority (10) in their thirties. Almost all (17) hospital women had attended at least one year of college. Only one-third (6) of the women interviewed had family incomes of less than $50,000 a year. More than half (11) of these women did not work outside of the home at the time of the interview. Most women (13) resided in suburban areas on the outskirts of a Mid-Atlantic city. For only seven of these women was this their first birth experience; thus, the majority were choosing the hospital setting for the second or third time (for a larger discussion of methods and the ‘‘choice’’ of setting or doctors, see Dillaway, 1997). Nonetheless, data were collected only on their most current birth experience.2 Respondents were limited to those women who were willing to participate and volunteer. Although the first author had no difficulties finding women to interview, the data collected automatically acquired a self-selection bias. By noting this, the fact that the majority of the respondents have higher educational levels and professional careers, and are from a European American, middle-class background is acknowledged; this is often a bias in qualitative research because of the difficulties in recruiting people of color and individuals of disadvantaged economic locations (Weber Cannon, Higginbotham, & Leung, 1991). Most attempts at increasing diversity within the sample were indeed unsuccessful and, therefore, we are unable to generalize our results across racial–ethnic or economic locations. We speak to the issue of women’s social location again in our conclusions. In addition, because the first author initially had difficulty getting women to agree

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to participate in interviews, she allowed five women with babies over 12 months in age into the study (with the oldest being 17 months at the time of the interview). Because these women had birthed over a year in advance, their memories of their birth experiences may be shakier than those who had birthed more recently. While this is another bias in the sample, the presence of on-call doctors at their births seemed to be a fairly poignant memory for all despite how long it had been since their births.

Instrument A semi-structured interview guide formed the basis for all interviews. The first author used these interview questions as a frame for all interviews, but probed further and/or skipped questions completely when appropriate. Interview questions revolved around several main themes: who was present at the birth, issues of control, and authority over the birth (i.e., who took responsibility for what during labor and delivery), how they chose their doctors and birth settings, what their expectations of the birth were, satisfaction with the birth experience, the extent of their education about childbirth, their perceptions of other birth attendants and birth settings, familial support, and thoughts about how they might alter their expectations for future birth experiences. Before asking any specific questions, the first author began each interview by asking them first to ‘‘tell the story of their birth’’ so that they could formulate their own descriptions and categories before any was imposed. This strategy proved useful, in that giving women a chance to tell their own stories up front allowed them to establish the tone and flow of their interviews early on. Much of the information presented in this chapter comes from this initial question and a followup question about who was present at their labor and delivery. Later questions about whether they were satisfied with the course of the labor and how they felt about their births also garnered the data presented in this analysis. Since there was no question on the interview schedule that dealt specifically with the on-call doctor experience, all information presented in this chapter was gathered from volunteered comments and unprompted descriptions of experiences. Information on experiences with on-call doctors was not something the first author expected to find (or had even contemplated), because there is no previous literature on the presence of this medical practitioner at births. Nonetheless the presence of this figure appeared to be a very prominent issue in most women’s mind. It was only after the first author recognized a pattern within women’s comments that we began to think about and analyze the presence of this person.

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Analysis During the course of data collection, the first author took basic memos on the main themes in women’s discussions after each interview. While memoing and transcribing audiotapes from early interviews, the first author began to develop categories and codes for the main ideas that were recognized. After transcription, the first author then went through each interview thoroughly, developing more specific coding categories. Once general analytic codes were developed, color-coded folders were created to hold interview quotes that related to a general code (for instance, ‘‘who was present at birth,’’ ‘‘expectations for birth,’’ ‘‘satisfaction with birth,’’ ‘‘choice of birth setting,’’ or ‘‘feelings about birth’’). Then interview quotes in each of these folders were recoded to focus in on specific topics, such as ‘‘on-call doctors.’’ This chapter represents an in-depth analysis of interview quotes that relate to the presence and influence of an ‘‘on-call doctor.’’ Even though we use an existing theoretical perspective to frame the findings, the first author maintained an inductive approach throughout data collection, coding, and initial analysis (Fonow & Cook, 1991; Strauss & Corbin, 1990). It was only after data collection and analysis that we realized that the first author’s analytic strategies paralleled a social–psychological perspective; thus we applied this paradigm to the findings.

FINDINGS AND DISCUSSION Women cited many ways in which they chose their doctors for prenatal care and childbirth. A few women who moved to this area right before they became pregnant or during their pregnancy were referred to their doctors by doctors practicing in other states. Most women, however, went on recommendations of friends, family members, or co-workers. Only when women had a bad experience with a doctor did they steer away from these referrals and seek out a doctor of their own choosing. Many of these women had been going to the same doctor for annual examinations for years. Some went out of their way to remain with their doctors even when their health insurance policies changed and their doctors were no longer covered. Three interviewees were willing to pay the entire physician fee themselves in order to feel comfortable with the doctors that delivered their babies. Thus, women in the sample were likely to stick with familiarity and desired a connection to the doctors they chose for prenatal care and their future

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births. Once in labor, however, women were not always attended by the doctors they chose. We explore this issue in detail below. Of the 19 women who gave birth in a hospital, only 6 women (32%) were attended by their chosen doctor at some point during their labor without planning it specifically (and even these women often had more than one doctor through the course of their labor). Two additional women scheduled Cesarean sections and one woman scheduled an induction specifically around their doctors’ schedules. Another woman started her labor at home, called the hospital to find out when her doctor was on call, and then waited until he was on call before she was admitted, despite the fact that she was in the more advanced stages of labor: I called in the night before, and this guy I never met before was on call, and he was a real jerk on the phone to me, and I decided that if I could possibly hold out, I would prefer not to go y even though he said, ‘‘Well, you might as well come in anyway, I’m already busy here tonight.’’ And I thought, ‘‘That’s a nice attitude, I don’t think I’ll come in, thank you,’’ and I was hoping that the next morning [the doctor on call] would be someone I liked. [Asian American, first baby]

By waiting until her doctor was indeed on call, this woman offered considerable resistance in the face of established patterns of medical organization, but this type of action was rare among the women interviewed. The nine remaining women (47%) were not attended by their chosen doctor at all during labor and delivery. Some women had never seen the oncall doctor before the onset of labor: At the actual birth, there was a Dr. [Name] that nobody had ever heard of. Even the attending nurse, the nurse that was in delivery, had never seen him before y We have never been able to track him down to find out where he came from or who it was. It must have been [a] resident from the emergency room y now all three of my children were delivered by doctors I had never met, although in all three cases I tried very desperately for that not to happen y [European American, third baby]

Other women had been required to complete ‘‘rounds’’ during their prenatal care, so they had at least met doctors who might be covering for theirs; these ‘‘rounds,’’ as many women called them, usually consisted of a short, 10–15 minute appointment, in which women essentially had enough time to put a name with a face. According to respondents, this appointment was not long enough to build rapport with this doctor, or to begin building expectations of roles during births, in the event that another doctor would cover for their own. Thus meeting these doctors for one quick appointment did not lead women to be comfortable with other doctors in the hospital setting; they still desired and expected their chosen doctors. One woman voiced her

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particular dismay in not getting her doctor: I was disappointed that she [the chosen doctor] wasn’t there, but I know the reality of me having my baby and her being there was kind of a stab in the dark [emphasis added]. There was just a chance. [European American, first baby]

After having on-call doctor experiences, two other women interviewed also contemplated whether they should have expected their chosen doctors to attend their births. One woman explained that whether you get your doctor depends on how many people cover [for that doctor] y [Y]ou got like three or four other people covering for your doctor, and so what are your chances of your doctor being on call when you go into labor? y Probably not [high]. [European American, second baby]

Similarly, a second woman spoke to this issue: You really have to pick the group [of doctors, rather than an individual doctor] and you have to be prepared, unless you have a scheduled c-section or unless [the doctor] schedules you to go in and be induced, that you’re gonna have to be happy with one of the six [i.e., in her case, six doctors practiced together] y It could have been a little more comfortable [if my doctor was there] y [I]t would have been nice to have had a more ‘‘friend’’ [her quotes, gestured, and spoken] experience, you know what I mean? [The oncall doctor] was just there, we didn’t have a lot of conversation, y the other one had a real nice sense of humor and stuff y but [getting your own doctor] might not really be a reality. I don’t know. [European American, second baby]

If getting one’s doctor ‘‘might not really be a reality’’ or might just be ‘‘kind of a stab in the dark,’’ as these women suggest, then why select a specific doctor in the first place? Making the choice for a certain doctor was apparently a long, arduous process that seemed to help many women establish some control over their pregnancy and impending birth experience. Planning for a birth with their doctor, negotiating roles, and discussing the use of some procedures over others seemed to be a very important prenatal activity with which women were involved, according to women’s narratives. As discussed above, all women discussed trying to pick a doctor to whom they were connected via a friend, family member, or other doctor. All interviewees also reported at least verbally planning their births with their chosen doctors during prenatal care appointments. Yet, also based on women’s comments, there is no way of knowing whether their chosen doctors actually wrote detailed plans into chart records and/or whether these written birth plans were transported to the hospital when women went into labor. Most women in the sample believed that the implementation of a birth plan was at least somewhat dependent on their doctor’s attendance at their birth.

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So in the face of these on-call doctors, what happens to these women, their birth expectations, and their birth experiences? The findings below suggest that women adopted certain strategies when dealing with the presence of an on-call doctor figure and characterized their experiences in particular ways. Most reported falling into a traditionally passive, patient role, conforming to others’ decisions about the birth process. A few, however, found alternative ways to negotiate the presence of an unfamiliar doctor.

Falling into a More Traditional, Patient Role: Role-Taking? Some women fell into a pre-established, more traditional, patient role when faced with a new, unfamiliar doctor; they were more inclined to ‘‘take’’ a role that they felt was ‘‘normal’’ or ‘‘accepted’’ in the hospital setting, rather than ‘‘make’’ or modify another role for themselves. Some women accounted for this role-taking by stating that they felt as if they had no rapport with the on-call doctor and therefore could not negotiate the course of their births as well as if their own doctor had been present. Thus some named the presence of this unfamiliar person as the impetus for passive role-taking. One woman explained, [E]verybody pretty much wants someone specific to deliver their baby. Because you have a relationship with that person. Even if you need other doctors, you still have that relationship with that one person that you chose. [European American, first baby]

A discussion of comfort and rapport was quite common in the interviews. Once women figured out that their chosen doctors would not be present, women reported becoming more anxious and less certain of themselves during labor. Consequently, women were less inclined to speak up and/or use any of the decision-making power they might have had. One woman, in discussing her dissatisfaction with her Cesarean birth and her lack of comfort during the experience, justified why she resorted to playing a very passive role in the face of an on-call doctor: I’m the kind of person who when things get overwhelming, I’ll just settle for the easiest thing y if I don’t know how or where to go about doing something, I just put it off or settle for the easiest thing y and I just liked the other (her own) doctor better. [European American, first baby]

Thus women rationalized their passive patient roles, but remained unhappy with their experiences. This woman attempted to deny what she saw as the ‘‘pejorative quality’’ associated with her passivity as well as explain what happened during her birth (Scott & Lyman, 1968, p. 220). She went on to

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say how she gets ‘‘so teary-eyed if [she sees] a delivery on TV’’ because she thinks about how she ‘‘wasn’t able’’ to birth vaginally. She suggested in her interview that she may not have needed to have a Cesarean section, but again felt very uncomfortable and uncertain and thus ‘‘settled for the easiest thing.’’ The account she provides leads us to believe that the lack of comfort or rapport with the on-call doctor induced this woman to feel more secure adopting a passive patient role. Another woman also went on to characterize her experience of role-taking: I’m the type of person that you know, I want to be in control. I don’t want to give some person I don’t even know control over the most important event in my life y I was like, ‘‘Just let me do what I need to do,’’ and you know, that was just not happening y I was just devastated, I felt like a complete failure y And I think that kind of hindered me from really being able to concentrate on what I was doing y you know, I had given up on pushing to get [the baby] out [because] it was just too much to go through. [European American, first baby]

This woman provides another justification for why she began conforming to a more traditional patient role during her labor after being confronted with an on-call doctor. Whether the on-call doctor was responsible for taking away her feelings of control can be debated; this woman may have felt similarly even if her chosen doctor was present. Nonetheless, this woman felt that with an on-call doctor present, her wishes were not first priority and, consequently, she steadily lost control over her own experience. Due to the style and/or authority of the on-call doctor as well as her subsequent lack of control, she was not satisfied with the way her labor proceeded. These examples show how women may plan to adopt one role (according to expectations they developed with their chosen doctors during prenatal care) but conformed to (i.e., ‘‘took’’) a completely different role at the time of birth. The actions of these women demonstrate how it is difficult for many to deal with the presence of an unfamiliar authority figure and the absence of the one medical provider that they may trust.3

Accounting for Things Gone Wrong: Scape-Goating the On-Call Doctor Others blamed an on-call doctor for very specific things that went wrong during their labor or delivery, while at the same time taking a very passive role themselves. Thinking in terms of Scott and Lyman’s analysis of accounts, this would be an example of women providing ‘‘excuses’’ as to why their expectations for birth did not hold true (1968). Interviewees frequently described why on-call doctors were not as competent as their own, chosen

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ones. For instance, one woman blamed her on-call doctor for the fact that her perineum tore during labor: I was disappointed that [my chosen doctor] couldn’t deliver, but I guess [the on-call doctor] was good. The only thing I questioned was that she didn’t do an episiotomy and I tore. And I don’t know if she just didn’t have time, but I think that the time that they decide to do that or not is just when the head crowns, but I don’t know if she felt that I could deliver an 8-pound baby without one! [European American, second baby]

Implicit in this woman’s comment is the fact that if her chosen doctor had been in attendance, that doctor would have done a better job of monitoring the labor, and would have performed an episiotomy. In a sense, even though the on-call doctor’s skill might have been adequate, this woman did not fully trust her ability to fill a doctor’s role and make the ‘‘correct’’ decisions. In addition, this woman’s comment illustrates that she did not desire any decision-making power for herself, and that she trusted the attending doctor to fill the role of decision-maker. She therefore was disappointed when the oncall doctor did not take on full responsibility. The on-call doctor provided a ‘‘scape-goat’’ of sorts for things that went awry (Scott & Lyman, 1968). The question of whether or not this woman actually needed an episiotomy can never be answered, but it is clear that this woman believed that it was necessary and that the on-call doctor should have performed one. A second woman blamed an on-call doctor for the fact that she did not get an epidural until hours after she asked for one: This [on-call] doctor didn’t have y rapport with me, I mean, she was competent and she delivered, but she just didn’t kind of check on me as much [as my chosen doctor would have]. I think that maybe if she had checked up on me more, I would have gotten my epidural faster y because she would have known how uncomfortable I was y I know that the doctors are busy, so she came in when she needed to be there, basically that is the way she looks at it y so, I don’t complain, [but] it would have been nicer if I had had more checking in by her y [European American, second baby]

Although she attempts to rationalize why the on-call doctor did not fulfill her expectations, this woman suggests that an on-call doctor often does not have enough rapport or interest in the birthing woman to make the birth go smoothly. Thus, although women do not always state that a relationship with their chosen doctor is important, it appears that it is. In analyzing levels of rapport with medical providers, we could hypothesize that an on-call doctor might engage in more ‘‘role distance’’ than a physician who was familiar with a woman due to prenatal care visits (Goffman, 1961). Role distance of on-call doctors may facilitate other relationships during the birth experience, such as between nurses and birthing women; this was definitely true for this particular woman. We discuss nurses’ roles in a later section.

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Another woman blamed her on-call doctor for the fact that she had to birth ‘‘naturally’’, that is without an epidural. She felt that since her doctor was not at her labor, no one would listen to her. Thus, she remained without pain medication, despite her constant pleas: I’m not into pain, I wanted an epidural. I spent most of the time screaming, ‘‘I want an epidural! I’m not doing this, I’m going home!’’ I gave birth completely natural with no medication whatsoever, and I was hysterical. Because I did not want that. I screamed the whole time that I wanted my doctor [her emphasis] to get in there. [European American, third baby]

As discussed earlier, this issue of not being heard was magnified in the case of an on-call doctor. Particularly concerning the issue of pain, women felt ignored in their requests for epidurals or felt that their requests were not filled right away. This woman, like the one before her, attributed this to the absence of her own doctor – someone whom she felt would have ‘‘cared more’’ for her well-being.4 Role-Making in the Face of an On-Call Doctor: Re-Negotiation of Roles during Birth Contrary to some ways in which the above women accounted for their experiences, one woman readily modified the role of the ‘‘other’’ (or the oncall doctor), in order to realign her experience with her expectations (see Turner, 1990). Thus, this woman was fully involved in process of ‘‘rolemaking’’ rather than ‘‘role-taking.’’ This woman talked about how, in theory, the on-call doctor should only be following what was already on their prenatal charts – in a sense, not acting as a real doctor, but just as a substitute or someone who fills orders. By thinking of the on-call doctor this way, she was able to assume that her chosen doctor still had control of the situation, even though she was not present. Furthermore, this woman did not have to alter her own role, despite the fact that another doctor was present instead of her own: I might be wrong, but I’m under the assumption that my wishes were put on the chart in the doctor’s office. Because I think [the on-call doctor] knew up front that I was going to want an epidural y I never saw it on my chart, I just assumed because when I was in [my chosen] doctor’s office, she asked me what I expected in the LDR room, ‘‘Did I want medications, did I want drugs, did I want to go natural, what did I want to do,’’ y so I guess I took it for granted that she was writing this stuff down. And they did seem to know when I got to the hospital that I did want an epidural, so that leads me to believe that most of my requests were put down on the chart. So that even if another doctor delivered me, I knew it was going to be a certain way. [European American, first baby]

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This woman, however, was the only one who did not question the behavior or role of the on-call doctor, and only because she deflated the authority that this person had during her birth. She modified her definition of what the doctor [here, the on-call doctor] could do during her labor, and thus was content with her experience for the most part. She legitimized the presence of the on-call doctor not due to the fact that this person was qualified or competent, but rather that this person was only following orders. In her mind, her chosen doctor remained in charge of the labor from afar. Most importantly, however, this woman’s role stayed the same in her eyes. She did not have to alter her own behavior once in the hospital setting. Desiring a medicated, technologically driven birth, this woman worried less about who was present at her birth and more about whether she received procedures in a timely manner. Luckily, expectations were met.

Justifying Why Certain Choices Were Made: Accounting for the Unexpected Although all women did not blame the on-call doctor for specific things that went wrong or alter the role of the ‘‘other,’’ many women justified why they altered their own roles in the face of such an authority figure. Many women voiced their dismay about not delivering ‘‘naturally’’ – in most cases, this referred to birth without pain medication and actually the opposite situation from some of the other women just discussed (thus illustrating the varying expectations of birthing women). Once in labor, hospital women often opted for an epidural to alleviate their pain, and this had not been part of their plan; thus, after the fact, some of these women were disappointed. One woman specifically stated that there was ‘‘no way [she] could make [herself] have [her] baby naturally’’ [European American, first baby]. Their expectations for themselves and for their experience had not held true; they were not able to fulfill the concrete role they had created for themselves or achieve the experience that they planned. Yet, they created a new role and/or at least modified the one(s) they anticipated having during childbirth, in order to deal with the birth process. They re-negotiated their role (as well as that of the doctor and nurses) and developed a new conceptualization of what it meant to give birth (see Goffman, 1990, on the ‘‘Presentation of Self,’’ for a further discussion of how individuals create roles for themselves via the expectations and interpretations of others’ reactions; see also Morris, 1967). For this group of women, it was necessary to justify why they altered their expectations in many cases. Women frequently made comments that

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illustrated attempts to justify choices or actions during birth: [The on-call doctor] suggested Pitocin and then I was very tired, and I just kind of gave in to him, and you know, ‘‘okay, go ahead and start the medicine’’ y If he hadn’t said anything, I probably would have done things differently because [if her own doctor had been there] she would have talked to me more about things, because we had already talked a little bit about what I wanted. [European American, second baby]

Justifications were prevalent throughout women’s accounts of their birth experiences. As this comment illustrates once more, the existence of the on-call doctor provided a perfect justification as to why they had to alter their expectations of themselves and others during labor. Since the on-call doctor was an unknown, she or he was a focus of many women’s birth stories and accounts.

When Nurses Become Important Actors To counteract their anxiety and lack of rapport with a doctor, women often developed relationships with nurses present at their labor, rather than bother communicating with the on-call doctors. Consequently, nurses carried out the role of medical examiner, overseer, labor coach, and in some cases, a temporary friend. Nurses were also the verbalizers and interpreters of the birth. The doctors, especially on-call doctors, were often missing in action until the last few minutes before delivery, and although this is in keeping with Foucault’s (1977) notion of surveillance from afar, women perceived the nurses as being able to assert quite a bit of authority in certain circumstances. Thus, where women perceived themselves as losing some control in the face of an on-call doctor, they often saw the nurse as their proxy for power and control. In refocusing their communication or trust on nurses (versus doctors), women essentially were reformulating their definitions of who could be in control of their births. The nurse took care of the woman, evaluated her progress, stood up for her when she needed something, coaxed the doctor [on-call or otherwise] to come and check on her, and guided her through the most critical stages of labor. Especially when husbands, partners, family, or friends were absent, the nurse adopted the role of sole supporter or friend as well. Only one woman reported having any paid labor support, and thus for most, there were only two sources of social support: those they brought to the birth setting (e.g., family or friends) and nurses on duty. Most women had partners and/or their own mothers in attendance only. Yet even these family members were not always able to provide the type of support women needed. Thus many women discussed nurses as their primary avenue for support.

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Most women whose chosen doctors were not on call reported that they were less satisfied with their experience than they would have been if they could have had their chosen doctor. Yet, in many of these cases, women ended up basing part of their satisfaction with the birth experience on whether or not they trusted the nurses who attended their labors and deliveries, for it was the nurses that spent time with them and monitored their progress, not the doctors. Women in this sample believed that nurses for the most part were on ‘‘their side,’’ and could serve as a buffer between them and on-call doctors (even chosen doctors in some cases): The nurse was the one that, you know, was checking on the monitors and coming in and marking things, and she was the one that was much more frequently in and out of the room y The doctors, when they come in, don’t stay long. They come in, they check you, they want to make sure you’re not crowning or whatever, and then they kind of leave. [European American, second baby]

There was some discussion by women of how obstetric nurses, not doctors, even ended up ‘‘managing’’ births. One respondent believed that this had a lot to do with the fact that the doctor does not ‘‘attend’’ the labor, rather nurses do – as evidenced by this narrative: [The] doctor doesn’t come in until the very end! You don’t see your OB person that’s gonna, like, get the baby. It’s usually the nurse [that you see]. The OB lady, the actual doctor, doesn’t come in until about 20 minutes to a half-hour before you actually deliver. She’s like in and out, because she is delivering other people, [and so] it’s your nurse that is there, helping you breathe and stuff. [European American, first baby]

Although the nurses in this situation did not have the authority to simply order and administer procedures, it did seem that they were more active ‘‘managers’’ of the birth process, and even more importantly, many women desired obstetric nurses to take on this role during their labor. One interviewee believed that the nurse played ‘‘a very important role’’ in the birth: She kept track of how my progression was coming, and did the [machinery] checks, um, she did a couple of internal exams to see how far the head was coming down, y whether I was ready to push y And she told me when to push and when not to. And I think she played a very important role because the hardest part was getting the head to actually come down and crown. And then once the head is there, the rest is kind of easy. [European American, second baby]

On the other hand, those six women who were attended by their chosen doctor did not discuss the nurse’s role in their birth or their rapport with the nurse. Women attended by their own doctor were more likely to base their satisfaction on their relationship with their doctor, the length of labor, and whether they received (or did not receive) certain procedures. Thus,

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according to my sample, nurses’ attitudes or actions during labor seemed important for women if their doctor was absent but less so when a familiar doctor was present.

CONCLUSIONS It is evident that there are various ways of looking back on and interpreting the actions of on-call doctors. Although each woman was relatively happy with the outcome of a healthy baby, there were many discrepancies between their expectations for their own and their doctor’s roles, and their actual experiences. These discrepancies provided an opportunity for them to do one of two things: adopt a traditional patient role or alter their own conception of roles and readjust to the situation. We see each of these actions surface in women’s accounts. Some women discussed how they missed the comfort or rapport that they would have had if their own doctor was present, and how this caused anxiety and uncertainty during the birth. These same women were inclined to talk about their adoption of a more traditional, patient role. Others blamed the on-call doctor for things that they felt went badly, specifically excusing their own lack of control or passivity, and scape-goating the on-call doctor. On the other hand, some talked about their dissatisfaction with the on-call doctor as a way of justifying the contradiction between their expectations and their experience, and as a way of explaining why they adhered to a different role than they originally planned. One felt strongly that the on-call doctor did not have as much authority as her own doctor, and believed that the former was only following orders. No women felt their on-call doctors did an excellent job, or were as qualified or friendly as their chosen one; thus both the knowledge and support abilities of on-call doctors were challenged by birthing women’s narratives. The assumption (upon the part of women and bolstered by interactions with doctors during prenatal care) seemed to be that meeting other doctors during prenatal care was a formality and that, most of the time, they would be attended by their doctors during birth. Not having this doctor attend their labor, thus having their relationship with that doctor and their birth plan fall by the wayside, was not what they expected. This gap between expectations and experience proved to be a determining factor in many women’s satisfaction with the birth experience. This gap between expectations and experience has been documented elsewhere (Dillaway, 1997). However, we know little about the expectations women have for the presence or absence of certain health care professionals

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at their births. The absence of a chosen doctor creates a situation in which rapport is missing and communication is more difficult, and many women begin to second-guess themselves and the birthing decisions that are made. For the most part, the actions of an on-call doctor are interpreted by birthing women as negative, since they expect a chosen doctor at their births. In addition, the presence of an on-call doctor simply compounds anxieties that women already may have about childbirth or the hospital setting. Patients are generally dissatisfied with the ‘‘technological or professional aspects of care’’ and the ‘‘bedside manner’’ of their doctors (Steiber & Krowinski, 1990, p. 14; see also Matthews & Callister, 2004; Zimmerman, Zimmerman, & Lund, 1996), but the presence of an unfamiliar on-call doctor heightens these feelings of dissatisfaction. According to Hartley (1999, p. 88), the expansion of managed care involves a shift away from physician autonomy ‘‘to a system focused on integration’’ – both of physicians themselves, and physicians with other health care entities (e.g., outpatient and inpatient centers). Understandably, then, it is a rare doctor who owns their own practice today and takes responsibility for all of their patients 7 days a week, 24 hours a day. It is often more profitable and safer (in terms of malpractice and other legal issues, as well as economic costs and greater referral networks) for individual health care providers to operate joint offices with others like them. Managed care and Health Maintenance Organizations (HMOs) often provide a context that encourages doctors to work together within one practice to recruit clients (Freund et al., 2003; Hartley, 1999; Zimmerman et al., 1996). Therefore, although women technically select a doctor to guide them through pregnancy and birth, many women are not familiar with the doctor who delivers their baby. Ultimately this means that many women will be dissatisfied with the care they receive from these doctors and, perhaps, also dissatisfied with their birth experience as a whole. There are many ways researchers, doctors, nurses, and policymakers can begin to remedy this situation. As most doctors today are not on-call 7 days a week, 24 hours a day, and practice in loose groups, we should advocate for the standardization of more detailed, written birth plans by prenatal care doctors and their patients, to prepare for such an on-call situation. In addition, we should better prepare women for the possibility that they will not be attended by their own doctor during actual labor and delivery. Alternatively we should encourage women to seek out practices with fewer doctors. At base, if women’s satisfaction is determined in part by their expectations, then more attention needs to be paid to (1) what women’s expectations are, (2) whether these expectations match the reality of hospital

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birth settings, and (3) how to align women’s expectations with their actual birth experiences. Furthermore, nurses – by women’s very own words – are very important for maintaining women’s comfort levels and medical progress during hospital births. Nurses are in a unique position and may be able to recognize the presence of an on-call doctor quite quickly. Since women begin to rely on nurses who are present at their births for many levels of expertise and support – in a sense, to compensate for the lack of rapport with an on-call doctor – these situations provide nurses with an opportunity to provide patients with comprehensive medical and emotional care. Consequently nurses are empowered by women in on-call doctor situations due to the absence of other trustworthy medical figures, and can become the medical professionals responsible for greater satisfaction in childbirth. As such, nurses can smooth the current contradictions between women’s expectations and their actual birth experiences in hospital settings. The role of the obstetric nurse, then, is extremely important for understanding how or why birthing women might remain satisfied in the face of unfamiliarity. According to Rinker (2000, p. 105), nurses’ efforts to ‘‘humanize’’ hospital birth ‘‘have a long history.’’ Rinker (2000, p. 105) calls for contemporary obstetric nurses to ‘‘not become so focused on techniques and routines that they forget the patients’ needs for comfort and support.’’ In on-call doctor situations, Rinker’s call is enhanced since nurses become an even more integral part of the obstetric team. It has been suggested that health care today is more of a ‘‘business’’ than anything else, and thus, economic interests often take precedence over the patients’ ‘‘best interests’’ (Fisher, 1986; Freund et al., 2003; Hartley, 1999; Zimmerman et al., 1996).5 We must consider this possibility as we watch women birth with on-call doctors present. In addition, we should explore whether the presence of an on-call doctor is more likely at certain types of hospitals. In this pilot study, women birthed in two different hospital settings: a large, suburban teaching hospital, and a small, urban community hospital. Of the nine women who were attended by on-call doctors, eight birthed at the teaching hospital. Thus perhaps the on-call doctor phenomenon is a larger issue at teaching hospitals than otherwise. While the first author interviewed women who birthed in these two hospital settings and recorded basic data about their birth setting, interview data does not adequately deal with the linkages between the presence of on-call doctors and the types of hospital settings. Thus we hint at the possibility that on-call doctors may be more likely at teaching hospitals but leave this for other researchers to explore and confirm.

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Moreover, Armstrong (2000) suggests that certain women – specifically, low-income women or women with public health insurance – may be more likely than economically advantaged women to get on-call doctors during pregnancy and birth experiences. Because of the types of places they seek care (e.g., clinics serving low-income individuals and large receiving hospitals that depend on public funding) and their insurance circumstances, they may be denied the ability to specifically choose a specific doctor for their prenatal care and are more likely to be attended by an unfamiliar doctor during labor and delivery. Nelson (1986) was one of the first to hint that class locations affect birthing experiences, but the effects of class and other social locations (such as race) need to be explored further. Because our analysis is based on a small, biased, exploratory sample, we cannot conclude about the situations of low-income women and/or women of color, but both the presence of on-call doctors and women’s experiences with them most likely vary with social locations. This is an area begging for future research. Judging from the complexity of the on-call doctor phenomenon, researchers and health care providers have a daunting task ahead of them if this problem is to be understood and rectified. There is ample room for obstetric nurses to be more involved with actual birth experiences, for other changes in medical routine, and for more academic research on a variety of medical providers and their different impacts on women’s satisfaction with hospital birth experiences. There is also a need for the utility of social psychological perspectives to be explored further, as Lamaze International (2000) describes the birth experience as a ‘‘significant event of powerful psychological importance in a woman’s life.’’

NOTES 1. This is a sub-sample of a larger sample of 38 women; the larger sample included these 19 women as well as 19 women who chose to birth in a freestanding birthing center. The purpose of the larger study was to compare women’s choices for and experiences in two separate birth settings. 2. We realize that the number of births women have experienced may influence their experiences with on-call doctors and therefore, when quoting from interviews, we signify the number of births women have had. However, because this is such a small sample, we are wary of analyzing these variations in full and hope that future researchers will take up this topic and explore it further. 3. It is possible that some women, in ‘‘making’’ rather than ‘‘taking’’ roles, actually might become more aggressive in the face of an on-call doctor. Thus the absence of their chosen doctor could facilitate greater self-advocacy and agency within themselves. Hypothetically, once they realize that they cannot depend on anyone else to

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secure certain procedures or act in certain ways during their labor, they begin to depend more on themselves. Although this sample of women did not report this type of agency and concentrated on the more negative consequences of the presence of oncall doctors, this phenomenon is something to consider in future research. 4. Here there is also a question of whether individual women knew about the procedures (like epidurals or episiotomies) that they were requesting. Although all women reported learning the basic information about procedures, anesthesia, and instrumentation during birthing classes (usually run by the hospital), they were not certain about specific details, such as when epidurals or episiotomies could be given, or why certain procedures were denied at certain times. Although all women seemed to grasp basic definitions of Cesarean sections, epidurals, episiotomies, suction and vacuum procedures, and forceps, many were still unclear (even after completing a birth) about how each procedure or medication worked and assumed that they did not need to know very much about them. That is, most women did not have a full understanding of all procedures. A more detailed study of birthing classes and information provided to women is necessary for complete understanding of the links between education/knowledge, expectations, and satisfaction during childbirth. 5. This was suggested by helpful audience members during a presentation of an earlier draft of this chapter in August 1998.

ACKNOWLEDGMENTS An early draft of this chapter was presented at the Society for the Study of Symbolic Interaction meetings in August 1998; the authors thank audience members for helpful comments and questions. The authors also thank Gerald Turkel, Kathleen Turkel, Betsy Cullam-Swan, Linda Beth Tiedje, Rita Gallin, Janet Hankin, Jennie Jacobs Kronenfeld, and anonymous reviewers for insightful suggestions on previous drafts. Finally, the authors are indebted to the women who participated in this research project; without them, we would not have been alerted to the issues surrounding on-call doctors and, therefore, they alone make this chapter possible.

REFERENCES Armstrong, E. (2000). Lessons in control: Prenatal education in the hospital. Social Problems, 47(4), 583–605. Arney, W. R. (1982). Power and the profession of obstetrics. Chicago, IL: The University of Chicago Press. Baldwin, R. (1993). How can you help empower women in birth? The Newsletter of the Informed Home Birth/Informed Birth and Parenting Organization, (Spring), p. 1. Bramadat, I., & Dreidger, M. (1993). Satisfaction with childbirth: Theories and methods of measurement. Birth, 20(1), 22–29.

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Corbett, C. A., & Callister, L. C. (2000). Nursing support during labor. Clinical Nursing Research, 9(1), 70–83. Danziger, S. K. (1986). Male doctor–female patient. In: P. Eakins (Ed.), The American way of birth (pp. 119–141). Philadelphia, PA: Temple University Press. Davis-Floyd, R. (1992). Birth as an American rite of passage. Berkeley, CA: University of California Press. Dillaway, H. (1997). Choices in childbirth: Women’s hospital and birthing center experiences in a Mid-Atlantic state. Unpublished Masters’ thesis, University of Delaware, Newark. Eakins, P. (Ed.) (1986). The American way of birth. Philadelphia, PA: Temple University Press. Farley, C., & Widman, S. (2001). The value of birth stories. International Journal of Childbirth Education, 16(3), 22–25. Fenwick, J., Barclay, L., & Schmied, V. (2001). ‘‘Chatting’’: An important clinical tool in facilitating mothering in neonatal nurseries. Journal of Advanced Nursing, 33(5), 583–593. Fisher, S. (1986). In the patient’s best interests: Women and the politics of medical decisions. New Brunswick, NJ: Rutgers University Press. Fisher, S. (1995). Nursing wounds: Nurse practitioners, doctors, women patients, and the negotiation of meaning. New Brunswick, NJ: Rutgers University Press. Fonow, M. M., & Cook, J. (1991). Beyond methodology: Feminist scholarship as lived research. Bloomington, IN: Indiana University Press. Foucault, M. (1977). Discipline and punish: The birth of a prison. New York, NY: Vintage Books. Fox, B., & Worts, D. (1999). Revisiting the critique of medicalized childbirth: A contribution to the sociology of birth. Gender and Society, 13(3), 326–346. Freund, P., McGuire, M., & Podhurst, L. (2003). Health, illness, and the social body: A critical sociology (4th ed.). Englewood Cliffs, NJ: Prentice Hall. Fullerton, J., & Severino, R. (1992). In-hospital care for low-risk childbirth. Journal of Nurse Midwifery, 37, 331–347. Goffman, E. (1961). Encounters: Two studies in the sociology of interaction. Indianapolis, IN: Bobbs-Merrill. Goffman, E. (1990). The presentation of self in everyday life. In: D. Brissett & C. Edgley (Eds), Life as theater: A dramaturgical source book (pp. 129–140). New York, NY: Aldine de Gruyter. Hartley, H. (1999). The influence of managed care on supply of certified nurse-midwives: An evaluation of the physician dominance thesis. Journal of Health and Social Behavior, 40(1), 87–101. Hueston, W., & Rudy, M. (1993). A comparison of labor and delivery management between nurse midwives and family physicians. The Journal of Family Practice, 37(5), 449–454. Jordan, B. (1980). Birth in four cultures. Montreal, Ont: Eden Press. Kahn, R. P. (1995). Bearing meaning: The language of birth. Chicago, IL: University of Illinois Press. Kitzinger, S. (1988). The midwife challenge. London: Pandora Press. Lamaze International (2000). Lamaze philosophy of birth. Retrieved March, 2005, from http:// www.lamaze.org/2000/about lamaze.html Leavitt, J. W. (1986). Brought to bed. New York, NY: Oxford University Press. Litoff, J. B. (1978). American midwives: 1860 to the present. Westport, CT: Greenwood Press. Martin, E. (1992). The woman in the body: A cultural analysis of reproduction (2nd ed.). Boston, MA: Beacon Press.

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Matthews, R., & Callister, L. C. (2004). Childbearing women’s perceptions of nursing care that promotes dignity. Journal of Obstetric Gynecologic and Neonatal Nursing, 33(4), 498–507. Morris, C. W. (Ed.) (1967). Works of George Herbert Mead, volume I: Mind, self, and society from the standpoint of a social behaviorist. Chicago, IL: University of Chicago Press. Nelson, M. (1986). Birth and social class. In: P. Eakins (Ed.), The American way of birth (pp. 142–174). Philadelphia, PA: Temple University Press. Oakley, A. (1984). The captured womb: A history of the medical care of pregnant women. New York, NY: Basil Blackwell. Pascali-Bonaro, D., & Kroeger, M. (2004). Continuous female companionship during childbirth: A crucial resource in times of stress or calm. Journal of Midwifery and Women’s Health, 49(4 Suppl 1), 19–27. Rinker, S. (2000). The real challenge: Lessons from obstetric nursing history. Journal of Obstetric Gynecologic and Neonatal Nursing, 29(1), 100–106. Romalis, S. (Ed.) (1981). Childbirth: Alternatives to medical control. Austin, TX: University of Texas Press. Roter, D., & Hall, J. (1992). Doctors talking with patients/patients talking with doctors: Improving communication in medical visits. Westport, CT: Auburn House. Rothman, B. K. (1989). Recreating motherhood: Ideology and technology in a patriarchal society. New York, NY: W.W. Norton. Rothman, B. K. (1991). In labor: Woman and power in the birthplace. New York, NY: W.W. Norton. Rothman, B. K. (1993). The active management of physicians. Birth, 20(3), 158–159. Scott, M. B., & Lyman, S. (1968). Accounts. American Sociological Review, 33(1), 46–62. Steiber, S., & Krowinski, W. (1990). Measuring and managing patient satisfaction. Washington, DC: American Hospital Publishing. Strauss, A., & Corbin, J. (1990). Basics of qualitative research: Grounded theory procedures and techniques. Newbury Park, CA: Sage Publications. Todd, A. D. (1989). Intimate adversaries: Cultural conflict between doctors and women patients. Philadelphia, PA: University of Pennsylvania Press. Turner, B. S. (1995). Medical power and social knowledge (2nd ed.). London: Sage Publications. Turner, R. (1990). Role taking: Process vs. conformity. In: D. Brissett & C. Edgley (Eds), Life as theater: A dramaturgical source book (pp. 85–100). New York, NY: Aldine de Gruyter. U.S. Census Bureau. (2003). Table no. 83: Live births, deaths, marriages, and divorces: 1950 to 2001. Statistical abstract of the United States (pp. 72). Washington, DC: U.S. Census Bureau. Weber Cannon, L., Higginbotham, E., & Leung, M. (1991). Race and class bias in qualitative research on women. In: J. Lorber & S. Farrell (Eds), The social construction of gender (pp. 237–248). Newbury Park, CA: Sage Publications. Wertz, R. W., & Wertz, D. C. (1977). Lying-in: A history of childbirth in America. New Haven, CT: Yale University Press. Wolfe, S. M. (Ed.), (1995). Delivering a better experience: Nurse-midwives provide an important alternative to obstetric care. Health Letter, 11(11), 1–7. Washington, DC: Public Citizen Health Research Group. Zimmerman, D., Zimmerman, P., & Lund, C. (1996). The healthcare customer service revolution: The growing impact of managed care on patient satisfaction. Chicago, IL: Irwin Professional Publishing.

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SECTION III: ELDERLY CARE ISSUES

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DREAMS OF HOT TOAST AND SMILING NURSES: TOWARD A MODEL OF PATIENT-RESPONSIVE CARE IN NURSING HOMES Eva Kahana ABSTRACT The problems of providing high-quality care in nursing homes have been extensively documented. Accounts of residents, close family members, and qualitative researchers have described feelings of desperation, anomie, and hopelessness, which accompany the last years, months and days of those reluctantly finding themselves in institutional facilities at the end of their days. However sociologists have, thus far, paid little attention to the actual and potential impact of families in breaking through the barriers set up by institutional life and in enhancing the responsiveness of care in nursing homes. This chapter aims to fill this gap.

INTRODUCTION The problems of providing high-quality care in nursing homes have been extensively documented (General Accounting Office, 1999; Kahana, 2006; Access, Quality and Satisfaction with Care: Concerns of Patients, Providers and Insurers Research in the Sociology of Health Care, Volume 24, 109–133 Copyright r 2007 by Elsevier Ltd. All rights of reproduction in any form reserved ISSN: 0275-4959/doi:10.1016/S0275-4959(06)24006-7

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Vladeck, 1980). Nursing home regulatory efforts have generally been unsuccessful in assuring high-quality care (Angelelli, Mor, Intrator, Feng, & Zinn, 2003; Walshe, 2001). Even when long-term care facilities meet high standards of professionalism and offer state-of-the-art treatment programs, the day-to-day experience of residents can be fraught with unhappiness and even despair (Savishinsky, 1991). Accounts of residents, close family members, and qualitative researchers have documented feelings of desperation, anomie, and hopelessness, which accompany the last years, months and days of those reluctantly finding themselves in institutional facilities at the end of their days (Bennett, 1980; Diamond, 1992). Nevertheless, the perspective of these largely ethnographic studies seldom find their way into quantitative research, published in major sociology journals or into influential directives for policy and practice. Medical sociologists often fail to bring insights from sociological theory to illuminate failures in our system of care as they impinge on our most vulnerable citizens (Pescosolido & Kronenfeld, 1995). Elderly residents of nursing homes typically suffer from multiple chronic illnesses, disability and cognitive impairment (Kane, Kane, & Ladd, 1998). Institutional placement also involves major social components and generally comes about after families are no longer able to care for elders in the community (Kapp, 2003). Families as well as the elderly, attempt to delay institutional placement as long as possible (Stone & Short, 1990). Once the move to a nursing home becomes inevitable, families continue to take an interest in the older adult. However, the social world of institutions is difficult to comprehend and penetrate. Sociologists have been in the forefront of offering an understanding of the social isolation of institutionalized persons. Goffman’s classical work on asylums has expounded on the barriers between the outside social world and the inside world of the total institution (1961). These barriers, in the case of nursing homes, manifest themselves in limited involvements by representatives of the outside world; family members, friends and neighbors, volunteers, and physicians who had previously provided emotional support and instrumental care to the resident (Vladeck, 1980). The social organization of care in nursing homes has also been explored within sociological frameworks, elucidating the meaning of institutional life for both staff and ‘‘clientele’’ (Agich, 1993; Gubrium, 1975, 1993). Recent research on longterm care has on the one hand focused on policy and financing issues (Stone, 2006) and on the other has explored some specific strategies for improving quality of care in nursing homes (Noelker & Harel, 2001; Weiner & Ronch, 2003). However, sociologists have, thus far, paid little attention to the actual

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and potential impact of families in breaking through the barriers set up by institutional life and in enhancing the responsiveness of care in nursing homes. This chapter aims to fill this gap. My own early work has built on frameworks offered by Goffman (1961), Kleemeier (1965) and Bennett and Nahemow (1965) to consider barriers to humane treatment of the aged in institutions (Kahana, 1973). After numerous expose´s of depersonalization and humiliation experienced by nursing home residents (Diamond, 1992) there has been growing research interest in efforts to improve quality of care in nursing homes, both through regulation and through the introduction of therapeutic program initiatives (Weiner & Ronch, 2003). In our prior work, we have reviewed a broad array of positive programs, which have been implemented by high-quality nursing homes to improve both quality of care and quality of life for residents. Such programs range from restraint reduction to specific efforts to reduce incontinence and falls (Kahana, Kahana, & Chirayath, 1999a). Our discussion of innovative programs in nursing homes in prior publications was based on an extensive review of the scientific literature. Yet, there remains a fundamental disconnect between documented professional achievements in care provision and the lived experience of those ‘‘living and dying’’ in nursing homes (Gubrium, 1975). In order to make improvements in care, which will translate in truly enhanced quality of life for nursing home residents, we need to focus on identifying and eliminating the barriers which currently exist to making care patient-centered (i.e., responsive to patient needs) (Stewart et al., 1995). As we recognize the structural barriers existing in nursing homes for linking residents to the outside world, we must turn our attention to opportunities presented by family members who can serve as a readily accessible link to the outside world. Their proactive efforts to penetrate walls of the institution can change the lived experience of residents. Research on family involvement in the care of institutionalized older adults has gained both in prevalence and sophistication in recent gerontological inquiry. Studies have documented greater psychological well-being among institutionalized aged who receive more visits from families (Friedemann, Montgomery, Maiberger, & Smith, 1997). Continued visitation and involvement in hands-on caregiving has also been found to benefit family members who can sustain intimacy in their relationships with their loved one (Gaugler, Anderson, Zarit, & Pearlin, 2004). However, there is also evidence of negative associations between family involvement in care and satisfaction with institutional services for families of institutionalized elders (Tornatore & Grant, 2004). These findings have been attributed to the less-than-welcoming

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attitudes by direct care staff toward family involvement (Russell & Foreman, 2002). It has been argued that more involved caregivers are dissatisfied because they obtain a close-up view of problems in quality of nursing home care, and feel excluded by staff from an active caregiving role (Levy-Storms & Miller-Martinez, 2005). The family advocate can contribute to enhancing care of the patient through multiple pathways. These transcend the value of visitation or involvement in helping with care related to activities of daily living (Kellett, 1999). Advocacy by family caregivers, which is the focus of this essay, may provide special benefits based on the family advocate’s special knowledge of the patient’s values and preferences, health care history and the strong emotional bonds that exist among kin (Krause, 2006). The medical sociology and gerontology literature have primarily explored one outer layer of the ‘‘partnership’’ between institutionalized elders, family caregivers, and institutional staff. This layer refers to the relationship between family visitation and reaction to such visitation by staff on the one hand, and institutionalized older adults on the other. However, deeper layers of this potential partnership and the meanings of family advocacy for enhancing patient-responsive care have not as yet been explored. Irving Zola (1982), in his classic work, ‘‘Missing Pieces: A chronicle of living with a disability,’’ has articulated the importance, for sociological inquiry, of giving authenticity to the lived experiences of patients in our social world. Following in Zola’s footsteps, in this chapter I offer an indepth, first-hand view of family advocacy through a participant-observer’s narrative. In most of the literature on caregiving to institutionalized elders only the voices of caregivers and institutional staff are reflected. While my own narrative is also offered through a caregiver’s eyes, I wanted to put Sari, the elderly resident who defines the problematique of this essay center stage, by giving voice, to the extent possible, to her perspectives, even through the veil of cognitive impairment. It is my hope that articulation of a resident-centered view of the ‘‘could be’’ partnership between residents, staff, and family will spur on quantitative research in this area. To help provide some conceptual foundation to this neglected area of inquiry, the case history presented in this essay is followed by delineation of a new conceptual framework for considering the role of family advocacy in facilitating patient-responsive care in nursing homes. This chapter attempts to provide a glimpse into the lived experience of nursing home residents and family advocates from a personal perspective based on two years of observations involving daily visits to a high-quality nursing facility by the author, whose mother was a resident. My hope is that

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by sharing the experience of advocating for one elderly person well known to the observer, some of the backstage of nursing home life can be illuminated (Goffman, 1959) and some explanations may emerge about the ‘‘disconnect’’ between specific interventions offered by ‘‘good’’ nursing homes and adverse experiences of elderly residents and their families. This chapter concludes with recommendations about ways of enhancing patientresponsiveness of care in nursing homes both through advocacy and participation of family members. This brings us a step closer to articulating the health care consumer’s perspectives on improving nursing home care. The very term ‘‘health care consumer’’ is not readily applicable to nursing home residents. Since their nursing home stay is typically paid for by third party payers (e.g. Medicaid), they are seldom in a position to vote with their feet about the value of services they receive (Stone, 2006). Second, because of their frailty they are often unable to move or even to articulate their concerns about the quality of life they receive (Kahana, 2006).

GLIMPSES OF NURSING HOME LIFE FROM THE FAMILY ADVOCATE’S AND THE RESIDENT’S PERSPECTIVE In their treatise on nursing homes, George and Maddox (1989) aptly point out that there is very little known about the day-to-day life experiences of nursing home residents. Just how much of their day is spent participating in any of the numerous innovative programs described in the literature? In what way does nursing home life support identity maintenance of residents? How can family advocacy help in humanizing the social environment of residents and support resident autonomy and dignity? I will attempt to provide some glimpses into the ways residents and their family members size up life and respond to programs in a nursing home. To accomplish this, I will present a first-person account based on notes taken during participant observation throughout a two-year period while my mother was a nursing home resident. I believe that providing an experiential context for patient and family perspectives on nursing home interventions and nursing home life will provide a keener understanding of missing links in current program initiatives. It can also illustrate how family involvement may contribute to more responsive patient care (Fig. 1).  On several occasions I have taken students in my class on ‘‘Sociology of Health Care Institutions’’ to visit an excellent, high-quality nursing home.

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Stressors

Moderators C. Family Social Support

A. Institutional Stressors Congregate Setting Segregate Setting Institutional Control

Visitation Involvement in Direct Care Emotional Support Encouraging Patient Proactivity Encouraging Patient Assertiveness Validating Patient

Outcomes

D. Family Advocacy Providing Information to Staff about Patient Values & Preferences Expressing Appreciation Monitoring Care Confronting Problems

3

2

E. Staff Responsiveness to Patient Involvement Communication Affective Support Instrumental Support Cultural Sensitivity

B. Patient Illness Chronic Illness Physical Impairment Cognitive Impairment

4

F. Patient Quality of Life Comfort Psychological Well Being Identity Maintenance Social Functioning Satisfaction with Care Good Death

Fig. 1.

Model of Family Advocacy in Promoting Patient Responsive Nursing Home Care.

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We learned about innovative intergenerational programs and state-of-theart activities and environmental design.  I have also presented, in my prior writing, detailed accounts of diverse innovative programs aimed at enhancing the welfare of nursing home residents (Kahana et al., 1999a).  A number of years ago, on a cold February evening my mother, Sari Frost, died in the same nursing home visited by my class and the one implementing many of the innovative programs described in my article. During the two years she spent in this high-quality facility, she never said that she was living in the nursing home. Sometimes she referred to the setting as a department store, sometimes as a railroad station and most of the time as ‘‘this place.’’ The special programs offered to residents had little effect on her lived experience.  In the introduction to Timothy Diamond’s book ‘‘Making Gray Gold’’ (1992), Catharine Stimpson notes that in their attempts to professionalize communication, staff in nursing homes typically use language which ‘‘screens and denies the visceral, existential realities of everyday.’’ This chapter aims to address Catharine Stimpson’s observations. To illustrate my broader observations, I move past speaking about nursing home residents or health care consumers, and speak about my mother as a person. My mother, Mrs. Sari Frost, died in February 1995 at the age of 85 from complications due to diabetes. During the last two years of her life, after her second amputation, she lived in a nursing home. Prior to that, for eight years she lived in our home. After her first amputation, for a period of four years she continued to manage our household from her wheelchair. Like many women of her generation, Sari was both exceptional and ordinary. She was a self-educated survivor of the Nazi Holocaust. With eight grades of formal education, she learned English by reading the New York Times with a dictionary and worked herself up to become a hospital bookkeeper. She retired early, to embark on a second career of helping to raise her grandchildren. She was well liked because of her caring attitude about people. She sometimes embarrassed us with her uncanny propensity to ‘‘tell it like it is.’’ Like the vast majority of older adults entering nursing homes, Sari dreaded the idea of ever residing in one. In fact she made me promise that I would let her die if she ever needed more care than our family could provide. Like many old-old adults currently residing in nursing homes, Sari was both physically and mentally frail. By the time she entered the nursing home she had suffered multiple mini-strokes and was unable to respond correctly to most of the questions in the Folstein Mini-Mental Status Examination

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(MMSE). Nevertheless, essential aspects of her personhood remained intact until the day she died. She continued to recognize and value her physician and enjoy members of her family. She responded with a big grin whenever her grandsons called long distance. She cried or screamed when attendants approached her without being gentle. Although she did not seem to know that she lived in a nursing home, when she was transferred to a hospital for a brief stay, she told both visitors and health care staff that she was pleased to be treated at this specific hospital. Sari was fortunate to be admitted to a high quality, not-for-profit nursing home, which met high standards for patient care in a state-of-the-art physical facility. This home offers a broad array of programs and interventions ranging from regular visits by community volunteers (including a visiting pet program) to a miniature zoo and intergenerational activities. Yet, the day-to-day experience of spending the last two years of her life in an institution remained for Sari a traumatic one. Her customary optimism and vigilance were dulled by physical pain. Her ability to communicate was compromised by mini-strokes. During her nursing home stay, she often reverted to speaking in her native Hungarian. Nevertheless, she retained her will to live and much of her stubborn personality and radiant grin to the very end. So what were the highlights of Sari’s life in the nursing home? Was she aware of any innovative programs or interventions? She remained secure and happy that her regular physician continued seeing her in the nursing home. In his trusted presence, she continued to express herself. She regularly chided him on his visits for taking too much time out of his busy schedule to see her. She also enjoyed my daily visits and admonished me in the morning, not to stay too long lest I be late for work, or get the nurses mad at us. She particularly liked being wheeled to the volunteer-run visitors’ coffee shop, to have toast and coffee and look out of the window. Sometimes during these outings, sitting near me in the coffee shop and eating a crunchy piece of toast, she thought she was home. She was still able to draw on her prior social skills, smile at the volunteers at the coffee shop and say, ‘‘Sir, please make sure the toast is hot.’’ She liked the volunteers and could make a human connection with them. They helped add normalcy to her life. For the most part, Sari was nervous when nursing staff approached, and was often agitated when given medications. She always wanted to know what pills she was taking, and it was hard to explain to busy staff why a woman who doesn’t seem to know who the president of the U.S.A is needs to know the dosage of her medications. By complimenting nurses regularly about their care in offering medications, I was able to generate sufficient good will

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to get nurses to let Sari check the dosage of medication prior to taking her pills. Sari became incontinent while in the nursing home. Toileting a double amputee is a real challenge to staff. Aides did not take too kindly to false alarms, after using a hoyer-lift to toilet her. After a while, her pleadings to be toileted fell on deaf ears. After spending over a year in the nursing home classified as an incontinent patient, she was transferred to an acute care hospital where it was determined that she was not incontinent at all, as long as her yells for a nurse were heeded and she was taken to the toilet. I visited the nursing home every morning on the way to work, and evenings, on my way home. Staff dutifully informed me when Sari had been taken to attend a program or activity. She never mentioned these events on my evening visits. She typically responded to my inquiries of, ‘‘So what did you do today?’’ with ‘‘I don’t know.’’ She would then add with appreciation ‘‘a smiling girl came to see me’’ referring to a kindly aide on duty. I always made sure to provide positive feedback to staff who acted kind to Sari or other residents around her. Sari never directly complained about care. However, there were times when she was frightened and agitated, and on those occasions she worried that my presence or loud voice would upset the nurses’ aides. She wanted to protect me from harm should I provoke the staff or administration. Her fears were also evoked by animals. Like many immigrant city dwellers, she had not had much experience with pets. She insisted that I shall not wheel her near the petting zoo area that was a program highlight for the home. As we would approach the zoo area, on route to the coffee shop, she would get agitated and tell me, ‘‘Go fast, the animals can hurt us.’’ She did not like attending the arts and crafts program and after some initial attempts to involve her, staff concluded that she was not high functioning enough for these activities. Nevertheless, I vividly remember my own embarrassing role in ending her sporadic participation in the activity program. On a wintry morning, prior to going to work, I wheeled mom into the room housing the activities program. They handed her two sheets of paper and some crayons and told her, ‘‘Sari, you need to choose the one you would like to color.’’ She appeared uninterested and did not respond. The question was repeated now with some urgency. Mom turned to me, ‘‘Eva, tell the lady which one I will color and then you can go to work.’’ Following her request I reached for the picture depicting two boys on a sled and handed it to the therapist. I heard an icy but professional command, ‘‘May I speak to you outside?’’ The therapist turned to me as we left the room, ‘‘We are making a real effort to include your mother in a new program to help residents make

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choices, and you took that opportunity away from her.’’ When we reentered the room, Mom announced that she wanted to go to her room and go to sleep. I knew she would have a long wait until someone could take her, so I wheeled her to her room. One of the hardest challenges for her as an amputee was sitting all day in her wheelchair without the ability to change her position or lie down when she got uncomfortable. One of our great victories came when, on my behest, our family doctor wrote an order for Sari to be lifted into bed after lunch or when she tires. After three unsuccessful attempts to involve Sari in organized activities that had little meaning for her, I was able to enlist the help of sympathetic nursing staff in getting Sari small towels from the laundry to fold. Given her work-orientated values, she found this tedious task to be a meaningful activity. Two programmatic interventions created major crises for Sari during her nursing home stay. Extricating her from those interventions took patience, skill and advocacy. Her quality of life was enhanced when she escaped these interventions. After initial placement on an observation ward, she appeared to be doing well. However, after a periodic reassessment of patient functioning, I was told that she was being relocated to a unit for severely demented Alzheimer’s patients because of her low Folstein memory test scores. Staff suggested that she would benefit from the relocation, as she would be ‘‘well matched to programs we offer there.’’ A quick visit to the dementia care unit convinced me that Sari would not benefit from being surrounded by combative residents who could be particularly frightening to a double amputee in a wheelchair. Her friendly demeanor and socially appropriate behavior, we were told by a social worker, masked serious cognitive impairment. Fortunately, after my requesting a meeting with the director of social work, I succeeded in arguing that overt behavior is a more valid indicator of functioning than are brief screening measures. Sari was placed on a unit of physically frail, but relatively cognitively intact residents. This unit provided a safe and comfortable setting for Sari. In spite of her poor test scores, Sari presented few management problems, and remained in the unit for physically frail residents for the remainder of her two-year stay. A second adverse intervention occurred after Sari temporarily became unable to feed herself, after a new medication caused side effects of hand tremors. In the course of being fed by an aide, she choked, requiring a Heimlich maneuver, which fortunately was delivered by a vigilant staff member. Subsequent to the episode, Sari was evaluated by a speech therapist. Although no identifiable pathology was noted, as a preventive measure, she was placed on a liquid diet. She reacted badly to this intervention. She stopped eating, lost weight, became morose, and appeared to be losing

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her will to live. Antidepressant medication was considered. Nevertheless, whenever I took her to the volunteer-run coffee shop she would become animated and asked for coffee and hot toast. When served her favorite breakfast, she ate with enjoyment and little difficulty. I started to advocate to have her put back on a soft diet, but to little avail. Sari stopped eating. One day when Sari’s condition deteriorated to the point that tube feeding was mentioned as a prospect, I reappraised the administration of liquid food. I suddenly had an insight. This was an intervention – and we had the right to refuse it. With trepidation I went to see the director of nursing. When I presented my view she responded: ‘‘Yes, if you are willing to take the risk of her choking, she may be put back on a soft regular diet.’’ After obtaining legal advice, and having me sign forms stating that I am willing to assume responsibility for the decision, the nursing home reluctantly went along with my request. When I visited Mom the next day, she was eating, and the big grin was back. ‘‘I have good news for you,’’ she told me: They hired a much better cook.’’ As mandated by the Federal Nursing Home Reform Act of 1987, Mom was asked to specify her wishes regarding life-sustaining treatment. When I visited her the evening after the document was handed out she appeared concerned and excited. She took a crumpled paper she was holding and handed it to me. ‘‘You must get a lawyer,’’ she noted, ‘‘to advise us what to do about these papers, which are hard to figure out.’’ I took a closer look at the papers and then I knew what Mom meant. The document was written in legal jargon. So much for yet another well-intentioned and mandated intervention, which had little meaning to the frail residents it most impacted. Mom died on February 9, 1995 untouched or bypassed by most of the innovative nursing home-based interventions. The morning of the day she died she was not hungry, but she let me wheel her to the volunteer-run coffee shop, which was her favorite spot in the nursing home. Her last words to me were: ‘‘I can’t eat today but you have a cup of coffee and some toast and I will sit with you.’’ She died peacefully later that evening.

FAMILY ADVOCACY AND DEVELOPING PATIENT-RESPONSIVE NURSING HOME CARE Based on the case study I presented, several principles of nursing home advocacy may be derived. As shown in the proposed model (Fig. 1), institutionalized residents experience two major sources of stress. The first set of stressors relate to the physical illnesses and cognitive impairments that

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contributed to their institutional placement (Magaziner, Zimmerman, Fox, & Burns, 1998). These stressors are likely to threaten the psychological wellbeing and social functioning of the older patient. The second major source of stressors is based on constraints of institutional living. There have been diverse conceptualizations of the stressful features of institutional environments (Kahana, 2006). There are problems based on the physical environment, the policy structure of institutional care, as well as the social milieu defined by interactions with staff members and with other impaired residents. Perhaps the most astute sociologically framed summary of problems posed by institutional living has been articulated in the early work of Kleemeier (1965). His formulations refer to the congregate, segregate and institutional control dimensions of the social environment of nursing homes. These characterizations define environments where all activities are conducted in the company of other residents (congregate). The residents are kept apart from the outside world (segregation), and rules and regulations of the institution must be followed (institutional control). Staff members are the major enforcers of these oppressive environmental features. These qualities of the social environment reflect aspects of a total institution (Goffman, 1961) that have an adverse effect on patient well-being and maintenance of identity. A major contribution of the proposed model (Fig. 1) is the specification of the ways that family member involvement and advocacy can help ameliorate adverse effects of institutional stressors on residents. It describes how family involvement can contribute to greater patient-centeredness of care (Stewart et al., 1995). Family members can have a direct effect on patient well-being by the social supports that they provide through visitation. As discussed earlier in reviewing the literature on the impact of family visitation of nursing home residents, the very presence of family members can yield substantial benefits. These benefits are based on emotional supports provided, on physical care given to the residents, and the breakdown of barriers with the outside world (Gaugler, Zarit, & Pearlin, 2003). This suggested impact is shown as Path 2 in our model. A second important influence of family involvement is through advocacy for the patient (Path 3). Elements of patient advocacy described in our model include providing information to staff about patient’s needs, values and preferences. This is a key element of building partnerships with staff through communication. The value of effective communication among health care partners has been articulated in our prior work in relation to cancer care (Kahana & Kahana, 2003). To the extent that staff become aware of patients’ physical, psychological and social needs, they are likely to provide

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more responsive care (Stewart et al., 1995). Communicating information about patients’ needs reflects the content dimension of advocate communication (Kreps, 2005). An additional dimension of advocate communication reflects the affective domain, whereby family members can achieve more patient-responsive care by expressing appreciation and establishing an alliance through positive affect shown to staff (Kahana & Kahana, 2001). Staff members are more likely to provide responsive care to those residents whose family advocates establish a positive relationship, reflected in a respect for and recognition of the efforts of the staff member (Noelker & Harel, 2001). Information sharing and expressions of esteem or positive affect toward staff members may be viewed as preventive aspects of patient advocacy. The family member who is able to work with staff by alerting them to the needs of the resident and enlists the goodwill of staff members by positive affect in communication is likely to minimize problems in delivery of care. However, there are many instances, as noted in the essay about Sari, where preventive advocacy is insufficient to deal with lack of responsiveness by staff. These are the times when family members must summon the courage to stand up for the needs of the resident even at the cost of confrontation with staff or administration (Kayser-Jones et al., 2003). Family advocacy, both in its preventive and its corrective focus is expected in our model to enhance staff responsiveness to the patient (Path 4). Responsiveness of care which will be further detailed is reflected in greater staff involvement in the care of the patient, better communication, greater instrumental and affective support, and greater cultural sensitivity. Such responsiveness is needed to ameliorate adverse effects of institutional and illness related stressors on patient quality of life. The experiences of overcoming structural barriers to family advocacy reported here reflect upon a major paradox experienced in institutional living. Even as family members seek to penetrate the barriers of institutional life to maintain meaningful relationships with their loved ones, institutional policies or practices converge to limit family involvement in care (Russell & Foreman, 2002). Enhancement of patient-responsive care through family advocacy involves utilization of special resources afforded by social connectedness of the patient and family advocates.

Knowledge of Patient’s Values and Preferences The family caregiver possesses special knowledge of the patient’s values and preferences. As such, she or he can help articulate to staff what

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environmental characteristics or interventions hold meaning for the resident. For example, given Sari’s lifelong orientation to work and lack of interest in leisure activities her daughter could advocate for offering Sari the opportunity to fold laundry instead of coloring or other arts and crafts. Connection with Patient’s Past The family caregiver has experiential knowledge of the resident’s prior identity and holds the link to prior roles. These prior identities are likely to persist in defining personhood of the older adult even after entry to an institution. For example, in Sari’s case, her daughter was aware of her traumatic past as a Holocaust survivor and her strong need for autonomy and for self-determination, as well as her interest in intellectual and religious pursuits, exemplified by her love of classical music and attendance of the synagogue. Communicating with staff about these values helped enhance cultural sensitivity. Accordingly, some staff members made special efforts to wheel Sari to the synagogue on Saturdays. Attachment and Emotional Involvement The family caregivers can help in validating the resident’s experiences through maintaining emotional linkages that reinforce the self-concept of the elderly patient as a worthwhile human being. Through Sari’s interaction with her daughter her dreams of hot toast, her favorite and customary breakfast prior to institutionalization, could become a reality as she was taken to the coffee shop. The bonding with her daughter empowered her, even at the end of her life, to direct her daughter to go to work on time. Through the security of her long-term emotional bond she could express assertiveness rather than just compliance, the usual currency of nursing home patient interaction with staff. Willingness to Advocate and Challenge Authority The family advocate has special rights and privileges in speaking up on a patient’s behalf. Representing the best interests of the patient and obtaining patient-responsive care may involve a willingness to deal with conflict and at times challenge staff or administrative authority. In Sari’s story her daughter had to confront the Director of Nursing to ‘‘refuse’’ treatment of a

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‘‘liquid diet’’ in order to meet Sari’s needs. Through assertive advocacy she was able to persuade staff to allow Sari to return to a normal diet.

CONSIDERING PATIENT-RESPONSIVE INTERVENTION AND CARE The discussion thus far has focused on the relevance and impact of selected interventions from a caregiver and resident perspective. The relative irrelevance of many existing programs to the daily life of a resident should not be taken to imply a cynical view, i.e., the programs are useless or unnecessary. Rather they point to a need to focus on daily life in the nursing home and to consider special interventions as only a small part of the ‘‘whole’’ of residents’ daily lives. Special programs are just one small component of the overall care experienced by residents. Interventions which have the promise of high impact must enhance overall care rather than reflect a brief departure from ongoing routinized care practices. Most importantly, they must be responsive to individual patient or resident needs (Stewart et al., 1995). Additionally, orientations which break down the barriers between the institution and the outside world by bringing representatives of the familiar outside community into the institution or taking residents back into the community, would diminish ‘‘totalistic features of institutions’’ (Goffman, 1961). Exemplifying such approaches, aides who care for elderly patients on a regular basis must be trained to redefine their jobs from custodial care to being providers of therapeutic measures (Teresi, Holmes, & Ory, 2000). Thus, for example, it is typical for frail elders on a nursing home rehabilitation unit to receive occupational and physical therapy, to enhance their ability to perform activities of daily living, such as dressing or eating independently (Camp, Cohen-Mansfield, & Capezuti, 2002). At the same time, little is done to reinforce or encourage such independence outside the therapy program. Daily meals provide tremendous opportunities for socialization, as well as a motivating context to improve self-care, nutrition and morale. Family visits, as well as programmatic attention to residents during meals, could go a long way toward achieving improvements in their physical function, as well as psychosocial well-being. Personnel delivering meals could be readily trained to engage in conversation with residents during meals, explaining what the resident is eating and contributing to the enjoyment of the meal. Meaningful choices can also be provided in the framework

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of choosing meals, at least allowing residents a selection of desserts and beverages. In terms of diminishing barriers to the outside world, both church groups and community or neighborhood groups may be used as a framework for arranging for resident visits back into the community. Encouraging families to take residents out for meals or to special events by assisting with transportation also holds great promise for patient-responsive care, by providing residents with a window to their past. Sharing information about treatment regimens and medications can enhance a sense of involvement and allay anxieties even among patients with limited cognitive abilities. Organizationally, an important requisite for implementing such gestalt approaches is breaking down barriers and establishing lines of communication between families and staff and among different levels of staff (Angelelli et al., 2003). In a study considering markers of excellence in nursing home care (Brittis, 1996) has found that the major unifying thread among nursing homes which were judged by both residents and staff as excellent was not a programmatic, policy or resource-based distinction but a fundamental connection between family residents and staff. Brittis terms this unique positive ingredient ‘‘sharing of destinies.’’ Most U.S. nursing homes are characterized by an absence of this emotional connection wherein visiting family members, as well as staff, would regularly express affection, affirmation, and communication in dealing with individual residents (Savishinsky, 1991; Vladeck, 1980). Volunteers and family members are major natural sources of connectedness for residents, and encouraging their active involvement in residents’ lives can facilitate patient-responsive care (Bumagin & Hirn, 1990; Oliver & Tureman, 1988). Interventions generally require at least some additional expenditure of funds by the nursing home. Such funding may be increasingly difficult to obtain in an era of cost containment (Stone, 2006). The challenge in this era of managed care is to demonstrate how positive program initiatives can be taken without increasing costs. Patient-responsive care is ‘‘care with a soul’’ and care with common sense. Such care need not be very costly (Chou, 2002). In evaluating existing interventions through a review of the literature (Kahana et al., 1999a) we located relatively few examples of patientresponsive intervention. However, there are many helpful and high impact programs initiated and implemented by nursing home staff and by clinicians who are sensitive to service needs and the perspectives of residents, which never find their way into the literature. It is important to acknowledge that there are fundamental separations between clinical, practice, and research

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domains, which serve as barriers to disseminating clinical programs to the scientific community. The very professionals most deeply committed to developing practice innovation, which are high impact and relevant to daily needs of older residents, may lack the training, the temperament, and the time and resources which it takes to design such program evaluations and write them up for publications in scientific journals. Conversely, the scientists best equipped to design, implement, and get funding for scientifically sound innovative programs tend to work in academic settings. Often they design intervention programs for nursing homes without familiarity with the day-to-day living situations or perspective of residents or staff. Patient-responsive care (as outlined in Fig. 1, component E), demands staff involvement, communication, and support. I have long advocated such approaches (Kahana, 1973) following up on seminal work of social scientists such as Goffman (1961) and Henry (1964). The challenge still stands, as growing numbers of older adults will live the final chapter of their lives within the confines of nursing homes. In this chapter I focused on family advocacy as an important and thus far largely overlooked opportunity for linking patients to the outside world and for enhancing patient-responsive care.

OFFERING PATIENT-RESPONSIVE CARE BASED ON HIERARCHY OF PATIENT NEEDS Development of practices and programs which are responsive to patients must move beyond medical models to allow for an appreciation of resident needs and preferences (Henderson, 1995). Family members can serve a useful function in articulating such needs, where residents’ ability to communicate is limited. Systematically considering the residents’ perspectives on daily life in a nursing home can help in making programs salient to the daily experience of the individual resident. Maslow’s (1970) hierarchy of needs provides a useful context for classifying the full array of resident needs and organizing them in a hierarchical fashion. For example, programs targeting residents’ social function may hold little interest for older adults whose most basic physical needs have not been met. Residents may thus express disinterest in attending a carefully planned community birthday party or an activity session, simply because they fear that there will be no one there to take them to the toilet when needed. Consequently, priority must be placed on meeting more immediate needs first and then move toward creating programs, which address higher order needs. The family advocate can help communicate to staff about patient values and preferences.

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Four major areas of need are to be met by staff: reducing physical distress, meeting basic physiological needs, meeting emotional needs, and meeting social needs. This hierarchy of patient needs is seen as invariant across diverse nursing home environments. The needs outlined here are broadly related to Maslow’s hierarchy of needs and are adapted from a framework we used to consider patientresponsive care for elderly in acute care hospital settings (Kahana, Kahana, Kercher, & Chirayath, 1999b). We recognize that cognitively impaired and frail elders may be limited in their ability to articulate and communicate their needs, and thus a major challenge of patient-responsive care is to elicit expression of needs and preferences. However we consider traditional approaches to need assessments, which are based on objective test data, to be of limited value in assessing patients’ perspectives. Instead, we advocate empathetic listening to the patient’s lived experience as a basis for developing patient-responsive care (Bennett, 1980). Such listening involves creation of a staff environment where residents do not fear sanctions if they express needs or place demands on staff. It also involves active efforts on the part of the staff to solicit expressions of resident need, articulated by family members and by residents. The framework offered below helps organize family–staff and patient–staff communication about areas of need.

Alleviating Discomfort Discomforts, such as pain, dizziness, or nausea, are experienced by many nursing home residents due to physical frailty and multiple chronic illnesses. Contributing to physical discomfort may also be medical regimens or the nursing home environment itself. Pain may be due to poor circulation or arthritis. Discomforts may be caused by dressings or by a catheter. The resident may also suffer from backache or soreness due to a lumpy or soft mattress. Diminishing physical discomforts represents the first challenge to be met in providing patient-responsive care. This is an area where family communication with physicians and skilled nurses becomes particularly important. Side effects of medications need to be dealt with and attention needs to be directed to proper nutrition and exercise. In our case history about Sari, her being confined all day to a wheelchair, without being able to rest in bed during the day, caused great discomfort. Among wheelchairbound residents, it is not uncommon to have staff position them in their chair early in the morning and to spend a very long day confined to the

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wheelchair. Only when physical discomfort is minimized can interventions to meet higher order needs become effective.

Meeting Physical Needs The second major area of needs involves basic physiological needs of hunger, thirst, toileting, sleep, temperature regulation and breathing. These are needs which healthy people living in the community routinely meet without difficulty. However, for the frail nursing home resident, each of these needs can pose major challenges. Nursing home residents are likely to have difficulty in meeting their basic physiological needs, in part due to illness and physical limitations and in part due to environmental barriers posed by the nursing home (Cohen-Mansfield & Werner, 1998). To the extent that environments and care are not individualized, frail residents will find problems in meeting their physical needs even in situations where healthy persons might be comfortable. In describing issues related to physiological needs of residents, we provide some examples where environmental barriers may present problems. In terms of hunger, problems arise as residents are given diets which they are not accustomed to or where trays are placed out of reach of a bedridden resident. In regard to temperature regulation, many nursing homes do not offer temperature controls, which can be regulated for individual residents. Since the majority of residents prefer extreme warmth during the winter, the temperature may be set too high for meeting needs of those elderly who are uncomfortable in excessive heat. Restful sleep is very important for maintenance of physical and psychological well-being, yet sleep is often disrupted in nursing home settings, in an effort to implement toileting programs, or to turn residents in order to avoid bedsores. It is a common experience of older adults to seek fresh air by opening windows. However, in most nursing homes, windows are not designed to open. Toileting needs are particularly acute for frail residents in wheel chairs. In many nursing home situations, even cognitively intact residents find it difficult to obtain assistance in being taken to the toilet when needed. Other, more cognitively impaired residents, find it difficult to operate the devices designed to call for a nurse, and hence cannot communicate their needs. The average wait for a response by an aide to requests to be assisted may be staggeringly long. Inattention to toileting needs and problems with heat regulation presented a major area of unmet need in the case study of Sari. Advocacy by family members can be particularly useful in

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alerting staff to unique physical needs of a resident, such as feeling overly warm, when the majority of residents tend to feel cold. Lack of patientresponsive care in meeting these most basic of human needs may result in psychological problems and unmet psychological needs to which we next turn (Livingston et al., 2005).

Meeting Emotional Needs of Residents Emotional needs of residents include a broad array of normal human needs. However, aging, frailty and institutionalization also result in special areas of need. Four areas of emotional need may be identified as particularly salient to elderly nursing home residents. These include: harm avoidance, personhood, dependency, and autonomy. We will illustrate approaches of patientresponsive care by focusing on harm avoidance and personhood. Extensive discussions of issues of autonomy and dependency have been presented in the literature (Agich, 1993). Nursing home residents need to feel secure and unharmed in the face of frailty. The extreme vulnerability experienced by old-old persons with physical, sensory, and cognitive limitations calls for constant reassurance that those caring for them will not hurt or neglect them. Patient-responsive care in this area demands that there be reassuring touching and verbal communication whenever personal care is provided. Patients must be actively queried about their concerns and specific reassurance provided in areas of fear. Typical concerns may involve fears of falling out of bed or having a medical emergency with no one noticing. Patients are typically also fearful of being lifted on a hoyer-lift or bathed in tubs where they are suspended while bathing. In Sari’s case, I was not permitted to be in the room while staff transferred her using a hoyer-lift. This regulation presumably was necessary to protect her privacy. The presence of a family member was actually reassuring to Sari. Establishing positive and appreciative ties with staff members helped in this situation, as some staff were willing to allow family in the room. A second area of unique emotional concern for nursing home residents involves the need to maintain a sense of personhood and respect in the face of losses and institutionalization. Examples of concerns in this area include fears that requests, wishes, and opinions of the resident will be disregarded. This emotional need is exacerbated in nursing home settings where there is little individualization of care. Patient-responsive care must seize opportunities to acknowledge resident opinions. The challenge is to do so in ways that are meaningful to residents. Patient-responsive care is not

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about choices in pictures to color but about acknowledgment that the resident truly matters. One example of such gestures may be a staff member discussing a sports event or asking advice from a resident. Spiritual needs of residents and their concerns about having a ‘‘good death’’ also need to be acknowledged through empathetic listening and sensitively responsive comments. The family advocate can make important contributions by sharing personal stories with staff about the resident and keeping staff motivated to relate to the resident as a unique person rather than just a case to manage.

Meeting Social Needs Social needs and concerns of residents primarily include needs for maintaining meaningful social ties with family and maintaining some sense of attachment with those in their immediate social environment, including both staff and other residents. Recognition of the cultural and religious background of the resident also represents an important contribution to identity maintenance. A major social need concerns the fear of abandonment by family and the outside world (Oliver & Tureman, 1988). Residents may make frantic and apparently unnecessary demands that staff contact members of their family. Such actions are likely to mask emotional needs for close human contact and attachments. Patient-responsive care calls for active listening by staff for these signals. Instead of vacuous reminders ‘‘your children were here just a few weeks ago’’ residents concerns should be heard and empathetically acknowledged. Active efforts by staff to create meaningful bonds with residents reflect examples of patient-responsive care. The involvement by family caregivers in meeting social needs is key, through visitation, phone calling and where possible, taking the resident out of the nursing home for community visitation.

CONCLUSIONS AND RECOMMENDATIONS There are several approaches to researching social phenomena such as nursing home care. Distinctions may be made based on method (i.e. quantitative and qualitative), based on focus (i.e. nursing care or policy), and based on scope of analysis (i.e., micro, meso, and macro) (Merton, 1949/1968). Alternative approaches use different methods and have different goals. Quantitative research is driven by prediction, using measures that often oversimplify constructs that often lead to studies divorced from the lived

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experience of the nursing home patient (Day, Carreon & Stump, 2000). Qualitative research, on the other hand, is rich with the layered fabric of the lives of the patient. Different contexts such as personal history and emotional needs are woven into a descriptive account of daily lives, the complexity of which may be impossible to quantify (Henderson & Vesperi, 1995). This chapter has primarily dealt with nursing home care. A second and equally important focus is reflected in the literature oriented to nursing home care policy, including political decisions and the financing of longterm care (Stone, 2006). This literature has important implications for the lives of residents in institutional facilities, but is not clearly connected to current research understandings. How can these different approaches of scholarship be harnessed to ultimately improve quality of care in nursing homes? In order to transfer the everyday experience of residents in the nursing home into policy change and better practices, research strategies must better capture the richness of the lived experience. We can clearly benefit from enlisting conceptual understandings of medical sociology to better inform relevant and significant research that can inform policy and practice (Pescosolido & Kronenfeld, 1995). The field of nursing home research would benefit from examples of quantitative studies that capture the interaction among family advocates, staff and residents, as they contribute to better quality of care and quality of life for residents. It is my hope that the qualitative perspectives and the proposed conceptual framework presented here can be utilized in future quantitative research to examine the role of family members in fostering patient-responsive nursing home care. Specification of mechanisms by which family advocacy can contribute to high quality of life, in turn should facilitate development of practice guidelines for diminishing barriers between the outside world and life in institutions.

ACKNOWLEDGMENTS This research was supported in part by National Institutes of Health, National Institute on Aging Grant ]AG 10738.

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Oliver, D. B., & Tureman, S. (1988). The human factor in nursing home care. New York: Haworth Press Inc. Pescosolido, B. A., & Kronenfeld, J. J. (1995). Health, illness and healing in an uncertain era: Challenges from and for medical sociology [Extra Issue: Forty Years of Medical Sociology: The State of the Art and Directions of the Future.]. Journal of Health and Social Behavior, 35, 5–33. Russell, H., & Foreman, P. E. (2002). Maintaining a relationship with a family member in a nursing home: The role of visitor. Journal of Family Studies, 8, 147–164. Savishinsky, J. S. (1991). The ends of time: Life and work in a nursing home. New York: Bergin & Garvey. Stewart, M., Brown, J. B., Weston, W. W., McWhinney, I. R., McWilliam, C. L., & Freeman, T. R. (1995). Patient-centered medicine: Transforming the clinical method. Thousand Oaks, CA: Sage Publications. Stone, R. I. (2006). Emerging issues in long-term care. In: R. Binstock & L. George (Eds), Handbook of aging and the social sciences (6th ed., pp. 397–417). New York: Academic Press. Stone, R. I., & Short, P. F. (1990). The competing demands of employments and informal caregiving to disabled elders. Medical Care, 28, 513–525. Teresi, J. A., Holmes, D., & Ory, M. G. (2000). The therapeutic design of environments for people with dementia: Further reflections and recent findings from the national institute on aging collaborative studies of dementia special care units. The Gerontologist, 40, 417–421. Tornatore, J. B., & Grant, L. A. (2004). Family caregiver satisfaction with the nursing home after placement of a relative with dementia. Journals of Gerontology: Series B: Psychological Sciences and Social Sciences, 59B, S80–S88. Vladeck, B. C. (1980). Unloving care: The nursing home tragedy. New York, NY: Basic Books. Walshe, K. (2001). Regulating U.S. nursing homes: Are we learning from experience? Health Affairs, 20, 128–144. Weiner, A. S., & Ronch, J. L. (Eds) (2003). Culture change in long term care. New York: Hawthorne Press. Zola, I. K. (1982). Missing pieces: A chronicle of living with a disability. Philadelphia, PA: Temple University Press.

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INSTITUTIONAL CONSTRAINTS ON RESIDENTS IN LONG-TERM CARE FACILITIES FOR THE ELDERLY Samantha Sterns and Eva Kahana ABSTRACT For frail older persons, gaining access to care is primarily in the context of long-term care institutions. Based on hypotheses derived from the theory of the total institution (Goffman, 1961) and anticipatory socialization theory (Merton & Kitt, 1950), linkages of intra-institutional and extra-institutional social ties with quality of life outcomes were assessed based on 168 residents’ self-reports of their life and problems experienced in long-term care (Kahana, Kahana, & Young, 1987). Findings reveal that lack of anticipatory socialization was a significant predictor of subsequent wellbeing, whereas the extent of social ties to the outside world did not predict subsequent wellbeing.

INTRODUCTION With increasing numbers of older adults requiring long-term care in our aging society, understanding the impact of this form of care on wellbeing of care recipients presents an important challenge. Gerontological scholarship Access, Quality and Satisfaction with Care: Concerns of Patients, Providers and Insurers Research in the Sociology of Health Care, Volume 24, 135–154 Copyright r 2007 by Elsevier Ltd. All rights of reproduction in any form reserved ISSN: 0275-4959/doi:10.1016/S0275-4959(06)24007-9

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has approached the topic of long-term care delivery through diverse prisms often reflecting disciplinary orientations of researchers. Accordingly, health service researchers have focused on alternative forms of financing and regulation as key determinants of both access to care and quality of service provision (Castle, 2006; Kitchener, Hernandex, Ng, & Harrington, 2006). Political scientists have analyzed long-term care as reflecting ‘‘the worst aspects of privatization that is so championed today by new conservative forces’’ (Olson, 2006, p. 297). They attribute substandard care to harsh workplace environments dictated by profit motives of nursing home owners. Anthropologists, in turn, have continued to conduct ethnographic studies of nursing home care that focus on the culture of long-term care environments, particularly as they reflect negative societal attitudes towards frail residents (Kayser-Jones et al., 2003). Some see the potential for ‘‘meaning making’’ by residents who view long-term care facilities as their home and by families who can help contribute to a social, rather than a medical model of care (Stafford, 2003). All of these research traditions converge in lamenting dehumanizing aspects of nursing home life and consider long-term care an undesirable station of last resort for those older adults who are unable to continue to live independently in the community. Prior research has seldom considered that moving into a long-term care facility may, for some residents, actually be a preferable option of care, and may not be a last resort. Nevertheless, many older adults do confront stressful situations in diverse institutions for the elderly (Kahana, 2005). Furthermore, residential long-term care extends beyond walls of the institutional structure, to homes for the aged, assisted living facilities, adult foster care, and other congregate settings (Mollica & Johnson-Lamarche, 2005). Prior work on the stressors posed by institutional life is well documented (Goffman, 1961; Gubrium, 1975; Kayser-Jones, 1981; Vladeck, 2003). What these studies found is that institutional living limits residents’ choices and autonomy. In spite of widespread attention to problems faced by long-term care residents, there has been relatively little empirical research applying fundamental social theories, such as the classic works of Goffman (1961), to explore the lived experience of residents in long-term care facilities. This study seeks to bring sociological insights to understanding the experiences of institutional living by following a group of residents entering diverse long-term care facilities and following them for an eight-month period. We argue that the essence of the experience of institutionalization has been incisively defined by Goffman (1961) as related to barriers between the institution and the outside world. This research therefore examines the

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impact of macro-level institutional structure on residents, specifically in their experiences of institutional barriers, and on the impact this has on their quality of life, which reflects their satisfaction with care. Additionally, this research examines extra-institutional factors, examining experiences that occurred prior to moving into long-term care (Merton & Kit, 1950). We also place adaptations to institutional life in the context of social structural positions of patients as reflected by demographic characteristics. Social theory speaks of the fundamental challenges for institutionalized patients. This chapter seeks to explore expectations based on major social theories, Goffman’s theory of the total institution (1961), and Merton’s theory of anticipatory socialization (1950) as they apply to residents living in an institutional setting. This study examines one aspect of total institution theory, specifically how much access to the outside world residents have in these long-term care facilities. Additionally, patient characteristics and their influence on quality of life were assessed, including demographic and social structure positions. Merton and Kitt’s concept of ‘‘anticipatory socialization’’ (1950), describes the process individuals identify with a group they aim to belong to and how they socialize themselves to that groups norms. It is examined in order to contextualize and to theoretically understand the process and preparations prior to moving into long-term care. Gerontological research on relocation (Shultz & Brenner, 1977) has revealed considerable adverse affects after relocating to institutional facilities. Older adults, who move to long-term care facilities with limited involvement in decisionmaking, may be expected to experience greater stress even beyond the adverse affects due to lacking contact with the outside world. Data from a National Institutes of Health (NIH) funded study will be presented on 168 elderly residents over the age of 75 (Kahana et al., 1987). Respondents resided in 14 urban long-term care facilities, with data collected during the early phase of institutionalization, when critical adaptations occur.

THEORETICAL BACKGROUND Total Institution Theory Goffman’s theory of the total institution has been universally recognized as key to understanding the impact of institutions on inmates. Goffman characterized the ‘‘total institution’’ as an environment where residents live in a congregate setting, with the same group of people, do the same activities

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with one another, and live under the same set of rules. Typically, people living under these conditions lose their individualism and live with very little autonomy. Often actual or symbolic barriers prevent patients from entering or leaving the facilities. This causes greater difficulty in contacting and interacting with people who live outside of the facilities, including family. Over time, these institutional characteristics will lead to the mortification of the self, and one’s self-concept is likely to change. While Goffman’s research was conducted on mental institutions, his ‘‘total institution’’ theory has been applied to other institutional settings, including the nursing home (Gubrium, 1993; Savishinsky, 1991; Vladeck, 1980). His conceptualization allows us to test what definitions of self are stable over time and therefore core, and which are more transient, and consequently subject to change in different environments. Goffman’s theories have been accepted as classic explanations of institutional life. Works following Goffman’s concepts include Beuf (1989), who used the ‘‘total institution’’ framework to guide part of her research on children’s hospitals. Goffman’s framework served as a prototype for anthropologists (Henry, 1963; Savishinsky, 1991) and gerontologists (Gubrium, 1993; Vladeck, 1980). These works describe the humiliation, loss of dignity, loss of freedom, and lack of choice experienced by elders placed in an institutional setting, as well as the efforts of residents to adapt to this new environment. In studies focusing on the early impact of institutionalized living, physical and psychological decline was found primarily in the first year of institutionalization (Lieberman & Tobin, 1983). In one qualitative study, Clark and Bowling (1990) tested whether the total institution theory held in a long stay hospital ward and in smaller nursing homes for the elderly. They found that the theory only applied to the hospital ward. The research reported here focuses on larger facilities, thus distinguishing it from Clark and Bowling’s work. Overall, while many researchers have utilized Goffman’s theories in shaping their research, very few have empirically tested them in long-term care facilities for the aged. This research aims to fill this gap.

Anticipatory Socialization One is said to have more anticipatory socialization if they voluntarily decide to move, decide to move over a longer period of time, or if the transition was scheduled, where the older person was involved in planning to move. The concept of ‘‘anticipatory socialization’’ originated from Merton’s writings. Merton and Kitt proposed the concept of ‘‘anticipatory socialization’’,

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which describes the process of how individuals identify with a group they aim to belong to and how they socialize themselves to that group’s norms (1950). Anticipatory socialization is a process or set of experiences in which individuals come to correctly anticipate the values, norms, and behaviors that will be encountered in a new social setting (Merton, 1957). The individuals who become more successfully integrated into a new setting and function more effectively in it are those for whom anticipatory socialization was more effective. While Merton wrote about this process for newcomers on a job, the concept of ‘‘anticipatory socialization’’ has been applied to the moving process into residential care placement (Chenitz, 1983; Nolan & Grant, 1992; Nolan et al., 1996). When older adults move into long-term care, most do not know what to expect or how to act. Those who have visited the home and know more about what to expect will be more comfortable in that environment earlier on, while those who have little understanding of the home would have to observe and learn the new socialization patterns after moving in. For this research, anticipatory socialization is measured by one’s voluntary or involuntary decision to move into a nursing home and by how quickly the decision to move was made, as well as how reluctant respondents were to moving into long-term care.

RATIONALE AND HYPOTHESES This research explores one key dimension of Goffman’s theory (1961), examining the barriers institutions create in interacting with others outside of the institution (1961), as well as Merton and Kitt’s concept of anticipatory socialization (1950). While there are several aspects to Goffman’s theory, including living in a congregate setting, doing the same activities with others, living under the same rules, etc., examining barriers to the outside world is central to conceptualizations of life in the total institution. Furthermore, residents who expect to be linked to the outside world may be particularly vulnerable. These residents face more difficulties when encountering the more totalistic features of the institution. In this sample, some residents have associations with people outside of the institution and others do not. This affords the possibility to examine whether more contact with the outside world impacts residents’ psychological wellbeing. Two alternative hypotheses are presented as related to the influence of extra-institutional and intra-institutional influence on residents’ quality of life. The first hypothesis examines the negative impact that institutional barriers have on residents in long-term care facilities for the

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elderly. Hypothesis 2 refers to the potentially positive impact of anticipatory socialization. Those residents better prepared for the move and more involved in the decision to move were expected to have better subsequent quality of life.

METHODS Institutional Barriers Hypothesis 1 was tested by examining residents’ social connectedness to the outside world, measured after eight months of living in the institution. Typologies were created from a question that asks, ‘‘At the present time, who are you close to?’’ and probes respondents with the question, ‘‘anyone else’’? Answers were coded into three typologies. First, Typology 1, ‘‘close associations inside the institution only’’, refers to residents who indicated that they were close to other residents or staff, but not with family or outside friends. Second, Typology 2, ‘‘close associations outside the institution only’’, refer to residents who indicated being close to a family member and/or friends outside of the institution, but not with staff or residents inside the institution. Spouses were included in this category whether or not they also lived in the institution. Third, Typology 3, ‘‘close associations both inside and out of the institution’’, was coded to include residents who have associations with both someone inside the institution and someone outside of it. Residents who lack contact with someone outside of the facility (Typology 1) are expected to experience the impact of a total institution more strongly than those who have associations with someone outside of the institution (Typologies 2 and 3). This is due to the presumption that residents would like to continue their old friendships and continue to bond and interact with their family who live in the community. Therefore, it was anticipated that having no connections with people outside of the institution (Typology 1) will lead to more adverse outcomes. Typology variables were correlated with outcome measures, measured at time 3, in order to test the hypothesis.

Anticipatory Socialization Aspects of preparedness for the move were correlated with outcomes, to determine how they impact quality of life. By examining anticipatory

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socialization, we were able to determine whether the institution represented a place of last resort, or whether the institution represented a dwelling place where one chose to be. If anticipatory socialization had a greater impact on outcomes than social typologies, it would support the alternate hypothesis. Anticipatory socialization was measured by three single items including respondents’ eagerness to move, the time to decide to move to the institution, and who made the decision to move. Furthermore, if residents who opted to live in long-term care, and therefore had more anticipatory socialization, had a better quality of life, it would mean that the institution did not represent a total institution type setting. Rather, it is one’s orientation and expectations prior to entering long-term care that determined how overbearing the institutional structure was for a new resident. Background characteristics are considered in order to describe the sample studied in this research. Additionally, bivariate correlations with quality of life measures were assessed in order to determine the impact of social structural positions on the wellbeing of residents. Interview questions assess respondents’ gender, age, country of birth, number of children, and religious affiliation. Residents’ cognitive impairment as reflected in memory deficits, measured through the mental status questionnaire, is assessed at the time just prior to residents moving into the facilities for the aged (Kahn, Goldfarb, Pollack, & Peck, 1960). The scale provides a brief, objective, and quantitative measurement of cognitive functioning of older adults, appropriate for patient samples (1960). Questions assessed respondents’ orientation, including knowing the day’s date, who the president was currently, and who the president was before him (10 items). Scores ranged from 0 to 10, with 10 representing no errors (alpha ¼ 0.73). The outcome measures included morale and self-rated health. Morale was measured by a subset of the Lawton Morale Scale that included questions on loneliness and dissatisfaction, with scores that ranged from six to twelve, with higher scores representing higher morale (Lawton, 1975). For the sample, the alpha reliability on this scale was 0.75. Self-rated health (Liang, 1986) was measured by a two item index, composed of the questions: health compared with others your age and health compared with three to four months ago, measured, with the items summed together. The self-rated health scale ranged from zero to eight, with a score of eight representing the best-reported health.

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FINDINGS Institutional Setting and Sample Characteristics Respondents in this sample relocated to 14 different long-term care facilities in two large, urban, midwestern cities. Homes were both proprietary and non-profit charitable or religious institutions. The average size of the facilities was 203 beds, with none less than 100. Patients were admitted to selfcare or intermediate care divisions. The homes were licensed, either with nursing home licensure or with board and care home licensure. Of the fourteen homes, three were non-sectarian, and eleven of the homes were religiously sponsored, with five Jewish, four Protestant, and two Catholic institutions. While religiously based, the homes did not limit residence to those who practiced that faith. Sample characteristics reported here include those reported in Table 1 as well as additional data that are reported only in the text. Examining demographic characteristics, the majority of respondents are female (77.4%) and in their late seventies (mean age 78.5 years). Race of respondents was predominately Caucasian (97.2%), with only 2.8% being African American (not in tables). Additionally, a very large sub-population (37.6%) was born outside of the United States, reflecting the high rates of immigration that occurred in the late 19th century and early 20th century, when this population was born. This trend is further supported with the even higher percentages of respondents whose mother and father were born outside of the United States (59.4%, 60.8%, respectively) (not in tables). Examining family characteristics, marital status, and information on children are reported here. Residents’ marital status reveals that the majority was widowed (65.1%), with a small but significant portion still married (16.3%) (not in tables). Furthermore, 9% of the sample was divorced or separated at the time they moved into the institution, while 9.6% never married (not in tables). Residents had an average of two children, with about one quarter (23.2%) having had no children (not in tables). A small sub-group had four or more children (16.8%) (not in tables). Most of these respondents with living children had a son or daughter living nearby (mean ¼ 1.7, standard deviation ¼ 1.5). Cognitive functioning of respondents when entering the long-term care institutions was fairly good with respondents having relatively few errors on the mental status questionnaire, thus representing a fairly healthy sample (mean ¼ 8.6).

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Table 1. Study Measures

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Descriptive Results of Demographic and Sample Characteristics. Mean (Standard Deviation)

Distribution

% (N)

Female Male

77.4 (130) 22.6 (38)

52–65 65–74 75–84 85–94

2.6 (4) 29.6 (45) 44.1 (67) 23.7 (36) (Missing ¼ 16)

National origin

Born in the USA Born outside of the USA

62.4 (103) 37.6 (62) (Missing ¼ 3)

Number of children who live in nearby area

0 1–2 3 4–7

20.4 (28) 57.7 (79) 8.0 (11) 13.9 (19) (Missing ¼ 31)

Protestant Catholic Jewish Other

45.3 (73) 18.0 (29) 31.7 (51) 5.0 (8) (Missing ¼ 7)

1–4, most errors 5–7 8–9 10

4.5 (7) 19.7 (31) 21.7 (34) 54.1 (85) (Missing ¼ 11)

Gender Age 78.5 (7.7)

1.7 (1.5)

Religious affiliation

Cognitive functioning

8.6 (1.9)

Note: N ¼ 168. Percentages reported based on number of non-missing cases.

Descriptive Findings Table 2 reports descriptive results on anticipatory socialization. Anticipatory socialization was considered using several measures. A surprisingly large proportion of residents were eager to move into long-term care (39.6%). We found that for the most part, respondents had over six months lead time from the time they decided to move, to when they actually moved (49.7%), while 22% had less than a month’s lead time prior to moving. The decision to relocate to the institution was generally made jointly

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Table 2.

Descriptive Results on Anticipatory Socialization.

Study Variables Eagerness to move 1: Eager to move 2: Somewhat willing to move 3: Reluctant to move Time to decide to move to institution 7–8: One or more years ago 6: 6 months to one year ago 4–5: 1–6 months ago 1–3: Within the last month The decision to move was made by 1: Yourself only 2: Jointly with others 3: Others only

% (N)

39.6 (63) 41.5 (66) 18.9 (30) (Missing ¼ 9) 34.6 (55) 15.1 (24) 28.3 (45) 22.0 (35) (Missing ¼ 9) 43.5 (70) 47.8 (77) 8.7 (14) (Missing ¼ 5)

Note: N ¼ 168. Percentages based on total number of cases, not including missing data.

between the current resident and others (47.8%). However, many residents did make the decision to move by themselves (43.5%). Finally, a small, but important group had the decision to move made completely by others (8.7%). This pattern suggests that voluntary rather than involuntary relocation was normative for our sample. Descriptive results on quality of life measures are reported in Table 3. Regarding morale, about one-third of respondents had the highest morale, while about 17% had the lowest scores. Finally, looking at self-rated health, 61.2% of respondents rated their health as ‘‘good’’ or ‘‘excellent’’ as compared with others their age, while about 12% rated it as ‘‘poor’’ or ‘‘very poor’’ in comparison. Furthermore, 21.6% reported their health as ‘‘better’’ or ‘‘much better’’ than three to four months prior, while 24.6% rated it as ‘‘worse’’ or ‘‘much worse’’. Typology variables were created to test whether residents who associate with people only inside the institution had worse health and quality of life outcomes (Table 4). Residents mostly fell under Typology 2 (65.5%), with most having close associations with people exclusively outside of the institution. About 16% of residents had close associations with people exclusively inside the institution and about 13% of residents had associations with people both inside and outside of the institution. This pattern represents a noteworthy departure from expectations based on Goffman’s total

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Table 3. Study Measures

Descriptive Data on Quality of Life Measures. Mean (Standard Deviation)

Distribution of Scores

% (N)

10.3 (1.8)

6–8 9–10 11 12 (Highest morale)

16.9 (27) 25.6 (41) 25.0 (40) 32.5 (52) (Missing ¼ 8)

6.6 (1.5)

7–8 5–6 3–4 1–2 (Worse health)

29.1 (48) 50.3 (83) 17.6 (29) 3.0 (5) (Missing ¼ 3)

Lawton Morale Scale

Self-rated health (SOPH)

SOPH item 1: Health compared to others your age

Item of SOPH: Health compared to 3–4 months ago

145

3.7 (1.0)

5 4 3 2 1

– – – – –

Excellent Good Fair Poor Very poor

19.4 (32) 41.8 (69) 27.3 (45) 8.5 (14) 3.0 (5) (Missing ¼ 3)

3.0 (0.8)

5 4 3 2 1

– – – – –

Much better Better Same Worse Much worse

3.0 (5) 18.6 (31) 53.9 (90) 21.0 (35) 3.6 (6) (Missing ¼ 1)

Note: N ¼ 168. Percentages based on number of non-missing responses. SOPH: Subjectively rated overall physical health.

Table 4.

Typology of Connectedness with the Outside World.

Study Measures

Distribution

% (N)

Typology 1: Are association exclusively inside the institution?

No Yes

84.5 (142) 15.5 (26)

Typology 2: Are association exclusively outside the institution?

No Yes

34.5 (58) 65.5 (110)

Typology 3: Are association both inside and outside the institution?

No Yes

87.5 (147) 12.5 (21)

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institution theory on relocation where few residents reported being cut off from the outside world. Bivariate Correlations Anticipatory socialization, social typologies, and demographic characteristics were correlated with physical health and morale after eight months of living in the long-term care facilities (Table 5). Results show that if respondents were more reluctant to move into the long-term care facility, than they rated their health significantly more negatively after eight months in the institution (r ¼ 0.21). Conversely, residents with associations exclusively inside of the institution (Typology 1) had significantly better self-rated health than either Typologies 2 or 3 (r ¼ 0.21). Quality of life, as measured Table 5. Associations between Demographic, Anticipatory Socialization, and Social Connectedness and Quality of Life Outcome. Self-Rated Healtha

Moralea

r

R

Demographic and personal characteristics Gender (women ¼ 1) Age National origin (born outside the US ¼ 1) Number of children who live nearby Religion – Protestant Religion – Jewish Religion – Catholic Cognitive functioning

0.00 0.08 0.22 0.16 0.21 0.10 0.05 0.13

0.04 0.31 0.27 0.05 0.22 0.25 0.09 0.03

Anticipatory socialization Reluctance to move Time to decide to move Decision to move made by others

0.21 0.01 0.14

0.29 0.01 0.13

Social connectedness Typology 1: Close associations exclusively inside the institution Typology 2: Close associations exclusively outside the institution Typology 3: Close associations inside and outside the institution

0.21

0.09

0.06

0.09

0.01

0.09

Note: N ¼ 168.  po0.01, two-tailed.  po0.001, two-tailed. a Higher values represent better health, morale, and functioning.

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by morale, was not significantly related to any of the typology variables (Table 5). However, respondents who were more reluctant to move had significantly lower morale scores (r ¼ 0.29). Finally, demographic characteristics did appear to significantly impact quality of life, with being Protestant and having been born in the United States related to better selfratings of health (r ¼ 0.21, r ¼ 0.22, respectively). Furthermore, older, foreign born, and Jewish residents experienced lower morale than their counterparts (r ¼ 0.31, r ¼ 0.27, r ¼ 0.25, respectively). Results point to the importance of extra-institutional factors as well as demographic characteristics in helping to shape residents perceptions of quality of life in long-term care facilities.

DISCUSSION This research examined issues involving provision of care to residents in long-term care facilities for the elderly. We considered aspects of life common to all residents living in long-term care facilities for the elderly. Specifically, the factors that impact residents prior to moving to long-term care were evaluated. They include the impacts of decision-making prior to entering the institution and linkages with representitive of the outside world after entering the institution. Interviews with residents show that the longterm care facilities studied did not represent a total institutional type environment. Furthermore, stressors faced within the home did not have as great an impact on quality of life as was expected. Rather, extra-institutional factors that precipitated the move had a stronger impact on quality of life for residents, reflecting their satisfaction with care. This study found that factors relating to the older adult and to their circumstances prior to moving into long-term care had a greater impact on their quality of life than did intra-institutional factors, which included linkages with the outside world representing problems experienced in the institutional setting. These data were collected on elderly people entering long-term care facilities in the 1970s (Kahana et al., 1987). The study was based on a sample of 168 residents entering 14 different non-profit homes in two metropolitan areas. We anticipated that universal theories about stressors of institutionalization were applicable to these elderly, particularly, as these social theories were developed in the 1950s and 1960s, close to the era when our data was collected. Descriptively, findings show limited support for the theory of the total institution, where few residents encountered the stressors, defining a totalistic environment (Goffman, 1961). This limits the opportunity to test

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the theory, because of insufficient variability of defining characteristics of the total institution. Our findings are important in demonstrating that institutional environments need not diminish access to social ties with the outside world. Residents, for the most part, were not cut off from the outside world. In these institutional settings, only a minority of residents (15.5%) lacked close associations with family or friends outside of the long-term care setting, with 66% of the sample reporting being close only to family or friends outside of the institution. Previous research (Noelker & Poulshock, 1984) found similar findings, where of the 40 respondents in one private residential home, almost 70% reported that they were close to family members or friends outside the home. The continuing maintenance of outside social ties was also reported in research by Bitzan and Kruzich (1990), who found that the vast majority of residents in 54 nursing homes (87%) had close associations with at least one person outside of the homes, with some of these residents having associations with people inside the home as well, and only 5% of their sample who had limited associations to people in the institution. Results from these studies support our findings. Our results suggest is that for the most part, residents did have access to their family and friends outside of the institutions and did not experience a total institution type environment. Therefore, contextually, Goffman’s theory did not apply for this sample and adverse impacts of severed ties with the outside world (a defining feature of total institution theory), could not be adequately tested. An interesting question is raised by our data regarding the universal nature of the totalistic institutional features, particularly in terms of absence of linkages between the social world of residents and the outside world. While this sample reflects newly institutionalized persons in an earlier era, Goffman’s theory was developed around the same time frame as when the data was collected. Despite data not supporting Goffman’s theories in this setting, we do not believe that data from our research assails the fundamental tenets of total institution theory. Rather, we find evidence of diversity in the degree of totalistic features among institutions. Characteristics of this sample may be attributable to these low rates of experiencing a more total institution. This study had relatively few residents with cognitive impairments, with less than 10% of the sample with some impairment, who answered four or more questions incorrectly. This compares with 51% of nursing homes residents on average were cognitively impaired and with 23–42% of residents with cognitive impairment in assisted living/residential facilities (Zimmerman et al., 2003). High rates of good cognitive functioning may have contributed to this sample being able

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to maintain their social connections, whereas studies that include a more cognitively impaired sample may find that residents lose these connections. Furthermore, as the institutions in this research were non-profit, our findings do not rule out expectations that residents in for profit homes experience greater barriers in connecting with family and friends outside the institutional walls (Olson, 2006). Finally, it may be that over time, residents in present day long-term care institutions experience increased barriers and frailer residents now enter institutions, since the data was collected. We acknowledge evidence from other studies of persisting barriers between the institution and representatives of the outside world. A few studies point to the potential increase in family involvement that can occur. Specifically, Stafford found that some family members were able to interact on a closer emotional and personal basis with residents, now that they no longer had to provide physical care for them (2003). However, other empirical research found a reduction of family involvement post-institutionalization. Port et al. (2001) found that from 1,441 interviews with significant others of residents in nursing homes, contact decreased by about half after residents were admitted, as compared with contact pre-admission. In another study, Port (2004) considered 93 nursing home family caregiverresident pairs to examine the barriers to family involvement. Results show that fewer visits by family members was due to caregivers having more difficulty finding transportation, having poorer relationships with the staff, and to caregivers having a smaller supportive network of family and friends. Additionally, Yamamoto-Mitani, Aneshensel, and Levy-Storms (2002) found among the 210 relatives of nursing home residents with dementia, those who visited the resident more often were the spouse of a resident, were less educated, had a previous close relationship with resident, had a strong sentiment against placement, and lived closer to the facility. What these studies suggest is that for long-term care institutions in more recent times, families may be facing barriers to interacting with residents in these institutions. Overall, while previous research did indicate the limitations placed on families in maintaining contact with residents in long-term care, this occurrence only happened for a small proportion of this sample (16%). This does not negate the importance of understanding barriers, but does underscore that for many residents in some institutions, these barriers are not as severe. Merton and Kitt’s concept of anticipatory socialization was applied to this institutionalized sample (1950) in an effort to better understand extra institutional influences on residents’ quality of life. While much of the literature assumes that older adults did not want to move to long-term care,

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this research found fairly high levels of anticipatory socialization where only a small portion felt reluctant to move (10.9%), did not have input in the decision process involved prior to moving (8.7%), and/or abruptly decided to move within the last month (22.9%). Therefore, for a vast majority of residents, moving into long-term care represented a move they preferred to make. Results from this sample show higher levels of involvement and choice on the part of residents to be in these institutions than did previous research. While this research found that 44% of this sample made the decision to move on their own, a qualitative study on 52 older adults’ respondents found that only 24% of their sample made the decision to move by themselves (Nakashima, Chapin, Macmillan, & Zimmerman, 2004). Furthermore, researchers found that the transition into a nursing home is typically involuntary, with the decision to move into a long-term care facility often made by others, where many may enter one against their will (McAuley & Travis, 1997; Thorson & Davis, 2000; York & Caslyn, 1977). Our study, contrary to more recent studies found higher levels of anticipatory socialization of respondents. Differences may be due to this sample entering facilities for the elderly when they were more physically healthy and had better cognitive functioning. Future studies could expand upon the work on anticipatory socialization, in determining the role that physical frailty and cognitive impairment may have on limited anticipatory socialization. Bivariate correlations between demographic characteristics, anticipatory socialization, and social typologies with assessment of quality of life support the second hypothesis, but not the first. Noteworthy, social structural positions did significantly affect wellbeing of respondents, as demographic and personal characteristics influenced health and quality of life. For example, after entering an institution, older people and people born outside of the United States had lower morale. This further supports the importance of sociological interpretations, where outcomes are in part based on social characteristics. The first hypothesis was not supported by data. Results did show that residents with close associations exclusively inside the institution had the best self-rated health (r ¼ 0.21). Social typologies, however, were not related to morale. Therefore, while the first hypothesis was not supported, the link between health and social connectedness did reveal an important finding. That is, families were more likely to remain connected to residents who rated their health more negatively. Families endeavored to maintain their connections with loved ones after they have moved into long-term care, which was especially true when loved one was sicker. Families worked towards keeping a linkage with loved ones despite barriers to their

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involvement, which may have limited the negative experiences of morale. Future research on the role of families in minimizing stressors should examine the dyad of the caregiver and the care recipient in long-term care. This would further help us to understand the role that families play in the actual lives of residents in long-term care settings. Anticipatory socialization had a significant impact on quality of life outcomes, supporting the second hypothesis. As bivariate correlations show, anticipatory socialization factors played a significant role in predicting a better quality of life. Findings on anticipatory socialization support prior empirical and conceptual writings. Settersten proposed that transitions into institutions that are more scheduled, where residents previously planned on moving, resulted in an easier adjustment to long-term care (Settersten, 1999). Furthermore, those who voluntarily made a decision, such as leaving a job or transitioning from retirement into a nursing home, were more likely to have a positive experience (Pearlin & Yu, 2000). This theory was empirically tested, with results supporting voluntarily retirement as leading to better adjustment and to better ratings of health than those who involuntary retired (Shultz, Morton, & Weckerle, 1998). Findings from our study have implications for policy and practice. Accordingly, they point to the value of involving older adults in the decision to move to long-term care. If a move to a long-term care facility is necessary, it is still important to involve a person with both physical impairments and with cognitive impairment in the actual decision process. Even for those elders more reluctant to move, it may be useful to have them visit the facilities with their family. These older adults, can, thereby help to decide which facility they move to. Furthermore, by socializing elders as to what they can expect once they move to these institutions, it can mentally prepare them and will hopefully make the adjustment process that much easier and lead to a better quality of life. Institutions themselves can help with the process by meeting with both the potential resident and with their family member(s) to discuss what their expectations for care are and what families and future residents can expect from the facility and from staff after the older adult has moved in. Any worries or concerns can be discussed at that point and compromises and understandings can be reached prior to the actual move. This would increase anticipatory socialization for both the families and the future resident and would therefore increase chances for a better adjustment process and lead to better satisfaction with the institutional environment. Overall, this research points to the potential positive outcomes and experiences that can result from living in long-term care, where many residents can hope for a good adjustment and an overall positive quality of life. This

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positive nature of long-term care is supported in prior literature (Chou, Boldy, & Lee, 2002; Kahana, 2005; Kruzich, Clinton, & Kelber, 1992; Mitchell & Kemp, 2000). Stafford found that many residents do find life in nursing homes meaningful, where many adapt and find new relationships with people inside the home, staying involved in activities and developing new roles (2003). The institutions studied in this research were not found to be total institutions, but instead, many residents were able to maintain close relationships with family and friends as they did prior to moving to these facilities. Furthermore, many of the residents actually chose to move to these institutions and knew what to expect once they moved in. As a result, they were better adjusted to life after eight months in long-term care, as demonstrated with a better quality of life, and were more satisfied with their lives in longterm care facilities. This research, as well as others, support that, for a substantial portion of residents, a good and easy adjustment to life in longterm care is a distinct possibility, where the result is a good quality of life and satisfaction with their new home.

ACKNOWLEDGMENT This study was supported by a grant from the National Institute on Aging awarded to the co-author.

REFERENCES Beuf, A. (1989). Biting off the bracelet: A study of children in hospitals. PA: University of Pennsylvania Press. Bitzan, J. E., & Kruzich, J. M. (1990). Interpersonal relationships of nursing home residents. The Gerontologist, 30, 385–390. Castle, N. G. (2006). Measuring staff turnover in nursing homes. The Gerontologist, 46, 210–219. Chenitz, W. C. (1983). Entry into a nursing home as a status passage: A theory to guide nursing practice. Geriatric Nursing, 4, 92–97. Chou, S., Boldy, D. P., & Lee, A. H. (2002). Resident satisfaction and its components in residential aged care. The Gerontologist, 42, 188–198. Clark, P., & Bowling, A. (1990). Quality of everyday life in long stay institutions for the elderly. An observational study of long stay hospital and nursing home. Social Science Medicine, 30, 1201–1210. Goffman, E. (1961). Asylums: Essays on the social situation of mental patients and other inmates. Chicago, IL: Aldine Publishing Co. Gubrium, J. (1993). Speaking of life: Horizons of meaning for nursing home residents. Hawthorne, NY: Aldine de Gruyter.

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Gubrium, J. F. (1975). Living and dying at Murray Manor. NY: St. Martin’s. Henry, J. (1963). Culture against man. NY: Vintage. Kahana, E. (2005). Institutionalization. In: G. Maddox (Ed.), Encyclopedia of aging. New York: Springer. Kahana, E., Kahana, B., & Young, R. (1987). Strategies of coping and postinstitutional outcomes. Research on Aging, 9, 182–199. Kahn, R. L., Goldfarb, A. I., Pollack, M., & Peck, A. (1960). Brief objective measures for the determination of mental status in the aged. American Journal of Psychiatry, 117, 326–328. Kayser-Jones, J. S. (1981). Old, alone and neglected: Care of the aged in Scotland and the US. Berkeley, CA: University of California Press. Kayser-Jones, J., Schell, E., Lyons, W., Kris, A. E., Chan, J., & Beard, R. L. (2003). Factors that influence end-of-life care in nursing homes: The physical environment, inadequate staffing, and lack of supervision. The Gerontologist [Special Issue II], 43, 76–84. Kitchener, M., Hernandex, M., Ng, T., & Harrington, C. (2006). Residential care provision in medicaid home- and community-based waivers: A national study of program trends. The Gerontologist, 46, 165–172. Kruzich, J. M., Clinton, J. F., & Kelber, S. T. (1992). Personal and environmental influences on nursing home satisfaction. The Gerontologist, 32, 342–350. Lawton, M. P. (1975). The Philadelphia Geriatric Center Morale Scale: A revision. Journal of Gerontology, 30, 85–89. Liang, J. (1986). Self-reported physical health among aged adults. Journal of Gerontology, 41, 248–260. Lieberman, M., & Tobin, S. (1983). The experience of old age: Stress, coping and survival (pp. 312–332). NY: Basic Books. McAuley, W., & Travis, S. (1997). Positions of influence in the nursing home admission decision. Research on Aging, 19, 26–45. Merton, R. K. (1957). Social theory and social structure. London: Collier-Macmillan. Merton, R. K., & Kitt, A. (1950). Contributions to the theory of reference group behavior. Glencoe, Illinois: Free Press. Mitchell, J. M., & Kemp, B. J. (2000). Quality of life in assisted living homes: A multidimensional analysis. Journal of Gerontology B Psychological Social Sciences, 55, 117–127. Mollica, R., & Johnson-Lamarche, H. (2005). Residential care and assisted living compendium 2004. Washington, DC: Department of Health and Human Services, Office of Assistant Secretary for Planning and Evaluation. Nakashima, M., Chapin, R. K., Macmillan, K., & Zimmerman, M. (2004). Decision making in long-term care: Approaches used by older adults and implications for social work practice. Journal of Gerontological Social Work, 43, 79–102. Noelker, L. S., & Poulshock, S. W. (1984). Intimacy: Factors affecting its development among members of a home for the aged. International Journal of Aging and Human Development, 19, 177–190. Nolan, M., & Grant, G. (1992). Mid-ranging theory building and the nursing theory-practice gap: A respite care case study. Journal of Advanced Nursing, 17, 217–223. Nolan, M., Walker, G., Nolan, J., Williams, S., Poland, F., Curran, M., & Kent, B. C. (1996). Entry to care: Positive choice or fait accompli? Developing a more proactive nursing response to the needs to older people and their carers. Journal of Advanced Nursing, 24, 265–274. Olson, L. K. (2006). The inner world of nursing homes. The Gerontologist, 46, 293–297.

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Pearlin, L. I., & Yu, Y. (2000). Role loss, personal loss, and self-esteem: Intergenerational changes and continuities. In: K. W. Schaie & J. Hendricks (Eds), The evolution of the aging self (pp. 99–112). New York: Springer Publishing Company. Port, C. L. (2004). Identifying changeable barriers to family involvement in the nursing home for cognitively impaired residents. The Gerontologist, 44, 770–778. Port, C. L., Gruber-Baldini, A. L., Burton, L., Baumgarten, M., Hebel, J. R., Zimmerman, S. I., & Magaziner, J. (2001). Resident contact with family and friends following nursing home admission. The Gerontologst, 41, 589–596. Savishinsky, J. S. (1991). The ends of time: Life and work in a nursing home. New York: Bergin & Garvey. Settersten, R. A. (1999). Lives in time and place: The problems and promises of developmental science. New York: Baywood Publishing Company, Inc. Shultz, K. S., Morton, K. R., & Weckerle, J. R. (1998). The influence of push and pull factors on voluntary and involuntary early retirees: Retirement decision and adjustment. Journal of Vocational Behavior, 53, 45–57. Shultz, R., & Brenner, G. (1977). Relocation of the aged: A review and theoretical analysis. Journal of Gerontology, 32, 323–333. Stafford, P. B. (2003). Gray areas: Ethnographic encounters with nursing home culture. Santa Fe, NM: School of American Research Press. Thorson, J., & Davis, R. (2000). Relocation of the institutionalized aged. Journal of Clinical Psychology, 56, 131–138. Vladeck, B. (2003). Unloving care revisited: The persistence of culture. Journal of Social Work in Long-Term Care, 2, 1–9. Vladeck, B. C. (1980). Unloving care: The nursing home tragedy. NY: Basic Books. Yamamoto-Mitani, N., Aneshensel, C. S., & Levy-Storms, L. (2002). Patterns of family visiting with institutionalized elders: The case of dementia. Journals of Gerontology Series B: Psychological Sciences and Social, 57B, S234–S246. York, J., & Caslyn, R. (1977). Family involvement in nursing homes. The Gerontologist, 17, 500–505. Zimmerman, S., Gruber-Balidini, A. L., Sloane, P. D., Eckert, J. K., Hebel, R., Morgan, L. A., Stearns, S. C., Wildfire, J., Magaziner, J., Hyg, M., Chen, c., & Konrad, T. R. (2003). Assisted living and nursing homes: Apples and oranges? The Gerontologist [Special Issue II], 43, 107–117.

SECTION IV: ACCESS, QUALITY AND SATISFACTION IN FOREIGN HEALTH CARE SYSTEMS

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THE TRIAD OF HEALTH CARE – ACCESS, QUALITY, AND COST: A STORY OF HUNGARY IN 2006 Katalin Papp and Beth Furlong ABSTRACT In a climate of ongoing political, economic, technological, and cultural changes in Western, Central, and Eastern Europe, this chapter describes the kinds of changes happening with the health care system and the preparation of health care professionals in one selected country, that of Hungary. Emphasis will be focused on the nursing sub-sector of the health system. Some comparison and contrast will be done between these systems in Hungary and the U.S. Changes will be presented in the context of the European Union and the Bolonga Declaration.

INTRODUCTION Change is the only constant. Hungarians have known this for centuries and have adapted to a multitude of changes and external forces. Now, in early 2006, having lived under Soviet occupation for almost 50 years from the 1940s to the late 1980s, they have entered into a new historical phase in their country’s history as they regained their country’s independence in the early Access, Quality and Satisfaction with Care: Concerns of Patients, Providers and Insurers Research in the Sociology of Health Care, Volume 24, 157–173 Copyright r 2007 by Elsevier Ltd. All rights of reproduction in any form reserved ISSN: 0275-4959/doi:10.1016/S0275-4959(06)24008-0

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1990s. What are the results of external and internal social forces on health, education, and nursing education systems undergoing these many forces? This chapter partially answers that question by presenting data about one important part of the health sector – that of nurses. This chapter will describe some of the current aspects of the Hungarian health care system, the nursing educational system, and the ongoing changes in both systems as currently influenced by the European Union (EU) in 2006 and the Bolonga Declaration on education in the EU. Some comparisons and contrasts will be done with selected aspects of the EU countries and the U.S. health care and nursing educational systems. Nurses constitute the largest segment of any country’s health care force – and are important actors in meeting health needs of every country’s population.

HUNGARIAN HEALTH CARE SYSTEM First, the Hungarian health care system will be described from a financing perspective. Health care is provided for all Hungarians by the government and the government’s responsibility is vested in the National Public Health and Medical Officer’s Service (Nursing in Hungary, 2004). The health delivery system is mixed governmental ownership (both central and local government). There is an emerging private sector which will be discussed later. There is entitlement to basic services (rescue, maternal and child health protection, and youth health) as a right for every citizen; the universal health insurance is based on a national risk pool with a comprehensive publicly funded benefit package. Sources of funding for the health system include the government, citizen contributions, and employer contributions. For example, in terms of citizen contributions, citizens make co-payments in both the health and social insurance benefit packages and make out-of-pocket payments for services that are outside of the social insurance benefit package. Citizen contribution to health insurance varies on a sliding scale by one’s salary. One example is a high school teacher who makes the equivalent of 500 U.S. dollars monthly – she would pay 11% of her salary to the health insurance system (Jeanna X., Personal communication, 02-27-06). However, there is also a private sector. Some families who need or wish to have extra care given to a family member for certain health needs may choose to pay for these services themselves. For example, in caring for a parent with a stroke, family members could receive up to 56 home visits a year by a nurse who implements nursing care. Because the number of home

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visits is limited, the family (if they have discretionary income) may pay for a private sector provider to provide extra care, i.e., they could pay for a social worker to come and help with basic care activities (bathing, transferring, eating, etc.). This trait of universal health care for all Hungarians differs from the U.S. system where 15% of the population does not have health care insurance and another 15% are underuninsured. The literature in the U.S. reflects the direct correlation between the lack of health insurance and lack of access to health care (Stanhope & Lancaster, 2004).

COMPARISONS AND CONTRASTS BETWEEN HUNGARY AND OTHER COUNTRIES Next, some comparisons and contrasts will be made between some population health problems in Hungary and some other countries. The Hungarian Department of Health Ministry (HDHM) has set many specific public health goals (www.eu.hu 2006). One goal that is frequently discussed among health professionals is the concern with the early mortality age of men in Hungary. Life expectancy is 68 years for men and 77 years for women (Nursing in Hungary, 2004, p. 4). Compared with 16 selected EU countries, Hungary has the lowest life expectancy of any other current EU country for both men and women. The countries included in this comparison were Austria, Belgium, Denmark, Finland, France, Germany, Greece, Ireland, Italy, Luxembourg, the Netherlands, Portugal, Spain, Sweden, and the U.K. These Hungarian statistics are worse than the U.S. in which longevity for men is currently 74 years and 79 years for women (Stanhope & Lancaster, 2004). Six years ago a study conducted by the Organization for Economic Cooperation and Development (OCED) and the World Health Organization (WHO) reported that life expectancy for Hungarian men was 60 years and 68 years for women. At that time in the U.S. it was 68 years for men and 73 years for women (Anderson & Hussey, 2001). Thus, improvement has been made in both countries. One of the contributing factors for this early mortality age of men in Hungary is smoking. Smoking continues at a higher rate in Hungary than in the U.S. Again, the HDHM has programs for this. In 1998 the OECD and the WHO study compared the performance of health care systems in 29 industrialized countries (Anderson & Hussey, 2001). Six years ago the smoking behavior statistics were about double for Hungarian men when compared to American men (44% versus 23%) and also higher for

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Hungarian women (27% versus 18%) (Anderson & Hussey, 2001). In a similar way, alcohol consumption was also higher in Hungary – the annual per capita consumption was 12.9 liters versus 8.5 liters in the U.S. However, Hungary does better than the U.S. with the public health indicators of childhood immunization rates of DPT and measles. The 1998 OCED and WHO study found the above two immunization rates to be at 100% for Hungary and at 84% and 92%, respectively, for the U.S. (Anderson & Hussey, 2001).

INTERNATIONAL INFLUENCES ON MIGRATION OF HEALTH PROFESSIONALS Before discussing the nursing educational system and how nurse leaders are implementing changes to meet needs of three parties: (1) patients, (2) students, and (3) governmental officials within the larger political context of the Western European Continent, brief discussion will be given of the position of physicians. Because physicians earn about one tenth of their counterparts in the West, they frequently fly to the U.K. and work on weekends where they can make more money on four weekends than they can make working full time in Hungary. The UK is one EU country that accepts physicians from all EU countries (Personal communication, Prof. Tibor Frank 01-31-06). This particular aspect of the EU agreements has taken on increased scrutiny in the early months of 2006 as there have been major disagreements among EU countries about the ease of travel and employment of all service workers within and among EU countries as non-nationals seek employment in a variety of other EU countries. For example, British Broadcasting Television (BBC) and EuroNews reported in early 2006 on a daily basis about these concerns. A compromise was made among EU policymakers that exempts health providers from some of the EU policies, i.e., health provider service workers have to meet the requirements of the host country in which they are going to work. Some of the EU countries (the more Western ones) were concerned about ‘cheap labor’ flooding in from more Eastern countries of the EU. During the third week of February 2006 these television news shows reported on the concerns as well of the first strike in Germany in 14 years by service workers – which included physicians and nurses. This strike was to protest the proposal in which the German health providers and other service workers were being asked to work an additional one and onehalf hours weekly with no increase in pay. Hungarian physicians and nurses are

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working in changing fluid economic and political times on the European continent. The above cross-border migration of health and other workers from Eastern to Western European countries is one challenge being discussed. A second concern relates to availability of information when health providers migrate. Watson (1995) describes the absence of a single clearing house of information on training opportunities, job vacancies, registration, etc. for health providers. Other concerns Watson noted include: (1) a lack of specific directives for health providers, (2) confusion on the necessary linguistic tests, (3) confusion on entitlement to health care by patients, i.e., what forms and signed prescription forms do patients need?, and (4) extent of health care coverage for non-nationals. However, in the decade since Watson’s concerns, changes have been made whereby individuals can travel from one country to another and have their health care needs met in another country other than their own by the use of the E-111 card. The Hungarian author of this chapter has used such a cross-border health insurance card with ease as she has traveled in several European countries. For those above physicians seeking employment outside Hungary, they may choose to reflect on an aspect of the larger public health and environmental sectors of society – do they travel with the very inexpensive intracontinental airfares or by train? In early 2006, these intracontinental airfares are less expensive than train fare (EuroNews 02-18-06; Ron Schmitz, Personal communication 02-09-06). In a country (Hungary) and in a Western European culture where television programs are daily focused on energy conservation and people are educated on environmental protection which is best protected by use of trains versus airplanes, the individual versus population approach to health care decision-making can be a weekly decision for the physician. Does he maximize his individual efficiency or choose transportation that is better for the population’s health?

NURSING EDUCATION SYSTEM IN HUNGARY The major part of this chapter will focus on the nursing aspect of the health system. ‘Nurses and midwives constitute the greatest single group of health care workers (accounting for about 60% of the budgets). Therefore, they are the most important human resource required for high quality health care and health development’ (Nursing in Hungary, 2004, p. 5). The next segment of the chapter describes the changing nursing education system. This will be done by concluding with a case study approach of describing one

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School of Nursing – that of the Faculty of Health Sciences of the University of Debrecen in Nyiregyhaza, Hungary – one of four collegiate Schools of Nursing in Hungary. However, first, a brief description will be given of the history of nursing education in Hungary during the 20th and 21st centuries. There have been many changes in nursing education in Hungary as there have been in the U.S. The description in this chapter will only paint the broad themes of change. During Soviet occupation, students entered nursing at a young age – about 14, or during the equivalent of what would be secondary school or high school in the U.S. (McDermott, 1996). In the early 1990s, ‘Hungary has been pushed in five years to advance nursing to the Western European level following the collapse of the country’s socialist government’ (McDermott, 1996, p. 1). During the 15 years since re-gaining independence in the early 1990s, there have been many curricula changes – with these being three major changes: (1) having admission criteria for both three-year programs and four-year baccalaureate programs be a student who has finished 12 years of elementary and secondary school, (2) initiation of four baccalaureate schools of nursing in the country, and (3) having many kinds of ‘bridge curriculums’ to facilitate nurses previously prepared in other ways to make the transition to the new levels of education (Zoltan Balogh, Personal communication, 05-11-06). Now, in 2006, the two main ways of preparing nurses in Hungary are admitting the high school graduate to either a three-year school or to a college baccalaureate program. Thus, given the historical timeframe of 65 years, Hungarian nurse leaders have made many changes in the last 15 years to advance the educational preparation of nurses. In the early 1990s, therefore, there was re-structuring to meet the directives of the EU and the Council of Europe recommendations about nursing education. As stated above, one major change was the admission criteria – now the student has to finish secondary school (similar to the U.S. high school). At the minimum, the program is to be delivered in a full-time threeyear course consisting of 4,600 teaching hours and a certificate is awarded. Following that, nurses could study further for more specialization. In 2006 most Hungarian nurses are prepared at the three-year level. The baccalaureate program is four years long and entitles the graduate to pursue graduate studies. While there are both parallels and differences between Hungary and the U.S. in these educational systems, one component will be analyzed here. In both countries the nurses who went to the three-year programs have the option and the possibility of returning to college to obtain their baccalaureate degree and/or to then pursue graduate study if they wish. But, a significant difference between Hungary and the U.S. is that

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nurses who obtain their baccalaureate degree in Hungary then receive twice the income. This is in stark contrast to the situation in the U.S. – the general rule is that there is no salary differentiation among staff nurses – whether they were educated in a two-year Associate Degree community-college program, in the former hospital diploma three-year program, or in a four-year baccalaureate program. For the American author of this chapter, this difference was a resounding wake-up call. This stark difference in further education sought by nurses, salary differential in nursing practice, etc. will be further described in the next section.

NURSING EDUCATION SYSTEM IN THE U.S. The traditional way to educate nurses in the U.S. in the first half of the 1900s was in the three-year hospital diploma programs – the nursing student attended this after high school. As the 20th century progressed, the call for baccalaureate education as the ‘entry-into-practice’ model was heralded by nurse leaders. By 1965 was the now classic recommendation of the American Nurses Association, i.e., the baccalaureate degree was to be the educational model of ‘entry-into-practice’ to be a registered nurse. That elicited much controversy from nurses – many who were educated in the diploma schools. The only state that passed a law mandating this recommendation was North Dakota. While states legally control Nurse Practice Acts which include licensure requirements, no other state was able to politically forge the groups necessary to change state legislation. A second variable arose in midcentury – that of the introduction of the two-year Associate Degree nurse, also a registered nurse – but prepared educationally in a two-year community college. While the utilization of this kind of health provider quickly changed to be the same as the baccalaureate nurse, this was not the original intent. Thus, at the staff nurse level in hospitals, all nurses are generally viewed the same – regardless of how they were educated. Now, at the beginning of the 21st century in the U.S., two-thirds of all nurses are prepared at the Associate Degree community college level and less than 40% of nurses are prepared at the baccalaureate level. Nurse leaders for a half a century have been concerned about the lesser educational preparation of nurses while other health professionals have increased the educational level of their ‘entry-into-practice’ requirement to higher levels, i.e., from a baccalaureate degree to either a masters degree or a doctoral degree. Some examples include occupational therapy, physical therapy, etc. Thus, an occupational therapist or a physical therapist will be educated, at

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the minimum, with a master’s or a clinical doctorate degree. In comparison, most patients in the U.S., will be cared for by a nurse who is educated with two years of preparation, i.e., at the Associate Degree level. A compounding problem to the 66% of nurses prepared at the two-year level is that only 20% of them go on and seek a baccalaureate degree. Part of this is related to not having a salary incentive – which is the exact opposite of the health system financing in Hungary. Other incentives for the Hungarian nurses to obtain a baccalaureate degree include wanting more knowledge and wanting to have a college degree. In the U.S., there are registered nurses who also seek a baccalaureate degree for these reasons. In addition, certain positions in nurses’ U.S. work settings may require a baccalaureate degree. However, frequently nurses who return for more education are doing so because it is a necessary and intermediate step they have to take to obtain their next goal – that of master’s education to be a nurse practitioner, nurse anesthetist, clinical specialist, or nurse-midwife. As one compares these two countries’ systems, one has to note that perhaps a larger segment of nurses educated originally in shorter programs in Hungary are going back in later life to obtain more knowledge – whereas in the U.S., this is not the case. This can be a detriment to patient care and patient outcomes unless individual nurses are strongly disciplined to pursue continuing education on their own. Before discussing patient outcomes, a summary will be given of the 2006 methods of nursing education in both countries. To be a nurse in Hungary, the high school graduate has two choices – to study in a three-year school or to study in a baccalaureate program. Most study in the three-year school. To be a nurse in the U.S., the two most common methods are for the high school graduate to study in a two-year community college or in a baccalaureate program. Sixty percent of U.S. nurses are prepared at the two-year college level. This chapter is presenting the broad themes of preparation. There are many other distinctions and nuances in both countries, i.e., in the U.S. some universities offer a masters-level entry-into-practice, many colleges offer a baccalaureate one-year program for students who already have a degree in another discipline, etc. In summary, what is presented in this chapter are the major ways that nurses are being educated to meet health needs of populations in two countries. The concern with patient outcomes has taken on special emphasis the past five years within nursing education. Strongly emphasizing quality patient outcomes is now an important component method of teaching nursing. All students are expected to be knowledgeable of evidence-based practice (EBP) and to use international research databases to use the most recent and recognized research in their care of patients (Melnyk & Fineout-Overholt,

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2005). While EBP is relatively new within the past 35 years in the U.S., it is the model of teaching in all health professions and it is the expected practice of health professionals. However, the concern with many health professionals not practicing this way is reflected in research studies that show a difference in the use of EBP among health professionals – by the year in which they were educated, their competence with information technology skills, their knowledge of research, etc. Nurses prepared at the two- and three-year levels are less competent in EBP. One final variable will be discussed that has received much attention in the U.S. – that of medical errors. The 2000 Institute of Medicine report – To Err is Human – was a watershed report. Thousands of chapters have been written on this topic in the last several years alerting health professional and patients to the concerns with a variety of errors in health settings (Milstead & Furlong, 2005). ‘As many as 195,000 people a year could be dying in U.S hospitals because of easily preventable error’ (Healthcare Update News Service, 2004). Since the extent of the problem was published, there have been multiple ways of addressing the problem. Like EBP, addressing these phenomena of the health system has been especially important in enhancing patient outcomes in the U.S. Given the above U.S. system’s facts and changes: (1) two-thirds of all American nurses are educated at the two-year level, (2) there has not been significant movement since 1965 to have the baccalaureate degree as the ‘entry-into-practice’ educational model for registered nurses, (3) as a general rule, there is no salary incentive nor professional work setting competence differentiation between the two-, three-, or four-year prepared nurse, (4) there is great concern in both the health professional and lay literature about having quality patient outcomes and decreasing medical errors, and (5) there is great emphasis on the EBP model of practicing health care – U.S. nurse leaders have called for the development of a new advanced nurse role – that of the Clinical Nurse Leader (CNL). Nurse leaders of the American Association of the Colleges of Nursing (AACN), which accredits baccalaureate programs, have analyzed the above nursing and health system data and concerns along with (1) the nursing shortage, (2) the anticipated health needs of the country as the ‘baby boomers’ age, (3) expanding research, knowledge, and information technologies, (4) globalization, (5) increasingly diverse populations in the U.S., and (6) the need for increased interdisciplinary professional education and team practice. To best meet the needs of the U.S. public, these leaders have proposed a new way to educate nurses and have recommended what their area of practice would be. ‘The CNL functions within a microsystem and

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assumes accountability for health care outcomes for a specific group of clients within a unit or setting through the assimilation and application of research-based information to design, implement, and evaluate client plans of care’ (AACN, 2004, p. 5). These are the 10 assumptions for preparing this new masters-level CNL: (1) practice is at the microsystem level, (2) client care outcomes are the measure of quality practice, (3) practice guidelines are based on evidence, (4) client-centered practice is intra- and interdisciplinary, (5) information will maximize self-care and client decision-making, (6) nursing assessment is the basis for theory and knowledge development, (7) good fiscal stewardship is a condition of quality care, (8) social justice is an essential value, (9) communication technology will facilitate the continuity and comprehensiveness of care, and (10) the CNL must assume guardianship for the profession of nursing. Several schools of nursing have begun such programs in the past two years. One unique feature is that the school must partner with a health organization – thus, there is a commitment from a nursing practice site to implement this kind of advanced nursing in that particular organization. There is a variety of educational approaches being taken by different schools in implementing this new graduate program – some are doing it as a traditional master’s program, while others are targeting the two- or three-year prepared registered nurse who does not have a baccalaureate degree, and some other schools are targeting those students who have bachelor or higher degrees in other subjects and would prefer obtaining their second degree at the master’s level in nursing versus the baccalaureate degree. Thus, U.S. nurse leaders are attempting to best meet the needs of the U.S. health care system – given its variables. In a similar way, nurse leaders in Hungary are responding to the variables they face. And, chief among them is the Bolonga Declaration. It is beyond the purview of this chapter to discuss all the differences and parallels of the Hungarian nursing educational system with the U.S. system. But, for the U.S. author of this chapter, three strengths of the Hungarian health and nursing education systems were quite obvious: (1) there is universal health care for all Hungarians, (2) there is a salary incentive for nurses to pursue more education given how they were initially educated, and (3) there is a distinction in national examination content when testing for initial safety of the three- and four-year prepared nurse. As noted in an earlier section of this chapter, all Americans do not have access to health care. American nursing leaders would like a salary distinction in practice for the two-, three-, and four-year prepared nurses – but have not been able to accomplish this. Neither has there been the ability to have distinctive NCLEX exams for the new graduate nurse prepared at

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different educational levels. The NCLEX is the U.S. national exam which ensures minimal safety knowledge of the beginning nurse for the public.

IMPACT OF THE BOLONGA DECLARATION The Bolonga Declaration of the EU is having a dramatic impact on all of higher education in Hungary and other countries. And, this is reflected in the kind of curriculum changes that nursing faculty in Nyiregyhaza have made and that they will implement in the Fall of 2006. The goals of the Bolonga Declaration are the following: (1) to help make European college degrees more competitive, (2) to harmonize the college degrees among all countries on the European Continent, (3) to acknowledge and recognize the effects of globalization, (4) to be a quality improvement strategy, (5) to increase students’ mobility globally in their ability to transfer credits, and (6) to better integrate with the U.S. education system (Mr. Zoltan Loboda, Personal communication 01-31-06; Prof. Zoltan Abadi-Nagy, Personal communication 01-21-06). The Bolonga Declaration is operating at a time when the availability of college education is far more accessible for Hungarian youth than 16 years ago before the collapse of the Berlin Wall and the resultant independence in Hungary in the early 1990s – college admissions have tripled since that time (Personal communication, Prof. Zoltan AbadiNagy 01-31-06). ‘The Bolonga Process is currently the most important initiative for the reform of higher education in Europe’ (http://www.unesco.org/iau/he/he/ bologna_process/index.html, retrieved 2-21-06). The goals described in the previous paragraph will be forged by having colleges have a common framework for the bachelors, masters, and doctoral degrees. The ultimate goal is to have an ‘European Higher Education Area’ by 2010. By focusing on such common frameworks, achievement at one level can be recognized by all countries and students could proceed with their education in another country for a higher degree. The Bologna Process represents three decades of collaboration in Europe among ministers of higher education. Many of these ideas were solidified into the document, The Magna Charta of University, which was signed in the late 1980s at the University of Bolonga. It was in June 1999 that the Bolonga Declaration was signed. This Bologna Process continues to be an intergovernmental initiative which continues by many agreements and commitments made by the respective appropriate national governmental leaders. As time has progressed, this Bologna Process has necessarily been increasingly linked to the EU. This happened because

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national initiatives themselves were not enough and the EU has provided avenues for programs of mobility and a variety of exchanges. Now, the EU is increasingly taking a larger role in the Bologna Process initiatives and in a leadership role. Since the original Bologna Declaration in 1999, the Bologna Process has expanded its goals, the number and breadth of its projects, and the number of participating countries. All member countries of the EU and some neighboring countries belong to it. Membership includes Albania, Andorra, Austria, Belgium, Bosnia and Herzegovina, Bulgaria, Croatia, Cyprus, The Czech Republic, Denmark, Estonia, Finland, France, Germany, Greece, Holy See, Hungary, Iceland, Ireland, Italy, Lativia, Liechtenstein, Lithuania, Luxembourg, Malta, the Netherlands, Norway, Poland, Portugal, Romania, Russian Federation, Serbia and Montenegro, Slovak Republic, Slovenia, Spain, Sweden, Switzerland, the former Yugoslav Republic of Montenegro, Turkey, and the U.K. Selected ways in which the Bolonga Declaration is affecting nursing education at this Hungarian institution include the following: (1) changing curriculum format to meet international criteria, (2) increasing the number of class hours from 3,700 to 4,600, and (3) planning a masters program to start in 2010 (Adrienn Sikert, Personal communication 02-07-06). Faculty have been future-oriented as they have been planning the above third goal – by 2010 they will have graduated their first bachelor’s class under the new curricular system and wish to have a graduate program in place for students to continue their education. They continue to work on curriculum development and have had various proposals and recommendations already accepted. While there are two master’s programs in the country in Budapest and Pecs (center of the country and in the southern region) there is no master’s program in this northeast region. Thus, it would help meet a regional health provider need. In terms of nursing faculty development, two faculty are pursuing doctoral studies. One is studying for a Ph.D. in pedagogy from a nearby Hungarian university and one faculty is planning to pursue a doctoral degree in nursing in the Czech Republic as there are no Ph.D. programs in nursing in this country. These individuals are indicative of the initiative and professionalism being shown by nurse leaders to further the care of patients and the profession of nursing in their country. The college president is extremely supportive of facilitation of this (Dr. Lukacsko Zsolt, Personal communication, 02-13-06). By comparison, one can make parallels to the nursing educational system in the U.S. The Women’s Movement in the 1970s had important implications for many women in all sectors of society, i.e., all women sought more education. By the late 1970s and early 1980s one way this was reflected in higher nursing

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education was the great number of middle-age women nurse educators returning to school for their Ph.D.s. As nurse faculty began doing this, they frequently obtained their Ph.D.s from university departments of education. As more Ph.D. programs in nursing became available, then nurses pursued the doctorate in their own nursing specialty. Geographic lack of access to programs and family obligations influenced decisions of American women – as it does in Hungary. For example, in Nebraska, there was no Ph.D. program in nursing until the 1990s. Nurse educators wishing to further their education chose re-location, summer programs elsewhere, or seeking a Ph.D. in a related disciplinary area. Distance programs would not become more commonly available until the early 1990s. Thus, there are many parallels to the development of nursing education expertise in the two countries – with only the time factor being different, i.e., when it happened. As Hungarian faculty prepare curriculum change at the bachelor’s level, these are some of the directives of the EU for the education of nurses: (1) admission of students who have completed 10 years of general education, (2) students shall be full time, (3) the education system shall be at least three years in length with 4,600 hours of theoretical and clinical education, (4) theory content should represent at least one-third of the total education and clinical education should represent at least one-half of the total education, (5) definitions are given for what is meant by theoretical and clinical education and that such is taught by competent faculty members, and (6) a variety of expectations are given for learning outcomes for students in order to deliver safe quality care to patients – whether they be individuals or populations (Directive 2005/36/EC, 2005, L255/40). This sixth trait is made more explicit with the following: the student is expected to have skills to care for both ill and well individuals and small groups, to implement health education, and to not only be an individual health provider but to both work well as a team member and a team leader. The educational process includes not only the basic physical sciences but also the social sciences along with nursing science courses and ethics courses. Faculty and administrators are responsible for provision of adequate clinical education in appropriate settings for students to learn the requisite skills. Again, teamwork is encouraged as students are to experience working in tandem with other health professionals. It is important to re-emphasize the third factor above – the EU is mandating a full-time three-year program of 4,600 hours, but is not mandating a baccalaureate degree as the ‘entry-into-practice’ model. Hungarian students in the B.Sc. program also take courses in the humanities, i.e., law, art, ethics, etc. Students in both countries (Hungary and the U.S.) learn the Code of Ethics of their respective nursing professions.

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CASE STUDY: A COLLEGE IN NYIREGYHAZA, HUNGARY The faculty in this college in Nyiregyhaza are teaching in an institution that was part of the educational institutional reorganization affecting many colleges and universities in the early 1990s in Hungary. This college was founded in 1990 as a branch of the University Medical School of Debrecen (Jubileumi Evkonyv, 1990–2000). The history of nursing education in Hungary began in 1927 with Prof. Jozesf Csiky starting a three-year training program and then with the assistance of the Rockefeller Foundation, he began an institute for diaconesses. Besides being a branch of the University Medical School of Debrecen, this college collaborates with the other three colleges in this city – the Greek Catholic Theological Academy, the Agricultural College of the GATE, and the Bessenyei Gyorgy Teacher’s Training College. Because of the reorganization noted above in the early 1990s in Hungary, the latter two colleges are now known as Nyiregyhaza College. ‘The College was established to help tackle the task of economic renewal and reorganization of public health and social politics in the eastern region of Hungary, to reduce the problems of expert provision, to give opportunity for graduate students for further education and to contribute to the reduction of unemployment, by undertaking the training of experts needed in this region’ (Jubileumi Evkonyv, 1990–1995, p. 13). When the college started, it educated health visitors and set goals for educating students in social work and in health information management. A health visitor is a unique type of health professional found in Hungary – this person is educated to care for women and children beginning with pregnancy and ending when the young person reaches age six. In 1990 the College began the health visitor program as a three-year program for full-time students; by 1993 it changed the health visitor program to a four-year program for full-time students. By the fourth year of its functioning, 1993, the College was educating B.Sc. nurses. This branch ‘started with a new educational attitude as a correspondence course’ (Jubileumi Evkonyv, 1990–1995, p. 25), i.e., this was a new way of thinking of how to educate a nurse. The new program of nurses was developed under the auspices of Project Hope and in light of the European Council’s recommendations. The 1993 program for nurses was a four-year program for full-time students and was a three-year part-time program for nurses who had been prepared at the three-year level, had been working, and now wished to obtain their baccalaureate degree. By 1997, the latter part-time program was changed from three years to a four-year program. The curriculum for current part-time nurses in 2006 is that they spend

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one week on campus every month for four years and do the remaining class work by correspondence. In addition, this College has established a satellite campus in a nearby town of Gyula – both a full-time four-year and a fouryear part-time education program – the latter being for the nurses prepared at the three-year level who wish to obtain their baccalaureate degree. An analysis of the early history of this Faculty of Health Sciences reflects some similarities to concerns noted in the above sections of this chapter about the amount of education for different health and social work professionals. When the social work program started in 1990, it, along with the health informatics management program which began in 1991, were both four-year programs. Thus, in comparison to the history of nursing in Hungary – a general trend is that there is less education for nurses. When the professions of social work and health informatics management started, they began with an entry-into-practice as a four-year baccalaureate degree versus a three-year program. Further, most nurses in Hungary are prepared in noncollege settings at the three-year level. Finally, Hungarian nurse leaders voice the same concern that U.S. nurse leaders voice – employers are following a trend line of employing the less educated nurse. Thus, the same phenomena is seen in both Hungary and the U.S. – other health professionals have more education for their ‘entry-into-practice.’ Gender issues and nursing also have similarities between Hungary and the U.S. – nursing is predominantly a women’s profession in both countries. Men represent about 5% of nurses in Hungary while men constitute about 10% of nurses in the U.S. This is a variable that affects the ‘entryinto-practice’ levels of nursing and how nursing is perceived. The 1996 report of the first five years of this Faculty of Health Sciences outlines what is observable in 2006: The re-organization of the higher education has to be accomplished in a short period of time, in alignment with the rules of joining the European Community and functioning under the circumstances of the market. This reorganization should change the whole structure, right to its very foundations, and from a conservative authoritarian education would lead to a module-based, problem-solving oriented education, where within the UNIVERSITAS systems, the permeability of levels of training and the development of the credit system are the first tasks to accomplish (Jubileumi Evkonyv, 1996, p. 29).

Faculty and administrators continue with this. Their openness is reflected in their invitation of the U.S. author as a Fulbright Fellow to teach three elective courses and to learn and partner with them. This continues the tradition of many other international guest faculty who have worked here.

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SUMMARY In summary, this chapter has used a case study of nursing education in postCommunist Hungary to articulate how one country in the EU is addressing the changing realities of the globe. Hungarian nurse faculty leaders, in wanting the best for their patients, their students, and the nursing profession, are changing nursing education curricula to meet these needs and to best work within the EU directives and with the Bolonga Declaration. In addition to the case study, some comparison was done with selected EU countries. Some comparison and contrast was done between the Hungarian and the U.S. nursing education systems – with attention drawn to the different variables that leaders must contend with – and how each country’s leaders are problem-solving. Change is the only constant. Hungarian nursing faculty have embraced change – with all its challenges and opportunities – to enhance patient care in this country and to model professionalism for their students and nurses. Nurses in Hungary have many challenges – low salary, low status, a shortage, etc. However, it is hardly surprising that Hungarians have the reputation of being great survivors. They have been obliged to learn the arts of survival throughout the turbulent history of that little landlocked European country which has experienced more than its fair share of invasion, revolution and repression (Orkeny, 1998, p. 7). Thus, whether it is politics, the health care system, or nursing education, Hungarian nurse leaders are both surviving and thriving.

ACKNOWLEDGMENTS We wish to thank the Fulbright Commission in the U.S. and Hungary for the one semester Fulbright Lecturing Fellowship received by the U.S. author, for the invitation for Lectureship from the University of Debrecen in Debrecen, Hungary, and its partner campus – the Faculty of Health Sciences in Nyiregyhaza, Hungary.

REFERENCES AACN. (2004). Working paper on the role of the clinical nurse leader. Washington, DC: American Association of Colleges of Nursing.

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Anderson, J., & Hussey, P. (2001). Comparing health system performance in OCED countries. Health Affairs, 20(3), 209–232. Directive 2005/36/EC of the European Parliament and of the Council (9-30-05). Official Journal of the European Union, L 255/22-141. Healthcare Update News Services. (August 13, 2004). Health grades medical errors study featured. Contact Paul Tunnecliff at [email protected] Jubileumi Evkonyv (1990–1995). Nyiregyhaza, Hungary: Health College Faculty, University of Debrecen. Jubileumi Evkonyv (1990–2000). Nyiregyhaza, Hungary: Health College Faculty, University of Debrecen. Jubileumi Evkonyv (1996). Nyiregyhaza, Hungary: Health College Faculty, University of Debrecen. McDermott, K. (1996). Modly to be first fulbright nurse in Hungary. Retrieved 5-1-06 from http://www.cwru.edu/pubs/cnews/12-12/hungnurs.htm Melnyk, B. M., & Fineout-Overholt, E. (2005). Evidence-based practice in nursing and healthcare. Philadelphia, PA: Lippincott, Williams, & Wilkins. Milstead, J. A., & Furlong, E. (2005). Handbook of nursing leadership: Creative skills for a culture of safety. Sudbury, MA: Jones and Barlett. Nursing in Hungary. (2004). Facts and figures. Budapest: National Institute for Strategic Health Research. Orkeny, I. (1998). One minute stories. Budapest: Corvina Books, Ltd. Stanhope, M., & Lancaster, J. (2004). Community and public health nursing. St. Louis: Mosby. Watson, R. (1995). Barriers to health care in the single market. British Medical Journal, 310(6990), 1288.

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BETWEEN A ROCK AND A HARD PLACE: ACCESS, QUALITY AND SATISFACTION WITH CARE AMONG WOMEN LIVING IN RURAL AND REMOTE COMMUNITIES IN CANADA Ivy L. Bourgeault, Rebecca Sutherns, Margaret Haworth-Brockman, Christine Dallaire and Barbara Neis ABSTRACT This chapter examines the relationship between health service restructuring and the health care experiences of women from rural and remote areas of Canada. Data were collected from 34 focus groups (237 women), 15 telephone interviews and 346 responses from an online survey. Access to services, care quality and satisfaction are salient themes in these data. Problems include: travel, shortage of providers, turnover in personnel, delays associated in accessing care, lack of knowledge of women’s health issues and patronizing attitudes of some health care providers. Health care service restructuring has led to deterioration in service availability Access, Quality and Satisfaction with Care: Concerns of Patients, Providers and Insurers Research in the Sociology of Health Care, Volume 24, 175–202 Copyright r 2007 by Elsevier Ltd. All rights of reproduction in any form reserved ISSN: 0275-4959/doi:10.1016/S0275-4959(06)24009-2

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and quality. Key areas for policy development need to address health care access and quality improvement issues, including increasing access to more (particularly female) providers who are sensitive to women’s health issues.

INTRODUCTION When health care in rural and remote communities is described it is often in terms of deficits: a deficit of services, of access, of personnel and of resources. Health care reforms that explicitly attempt to ameliorate these difficulties, but implicitly emphasize business economics, fiscal restraint and funding claw-backs, have by and large exacerbated already tenuous situations in many locations. As we grapple with the effects of restructuring and the challenges of providing equitable access to quality care to people in rural and remote communities, a focus on women’s health issues is necessary to complete the picture of health needs, service provision and utilization. This chapter attempts to deepen our understanding of the health care issues facing women in rural and remote communities by drawing upon national data obtained in Canada. We focus in particular on the impact of recent health care restructuring initiatives in that country on access, quality and satisfaction with care among rural and remote women. The research upon which this chapter is based was guided by the following principles:  The knowledge of women living in rural and remote areas is essential to the formulation of effective policies and programs that maintain and improve their well-being in their communities and do not perpetuate or exacerbate inequalities for women.  The engagement of women living in rural and remote areas is essential in the formulation of effective policies and programs that maintain and improve their well-being in their communities. Our key research questions included:  What has been the impact of restructuring on the health care services of women living in rural and remote communities?  How is this impact differentially felt by different groups of women?  What kinds of health services and policy would improve the quality of life of women living in rural and remote communities?

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HEALTH CARE RESTRUCTURING AND THE IMPACT ON WOMEN LIVING IN RURAL AND REMOTE COMMUNITIES It is important at the outset to clarify how the terms ‘rural’ and ‘remote’ are being used in this chapter. There is considerable debate in the literature regarding what constitutes rural and remote and numerous definitions and taxonomies are employed. In many cases, rural is defined residually in relation to urban (Cordes & Straub, 1992; Murdoch & Pratt, 1993) which has a tendency to downplay the diversity that characterizes rural life (Sutherns, 2001). Statistics Canada, for example, defines rural as any place with a population of less than 10,000 people, outside of commuting distance from an urban center. This threshold is an important guideline, but may mask as much as it reveals. Indeed, rurality is both a spatial and a social concept in that it has identifiable cultural dimensions that are lived out in geographic contexts. Rural and remote places tend to be small, dispersed, peripheral to a core center and low in population density. So although we began with the Statistics Canada guideline, in keeping with our research principles noted above, we felt that women who live in rural and remote areas should have an opportunity to define for themselves whether they considered the community they lived in to be rural/remote. Any discussion of the relationship between health care and restructuring is inherently gendered because of biological differences between men and women and because relationships to physical and social environments, access to employment, income, education and decision-making are gendered. Women in rural and remote communities represent a socially and economically vulnerable group because the history of economic development in these heavily resource-dependent areas has been largely premised on the notion of the male breadwinner, In reality, women’s paid and unpaid work has always been central to economic development in such regions, as well as to the support of rural households and communities. Gender differences prevail, however, in that women may not have equitable access to household incomes, may not be well represented in social and political decision-making, and face uneven distribution of household and community responsibilities. Through the continuing debates on health care reforms in Canada and elsewhere, the implications for women living in rural and remote communities have not typically been investigated. Gender and the health of women have not had a clear or decisive place in the planning and definition of rural and remote health policies. There has been scant research about sex and

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gender-specific health determining influences on access to appropriate health services, experience of quality of care, environmental exposures and socio-economic factors particular to rural and remote regions of Canada (Armstrong et al., 2002) and elsewhere. Some studies are available that examine the effects of restructuring on rural communities without a focus on women or health (cf. Flora, 1990; Leach & Winson, 1995, 1997; O’Toole, Nesbitt, & Macgarvey, 2002). Others focus on the ways in which restructuring affects women and/or health, with no specific mention of living in rural/remote communities (cf. Armstrong, Jansen, Connell, & Jones, 2000; Bezanson, 1998; Crichton, 1993; Eakin & Brooker, 1998; Hughes, 2001; Leckie, 1993; Lum, 1998; MacDonald, 1998; Masson, 1999/2000; McDaniel, 1997; Neysmith & Chen, 2002; Veltmeyer & Sacouman, 1998; Williams, Wagner, & Buettner, 2002). A growing body of literature examines rural women’s health care in Canada (see Bouchard, Gilbert, & Tremblay, 1999; Dion Stout, Kipling, & Stout, 2001; Gucciardi & Biernie-Lefcovithc, 2002; Hutten-Czapski, 2002; Jennissen, 1992; Leipert & Reutter, 1998; Rosenberg & Wilson, 2000) in the United States (Chalifoux, Neese, Buckwalter, Litwak, & Abraham, 1996; Dobie, Gober, & Rosenblatt, 1998; Dougherty et al., 1998; Hillemeier, Weisman, Baker, & Primavera, 2005; Johnson, 1999; Lane, Martin, Uhler, & Workman, 2003; Pistella, Bonati, & Mihalic, 2000; Richardson, 1987; Smith & Weinert, 2000), Australia (Alston et al., 2006; Coakes & Kelly, 1997; Coory, Fagan, Muller, & Dunn, 2002) and New Zealand (Davis, Girgis, Williams, & Beeney, 1998) but without a particular focus on the impact of restructuring. The specific context of health care restructuring in Canada refers largely to measures aimed at limiting the role of the state and controlling public spending, what Willson and Howard (2000) refer to as a ‘renegotiation of boundaries’ in health care. These changes have varied province to province in Canada (because under the federal system, health is a provincial responsibility), and have evolved over more than 15 years, but have been characterized in rural areas by the centralization of services (e.g. hospital, bed and clinic closures), the privatization of services (e.g. the increase in the charging of fees for services which previously did not entail a charge), and by shifting responsibility for services to the community and household level (e.g. deinstitutionalization of care). Provincial governments have been motivated by decreased proportional funding levels from the federal government, reduced federal requirements in how funds are spent on health, the so-called efficiency models and cost-saving measures, and a desire to decentralize control and bring in more community involvement in administration. Thus, some provinces restructuring policies have included

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regionalization – decentralized management and delivery of programs and services. The regionalization of health care has sometimes improved access to mental health and some other services in rural and remote areas but it has also often resulted in hospital and hospital bed closures, the elimination of specific services in many small communities and ensuing cuts in health care jobs for women. Many of these Canadian changes parallel the move toward managed care in the United States (Armstrong et al., 2003; Bourgeault et al., 2001; Bourgeault et al., 2004) and similar health care reforms in Australia (Alston et al., 2006). At the same time, provinces reduced their investment in new practitioners (primarily doctors and nurses) during the 1990s, by admitting fewer post-secondary students to medical education programs. There have been other changes in professional standards and personal expectations of professional practice which have led to shortages of physicians and nurses throughout the country, felt most acutely in rural and remote areas (Kralj, 1999; McKendry, 1999; Pope et al., 1998). Within the literature directly addressing the effects of restructuring on rural women’s health, most of the Canadian research has, not surprisingly, been generated at a provincial level. It explores the impact of health care reforms, most notably privatization and regionalization, on various groups of women. For instance, Jaffe and Blakely (1999) examine the impact of reforms on rural informal caregivers in Saskatchewan; Botting (2000) and Botting, Neis, Kealey, and Solberg (2000) describe how rural, poor, nonprofessional and elderly women have been disproportionately negatively affected by privatization in Newfoundland; Neis et al. (2001a), Neis, Drake, and Sheir (2001b) and Neis and Grzetic (2005) reveal how vulnerable women in resource-dependent communities are affected when policy and industrial change coincide with environmental degradation; Scott, Horne, and Thurston (2000) and Skillen (2001) explore the direct and indirect impacts of restructuring on women’s paid and unpaid work in Alberta, while Willson and Howard (2000) look at the effects of health care privatization on women in Manitoba.1 Cloutier-Fisher and Alun (2000) explore the effects of restructuring in long-term health care on the ability of the rural elderly, primarily women, to ‘age in place,’ finding that recent reforms have increased uncertainty and the vulnerability of rural elderly to institutionalization in Ontario. Marshall (2001) examines more broadly how restructuring intersects with relationships, personal history and migration patterns in fishing communities, and Botting (2005) explores women’s accounts of the relationship between outmigration, restructuring and the health of older women left behind in two forestry-dependent communities in Newfoundland and Labrador. Dolan et al. (2005) document the relationship between

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interactive social–ecological restructuring and health in rural areas on Canada’s east and west coasts. These studies point to the negative impacts of health care restructuring on women’s lives and to ways health care restructuring can interact with other changes in rural and remote areas to augment risk in gendered ways. Each highlights how health care restructuring affects women differently and potentially more severely than men. They sometimes highlight potential differences in reported experiences and outcomes across subgroups of women. Women’s vulnerability to health care restructuring relates to their roles as informal caregivers within families, their economic vulnerability and frequent marginalization within public decision-making (Armstrong et al., 2002). In rural contexts, women’s roles as health care users, as formal and informal health care providers, and as citizens intersect with rural stereotypes where informal caregiving is seen as an extension of women’s domestic role and as consistent with rural ‘neighborliness’ and intergenerational stability, potentially creating additional burdens on women. The gendered dimensions of restructuring have been largely invisible to researchers and policy-makers, as have many other dimensions of rural women’s lives. It is also clear from the literature that rural and remote women need health services that are appropriate for the environments within which they live, sensitive to diverse rural cultures and to women’s particular needs. These gender and place-related impacts must be taken into account whenever health care services and their restructuring are being planned or evaluated.

METHODS Data Collection The aim of this research was to gather women’s input on their experiences of living in rural and remote areas, how they feel it affects their health and their access to health services, and what they think are the priorities for action and change. To do this, we used three modes of data collection: 1. Focus groups: A total of 34 focus groups were conducted with 237 women across Canada by locally based facilitators following standardized guidelines for the recruitment and conduct of the group interviews. Of these focus groups, 4 were conducted in French in the province of Quebec and 3 were conducted in Inuktituk in the territory of Nunavut.

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2. Web-based survey: A web-based survey available in both French and English was available on the web from September 2003 to January 2004 to enable women to provide responses to our questions and identify their key concerns without having to leave their communities. The survey was linked to various local, regional and national women’s health web sites (e.g. Canadian Women’s Health Network). Although the questions in the web survey largely followed the basic organization of the focus group and telephone survey instrument, it had to be modified to better accommodate a web-based venue. Specifically, many of the open-ended questions were closed with a list of response choices. The choice of responses offered to the web survey participants were derived from the themes that emerged from similar questions in a previously conducted set of pilot focus groups (Sutherns, Haworth-Brockman, & McPhredran, 2004). A total of 346 women responded to the survey; 336 in English and 10 in French. 3. Telephone interviews: For those unable or uncomfortable in filling out a web-based survey, a toll-free telephone number was set up for women to leave their name and number to arrange a time for a telephone interview to be conducted. The toll-free number was installed in early September 2003 and advertised widely (i.e. radio and newspaper ads and electronic lists) along with the web-based survey. When they called, participants heard a bilingual message and were invited to leave their contact information in either French or English and the telephone survey was conducted in the official language of their choice. A total of 16 telephone interviews were conducted; 15 in English and 1 in French. In all three modes of data collection, participants were asked their views on the accessibility and quality of health care in their community. The issue of restructuring was investigated by probing how these things had changed in the past five to ten years. Participants were questioned about key areas/ issues that needed to be addressed to improve the health and health care of women in rural and remote communities. All three modes of data collection included a standardized self-administered demographic survey. All materials were produced in both official languages to ensure suitable participation for anglophone and francophone women (and in the case of the Inuktituk interviews, the information was translated on the spot by the facilitator). Both the second and third modes of data collection were included in this study to increase women’s access to participation and to broaden our sample and the range of experiences we could examine.

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Data Analysis Our three modes of data collection yielded both qualitative and quantitative data. The focus groups and telephone interviews were taped for later transcription. To ensure consistency, one person transcribed all the English language, French language and interviews translated from Inuktituk into English. Data from the transcripts and the qualitative responses to the openended questions from the web survey were inputted into QSR-NUDIST software for content analysis. Codes were applied to both the French and English transcripts by a bilingual, qualitatively trained research assistant to identify: (a) the common themes raised by women living in rural and remote areas and (b) the particular issues raised by women living in certain types of rural or remote areas. The coding scheme largely followed the questions set out in the interview guide but with further analysis reflecting broader conceptual categories and emerging themes. Sub-samples of interview and focus group transcripts were coded by two bilingual research assistants to assess the reliability of the coding. The quantitative data from the demographic surveys and from the closedended questions from the telephone interviews and web surveys were entered into SPSS for descriptive analysis including frequencies and cross tabulations by key demographic categories.2

RESULTS Demographic Profile of Study Participants Although we were successful in targeting both younger and older women in the focus groups, we were less successful in the web-based survey (see Fig. 1). This seems logical in the case of older women who are less likely to be Internet users, but is less clear for younger women. As for ethnic background, there was a greater range in the focus groups where we specifically targeted selected minority groups (visible minority women, immigrant women, Aboriginal women) than possible in the web surveys (see Fig. 2). Although many of these categories were too small for quantitative analyses, we were able to use the ‘Aboriginal’ variable to highlight the potential differences in these responses. In terms of educational background (Fig. 3), a sizeable proportion of women participating in our research have a fairly high level of education (44%). This was particularly notable for the web-based surveys (65.2%) and

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60 50 40 30 20 10 0

14-19

20-24

25-29

30-34

35-39

Focus Groups

Fig. 1.

40-44

45-54

Telephone Interview

55-64

65-74

75+

Web Survey

Age of Participants.

100 50 0 Aboriginal

British

French

Focus Groups

Fig. 2.

Other European Visible Minority

Telephone Interview

More than 1

Other

Web Surveys

Ethnic Background of Participants.

140 120 100 80 60 40 20 0

No H. School

Some H. S.

H.S. Certificate

Focus Groups

Fig. 3.

Some P. S.

Trades Dipl.

Telephone Interview

College Dipl.

Univer. Dipl

Web Surveys

Educational Background of Participants.

likely due to the greater access these women have to the Internet and their facility in using it. Women’s various experiences in rural and remote communities with health and health care as reported in the web surveys were analyzed by educational background to address its impact on women’s responses. For these subsequent analyses, education is divided into three

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50 40 30 20 10 0

0-499

500-999

1000-1999

2000-2999 3000-3999 4000-4999

Focus Groups

Fig. 4.

Telephone Interview

5000-7499 7500-9999

Web Surveys

Population of Community.

categories: (1) high school diploma or less, (2) some post-secondary and (3) university degree. In contrast to the web surveys, focus group participants have a much broader range of educational background with 32% having only some or no high school and 25% having a university degree. With respect to marital status, most women were married or living with a partner (65.6%); far fewer were previously married (separated, divorced, widowed) (10.3%) and never married (16.9%). More of our participants were in the labor force (65%) than not, and within these categories more were employed full time (65%) than part time (23%). The majority of women who were employed had been in their present position for less than five years. In addition to these background demographic questions, we also asked participants to tell us the size of their community; most (81%) lived in communities under 10,000 (paralleling the Statistics Canada definition) (see Fig. 4). The majority (61%) had lived in their community for over 10 years but 27% were relative newcomers (less than five years). Thus, the demographic profile of our participants, particularly those who participated in the web survey is skewed toward those who are more highly educated, those who are middle aged, those who work for pay and those with higher household income than is typical of women living in rural and remote communities in Canada. This is similar to findings from other national studies (cf. Alston et al., 2006). Thus, our findings are based on these somewhat more privileged segments of the rural/remote women’s community and hence may be revealing just the tip of the iceberg of the problems rural and remote women in general face.

Access to Health Care for Women in Rural and Remote Communities All of the participants in the study were asked whether they had access to a family doctor and, if not, where they received primary care services. The majority of participants (78%) have access to family physician services. As

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suspected, those who do not tend to rely on walk-in clinics, 42%, and hospital emergency room services, 20%. Those who did not have a family doctor in their community expressed some particularly difficult situations they faced in getting care. As a web survey participant said, The Native Health Centre has a difficult time finding [doctors] to staff the clinic. If we have no [doctor] there we are stuck with the hospital emergency or drop in clinics. [Web Survey Participant]

Those physicians who are available tend to have closed practices, making their services inaccessible to a growing proportion of the population. For example, this one woman from rural Manitoba recounted: I didn’t need a doctor for six, seven years. y and then all of a sudden I started feeling sick and I started having problems. You think I could get a doctor? I couldn’t believe the run around they gave me. y I just said ‘Piss on this. I’ll god damn go to Winnipeg where I could see somebody right now.’ [Manitoba Focus Group 2]

This, however, meant a drive of over five hours each way. Two of the women we interviewed by telephone described the situations they faced with the lack of physicians as ‘scary’ and ‘pathetic’: We had a doctor for two hours, one day a week, who came into the community. There was no backup health unit. There was nothing. Scary. [Telephone Interview 8] A lot of times our local hospital doesn’t even have a resident physician on-call which is pathetic. [Telephone Interview 12]

In addition to these questions about access to physicians and primary care, we also asked web survey and telephone interview participants about changes in access to a variety of health care providers and services (see Table 1). What they told us was that it is much or somewhat harder than in the past for women in rural and remote communities to get a family doctor (78.8%) and specialist (69.3%), emergency room services (59.4%), mental health services (57.4%), and home support services (54.4%). Women commented on the least amount of change was in their ability to access a dentist or dental hygienist and they noted slightly better access to alternative health care services. Indeed, some participants connected the lack of medical services with the rise in use of alternative care providers: I see a big increase in the number of people seeking alternate therapies because they can’t access anything else. So if in fact they can’t get a family doctor cause none of them are taking new patients, they don’t have an emergency room, they don’t have y the things we’ve mentioned, then they want something to happen to them to improve their health, so they seek alternate therapies. [Manitoba Focus Group 3]

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Table 1.

A family doctor A medical specialist A nurse or nurse practitioner A dentist or dental hygienist An alternative care providera A traditional healerb Ambulance services Emergency room services Rehabilitation servicesc Mental health services Home support servicesd

Change in Access to Various Health Care Providers and Services. Much Harder (%)

Somewhat Harder (%)

No Difference (%)

Somewhat Easier (%)

Much Easier (%)

Do Not Know/No Answer (%)

48.0 51.0

28.8 18.3

17.0 8.4

1.3 4.6

0.8 0.4

3.8 7.5

20.0

20.9

25.1

9.2

3.7

21.3

12.0

22.7

54.6

5.9

1.7

3.4

14.0

11.7

20.1

23.4

4.1

26.6

9.3

5.7

17.4

11.3

5.7

50.6

11.0

22.2

34.1

12.4

3.0

17.5

30.0

29.4

25.6

6.3

3.6

8.0

30.0

26.3

17.4

11.4

2.5

12.3

33.0

24.4

15.9

8.4

0.8

17.6

44.0

7.4

8.9

16.3

1.9

20.8

a

Such as a naturopath, homeopath, reflexologist, herbalist, etc. Such as a native healer. c Such as a chiropractor, occupational or physical therapist, dietician, speech therapist, respiratory therapist, massage therapist. d Such as nursing, therapy services, personal care, house cleaning, meal preparation, laundry. b

This is similar to what Brown, Young, and Byles (1999) found for rural women in Australia. Specifically, that while they make significantly fewer visits to general practitioners, they make more visits to alternative health care providers than women living in urban areas. Not surprisingly, those participants in our study who were new to their communities found it especially difficult to access all of the services queried about. Telephone and web survey participants were asked about their perceptions of access to health care services in their community. Not surprisingly, women in rural and remote areas were either very or somewhat dissatisfied

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with their ability to access health care services in general. Rated on a scale from 2 to +2 with 0 corresponding to ‘neither satisfied nor dissatisfied,’ we found that responses were fairly stable across age categories and income quintiles. Aboriginal women seemed to be less dissatisfied with access than non-Aboriginal women ( 0.8 versus 1.6) perhaps because a broader range of their health care costs (i.e. medications) and in some cases some additional services would be provided through federal funding as per Treaty agreements. Those women with less formal education were the least satisfied with access ( 2.1 versus 1.1 versus 0.5). Women who were not in the labor force were also less satisfied than those who were ( 2.0 versus 0.6). Such results perhaps underline the importance of cultural/social capital to access health care. Women who were relatively new to their community also rated their access to health care lower than those women who were long time residents ( 1.9 versus 0.5) which is likely related to the fact that overworked rural physicians no longer accept new patients. Those who lived in smaller communities (under 10,000) rated their access to health care lower than those women in communities over 10,000 ( 1.7 versus 0.7). To sum up briefly, women living in rural and remote communities view and experience access to health care services as poor and getting worse. Although most of the women had a family physician, many had experienced difficulties in getting them (becoming patients) or otherwise felt in a precarious situation where they faced imminent threats of losing access altogether. Women also noted decreased availability of medical specialists, nurses or nurse practitioners, emergency, mental health and home support services. In general, our participants were either very or somewhat dissatisfied with their ability to access health care services. Barriers to Women’s Access Care in Rural and Remote Communities All participants were asked to highlight some of the key features that hinder women’s ability to access health care. Their responses address a variety of social and structural issues, though these different types of factors overlapped considerably. We begin first with a discussion of the structural barriers, as this was by far the most salient issue for our participants. Structural Barriers Already discussed above was the issue of lack of medical and other services which in turn were related to significant waiting times and delays in

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receiving what they need: from diagnostic services to ambulances: I can tell you I was on a waiting list for three years for an MRI before I finally gave up and did a fundraiser to pay for it myself. Three years. That’s not acceptable for someone who is in constant pain. [B.C. Focus Group 2] Respondent 1: Ambulances take a long time. y I was waiting 45 minutes to an hour y Interviewer: Do people tend to just take people in rather than waiting for the ambulance? Respondent 2: When my father-in-law had his heart attack, my husband drove him. Respondent 1: Yeah, instead of calling for the ambulance. Cause if you waited 45 minutes, by that time you could die. [Saskatchewan Focus Group 1]

Compounding these problems were the greater distances to care, the hassle of arranging transportation and additional travel costs, many of which are not covered under either publicly funded health care or private health care plans and if they are, reimbursement can be a difficult process: If you want tests for something you have to go at least two hours in any direction to get treatment, and then in the case if you don’t drive yourself, you have to find someone to drive you there and be a chauffeur because it’s in an urban centre. And then it depends on also some rural women do not drive in an urban centre cause it’s not familiar to them so they avoid it. Um, so that’s a hindrance would be the distance from treatment of medical and tests. [Telephone Interview 12] Travel costs are not accepted as a need in medical costs nor in most extended health programs. [Web Survey Participant]

Here we see the greatest impact on one’s income in terms of being able to access care: It takes a whole day to drive to specialist services and employers are not happy about giving a whole day off. [Web Survey Participant] It’s a great deal harder because of the distance and because of the costs associated with transportation. y So it takes your time to travel, it costs to travel, you have to have a reliable vehicle, you take a risk whenever you travel because it’s a risk to travel on a road the distances they’re being traveled and there [are] animals on the road at night. So all this become[s] risky. [Telephone Interview 9] There are not enough specialists here. One has to travel to Vancouver for most specialist appointments and the cost is prohibitive. I know I put off having things looked at because I don’t want to or can’t make the trip down to Vancouver. [Web Survey Participant]

In the case of remote locations, the arrangements and cost are even more dear because of the necessity of flying: Cost and distance is definitely like an issue, right? Because the distance is thousands of miles and we have to fly wherever we go. [Nunavut Group 1]

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Often these arrangements seem insurmountable in light of the outcome being a short visit with a health care provider and the negative health consequences of traveling in the first place: It can be an all day trip for a 15 min doctor’s appointment. [Web Survey Participant] Travel distances of over 1.5 hours on winding and gravel roads make it difficult to get [physiotherapy and occupational therapy] and the drive home can be very trying and in some cases make things worse. [Web Survey Participant]

By way of contrast, some of our participants did note that there were some features of rural/remote living that positively influenced women’s ability to access care. Some women noted that they waited less time for care or services in their rural communities than they felt they would in their nearest city: It’s actually really good with the hospital that’s the closest hospital to here, like there’s like no waiting when you go there. Like for the emergency room or whatever. [Telephone Interview 1]

Having services close to home was very important for women: Respondent 1: We have excellent, very excellent services compared [to some rural communities] Respondent 2: It is really nice to have. You know, like anything in the middle of the night, if your child is ill or needs some care or whatever, I just don’t hesitate to go in. Respondent 1: Very good. y [and] we can’t lose that. And so they fight really hard for it. But every once in a while, you hear, [you] might lose your hospital. [Saskatchewan Focus Group 2]

But even this quote reveals the constant threat of facility closure or service withdrawal that women in rural and remote communities face. Indeed, many of the concerns regarding access to care were linked directly to recent restructuring efforts and funding cutbacks: Financial cutbacks at all government levels have reduced access to services. [Web Survey Participant] Some services have left [the] community altogether. I believe it all has to do with the cutbacks in the government on our health care system. [Web Survey Participant]

In other cases, restructuring has already resulted in hospital closures the moving of services to larger urban centers or cutting them back significantly: We used to have, not a psychiatrist, but a psychologist or counselor person that came twice a week, and they cut him down to like four hours, like half a day a week or something. It’s ridiculous. [Telephone Interview 5]

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Home care services? Ha, ha! Officially yes, home care services are offered. Unofficially, you can’t be too sick. You cannot need too many services at home. y You have to be autonomous, or almost. [Quebec Focus Group 2] (translated from French)

This situation has, in the view of many women, created emergencies: Where I grew up, the hospital I was born in turned into an old folks home and now it’s just a vacant building, and like that’s really hard for the community around there because like my sister had to drive an hour and a half – and like we have our babies quick – So she was like a little scared having to drive that, you know, an hour and a half drive, ‘okay, are we going to make it?’ So they had to stay in the hospital for the week that the baby was due cause there was no way. In smaller communities, that’s a big issue. It’s scary. In the last two years two or three babies have been born in a vehicle. [Saskatchewan Focus Group 2]

The following woman commented specifically on the consequences of the recent restructuring of ambulance services: Respondent: [With the] changing of the boundaries for ambulance service. Like even where we are, we’re five miles from the boundary and if I were to call an ambulance they would drive me to (town 2) which is away from the hospital. With a heart condition, we can’t do that. Interviewer: They would drive you away? Respondent: Well yes, because the ambulances on that boundary line are obligated to take the patients to (town 2), even though we’re in the same county. Interviewer: And why is that? Respondent: Well they drew an arbitrary line in the county of service. And everything east of Highway 20 goes to (town 1). Everything west of Highway 20 goes to (town 2). (Town 2) does not have the services that I require. I have a pacer and y the ambulances from (town 2) don’t even have a defibrillator. What good is that? [Telephone Interview 8]

Related to the issue of funding cuts, we also found a sizeable proportion of the participants (51%) paying out-of-pocket for services, representing a substantial change. Younger participants were more likely to pay out-ofpocket for services (40% under 30 versus 14% for those over 55); Aboriginal women were less likely (11% versus 31%). Somewhat surprisingly, there were few differences across education and income categories and rural status. In addition to the travel-related expenses previously mentioned, participants provided other examples of the kinds of services that they paid for

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directly: Well with them wanting to charge a fee now it becomes again [a] really a big deterrent to call the ambulance y And if you’re on a fixed income, how do you pay? My mother was here and y she simply didn’t call the ambulance and she ended up in septic shock. So what would have been much easier to treat earlier on was the occasion of her hospitalization and she’s now gone on into a nursing home. y She could have gone in and gotten an antibiotic and remained at home. [Telephone Interview 9] Provincial cuts and policy changes [have] increased user fees e.g. [I had] to pay $240 to get an ambulance to next community for c-section because the doctor here was away. [Web Survey Participant]

Social Barriers In addition to the structural barriers to accessing care, some key social barriers were also identified. One of the primary issues hindering some women’s access to care of a social nature is the concern about confidentiality and stigma. Indeed, a sizeable proportion of women reported that it sometimes or frequently prevented them from seeking care (see Fig. 5). These concerns were stable across age, ethnicity, income and marital status categories, and length of time in community. They were somewhat more pronounced for those with higher education. Those women 30 to 40 years of age were more likely to say that their concerns prevented them from accessing care (51% versus around 30% for other age categories). Some Aboriginal women were more likely not to access care (47% versus 30% for non-Aboriginal women) but this response was still in the minority. There were no particular trends across education or income categories in terms of prevention from accessing care because of concerns regarding confidentiality or with respect to number of years in the community. Those who lived in communities less than 10,000 were slightly more likely to not access care (32% versus 41%). 120 100 80 60 40 20 0

Always

Sometimes

Worry

Fig. 5.

Never

Rarely

Don't Know, No Answ

Prevent

Women’s Worries about Confidentiality and their Impact on Preventing Access.

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These concerns were discussed by many of the women in this study. For example, women from one of the Manitoba groups noted: Respondent: I mean the town is very small and people hang out in the council office which is right beside the nursing station, and you are seen going in and out of there by somebody. And people talk. Interviewer: Has it ever prevented any of you from accessing care? Like knowing that everyone is going to know, or thinking that everyone is going to know. Respondent: Oh definitely. [Manitoba Focus Group 2]

Several women noted that concerns about confidentiality were particularly salient for those dealing with mental health issues and for younger women trying to get reproductive health care: Say you go see a mental health y counselor, you’re likely to see somebody else. And it’s not the people that are running the establishment that are going to leak out information. It’s just y that you meet someone and they’ll say to someone else ‘I seen her there. I wonder if she went to see the mental health or if she’s going for counseling,’ you know, sometimes it’s like that. In a small community, it happens to be like that. Whereas the people in the big city, nobody knows you. [Manitoba Focus Group 1] I think maybe for some younger people it might. They’re scared to death to go for a test in case somebody is going know too well to divulge sensitive information to find them there or maybe somebody is pregnant and they don’t want anybody to know. [Nunavut Group 1] [In a] small town, young women going into the doctors’ clinic can be seen and parents alerted. [Web Survey Participant]

By way of contrast, one woman from Saskatchewan said: I’ve been surprised at how little I’ve heard of that. I work as a school counselor so a lot of the kids that I worked with were referred to mental health services. And I’ve been really amazed at how little concern there’s been about stigma or people knowing. [Saskatchewan Focus Group 2]

Some suggested that limited educational levels among some women made it very difficult for them to navigate a challenging and bureaucratic health care system, again denoting the importance of social/cultural capital to receive the health services they need: Health services are so limited for women. And there’s a little bit of [an] educational curve here. A lot of the women don’t have even high school education. You know they leave school when they’re 17, 18, go work in the factory to pack fish, and they don’t have education. And so it leaves them very vulnerable trying to circumvent the system that is so, um, so bureaucratic that unless you have some savvy to work your way through it, it’s very difficult. [Telephone Interview 10]

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In sum, access to appropriate, quality care was limited in several ways, but by far the most significant limitation was the substantial and, in some cases, increasing distances that women had to drive, and the cost they incurred both in terms of time and money. Other features of rural and remote living that hinder access to health care services include the lack of providers in the first instance, and related delays in accessing care. Restructuring of health care services in these communities has not only not remedied these problems, it actually seems to have exacerbated them. Funding cuts have often translated into hospital closures or the fear of hospital closures, loss of particular services and physician loss, and turnover within these communities. A sizeable proportion of women reported paying more out-of-pocket for health care services and particularly for travel to those services. In addition to these structural barriers, there are also social barriers that limit access to quality and timely care. A particular challenge relates to perceived constraints on confidentiality and anonymity in rural and remote communities which can act as barriers to women seeking care. Study participants expressed a great deal of frustration with the overall deterioration in their access to health care. Quality of Health Care for Women in Rural and Remote Communities In addition to the issue of access, there was also generally discontent with the quality of the services that were available. We found that a sizeable majority were either somewhat or very dissatisfied with the quality of health care services available to them (61%). There were no notable differences in these ratings by age, education, income, marital status, number of years in community and size of community. Aboriginal women, however, rated their level of satisfaction lower than non-Aboriginal women ( 1.2 versus 0.5). The following comment speaks to the general concern with quality of health care for women in rural and remote communities evident in the data: The care that women are receiving is not adequate. The care they’re receiving around childbearing is not adequate. The support they’re getting with raising their young children is not adequate. The support they’re getting with raising their teenagers is not adequate. The support they’re getting dealing with family conflict is not adequate. And those are all parts of health care for women. [Telephone Interview 9]

By and large, women had several concerns about the quality of health care services available to women and girls in their rural and remote communities. In many instances these concerns focused on medical services. Issues they identified relate to lack of choice of physician and a related shortage in female

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physicians; concerns were also expressed about physician burnout, lack of consistency and continuity of care, and a lack of sensitivity to women’s health issues amongst some physicians. Lack of choice is a particularly challenging issue when women are unhappy with the care they are receiving: I don’t really have a choice with what’s available for doctors. I’m not really comfortable with him. [Telephone Interview 1]

The overall limited supply of local physicians is also associated with burnout and overly busy physicians: Doctors are really pushed over the limit. They can’t keep up. So they pump you through. [B.C. Focus Group 2] Isolated, overworked, cynical family practitioners trying to ration scarce resources. In a small community this has become a problem of a toxic culture among the doctors; they feed one another’s cynicism and protect one another’s errors. [Web Survey Participants]

Overwork and burnout can contribute to physician turnover which, in turn, tends to negatively affect continuity of care for patients: The high turnover rate of physicians adversely effects consistency of care. It is easier for some patients to fall through the cracks. [Web Survey Participant] The only problem around here [is] the doctors don’t stay for too long. And then like your record has to be changed around and y like it’s the little problems. You get a new doctor you find out what’s the one you want to be comfortable with, y [then] they’ve moved. [Alberta Focus Group] Few health practitioners stay in the north for long - so even when they are here for a few months or a year they will leave and take the trust developed with patients and community. [Web Survey Participant] People having to do a lot more advocating for themselves just cause there is a high turnover. So if you weren’t knowledgeable going in there, certain things you would miss out on just cause you didn’t know and there’s nobody to advocate for you. [Nunavut Group 6]

Many women perceive their physician as either lacking or appearing to lack knowledge of women’s health issues: The doctors themselves don’t even know about women’s issues because three doctors told me in the same week: ‘Women are supposed to be in pain. It’s part of having a reproductive system.’ Quote, unquote. Three doctors in one week. [B.C. Focus Group 2] I don’t wish to be reverse chauvinistic. However, I was given the impression that I was a post-menopausal hypochondriac. And I think a lot of women get that. And it’s not necessary that a woman look after me or be my doctor. However, it is important that

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specialists especially realize that women’s physiology is different than men’s. [Telephone Interview 8]

Many women recounted experiences where their physician was insensitive or exhibited somewhat stereotypical attitudes toward women: I find that there are prejudices throughout the health care system against the poor women, First Nations and those with less education. It isn’t always blatant but it is definitely there. [Web Survey Participant] Stereotypic responses to female health concerns: ‘it must be anxiety, depression, lose some weight, get more exercise, try these pills.’ [Web Survey Participant]

Some felt particularly patronized as rural women revealing not just a gender bias but a rurality bias as well: There’s bias as soon as we hit St. John’s, you know where they all of a sudden, we’re all uneducated, fishermen people. You know, that kind of stuff y you have to deal with. [Telephone Interview 3]

Some women did express their desire to have their health care provided by a woman. Indeed, most participants (67%) indicated that this was either somewhat or very important to them. We found little difference in preference for a female physician by age, education, income, or marital status. Aboriginal women were slightly more likely to state that having a female physician was important but this was a persistent issue for all women living in rural and remote communities: You know, that old analogy is that you never take your car to a mechanic who has never driven, you know. It doesn’t make any sense. [Telephone Interview 10] A male doctor, no matter how kind and caring and thoughtful he is, they don’t get it. They don’t understand because they’ve never had to go through the changes that you go through. So they will never know how to fix it or how to make you feel good about it. That’s all I can say. [Nova Scotia Group 1] Sometimes I feel uncomfortable discussing certain things with the doctor. Also in such a small community I’m bound to run into him somewhere. That’s also somewhat uncomfortable. [Web Survey Participant]

Interestingly, this last comment echoes previous reports and concerns regarding lack of anonymity and confidentiality. Participants in the telephone interview and the web survey were asked their views about how the quality of health care services available to them had changed over the past five to ten years. Overall, almost 40% felt that the quality of services had become worse over this period. This observation was consistent across age, education and ethnic categories. Perhaps not

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surprisingly, those with the lowest incomes (less than 20,000) rated the quality as better than those with higher incomes (+0.2 versus 0.3). Some participants did discuss positive aspects of their rural and remote health care services. For example, some pointed out that in these communities one could have the opportunity to get to know their health care provider: With regards to the family physician, it is really a family physician. I have seen him year after year and I am at ease. If there is something, I can call him. ‘What’s going on?’ ‘I have this, this, this’ and he can tell me something. It’s maybe that kind of trust relationship or relationship when we are really close. We all know each other and we see each other on the street. And ‘how are you?’ [Quebec Focus Group 2] (translated from French)

Some had women’s health-focused centers in their community and highlighted their importance: [our] Women’s Centre has done a lot of women’s health conferences and workshops re: menopause prevention programs. [Web Survey Participant]

In some areas, there are more women physicians than in the past. However, their practices tend to fill up rapidly. In sum, in terms of quality the women in our study expressed concern about the lack of female health care providers and insensitivity among the predominantly male medical staff to their female health concerns. Living in rural and remote communities limited these women’s recourse to alternative physicians and to female health care providers.

DISCUSSION This research attends to the significant gaps that exist in the literature with respect to gender, rurality and the consequences of restructuring of health care services for women. Further, this research explicitly addresses issues of diversity within the category ‘rural,’ which is frequently not done in other research. We acknowledge that ‘rural’ is not a homogeneous category and in doing so made a deliberate effort to include the voices of subpopulations of rural women not normally represented. Where feasible, we have also tracked differences in the concerns, issues and desires of these subgroups. We do not argue that these results are necessarily generalizable to all rural women – due in large part to the non-random nature of our sample – but we do feel strongly that the issues that emerged from our analysis are some of the most critical health care issues facing women in rural and remote communities in Canada. In this discussion, we briefly link our findings to themes in the

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literature reviewed at the outset, and reflect on how these findings can be used to formulate more informed policy in order to improve upon situations where restructuring has contributed to the deterioration of services and vulnerability of women in rural and remote areas in Canada and elsewhere. In general, what we found when we asked women living in rural and remote communities about health care was that they had both poorer access and the care they could access was of poorer quality at the time of the study than had been the case in the previous five to ten years. Although we found that most of the women who participated in our study had a family physician, many described difficulties in becoming a patient of that physician and often conveyed concerns that they might lose access in the near future. The rural health care literature focuses heavily on doctor shortages (Hutten-Czapski, 2002; Kralj, 1999). These shortages came through in our findings but we also heard about limits on access to other important health care providers and services such as specialists, mental health, home care and emergency services. Alston et al. (2006) similarly found rural women in Australia noted the lack of care for the elderly, counselling and mental health care services. These findings highlight the fact that women’s views of health care extend beyond primary medical care to include a broad range of relevant services. The structural barriers that we highlighted as constraining already-limited access have been highlighted by others in the literature (Davis et al., 1998; Pistella et al., 2000; Quine et al., 2003). For example, Alston et al. (2006) note how more than two-thirds of the women they surveyed indicated having to travel to regional centers for services but over 80% noted there were no public transportation options available for doing so. Brown et al. (1999) employ the term ‘the tyranny of distance’ in this regard as well to describe how health status declines with increasing distances from urban centers. Few, however, have examined this explicitly within the context of health care restructuring, though some do argue that the few services that are available in rural and remote areas are inadequately funded (Alston et al., 2006). The gender dimension of lack of access to transportation is also rarely mentioned in the literature. Fewer still explicitly discuss the social barriers, such as the lack of confidentiality, within rural and remote communities. Quine et al. (2003), however, did note that a lack of confidentiality was more major of a concern for rural youths accessing mental health services in comparison to their urban counterparts. Women’s views on the quality of health care services are often absent from the literature. When addressed, the focus is usually on the adequacy of available services (cf. Alston et al., 2006). The women in our study commented on the lack of choice of physicians, limited access to female

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physicians, and that those who were available were very busy and often on the verge of burnout. Similarly, Bryson and Warner-Smith (1998) found the demand for female medical practitioners by women in rural areas appeared to be increasing, particularly among younger women. They attributed this to the ‘culture of practice’ exhibited by female doctors more than to some sort of essential appeal in the gender of the practitioner. It is important to note that rural women are not necessarily unique in their desire for a health care provider of their same gender, as this is a notable feature of women’s choices across locations (cf. Broom, 1998). Because we did not have an urban comparison group in this study, it is difficult to assess whether and how this preference differs by setting. Concern was also expressed about the lack of knowledge of women’s health issues, and the insensitive, stereotypical and sometimes patronizing attitudes they experienced among some of their health care providers. (Sutherns et al., 2004). Continuity of care was also important as many of the women expressed frustration with the turnover in personnel and their inability to establish an ongoing relationship with their care providers (cf. Chalifoux et al., 1996). Although we cannot comment on the extent to which restructuring has had a particularly negative effect on women, since we did not have a comparison group of men living in rural and remote communities, we can say that access to services is deteriorating, paying out-of-pocket for services is increasing, and there is a high level of dissatisfaction with both access to and quality of health care services. Moreover, women highlighted how their concerns about the quality of care and services are entwined with both gender (being women and their responsibilities and roles) and rural/remote living. Overall, the theme of vulnerability came through in this data as it has in the literature on restructuring, highlighting the uniquely rural and remote aspects of this vulnerability. Health care restructuring was acknowledged to have had profound negative impacts in many areas that could be ameliorated with measures to bring services closer to home, through more recognition and coverage of the additional costs now incurred in reaching services, and through improving the fit between the timing and availability of services and the needs and opportunities of rural and remote people.

NOTES 1. Each of these studies has been commissioned by one of the Canadian Centres of Excellence for Women’s Health.

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2. Because our web survey data, like our focus group and telephone interview data, are essentially from a convenience sample of internet users, this renders statistical inference about the wider population of rural women difficult. Thus the analysis of the survey data is necessarily exploratory and descriptive only.

ACKNOWLEDGMENTS We would like to acknowledge funding provided by Status of Women Canada, the Women’s Health Bureau of Health Canada, and we would also like to acknowledge the backup support of the National Research Steering Committee on Rural and Remote Women’s Health, the Canadian Women’s Health Network and the Prairie Women’s Health Centre of Excellence.

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Murdoch, J., & Pratt, A. C. (1993). Rural studies: Modernism, postmodernism and the ‘postrural’. Journal of Rural Studies, 9(4), 411–427. Neis, B., Drake, A., & Sheir, J. (2001b). We’ve talked: Restructuring and women’s health in rural newfoundland. Coasts Under Stress. Final Report to Health Canada. Neis, B., & Grzetic, B. (2005). Environmental, industrial and political restructuring and the health of women processing workers in Newfoundland’s fishery dependent communities. In: M. Hessing, R. Raglon & C. Sandilands (Eds), This elusive land: Women and the Canadian environment (pp. 82–101). Vancouver: UBC Press. Neis, B., Grzetic, B., Pidgeon, M., King, K., Durdle, J., & Hickey, C. (2001a). From fishplant to nickel smelter: Health determinants and the health of women fish and shellfish processors in an environment of restructuring. Report submitted to the National Network on Environments and Women’s Health, York University, Toronto, April. Neysmith, S., & Chen, X. (2002). Understanding how globalization and restructuring affect women’s lives: Implications for comparative policy analysis. International Journal of Social Welfare, 11(3), 243–253. O’Toole, K., Nesbitt, P., & Macgarvey, A. (2002). Amalgamation of health services in southwest Victoria: Reinvention or survival? Australian Journal of Rural Health, 10(1), 51–56. Pistella, C. L., Bonati, F. A., & Mihalic, S. L. (2000). Rural women’s perceptions of community prenatal care systems: An empowerment strategy. Journal of Health Society Policy, 11(4), 75–87. Pope, A. S. A., et al. (1998). Retention of rural physicians: Tipping the decision-making scales. Canadian Journal of Rural Medicine, 3(4), 209–216. Quine, S., Bernard, D., Booth, M., Kang, M., Usherwood, T., Alperstein, G., & Bennett, D. (2003). Health and access issues among Australian adolescents: A rural–urban comparison. Rural Remote Health, 3(3), 245. Epub. 2003 November 25. Richardson, H. (1987). The health plight of rural women. Women and Health, 12(3–4), 41–54. Rosenberg, M. W., & Wilson, K. (2000). Gender, poverty and location: How much difference do they make in the geography of health inequalities. Social Science and Medicine, 51(2), 275–287. Scott, C. M., Horne, T., & Thurston, W. E. (2000). The differential impact of health care privatization on women in Alberta. Winnipeg, MN: Prairie Women’s Health Centre of Excellence. Skillen, L. (2001). Reflections of rural Alberta women: Work, health and restructuring. Alberta: University of Alberta. Smith, L., & Weinert, C. (2000). Telecommunication support for rural women with diabetes. Diabetes Educator, 26(4), 645–655. Sutherns, R. (2001). Women’s experiences of maternity care in rural Ontario: Do doctors matter? Doctoral dissertation, University of Guelph, Ontario, National Library of Canada. Sutherns, R., Haworth-Brockman, M., & McPhredran, M. (2004). Rural women’s health and health care in Canada. Centres of Excellence in Women’s Health. Veltmeyer, H., & Sacouman, J. (1998). Political economy of part-time work. Studies in Political Economy, 56(Summer), 115–143. Williams, A., Wagner, S., & Buettner (2002). Labour process change: Women’s paid home care work in Saskatoon. Prairie Women’s Health Centre of Excellence. Willson, K., & Howard, J. (2000). Missing links: The effects of health care privatization on women in Manitoba and Saskatchewan. Prairie Women’s Health Centre of Excellence.

SECTION V: SATISFACTION, ACCESS, AND QUALITY ISSUES IN PUBLIC SYSTEMS OF CARE

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PUBLIC HEALTH CARE FOR LOW-INCOME AND MINORITY WOMEN WITH CHILDREN IN AN AGE OF WELFARE REFORM Vicky M. MacLean, Patricia Parker and Melissa Sandefur ABSTRACT The study assesses public health programs to shed light on the experiences of low-income and minority women with children seeking health services. Thirteen focus groups were conducted with 111 pregnant women or women with children. Women consumers of public health services experience difficulties accessing health services due to a lack of insurance, information and language barriers about programs and eligibility, a shortage of Medicaid providers and specialist services, long waits, bureaucratic barriers, and dismissive treatment. Accessibility and information barriers were more prominent in rural regions whereas bureaucratic barriers were more pronounced in urban areas. Lower satisfaction with services was reported among ethnic minority women compared to whites. This research gives voice to low-income and minority women who are dependent on various public-funded maternal and child health services, and Access, Quality and Satisfaction with Care: Concerns of Patients, Providers and Insurers Research in the Sociology of Health Care, Volume 24, 205–233 Copyright r 2007 by Elsevier Ltd. All rights of reproduction in any form reserved ISSN: 0275-4959/doi:10.1016/S0275-4959(06)24010-9

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sometimes on limited public insurance, to meet their health care needs and those of their children. Our work is a case study assessing satisfaction with the various services and programs as well as identifying gaps in unmet health needs. Findings are from focus groups comprised of women and mothers with children who as clients utilize public programs and public health insurance. Focus groups were held in three regions of the state of Tennessee, including rural and metropolitan geographic areas. Data were analyzed by rural–urban location and by type of services: (1) women’s health including prenatal, birthing, and postnatal care, (2) child and adolescent services including Women, Infants, and Children’s Nutritional Supplements Program (WIC)1 nutritional supplements, infant genetic screening, immunizations, primary care, and children’s special services (CSS) for illnesses or disabilities, and (3) health insurance for the low-income including TennCare2 and emergency Medicaid.3 The specific aim of this case study was to find useridentified gaps in health services or in quality of care. The state of Tennessee provides an important case study for addressing contemporary public health care service trends in the US. Since 1994, Tennessee has offered one of the most generous health care programs for lowincome and disabled populations through its public health insurance known as TennCare, a managed care program that expanded and incorporated traditional Medicaid. The present case study in many ways mirrors problems common to those of all US states grappling with issues of health care for low-income families. One difference, however, is that Tennessee moved forward with a progressive state-wide system of health care only to be overcome by financial and political exigencies and retrenchment to safety net medical care a decade later.4 In this work we provide a look at a betterthan-average system of managed health care through the eyes of some of its consumers only a few months before the system was substantially downsized. Although the system was not without its problems, the critical importance of health insurance and access to public health services is evident in the experiences and testimonies of these women. The first-person voices of women and mothers and their stories are fundamental to understanding the needs and potential gaps in health services for the poor.

METHODOLOGY Focus Groups Thirteen focus groups with 4 to13 participants were held throughout three regions of the state in five metropolitan areas and eight non-metropolitan

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areas beginning in mid-February and ending in late March 2005. Participants were recruited by local social and health services liaisons and were selected based on the criterion that an adult family member or child had received services from one of several public maternal and child health programs in the past six months. Participants were provided a $25 gift card, lunch, and financial assistance for transportation or babysitting services, when needed. Translators for Spanish-speaking clients were also provided. Data collected included 90-minute tape-recorded focus group discussions with pregnant women, women with newborn children, and women with young and adolescent children. Focus groups have advantages over individual interviews in that the setting and commonalities among group members often facilitate a feeling of comfort, enabling participants to speak freely about their experiences. Interaction among participants often generates a more comprehensive discussion of the issues. The method is particularly useful when (1) there is a gap between professionals and their target audiences, (2) researchers are seeking to learn about the degree of consensus on a topic, and (3) researchers need a friendly method that is respectful and not condescending to their target audience (Bowling, 1998; Jarrett, 1993; Morgan & Krueger, 1993). A short survey was administered to participants as a means of collecting demographic data, information on service-use patterns, and general availability and satisfaction with services. With the assistance of facilitators, focus group participants were first asked to develop a list of public health services ever used. Participants were then asked to describe a recent positive service experience, a recent negative experience, and to identify specific gaps when services needed for themselves or their family members were not available. At the end of the discussion, participants were asked to prioritize the most important services for their families and for their communities in view of the reality that state budget cuts were imminent. Analysis Focus group discussions were transcribed and cleaned of personal identifiers. Written transcriptions were then content-analyzed for major themes (Bowling, 1998; Glaser & Anslem, 1967). Major themes subsequently became coding categories, some of which had been developed prior to the analysis and others that were developed as the research progressed. Examples of coding categories include: barriers to services, availability of services, and quality of services. Sections of the narrative data were coded by theme or category for each of three types of program services (women’s health, children’s and adolescent health, and health insurance) and were

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then analyzed for rural–urban comparisons within program services, by race/ethnicity, and for overall themes across programs.

Participant Characteristics Focus group participants included 111 women, between the ages of 18 and 64 years. Approximately 75 percent of the focus group participants were women under the age of 35, with another 18 percent between the ages of 35 and 44 years, and the remaining 7 percent 45 years of age or older. Race/ ethnicity of participants included 45 percent white, 41 percent black, and 14 percent of Hispanic or other ethnicities. About 57 percent resided in rural regions of the state and 43 percent in urban centers. Over half of the women reported living in households with at least one other adult. The women reported an average of two children under the age of 18 years living in the household, with the number of children ranging from none to nine. Most of the women lived at, below, or just above federally defined poverty levels (FPL). Approximately 55 percent reported annual family incomes below $15,000, 44 percent below $10,000, and 30 percent below $5,000. Only 5 percent (six respondents) reported annual family incomes above $40,000. The large majority of women participants, or about 72 percent, had graduated from high school, received the general education equivalent (GED), and/or had some college education. About 25 percent had not graduated from high school or received the GED. A smaller percentage of the focus group participants, 13.5 percent, were college graduates.

RESULTS Satisfaction with Services Summaries of participants’ responses to survey items related to levels of satisfaction with services are reported in Tables 1–3. Shown in Table 1, participants reported their greatest difficulties in accessing health services were related to lack of insurance or the ability to pay for health services (33%), followed by problems involving education or knowledge about services and how to access them (25%). Between 10 and 15 percent of the women indicated that they experienced problems with transportation or the location of health services, the time services were offered, language barriers, or accessing translation services. Within race/ethnic groups, black participants reported

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Problems Accessing Services (n ¼ 108).

Table 1.

Total

Insurance or ability to pay Education/knowledge services Transportation and location Times offered Language barriers

Black

White

Hispanic

N

%

N

%

N

%

N

%

37 28 17 14 12

33.3 25.2 15.3 12.6 10.8

15 13 7 4 2

33.3 28.9 15.6 8.9 4.4

14 9 6 4 1

28.0 18.0 12.0 8.0 2.0

6 5 3 5 9

50.0 41.7 25.0 41.7 75.0

Note: Totals will not add to 100% as the ‘‘n’’ in this case does not indicate individuals, but responses. Only those reporting problems accessing services are represented and multiple responses were given.

Availability of Services (n ¼ 101).

Table 2. Total

Very Poor Poor Average Good Very good

Black

White

Hispanic

N

%

N

%

N

%

N

%

1 4 35 25 36

1.0 4.0 34.7 24.8 35.6

1 1 21 10 10

2.3 2.3 48.8 23.3 23.3

0 1 11 11 24

0.0 2.1 23.4 23.4 51.1

0 2 3 4 2

0.0 18.2 27.3 36.4 18.2

Missing ¼ 10

Table 3.

Overall Quality of Services (n ¼ 106). Total

Low quality Average quality High quality Very high quality

Black

White

Hispanic

N

%

N

%

N

%

N

%

3 41 39 23

2.8 38.7 36.8 21.7

1 19 13 10

2.3 44.2 30.2 23.3

1 13 22 12

2.1 27.1 45.8 25.0

1 7 2 1

9.1 63.6 18.2 9.1

Missing ¼ 5

that their greatest difficulties were related to insurance and the ability to pay (33.3%) followed by education or knowledge about services and how to get them (29%). While the top two problem categories were similar for white women, the percentages for black women were higher than reported by

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whites, but lower than reported by Hispanics. Among Hispanics the greatest problems in receiving services were related to language barriers (75%), followed by insurance or the ability to pay for health services (50%). Shown in Table 2, few participants reported the availability of maternal and child health services as ‘‘poor’’ or ‘‘very poor.’’ About one-third (35%) rated availability as ‘‘average’’ and well over half (60%) rated availability of services as ‘‘good’’ or ‘‘very good.’’ However, more than twice as many black and Hispanic women as white women rated availability of services as ‘‘poor’’ or ‘‘average,’’ indicating that ethnic minorities perceive the availability of services as more limited than white participants. Table 3 indicates that most participants rated the overall quality of services as average or better with about 39 percent rating public health services as ‘‘average’’ in quality and almost 59 percent rating services as ‘‘high quality’’ or ‘‘very high quality.’’ Together these responses suggest that while participants experienced some difficulties in accessing services, once services were received, clients were generally satisfied with the quality of services. However minority women were less satisfied than white women with the quality of services; they were more likely to rate the quality of services as ‘‘average’’ and less likely than white women to rate services as ‘‘good’’ or ‘‘very good.’’

Women’s Health The areas of women’s health services addressed in focus group discussions included prenatal care and childbirth education, birthing experiences, and postnatal concerns related to breastfeeding, parenting, and family planning services. Shown in Table 4 common prenatal care services utilized by participants included WIC referral or enrollment (82%), TennCare (state Medicaid) enrollment (61%), routine physician exams (56%), first trimester prenatal care (53%), and nutrition education (52%). The most frequently used postnatal care services included medical check-ups (62%), education for child immunizations (42%), and breastfeeding counseling (35%). Frequently used family planning services included pregnancy testing (67%), medical exams (70%), laboratory tests (61%) and contraceptive supplies (44%). Also shown in Table 4 differences in rural–urban patterns of women’s health services utilization in the areas of prenatal, postnatal, and family planning were present among the women in this study. Most notable were differences in all areas of educational services which were more prevalent in urban centers. Women residing in urban areas reported higher levels of education regarding nutrition, childbirth, premature birth prevention,

Public Health Care for Low-Income and Minority Women

Table 4.

211

Women’s Health Services Utilized.

Services Used

Total

Urban

Rural

N

%

N

%

N

%

Prenatal care Pregnancy testing Pregnancy and childbirth education TennCare enrollment WIC referral or enrollment Obstetric medical management Nutrition education Folic education Routine exams with doctor Routine exams with midwife Weight gain education Premature birth prevention education First trimester prenatal care Illness care during pregnancy Breastfeeding education Cesarean birth Second hand smoke education Smoking cessation program Education/treatment for substance Parenting education

64 42 68 91 24 58 41 62 10 48 38 59 26 46 32 50 15 23 40

57.7 37.8 61.3 82.0 21.6 52.3 36.9 55.9 9.0 43.2 34.2 53.2 23.4 41.4 28.8 45.0 13.5 20.7 36.0

32 21 28 40 7 28 20 25 6 20 20 26 8 24 11 20 5 8 17

66.7 43.8 58.3 83.3 14.6 58.3 41.7 52.1 12.5 41.7 41.7 54.2 16.7 50.0 22.9 41.7 10.4 16.7 35.4

32 21 40 51 17 30 21 37 4 28 18 33 18 22 21 30 10 15 23

50.8 33.3 63.5 81.0 27.0 47.6 33.3 58.7 06.3 44.4 28.6 52.4 28.6 34.9 33.3 47.6 15.9 23.8 36.5

Postnatal care Medical check-ups for mother Medical check-ups for newborn Breastfeeding counseling Care for low birth weight infant SIDS education Care for HIV-infected infants Education for child immunizations Information on healthy spacing Parenting education

69 74 39 19 32 3 47 12 32

62.2 66.7 35.1 17.1 28.8 2.7 42.3 10.8 28.8

30 33 21 9 16 1 24 6 15

62.5 68.8 43.8 18.8 33.3 2.1 50.0 12.5 31.3

39 41 18 10 16 2 23 6 17

61.9 65.1 28.6 15.9 25.4 3.2 36.5 9.5 27.0

Family planning Pregnancy testing Education and counseling Medical exams Laboratory tests Contraceptive supplies Testing/treatment for STDs

67 42 70 58 49 8

60.4 37.8 63.1 52.3 44.1 7.2

34 25 31 28 24 4

70.8 52.1 64.6 58.3 50.0 8.3

33 17 39 30 25 4

52.4 27.0 61.9 47.6 39.7 6.3

Women’s health

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breastfeeding, SIDS (sudden infant death syndrome), childhood immunization, and family planning. Rural women, on the other hand, reported higher rates of education and treatment for the impact of smoking and drug use on fetal development. Women in rural areas were slightly more likely than those in urban regions to be enrolled in TennCare and reported higher rates of obstetric medical management, illness care during pregnancy, and Cesarean births. Similar utilization patterns were reported for WIC referral, first trimester prenatal care, and routine medical exams and check-ups. Prenatal Care and Childbirth Education Prenatal services are provided at local and metropolitan health department clinics, funded by county and state dollars, and include pregnancy testing, education, presumptive eligibility for TennCare enrollment for pregnant women, and referrals for WIC and for obstetric care. Hispanic women comprising one focus group reported receiving prenatal care from the local county health department rather than from private physicians through TennCare. The women expressed their satisfaction with the services, indicating that they were treated well. One participant described her care, ‘‘The visits to the doctor and the OB are excellent.’’ From other focus groups, as well, women indicated a general level of satisfaction with health department prenatal care services, reporting that the workers were thorough, called to remind them of appointments, treated them respectfully, and provided useful educational information. Regarding gaps in services several women expressed a need for parenting and birthing education, particularly requesting hands-on learning as opposed to pamphlets and videos. A young pregnant woman, for example, stated that she had never changed a diaper before. Some women indicated that many public health facilities had demonstration tools but did not provide cost-free classes. Some women noted the need for non-biased information about alternative birthing options as well as the need for classes to prepare women for the possibility of unexpected Cesarean sections and for postpartum depression. One mother discussed the difficulty in gaining support for alternative methods of birthing, such as midwifery or Duala-assisted home births. Describing her discussion with a medical professional, she noted, I was trying to make a case for why it would be cheaper, and it was cheaper y she said, ‘‘oh honey, you don’t want to do that, just go ahead and have your epidural.’’ [I told her] ‘‘I am not asking your opinion; I want to know my options.’’

Participants expressed their concerns that hospital or clinic-sponsored classes were biased, deliberately guarded, or otherwise restricted in the

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information they provided to pregnant women. Participants largely agreed that there was a need for non-biased birthing classes and information independent of physician groups, hospitals, or clinics.

Pregnancy Care and Birthing Experiences Women from both urban and rural regions reported issues with the quality of emergency room care received during their pregnancies. One AfricanAmerican respondent in an urban region reported a life-threatening delay in receiving needed surgery: When I was having my daughter, I had a doctor that didn’t want me to have a C-section after they had already told me that I could not have her natural. Finally, another doctor came in (and intervened). I had already lost so much blood before the C-section that he almost killed me and her [baby] both.

Other participants discussed negative experiences during emergency room visits such as delayed care, refusals of treatment, and poor quality care. One respondent was reportedly kept for over four hours but received no diagnostic treatment such as an ultrasound or a pelvic exam. She was sent away despite a prior history of miscarriage and told to rest until she saw her own doctor. Another participant reported a negative emergency room experience when she sought treatment for a tubal pregnancy. Her care was delayed and she was passed around among facilities and doctors. Describing her negative experience she reported, going to the emergency room when the doctors are not on the staff to help you y I was pregnant in my tube. I went to the emergency room and they told me, ‘‘sorry, I had lost the baby’’ y moving me back and forth, my tube ruptured y I had to have one of my tubes removed [as there was not] a doctor on hand that could have treated me.

In one rural county, uninsured Hispanic participants described long delays or service refusals by a local hospital emergency room and from doctors unwilling to treat them. These women received prenatal care at the local health department. One participant tearfully described her frightening and painful experience when she was in labor. At hospital admitting, she was given a sleeping pill and instructed to return in five hours when another doctor, presumably one that accepted emergency Medicaid, would be on shift: Well, I went home because they told me that if I stayed I was only going to be laying there and nobody was going to take care of me y To tell you the truth, because sometimes they see us as Hispanic, I think it is discrimination.

Several of the Hispanic participants expressed anxiety over who would deliver their babies. The women were concerned because the doctor who saw

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them at the local prenatal clinic did not practice at the local hospital and would not be the physician who delivered their babies. As one stated, When you are already in labor and they ask you, ‘‘who is your doctor?’’ and they tell you that he is from another department and cannot come. You do not have a doctor. So they search for a doctor that will take care of you. For me that is a problem. What if it’s at nighttime?

One group was especially vocal about the overuse of Cesarean sections. Some of the mothers said that they had planned natural childbirths with midwives, but to their disappointment, once in labor, they were rushed to surgery. The women attributed the overuse of Cesarean sections to the convenience in scheduling and to the money. One participant declared, ‘‘I think that these doctors just like to do C-sections.’’ Another agreed, ‘‘It’s definitely more money.’’ One mother addressed her lack of preparedness for the surgery and her subsequent difficulties: I didn’t have any help. Basically the doctor would look at my wound [incision] and be like, ‘‘okay, you’re ready.’’ But y I felt y I didn’t have a real birth y In my mind I was going to have a natural childbirth y and in the blink of an eye, I had 10 contractions and I was in the operating room y I was crying on the table.

Mothers with newborns also described difficulties with maternity services at their local hospitals. One woman stated that she was not able to see her baby and that she received dismissive treatment from staff. She noted, however, that she was allowed to stay in the hospital long enough to recover while another woman recalled that she was only in the hospital for one day and that she did not feel she had enough time to recover and adjust to her new role as a mother. ‘‘I think they should have kept me for at least two or three days. You just can’t comprehend all that in one night y you are exhausted, and you want time to actually comprehend, ‘Hey, I’m a mom of a baby.’ You know?’’ Postnatal Follow-up and Support Themes related to postnatal follow-up concerns and experiences included the importance of support, education, and information about breastfeeding, parenting, and child development; treatment for postpartum depression; and the usefulness and need for improved family planning services. Participants identified the potential usefulness of parental support groups and the significance of support from health professionals such as those provided by the postnatal home visitor programs. Interestingly, many of the participants reflected on their experiences with the focus group itself as indicative of what

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215

parents can gain from one another when sharing similar problems and information about health programs and health benefits. Lack of specific health or program information was seen by participants as problematic, adding to the stress encountered when trying to care for a newborn and coping with financial problems. Participants agreed that there was a need for more breastfeeding education and coaching. One woman explained that information alone was not enough: I would say y support really, because information, ya know, we can go to a breastfeeding class and that can be helpful, but there has to be support. I mean, a stranger showed me how to nurse a doll but that does not teach me how to breastfeed. [It requires] a caring mother y who knows what she is doing, and can say, ‘‘you are going to be okay, and it is alright if you want to scream and cry for a couple of minutes.’’

Although most women reported positive encouragement from staff to breastfeed, occasionally women felt that health personnel were unskilled or inappropriately intrusive about breastfeeding. In one case, for example, a mother reported that a staff member was judgmental about her breastfeeding two children: I nursed my first one until he was almost two. I nursed my second one in the first year until the third baby was six weeks old. [But the staff member] she looked at me and said, ‘‘Do you mean that you are still nursing this other child!’’ She was very abrupt and she thought that I should just quit right then. I said, ‘‘Well, everything that I’ve learned and read about it said that it’s ‘supply and demand.’’’ My body is fully capable of doing it. I eat well.

A number of respondents reported breastfeeding difficulties and the need for better education, equipment, coaching, and support. Hospitals reportedly did not take the time to provide basic information. One woman indicated that while she had breastfed for eight weeks, she stopped because it was too painful. She indicated that she would have liked to continue with a breast pump, but she could not afford one. Across the focus groups in both rural and urban regions, the postnatal home visitor programs received praise. Such programs provide nurses and/ or social workers to educate and support new mothers for up to two years. Some programs extend services, assisting children up to six years of age in gaining access to medical, social, and educational services. Particularly in rural areas, mothers were grateful that the workers were willing to travel to their homes. One participant praised the cultural sensitivity of the home visitor program which attempted to match the Arabic ethnicity of the home visitor with her Arabic client. Others noted that workers were informative,

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helpful, and caring; they sometimes brought gifts (e.g., baby clothes, shampoo, lotion, and information packets), educational videos, and provided much-needed emotional support. One mother described the emotional support she received from her caseworker: She’s become like a counselor in a way for me. I had a very hard situation; you know dealing with getting a divorce. She started coming to my house every week because she could tell I needed somebody to talk to. I’m not from here, so I don’t have any friends. She has become a friend and like a counselor.

Other participants defined their caseworkers as friendly, personable, nonjudgmental people who took the time to play with their children. Workers provided educational materials for expectant or new mothers, suggested accessing toy and book club services, helped the mothers keep children’s shots up to date, checked the development of the children, and took corrective measures such as providing educational/therapeutic toys and referral services if the child was falling behind. A final area of postnatal follow-up and support included the need for sexuality education, information concerning prevention or management of sexually transmitted diseases, contraception education, and access to contraceptive supplies. The participants were particularly concerned with sexuality education and protection for young women. One participant said, ‘‘I feel if you had more education, you would know what’s going to happen to your body. Why you take a shot, why you may bleed for a long time.’’ Another participant elaborated on issues related to parental involvement in family planning: If there are children y who come into the health department and they are horrified of their parents finding out they are on birth control y respect them and let them be on birth control without notifying their parents y if a parent brings in their child, I think they should see them. That’s like taking your three year old to take a polio shot. You don’t give that child a choice whether they want a polio shot or not. It’s a vaccination to prevent something horrible from happening.

One mother referred to family planning as an investment, saying, ‘‘We’ll invest this money in teaching the people what not to do. Or otherwise [we will have to] spend another one thousand dollars on extra TennCare.’’ Other women expressed the need for family planning services and the availability of contraceptives. For example, I live y on the lower end y where most of the inner city children live y I think that if the families had services like counseling and family planning y I think that they would be better [equipped], you know, to take care of the children – so the children don’t end up out on the street y We need somewhere where young people can go and know that

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they can get contraceptives. I mean that’s a big thing in the community y I feel like that’s first because we have a lot of young pregnancies. A lot of Aids and diseases.

In summary, areas of common need in women’s health care services identified by focus group participants included improving the quality of services received during childbirth, availability of childbirth education courses, and greater availability of family planning services. Secondary concerns included a lack of preparedness for difficulties experienced with birthing and breastfeeding. When asked to prioritize in importance women’s health services for their families and communities, the women ranked highest accessible prenatal care (including WIC nutritional supplements) followed by the postnatal home visitor programs. Rural–urban comparisons additionally suggest a gap in educational services in most areas of women’s health in rural regions. Children’s and Adolescent’s Health Shown in Table 5, the most widely used public child and adolescent health services were WIC (82%) nutritional supplements, TennCare health insurance (64%), and routine immunizations of children (57%). Over half (53%) of the participants used newborn screening services for infant hearing, genetic, or medical problems. Other widely used public health services included routine medical exams (41%), flu shots (41%), dental services (41%), and eye exams (32%). Nearly a quarter (23%) of the focus group participants used CSS, a means-tested program for children with disabilities. As is evidenced in Table 5, there were few rural–urban differences in children and adolescent health service utilization. A few exceptions included greater use patterns in rural regions in the areas of CSS, home visitor programs, and dental and eye examinations. Women, Infants, and Children’s Nutritional Supplements Program Participants identified long waiting times as their most negative experience with the WIC program. The women reported sitting in waiting rooms with their children as long as five hours to meet with caseworkers. This problem was more pronounced in urban centers than in rural areas with women in one city forewarned to prepare to wait at least two hours before they would be seen. Participants attributed these long wait times to the closing down of satellite offices. One woman described the WIC facility remaining as ‘‘crammed full of employees and crammed full of customers and it’s y chaotic.’’

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Table 5.

Children and Adolescent Health Services Utilized.

Services Used

Total

Urban

Rural

N

%

N

%

N

%

Genetic and newborn testing Newborn screening for medical problems Other genetic screening services Diagnostic testing Counseling for genetically at-risk

59 15 17 10

53.2 13.5 15.3 9.0

24 6 8 5

50.0 12.5 16.7 10.4

35 9 9 5

59.3 14.3 14.3 7.9

Child and adolescent health TennCare enrollment WIC referral or enrollment Children’s special services Healthy start home Visitors program Routine medical exams Parents encouraging parents program Lead poisoning testing, Tx, or education Home lead Inspection Routine immunizations Flu shots Dental exams, cleanings, services Eye exams, services Nutrition, obesity prevention Childhood diabetes education Life transition counseling Abuse counseling Substance use prevention program Injury prevention and safety education

71 91 25 21 45 16 32 9 64 45 45 36 22 10 6 8 11 15

64.0 82.0 22.5 18.9 40.5 14.4 28.8 8.1 57.7 40.5 40.5 32.4 19.8 9.0 5.4 7.2 9.9 13.5

28 40 5 8 18 7 14 4 28 19 15 13 11 4 4 3 4 7

58.3 83.3 10.4 16.7 37.5 14.6 29.2 8.3 58.3 39.6 31.3 27.1 22.9 8.3 8.3 6.3 8.3 14.6

43 51 20 13 27 9 18 5 36 26 30 23 11 6 2 5 7 8

68.3 81.0 31.7 20.6 42.9 14.3 28.6 7.9 56.3 41.3 47.6 36.5 17.5 9.5 3.2 7.9 11.1 12.7

Adolescent sexuality education Abstinence education Family planning and contraception information Annual gynecological exam STD HIV/AIDS Contraceptive supplies Parenting education Pregnancy prevention program

10 23 32 15 8 23 26 19

9.0 20.7 28.8 13.5 7.2 20.7 23.4 17.1

8 10 14 6 3 8 10 9

16.7 20.8 29.2 12.5 6.3 16.7 20.8 18.8

2 13 18 9 5 15 16 10

1.8 20.6 28.6 14.3 7.9 23.8 25.4 15.9

Children’s and adolescent health

Most participants in metropolitan areas held similar views, describing the WIC environment as disorganized, crowded, confusing, and difficult to deal with. Although many participants viewed long waits negatively because of the time required to access services, others considered long waits as inconsiderate

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treatment. One respondent identified the problem as a failure in the system and not of the staff stating, ‘‘I knew they weren’t trying to be rude to people, it’s just the system was not working.’’ Another participant explained that although caseworkers may not purposefully delay scheduled appointments, they feel no pressure to keep them: ‘‘I think the attitude [is] that since you are here asking for help, you can wait. There’s that power.’’ Although the majority of respondents experienced long wait times, some had experienced WIC services as quick and efficient. A number of mothers found WIC employees to be informative, helpful, and willing to answer questions. Spanish-speaking participants appreciated the patience shown with language barriers and found caseworkers to be helpful in assisting them with paperwork. Immigrant mothers, especially, appreciated the information provided by caseworkers stating, ‘‘There are things they teach us that as first time mothers we don’t know. We don’t have anyone else to run to like our own mothers; we are alone and it’s great support.’’ Another participant reported that the WIC nurse made her feel comfortable. One mother was thankful for the nutritional guidance available through WIC explaining, ‘‘I need to be [instructed] to give her this, that, and the other. I was doing rice cereal and just juice when I needed to introduce her to new foods. I just didn’t know.’’ Unlike this mother, however, some mothers felt that WIC employees were too focused on rigid nutrition ideals, rules about when to feed babies certain foods, or breastfeeding practices. Women expressing these concerns invariably felt they were unfairly judged as bad mothers. One mother stated, ‘‘You know you feed your child y But then somebody [says] that you are not doing what you are supposed to be doing. It makes you feel like you don’t know how to do anything. Like you don’t know how to raise your child.’’ Most agreed that WIC standards serve as useful guidelines, while some felt that the treatment of standards as rigid rules fails to take into account individual differences in development. As one mother explained, ‘‘They got onto me about mine [baby] being underweight y But she eats anything, everything. She eats every food group.’’ Other concerns expressed by participants included a shortage of available information regarding eligibility rules, paperwork requirements, and when mothers are required to bring their children along with them to appointments for check-ups. Failure to bring proper documentation or children when required resulted in delayed receipt of WIC services or being dropped from services altogether until another appointment could be scheduled. Although generally grateful for the benefits provided them through WIC, some mothers expressed a need for expanded benefits including baby food, alternate milk or formula products

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(e.g., for lactose intolerant children), and fruits and vegetables. In addition, some participants expressed a concern for extension of WIC benefits to mothers. One participant explained that continued care of mothers was ‘‘preventative medicine’’ for their children as mothers must stay healthy in order to properly care for children. Participants suggested other beneficial services such as expanding the number of days and hours the WIC office is open and handling some business by phone in order to minimize office visits. Immunizations, Newborn Screening, Dental and Eye Exams Immunizations for children were noted in several groups as important services for families and communities. A Hispanic mother reported her gratification with her child’s eligibility for routine immunizations despite his immigrant status. Several mothers living in rural areas indicated that they were required to travel some distance in order to access newborn testing and screening services for their children or to find facilities for treating particular conditions. Although dental and eye exams and services for children were reportedly used by about a third of the mothers, many women lacked information about such programs. Others indicated that although TennCare purportedly covered such services that it was very difficult to find providers who accept the insurance. Children’s Special Services Mothers of special-needs children as well as other focus group participants agreed that CSS is an important and necessary public program. The medical bills, prescriptions, and equipment to care for a special-needs child are extremely costly. For instance, one child required a special bed costing $10,000 to protect him from severe seizures. The mother explained that had it not been for the CSS aid, she would have been unable to purchase the bed for her son. Most mothers using these services reported that they learned about CSS through referrals from caseworkers, physicians, or nurses. Clients reported that CSS involved them in the decision-making for their children: I called them and asked them for help. They do an assessment and ask you what you think your child needs or what would benefit the family most. They have you list three things and they [begin at the top of the list]. And if they have any money left over, they will go to the second one.

Despite the positive assessment of CSS, however, the reality of the stress, time, and money involved in caring for special-needs children presented

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problems for many mothers. Several mothers reported negative experiences due to the number of appointments they were required to keep. Acquiring transportation to and from appointments often necessitated that some mothers schedule multiple appointments in one day. However, actually making all of the appointments was often impossible. Mothers attributed the problem to a lack of coordinated schedules and transportation services. Some participants experienced the drivers for CSS as rude and inflexible. One participant explained that she had arguments with the drivers every time she used their services for her son. Participants suggested the need to hire more competent drivers, to coordinate appointment times with drivers’ schedules, and to extend transportation services. Several participants raised issues related to necessary procedures and diagnoses for treatment. One 12-year-old boy in need of spinal surgery was ineligible for TennCare because of his immigrant status; although he was having difficulties urinating, his condition was not considered a medical emergency. Another mother explained that one doctor’s delayed diagnosis (when she reported that her son was walking on his toes) eventually led to the worsening of her son’s condition. She explained, I went to a different doctor who had to do surgery, break both of his hips and had braces and casts from his hips to his feet for almost a year. Now he is wearing braces and will have to for the rest of his life. But if they had caught [and treated] it when he was younger, things would have been different.

The need for earlier intervention for children with medical conditions, especially for those living in rural communities, was reported by a number of parents. Parents felt that quality of care, a shortage of pediatricians, and difficulties in receiving referrals to specialists were particularly problematic for children covered by Medicaid/TennCare. Focus group participants in one rural area also raised issues associated with co-payments and prescription coverage in the CSS program. One mother reported that the receptionist of a provider told her that they would not bill CSS because CSS consistently failed to reimburse their office. As she perceived the situation, she would have to pay until she could find, ‘‘the time and gumption to fight for it.’’ While she is qualified for CSS coverage, she states that she ‘‘can’t rely on it.’’ The mother explained, I went in today and they said they have been billing CSS since September and have not received any reimbursement. So if I want the medicine today I have to pay the co-pay. And it’s frustrating because you think you have the service but then you are embarrassed when you are there and everybody is talking about the fact that it’s not covered and you’re not getting the medicine unless you pay up. I know if I pay today I will not get that money back.

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Teen Health and Sexuality Education The topic of teen sexuality typically arose during focus group interviews in the context of reducing teen pregnancies, and some participants stressed a need for education regarding sexually transmitted diseases and their prevention. Suggestions for meeting these needs included educational classes for teens as well as for parents. One group raised questions concerning when they should begin talking to their children about sex and sexuality. In addition, they expressed a desire for educational guidance about how to approach such topics in age- and gender-appropriate ways. One mother was particularly concerned about how to approach this topic with male children stating that ‘‘for females you take them to the doctor, you give them shots and pap smears y but what do we do for boys y what would I tell my son?’’ Many mothers expressed the belief that educating children about sex and contraceptives would prevent pregnancies and serve to reduce state spending on welfare. Overwhelmingly, when teen sexuality was discussed, participants expressed a need for greater educational services. Several common gaps and concerns for children and adolescent health services emerged across the focus groups. Improving the quality of WIC services such as decreasing wait times in urban centers was a clear concern. The women expressed the need to improve the quality of nutritional education and to extend benefits to food groups such as vegetables and fruits. Other concerns included improving access to services for infant screening and special care facilities especially in rural areas. Participants reported that few doctors would accept TennCare for dental and eye services and alternative public health facilities for dental and eye care were not known to most participants. Although CSS services were highly praised, parents experienced frustrations related to delayed diagnoses and treatment, quality of transportation for medical appointments, and delayed co-payments for medications. Again these barriers to care were more prominent in rural regions of the state. Finally, parents expressed a need for greater gender- and age-appropriate sexuality education for adolescents and for their parents. In prioritizing services for children and adolescents parents agreed that CSS services, WIC, immunizations, infant screening, and dental eye care were all fundamental to the public health of children in the US. Secondary, but nonetheless important services, should also include sexuality education and family planning for teens. Health Insurance, Access, and Affordable Health Care Survey data summarized in Tables 4 and 5 indicate that 64 percent of the focus group participants had children enrolled in TennCare and 61 percent

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of participants themselves were enrolled in TennCare. Although a few of the participants indicated that they had military health insurance or private/ individual coverage, most of the participants not enrolled in TennCare were without health insurance. The primary reason given for denial of TennCare was family income above the minimum allowed; for the Hispanic participants the primary reason was immigrant status. Across focus groups, when participants were asked to prioritize the importance of health care services for their families and communities, TennCare or affordable health insurance was ranked highest. Participants provided numerous examples of TennCare providing life-sustaining treatments and equipment in addition to treatment for common illnesses and preventive care.

Access to Physicians and Specialists The women described long waits to get appointments with primary care physicians under TennCare. For instance, one mother with a child experiencing vomiting, diarrhea, and fever described her frustration, ‘‘I should be able to call and get an appointment within a reasonable amount of time, but my primary care physician is sending me to the emergency room. Isn’t this defeating the purpose of primary care?’’ Several mothers, especially those living in rural areas, similarly complained that it was difficult to find a primary care physician. In the words of one participant ‘‘because nobody takes TennCare and you call around and nobody takes it.’’ The mother of a diabetic child with a heart condition complained, ‘‘I finally found a doctor, and then he’s not in the office half the time.’’ One participant suggested a potential solution to the problem, ‘‘I think that there should be more afterhour clinics so that everyone doesn’t have to go to the emergency room y because you can’t get in to a doctor.’’ Another participant stated that ‘‘the majority of people in the hospital [ER] waiting room are on TennCare.’’ Although common complaints included difficulty accessing primary care physicians through TennCare for common, but acute, childhood illnesses, other participants indicated that finding specialists, particularly in rural areas, was also highly problematic. One mother of a premature baby felt that the rural town in which she lived was not well equipped to take care of premature infants. She had to travel to a metropolitan hospital where overnight lodging was expensive. In the same rural community there was no genetic testing/screening available and it was necessary for the family to travel to the state of Ohio to find special facilities for their special-needs child. In another rural community a mother indicated that she had to wait six months for her child to see a neurologist, and that she waited a year to

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visit a specialist for her back surgery. Similarly, a mother with lupus indicated that she was not able to get a referral for a specialist. Instead she is treated by a primary care physician that she feels is ineffective in treating her condition. An extreme situation of blocked access to physicians who treat Medicaid patients was described in the focus group with Hispanic women. In their small town, typically very few obstetricians will deliver babies for the women covered under emergency Medicaid. It was therefore not uncommon for a woman in labor to be sent home from the emergency room and instructed to return several hours later, presumably when an appropriate physician would be available. The Hispanic women in this community were receiving important prenatal services, but were left to take what they could get when they actually went into labor at the local hospital. Although emergency Medicaid will cover at least a portion of the costs of delivery and physician fees, few obstetricians are willing to provide their services. Hispanic women also described the dilemma they faced when their children born in the US are eligible for TennCare but older immigrant children in their families are not. One mother stated that her eight-year-old daughter was typically not ill, but that she had to explain to her that health benefits were for citizens. Another parent described a son who suffered from a severe curvature of the spine. Unfortunately he was not eligible for TennCare and the family could not afford to pay $40,000 for the operation he needed to correct his condition.

TennCare Denials, Delayed Coverage, and the Inability to Pay A number of women described situations in which the information required to determine eligibility for TennCare was not gathered by staff or caseworkers. One mother explained her denial for mental health services: ‘‘I was [eligible] but when I got all of the denial letters in the mail, I said ‘oh, wait a minute. She never asked me about hospital spend-down medical bills.’’’ Another mother described her denial: ‘‘We were unemployed and our denial letter said that we made too much. How, when we were unemployed?’’ A young student mother attending college indicated that she was turned down for TennCare because she and her husband were both students. The mother noted, ‘‘we don’t make any money and we cannot afford our own health insurance y [when I called about the rejection letter] they said that ‘it is because you choose to go to school and not to work y’ [But] we didn’t file under the right category, under 21, baby under 18 months.’’ Others

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complained that the time between enrolling and finding out if they had qualified for TennCare was excessive, for some taking six to nine weeks instead of the five to ten days promised. When inquiries were made they were told ‘‘we are still reviewing the case.’’ In another example, a Hispanic participant who received prenatal care was still being billed for services one year later: When I was going to have my baby I applied for TennCare and was told that it would be taken care of in ten days. But I kept on getting medical bills and medical bills. I continue to get medical bills even though I’ve talked back to him [caseworker] and he assures me that he will resolve it. It has been one year and we are still getting those bills.

A pregnant woman reported that she is in her fourth month of pregnancy, but has not yet seen a doctor because she does not qualify for TennCare and cannot afford to pay for health care. Similarly, a young mother explained that she had to wait for 312 months before receiving any prenatal care because she had to find work and make the ‘‘right amount of money’’ in order to qualify for TennCare. Another mother described the difficulty she experienced qualifying for TennCare for her asthmatic son: TennCare is a big problem. I fought for three months to get my son on TennCare. He has a lot of medical problems. They finally put him on it because he ran up about a thousand dollars worth of bills within the first three months of his life. [But] a month ago my son was dropped. His medicine is $600 a month for his asthma.

One uninsured participant described being dropped from TennCare when she became pregnant. ‘‘They found out that I was eligible for insurance through [my husband’s] work. It was $765 a month for a family of five. They dropped us like hot potatoes. I went through my whole pregnancy with no insurance. We have $16,000 worth of medical bills.’’ Lack of insurance coverage and the inability to pay for outstanding medical bills were particularly problematic for Hispanic women. One participant explained that she incurred a large medical bill because she was overdue and had made several visits to the hospital. ‘‘[Emergency] Medicaid only covered the delivery costs. That problem has followed me up until now y if I don’t pay the bill, they are going to send a lawyer. Honestly, I have no way to pay for it.’’ Another Hispanic mother shared the story of her son being in the hospital for bronchitis for 15 days, and the difficulty she had getting the bill paid. Her son, a citizen by birth, was subsequently taken off TennCare without notice. Ultimately, however, his bill was paid because the collection agency advocated for TennCare for the son. Many of the Hispanic women indicated that they went without needed care for themselves when sick or relied on home remedies because they lacked health insurance.

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At times they found ways of purchasing medications or receiving them from families and friends. Many of the participants described difficulties in TennCare enrollment, labeling its management by the Department of Human Services (DHS) as ‘‘inefficient.’’ One participant noted, ‘‘they need to take TennCare away from DHS; the Health Department used to be responsible for TennCare y it would be a lot better and more people would receive it and have their enrollment filled out correctly if the Health Department was in charge of it again.’’ Parents indicated that there was often a lack of continuity in care when, upon short notice, children had to be recertified for coverage. Gaps in Insurance Coverage: Mental Health, Dental and Eye Care One medical gap identified, particularly in a rural eastern portion of the state, was the difficulty in getting TennCare to approve and to pay for mental health services and psychotropic pharmaceuticals. Several participants complained that when mental health services were accessed TennCare quickly terminated such services. One participant explained that while she was still able to receive prescription medication for depression, she could no longer receive counseling. A participant suffering from depression explained, I am stuck in the house all day with three kids, trying to go to the doctor and go here and go there. You are ready to pull your hair out and you are tired. At bedtime all you can do is think ‘‘I’m hurting’’ and cry yourself to sleep.

Other gaps in services identified by adult recipients of TennCare included dental and eye care services. Most participants acknowledged their willingness to make partial payments for such services but noted that the full costs of dental and eye care were above their abilities to pay. Impersonality of System Throughout the various group discussions participants indicated that it was often difficult and demeaning to ask for help. Many perceived the system to be regulated by rules rather than by an understanding of human need. For many there were times when temporary relief was needed but because the women were ‘‘over income’’ there was no financial assistance to pay for medical care. One woman stated, ‘‘if you are not a person who abuses the system, or just uses it all the time y they should give [help] y I wouldn’t

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come and ask if I didn’t need help.’’ In describing her experience with her disabled son, one mother stated ‘‘I find that doctors treat me, and treat us, differently because he has TennCare.’’ Other parents similarly stated that they felt TennCare clients were often treated as ‘‘second class citizens’’ when seeking health services. The most common source of negative experiences or gaps related to health services or insurance included difficulties in accessing physicians (primary care or specialist), poor quality of care, rudeness or dismissive attitudes, and lack of coverage for certain types of treatments such as mental health services, medications, and adult dental and eye care. The inability to pay for insurance, not qualifying, or inappropriate denials of TennCare were also common concerns and experiences.

DISCUSSION As hundreds of thousands of low-income families lose public insurance, public health safety net providers will be the first to feel the impact of the growing needs of the poor. The state of Tennessee provides a particularly useful case study for examining the problems likely to emerge from recent trends in federal and state retrenchment of funding for public health services, such as those reflected in cuts to Medicaid/TennCare health insurance programs (Conover & Davies, 2000; de la Cruz, 2005; DFA, 2001; Wadhwani, 2005). The present study illustrates through women’s own voices the benefits and necessity of public health safety net programs. In some cases, however, benefits of public health care were overshadowed by the difficulties faced as women sought or used public health services while attempting to raise their families on limited budgets. Problems of access and quality of care were particularly prevalent in rural regions and among minority women who face a legacy of institutional discrimination in the South, both in job opportunities and access to adequate health care. In the wake of severe cuts to TennCare/Medicaid we can expect that the importance and demand for safety net health care programs such as those discussed by our focus group participants will increase. In the growing absence of health insurance, not only will the need for these programs increase, but also for others such as diagnostic health services for women and children, and for prescription medications and assistive technologies. The loss of public health insurance as a means for allowing consumers to direct their own preventative and health maintenance needs will mean that the demands on safety net providers and hospitals will undoubtedly quickly outstrip their abilities to

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provide adequate public health services. As a result we can expect that race/ ethnic and class-based health disparities in morbidity and mortality will increase (Finch, Frank, & Hummer, 2000; Forbes, Frisbie, Hummer, Pullum, & Echevarria, 2000; Hummer, 1996; Kreiger, Herman, Avery, & Phillips, 1993; Smedley, Stith, & Nelson, 2003; Spalter-Roth, Lowenthal, & Rubio, 2005; Williams & Collins, 1995; Wykoff, 2002). Without health insurance to pay for early detection and prevention of illnesses, low-income families will likely develop advanced medical problems prior to seeking care and then much of that care will be sought in hospital emergency rooms. While the ability to pay for services through insurance and affordable health care was the foremost concern of women in this research, other generic themes emerging from the focus groups reflected women’s perceptions of exclusion through information barriers, dismissive and judgmental treatment, and bureaucratic problems. Participants consistently expressed a need for information regarding eligibility criteria, services available, and paperwork and recertification procedures. It is possible that the absence of information about specific services sometimes reflected an absence of service availability in certain regions, particularly rural areas. On the other hand, failure to disseminate information is also one means of curtailing the volume of services. National data indicate that the children of women who qualify for safety net benefits are likely to come from working, female-headed households (Edin & Lein, 1997; Hays, 2003; Reese, 2005; Sidel, 1986). Under these circumstances, most women have little, if any, time to gather information. Their time is consumed with working, childcare, scheduling and keeping appointments, and organizing and collecting required paperwork. When health and social service organizations and caseworkers limit or withhold information about services and eligibility, such practices serve to reduce caseloads and the public demand for services, particularly in periods of welfare reform when public spending on means-tested programs is contracting (Piven & Cloward, 1971/1993). Negative experiences with public health services reported by participants included dismissive or judgmental treatment from staff or providers. Most of the women could not afford (financially or for the health of their children) to discontinue services. Nor were they in a position to demand better treatment or to simply take their business elsewhere as the majority of more affluent Americans would do. Many of the mothers felt that they were treated poorly either due to their status as welfare recipients or in some cases, due to their race/ethnicity. Minority women were more likely than white women to report lower quality care or poor treatment. Most of these women coped with poor treatment in any way they could depending on

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resources, time, and energy. For instance, some women reported placing formal complaints, going to supervisors, or enlisting the support of caseworkers who had more influence within the organization than the clients. Fighting the system, however, is extremely time and energy consuming. Women had to place numerous phone calls, file more paperwork, and persistently fight for better treatment. If they did not have time to engage in these activities, they simply accepted the health care they could secure and tried to ignore the negative treatment. For most, any health care services were better than none and their children’s health was more important than the mother’s pride. When health and social services staff are pressured to reduce their caseloads they may engage in practices of exclusion, whether consciously or not. Negative perceptions of the poor as lazy or undeserving help to foster such behavior, as do bureaucratic organizations that exert power and control over beneficiaries (Piven & Cloward, 1971/1993). Findings from this research suggest that bureaucratic disorganization associated with health safety net programs may compromise the health of mothers and their children. Many of the women experienced disorganized bureaucracy in the form of incomplete or improper paperwork processing, long waits for services, being denied care in hospital emergency rooms, experiencing a shortage of primary care physicians or specialists willing to accept public insurance, and limited hours for appointments. Long wait times, a form of restricting benefits and services, was particularly prevalent for urban residents, no doubt because of the greater volumes of people served in urban communities. Inappropriate processing of paperwork was especially apparent for mothers of children with special needs living in rural regions. In rural areas mothers were additionally concerned that their children were not receiving needed services, sometimes due to delayed diagnoses by overburdened or incompetent physicians, or simply due to the fact that specialists or treatment facilities were unavailable for their children. In both rural and urban regions parents were forced to rely on hospital emergency rooms for needed care because access to physicians was too limited.

CONCLUSION The voices and experiences of women who are clients of public health services raise important questions about the priorities of policy-makers, legislators, and a nation that increasingly allows women and children to bear the brunt of poverty and poor health in the US. In fact, the US remains the only industrialized nation that fails to provide universal health coverage and

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where health care is primarily financed by for-profit, private insurance companies. Approximately one-sixth of the US population remains uninsured and many others are at risk of losing health insurance in the course of normal life-course events (Quadagno, 2004). A number of scholars (Light, 2004; Piven & Cloward, 1971/1993; Quadagno, 2004; Reese, 2005) have explored the question of why the US offers only intermittent relief to the poor as opposed to more comprehensive welfare coverage. In general, they have concluded that blame must be placed on the popular politics and social policies of distinctive American political institutions that tend to favor individual action over any form of state assistance. Not inconsequentially, those experiencing the instabilities of the labor market and falling below federal poverty guidelines are disproportionately women and children and people of color (Edin & Lein, 1997; Hays, 2003; Kreiger et al., 1993). As the conditions of poverty increase with a restructured and global labor market that renders the skills of many obsolete the likelihood of health care problems will also increase (Haan, Kaplan, & Camacho, 1987; Reading, 1997; Weitz, 2004). Without an adequate safety net, the cyclical relationship between poor health and poverty is likely to continue and worsen. In a conservative climate of welfare reform and cuts to Medicaid decision-makers have turned a deaf ear to the voices and experiences of the women and children most detrimentally affected. Indeed as increasingly vocal religious and politically conservative groups have voiced support of restricting access to reproductive health services, abortion, sexuality education, and contraceptives for women, legislators have simultaneously enacted policies that restrict access to means-tested and social welfare programs for women with increasingly limited reproductive health options (Reese, 2005). Failure to take into account the lived experiences of low-income and minority mothers who struggle to meet their children’s needs only serves to bolster the conservative rhetoric that blames the poor for their conditions and legitimates the retraction of an already inadequate safety net. Policies and practices affecting social, political, and economic efforts to alleviate the health care crisis in the US will not be easily won in an age of welfare reform and growing restrictions on public spending for health. Blank (2002) argues that while universal health care is necessary for positively transforming the current health care system, intermediate steps that may have a greater likelihood of success include programming that provides universal health coverage to children. A first step is to ensure that all children currently eligible for Medicaid or other public health programs (e.g., the federally sponsored Child Health Insurance Program) receive benefit entitlements (USGAO, 1994, 2001). Requiring employers to provide health

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insurance or to pay into a general state-supported risk pool would also go far in decreasing the number of uninsured persons. Finally, providing tax credits for low-income families for health care costs similar to the Earned Income Credit would provide an important measure of relief to needy families. Other measures to help families rise above poverty will of course require more comprehensive programming: creating more adequately paying jobs, improving quality education, and creating more affordable housing and childcare. Although such programming will require a major shift in national priorities for spending, strengthening comprehensive safety net programs will go much further in ending poverty than current efforts to restrict them (DFA, 2001; Moss & Carver, 1998; United States Department of Health and Human Services, US DHHS, 1994, 2003). Unfortunately, current political trends portend a deepening of the conditions of poverty, a growing bifurcation between privilege and pauperism, and increasing health disparities between the affluent and the poor.

NOTES 1. Women, infant, and children. 2. Tennessee’s tax-supported health insurance program which incorporates federally funded Medicaid. 3. Coverage for pregnant mothers not otherwise enrolled in Medicaid or TennCare. 4. In 1994 the state of Tennessee implemented one of the most generous health insurance programs in the US, covering the Medicaid-eligible, uninsured, and uninsurable populations up to 200 percent of FPL. Designed on a managed competition model the state aspired to efficient health care programming by combining federally funded public health with state-funded managed care type programming. By 1999 the state ranked first in health insurance coverage rates for low-income children and fewer than half as many Tennesseans with incomes under 200 percent of the FPL were uninsured than in the nation (Conover & Davies, 2000). Beginning in July 2005, however, deep cuts to spending for the state-sponsored health insurance program TennCare were implemented, essentially rolling it back to a managed Medicaid program. An estimated 60 percent of those who are impacted by the cuts are women as women comprise the majority of adult enrollees (de la Cruz, 2005).

ACKNOWLEDGMENTS We are grateful to Dr. Peter Heller and Carol Smith for directing this project and assisting with data collection and to students in the first author’s Applied Qualitative Methods course for assistance in collecting and

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processing data. This research would not have been possible without the dedication and assistance of numerous staff members of the state and local level health departments and other social service agencies. Funding was provided by the Tennessee Department of Health and by a MTSU faculty development and creative activity grant in Social Work. We acknowledge Dr. Josephine Edwards, Director, MTSU Center for Health and Human Services for the Center’s support of this research. Special thanks are extended to Dr. Joyce E. Williams for editorial feedback on earlier drafts of this manuscript.

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STEPS TO A NEGOTIATED CONSENSUS: A FRAMEWORK FOR DEVELOPING COMMUNITY HEALTH INITIATIVES Teresa L. Scheid, Dennis R. Joyner, Marcus G. Plescia and Kelly Blasky ABSTRACT Improving access and the quality of health services requires community health initiatives. However, in order for such efforts to be successful, there has to be some agreement at the community level as to which community initiatives ought to be pursued. With diversity of population, health disparities, limited resources, and competing needs, agreement is unlikely; instead a negotiated consensus among key stakeholders (community advocates, agency leaders, service providers, and consumers) must be developed. A negotiated consensus takes into account differences and allows for some kind of resolution of these differences in order to achieve a given end. A negotiated consensus is necessary for the identification of common goals, prioritizing these goals, and either seeking funding or utilizing available funding for selected community initiatives. The chapter examines efforts by a regional health care system which fostered community

Access, Quality and Satisfaction with Care: Concerns of Patients, Providers and Insurers Research in the Sociology of Health Care, Volume 24, 235–257 Copyright r 2007 by Elsevier Ltd. All rights of reproduction in any form reserved ISSN: 0275-4959/doi:10.1016/S0275-4959(06)24011-0

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initiatives in four diverse sites. We develop a framework which can guide other community initiatives in health care.

INTRODUCTION Community health initiatives are those that seek to improve the overall health status of a given population (as opposed to individual health improvement), and seek to redress problems of access and quality of care. Community initiatives are often driven by racial and ethnic disparities in health, and funding increasingly supports community-based participatory research as a primary means of eliminating health disparities (Minkler & Wallerstein, 2003). Community participation is a central component to any public health care initiative as community members and groups must be involved in program development and implementation if they are to be successful. The ideal of community involvement has been part of the World Health Organization’s ‘‘New Health Promotion’’ philosophy (WHO, 1986) and recognizes that community participants need to identify their own health promotion needs and strategies. The community is also where prevention and interventions occur, and community collaboration is necessary for successful health care outcomes. Consequently, the Centers for Disease Control ‘‘Planned Approaches to Community Health’’ and the more recent REACH initiative for minority health issues contain mandates for participatory research (Green, 2003). However, researchers and agents who are empowered by various resources to undertake community initiatives must find ways to partner with community advocates, providers, and consumers. Community-based initiatives require the active involvement of key community members, but defining these ‘‘critical’’ people is often problematic. Jewkes and Murcott (1998) provide an extensive discussion of how definitions of ‘‘who’’ is the community vary and how these differences can influence the meaning and outcome of community participation. MacQueen et al. (2001) note that there is a lack of an accepted definition of community, and argue that participatory approaches often run into conflicts over who legitimately represents the community. Using views of community expressed by participants in four community initiatives, they define a community as ‘‘a group of people with diverse characteristics who are linked by social ties, share common perspectives, and engage in joint actions’’ (MacQueen et al., 2001, p. 12). This definition is similar to that used by the World Health Organization, which Wayland and Crowder (2002) argue emphasizes similarity among community members, and ignores differences. Navaro (1984)

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may more accurately define community in terms of conflict and power relations. Conflict is particularly likely when communities are diverse and there are differences in values, where there are domain disputes, and where groups have different levels of power. Consequently, the core task for a community coalition will be overcoming differences and negotiating a consensus about health care priorities and the types of programs which can meet those priorities. We develop a framework based upon our experience with four community-based initiatives to guide local coalition building that can be applied to diverse communities and settings. This framework not only helps to identify the relevant community, but also provides guidance for understanding local dynamics and fostering collaborative efforts. One unique aspect of our experience is that the impetus for the community initiative came from outside the communities – through the efforts of a regional health care system and researchers to develop programs to improve community health. Consequently our framework will be useful to other researchers and agents seeking to partner with local communities.

BACKGROUND There is a great deal of literature devoted to community health planning, community participation, and coalition building (Bruce & McKane, 2000; Butterfoss, Goodman, & Wandersman, 1996; Chavis, 2001; Isreal, Schulz, Parker, & Becker, 1998; Norris & Pittman, 2000; Robertson & Minkler, 1994; Woelk, 1992). Much of this literature is based upon ‘‘bottoms up’’ or grass roots approaches where individuals and groups work together to achieve common ideals. In addition to grass roots approaches, a good deal of community health planning is ‘‘tops down’’ where larger institutions and organizations work to improve health in the communities they serve. These kinds of efforts involve developing partnerships with local communities (Bruce & McKane, 2000); however larger organizational actors must first overcome local mistrust and resistance to outside intervention. This chapter builds upon the experience of a non-profit, vertically integrated regional health care system to identify and respond to community health needs by offering significant financial, technical, and information resources for community-based initiatives. The medical center obtained funding (in 1998) to establish a Community Health Institute (CHI) which went into four different communities and sought to identify and respond to health needs in under-served communities.

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The major objectives of the project were to:    

Identify and address health concerns from a community perspective. Develop and strengthen community health coalitions and partnerships. Develop targeted interventions based on comprehensive data analysis. Improve community health status.

In addition, the health care system sought to better understand how varying community dynamics affect health status (i.e. rural versus urban), to be able to identify those common factors which make community health improvement activities successful, and to learn how to be locally responsive to health care needs. The projects in each county were referred to as Community Assessment and Planning Initiatives, and a similar protocol was followed in each. First, staff (the second two authors) from the CHI went into each community (which were county based) and spent a period of time learning about the community and building local ties as well as credibility. CHI staff then worked with each community to complete a thorough needs assessment in order to determine community health needs and resources. This comprehensive community health evaluation was subsequently used to help communities prioritize needs and in the development of community-based health care programs. The next step was to develop coalitions and partnerships, and funding was provided by CHI for a coordinator position to facilitate collaborative efforts. CHI staff then worked with the coalition to determine priorities for targeted interventions, and helped to obtain funding for these interventions. Finally, CHI (with the assistance of the first and fourth authors) evaluated local response to the planning process as well as the success of the interventions. The major challenge to any community health initiative is to develop a shared vision (Fawcett, Francisco, Pain-Andrews, & Schulz, 2000) and to then develop a strategy to achieve that vision (Mitchell & Shortell, 2000). With diversity in populations, limited resources, and competing needs it is not easy to arrive at a consensus over community needs. When parties (individuals or groups) need to deal with one another to get something accomplished, they enter into negotiations (Strauss, 1978). In terms of community-based health, community health agencies need to arrive at tacit agreements with respect to their respective domains; that is, turf battles need to be resolved. If they are not, domain disputes will work against collaborative efforts. As found by Shortell et al. (2002), successful collaborations have broad-based membership from all sectors of the community and were able to manage conflict by creating interdependencies and trust. Bond and

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Keys (1993) argue that groups need to be empowered in order for collaboration to be effective. Critical to successful coalition building is competent leadership which understands the complexities of community relations (Mizrahi & Rosenthal, 2001). Shortell et al. (2002) also found that organizational leadership was critical to successful collaborations; however diverse groups may be resentful of organizational ‘‘drivers’’ who provide direction and stability to community initiatives. Subsidiary leadership is consequently an important component to successful collaborations (Shortell et al., 2002). While CHI was an organizational driver, and offered expert advice as well as resources, they were initially viewed with distrust. Capace and Schantz (2000) found that experts need to be able to listen and mobilize people and resources. While there is much written about developing successful coalitions (Berkowitz & Wolff, 2000; Braithwaite, Murphy, Lythcott, & Blumenthal, 1989; Isreal et al., 1998), there is little guidance in the literature as to how external organizational entities can create successful community coalitions which both empower groups and which provide for the kind of organizational stability where some kind of negotiated consensus can be arrived at. This chapter draws from our experience in developing community health care initiatives and provides a framework which can guide future efforts (both grass roots and top down) to build community coalitions.

METHODS Description of the Setting Four communities were targeted based upon their being an underserved community and hence eligible for external funding. One community was a representing a small, economically challenged rural county (A), the second community consisted of a mid-size rural county (C), and a third county (U) represented a transitional growth county with a mix of small and medium sized towns. The fourth site (M) was not a county, but an area within a large SMSA and represented a high-density urban population with a majority of the population being African American. The first county where CHI began its work was A county, with a population of 25,275. A is a rural county with roughly equal proportions of African American and white residents and has poverty and health indicators that are significantly lower than other counties in the region. Various health status indicators show significant disparities between races. It is a

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health manpower shortage area and the local federally funded community health center has had recruitment and financial challenges. CHI focused its activities on an existing coalition to address issues of health status and health disparities in the county. Efforts were made to broaden the membership of this coalition. A full-time coordinator was used only for the first year of the project then a part-time position was shared with the local health department. With a population of 96,287, C county is rural in nature with two medium sized towns and several smaller towns. The county’s racial mix is 77% white and 21% African American. In recent years, the county has seen an increase in unemployment as several large manufacturing employers have downsized or relocated operations. The county has a highly progressive public health department which, in partnership with the local hospital, has successfully developed a community health center to meet the primary care needs of underserved residents. A community health promotion and planning coalition had previously been established with broad representation from the community and health and human service sectors. The coalition had a considerable degree of structure, leadership, experience, and community presence. Because the goals of the existing coalition closely paralleled those of the CHI model, the steering committee of the coalition served as the advisory group of the CHI effort. The CHI field staff coordinator for the county served as the coalition director. With a population of 123,677, U county has experienced the fastest growth and demographic change of the four communities participating in the CHI effort. Often described as a ‘‘bedroom’’ community, the county’s population is 82.8% white, 12.5% African American, and 6.2% Latino (although local officials indicate the Latino population to be significantly higher). The overall population is younger than other project communities and most common health indicators are favorable compared to other sites. The most significant challenge among health and human service organizations is adequately handling the increasing demand for services with limited funding and resources. Prior to CHI’s efforts, a community health planning coalition did not exist. The final site (M) is an urban, predominantly African American community within a large city. The community has poverty and health indicators that are significantly lower than the rest of the county. In 1998 the regional health care system built a community health center in the M district to improve access to primary care because of documented health disparities. Building on the community oriented primary care model at the health center, a coalition was formed comprised of local grass roots community

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activists and senior leadership representatives from the county health department and other local service agencies. During the first year, the coalition was awarded a Centers for Disease Control REACH grant to target health disparities in diabetes and heart disease and this became a major focus of CHI efforts. As noted earlier, the Centers for Disease Control REACH grants mandate significant community participation in research and evaluation. Key Informant Interviews In order to evaluate the efforts of CHI, semi-structured interviews were conducted with key informants and stakeholders in the summer of 2002. Respondents were selected based upon their knowledge of, and involvement with the CHI project in their county. For each of the four counties the hospital CEO, the Health Director, the Coordinator, and coalition representatives were interviewed. Six individuals were interviewed in each county for a total of 24 interviews. In addition, seven CHI management personnel and leaders were interviewed in order to elicit an understanding of how the outcomes of the project varied from its original intentions. Respondents were all interviewed in person at the respondent’s office; respondents signed an informed consent statement that had been approved by the health care system’s IRB. Each interview took approximately a half hour and respondents were asked to describe their role in the CHI project, to describe the role that CHI had played in the community, what they thought the benefits of CHI were, and in what says CHI could be more effective. Respondents were also asked to assess each component of the protocol described above, and to assess the effectiveness of the interventions. Respondents were also asked if CHI had affected the image of the regional health care system. Interviews were tape recorded and transcribed into Word. Analysis The interview data was analyzed using QSR N5, a software package that allows for the exploration and coding of qualitative data, text search, quantitative assessment of prevalence of key themes, and exploration of relationships among key concepts (Richards, 2000). The theoretical framework used to analyze the data is that of grounded theory (Glaser & Strauss, 1967; Strauss, 1987; Strauss & Corbin, 1990), which is based on the constant

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comparative method to identify key concepts and categories of these concepts, and to explore the relationship between concepts. QSR N5 is particularly suitable for this approach because it allows for the comparison of concepts and groups of respondents. The research team at CHI (comprised of the authors) met two times to discuss the initial coding of the data. During the first meeting we worked collectively through the coding of one interview transcript to identify themes and concepts. The team then agreed to read every interview transcript and to code them for the themes we had identified in the first meeting, as well as for new, emerging themes. At the second meeting we discussed our coding frameworks, and agreed upon a common set of themes and categories (Table 1). The first author then coded each transcript, and prepared a summary of the key findings which included comparisons by county and respondent role. The research team then addressed the more fundamental question of how to assess whether CHI had met the objectives which had directed the case study. A second set of concepts was identified, which focused on an assessment of CHI from both the perspective of the counties targeted for intervention as well as of key personnel in the regional medical center (Table 2). In reporting the findings from the evaluation, we rely upon summaries of the qualitative data which allows for comparisons between counties.

FINDINGS The Challenge in Establishing Coalitions and Consensus In A county, members of the existing coalition were highly committed to addressing the health needs of their community. Although these needs were often perceived as overwhelming, participants maintained a high level of pride, energy, and participation. There was strong collaboration among existing coalition members, but membership was limited in its scope. Despite targeted recruitment efforts, there were few African American participants, limited participation from the local school system and considerable conflict with leadership of the local Community Health Center. Collaboration in A county was characterized as a reaction to a particular situation or circumstance rather than a planned or collective event. Local coalition members were often critical of how CHI resources were distributed. Much of this stemmed from a perception of CHI staff as outsiders, and a strong concern about preserving local autonomy. Coalition members felt that CHI

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Table 1.

243

Common Themes and Categories (n ¼ 24 respondents, 4 counties). N

%

Image of CHI More positive More involved Cannot say No change Worse

9 3 3 2 0

38 12 12 8.3 –

(All) (1 C, 2 M) (2 A, 1 C) (A)

Role played by CHI Facilitator Partner Big brother

7 6 2

29 25 8.3

(All but U) (All) (A)

Benefits of CHI Resources Collaboration Help set priorities Expertise/network Staff support Needs assessment Leadership

19 17 11 10 5 5 5

79 71 46 42 21 21 21

(All, though M least likely) (All) (All) (All) (4 C, 1 U) (Not M) (Not M)

Coordinator role Linkages Problems with role People to the table Well respected Brought expertise Role was unclear

8 6 4 3 2 1

33 25 17 12 8.3 4.2

(All but U) (A and U) (All but U) (C and M) (A) (A)

13 10 8 6 6

54 42 33 25 25

(All) (All) (All but M) (All but U) (4 A, 1 M, 1 U)

4

17

(1 A, 3 C)

17 4

71 17

(All) (3 C, 1 M)

5 7

21 29

(All but C) (All)

Needs assessment Valuable Help set priorities Was disseminated Was used in grants Out of date Duplicated existing efforts Coordination Collaboration With CHI Within county Domain disputes With CHI Within county

Counties Represented

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Table 1. (Continued )

Coalition building Expanded existing In progress New boards Already in place

Table 2.

N

%

12 5 5 2

50 21 21 8.3

Counties Represented

(All but U) (A and U) (M and U) (A and C)

Overall Evaluation of CHI.

Description of Categories and Summary of Responses CHI provided for Community-based care Better system of care Additional resources Comprehensive data assessment Data driven priorities Coalition building Responsive to local needs Flexible approach (responsive to local needs) Improve image of medical center

N (31)

%

26 24 24 26

84 77 77 87

27 26 19 14

87 84 61 45

27

87

A (n ¼ 6) C (n ¼ 6) M (n ¼ 6) U (n ¼ 6) CHS (n ¼ 7) Comparisons by county Community-based care Comprehensive data assessment Improve image of CHS Coalition building Better system of care Responsive to local needs Flexible approach Provided resources

4 5 4 4 5 2 1 6

4 4 5 6 5 3 5 6

6 5 5 6 4 4 3 3

6 5 6 6 5 4 1 5

4 7 7 4 5 6 4 4

funding should go directly to the county as they were acutely aware of local needs and had specific programs that needed funding. The results of the CHI community assessment were not highly utilized and there was considerable controversy over some funding decisions. Complaints were frequently

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directed at the CHI Director, but the Director was also highly respected by the community. In C county, leaders of the major health and human service organizations have a strong history of close collaboration. They have a strong collective vision to improve community health, understand the importance of mobilizing community forces to promote health and advocate for health initiatives by supporting those organizations whose missions encompassed particular areas of concern. As a result, C county organizations had considerable experience working together to assess community health needs and implement health improvement initiatives. While they were eager to work with CHI, they clearly wanted their planning and organizational efforts to ‘‘drive’’ the process and not duplicate local energies. One of the initial challenges in U county was garnering support for a community health coalition. Some community health leaders questioned the need for such a coalition and its purpose. Among those who saw potential benefit, there was concern about the sustainability and the commitment of members to a coalition. Historically, collaboration among service organizations had been limited to small specific projects. Health institutions and other organizations tended to support each others’ efforts verbally but operationally focused on their individual organization’s immediate missions. In short, there were persistent domain disputes and functional specialization which worked against collaboration. Although staffed with a coordinator, initial attempts to develop an active, collaborative coalition saw little success. Initiatives and projects were developed and produced almost solely by the coordinator. While coalition members had ideas for community health improvement, very few organizations had the resources or commitment to implement the initiatives. In general, the lack of a local entity or leader to champion and nurture the coalition’s development led to a long delay in its productive development. In an effort to revitalize the coalition, a chairperson with local name recognition was identified and the coalition began slow formation. A health need assessment was completed and an RFP process was implemented to fund community health interventions. The M community was unique among the four projects in that it already had significant involvement of local community residents in the planning, implementation, and monitoring of a large community health intervention. However, initial distrust of the regional health care system was a significant challenge for CHI staff. Local residents harbored major concerns about previous treatment by the medical center. Some of these feelings were related to historical issues of segregation and integration activities. Many residents

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had questions about the intent of the project and were highly suspicious of CHI’s long-term commitment to continued support of community-based initiatives. These issues manifested themselves in several turbulent meetings in which the intentions of CHI leadership were directly and indirectly questioned. Federal funding led to conflicts over how funds would be distributed ‘‘to the community.’’ However, community organizations were perceived by CHI as being ‘‘loosely organized’’ and there were concerns about their capacity to take on additional responsibilities without significant professional support, but community groups were fiercely independent. Community members were often distrustful of data driven issues or needs and were strongly committed to their own opinions and concerns. Some of these conflicts improved as the coalition gained experience working collaboratively, but issues related to trust and independence continue to emerge.

Overcoming ‘‘Big Brother’’: The Communities Experience with CHI A county had the most negative experience with CHI, and never did really overcome their perception of CHI as ‘‘Big Brother.’’ This is in part due to the perception that the model that CHI tried to implement was different and participants in A county wanted to do things their way and wanted to preserve their autonomy. Respondents in A county were less likely to report that the project had resulted in improved coalition building, or that CHI was responsive to local needs, or that the approach was flexible, and they reported problems with the coordinator position. Respondents indicated that there was disagreement over CHI priorities and those within the county. Because a partnership with CCHI was not fully established, the ability to develop local consensus was jeopardized. C county data indicate an overall positive perception of the CHI project. The role of CHI was described as facilitator and partner, and respondents in C county were quite outspoken in feeling that CHI had worked with the county, and had used a flexible approach. The majority of respondents targeted staff support as the main benefit of CHI. C county respondents also reported increased coordination within the county as a result of CHI, and no one described any kind of domain dispute with CHI. In contrast to A county, C county had few problems with the coordinator role and felt that while the needs assessment duplicated some existing efforts, it was very user friendly. Furthermore, respondents ranked resources, collaboration, and technical assistance as major benefits of the CCHI collaboration. Critical to the success of CHI in C county was the perception that local autonomy had

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been preserved and that the community was empowered by CHI to develop a better health care system. U county was furthest behind in implementing the CHI model, and was still struggling to overcome inertia and develop coalitions at the time of the evaluation. Most respondents felt that CHI had played a major role in developing coalitions, although several were critical of the coordinator for not facilitating collaboration more effectively. However, the failure of consensus building efforts was not due to mistrust of CHI, but to a lack of an existing infrastructure. Uncertainty and understanding of the coordinator’s role was also identified as a particular challenge to the process. In contrast to U county, respondents in M community were most likely to feel that CHI had had a direct impact on coalition building and overcoming existing disputes over priorities within the county. Issues of trust and independence were a common theme in the respondent interviews, with the majority reporting that CHI was able to overcome its Big Brother image and foster coalition building efforts.

Partnering and Empowering Critical to the success of CHI was its ability to partner with communities and to work with them to help define health priorities. Two comments are illustrative of how CHI helped overcome the ‘‘Big Brother’’ image of the larger health care system. When you have something as big as (medical center) people tend to think of it as the Microsoft of hospitals, and their up there and we’re down here and they never hear of it. But CHI puts the ideas and practices and funds into local communities in a community driven designated way. And I think that is very valuable (coalition member, #16, lines 375–378). There was significant community distrust about CHS, a lack of responsiveness to community needs. I think that while some of that is still there, that much of it has dissipated based on getting to know one another and to discuss some things. I thank that may have changed the community attitude (coalition member, #19, 93–97).

Most respondents felt that CHI was either a facilitator or partner. In terms of a facilitator role, the word empowerment was used a number of times. CHI has ‘‘empowered us, not only with the resources, but with the ability to choose how to use them’’ (coalition member, #15, 48–49). The facilitator role was seen in terms of taking a ‘‘grassroots approach’’ (Coalition member, #15, 124–126). When speaking of partnership, respondents felt that

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CHI had come to the table and worked with communities to help address their health care problems. When I say partnership I am really talking, truly about, building relationships where we are both not threatened, we are not insecure, where we really want to work together for the benefit of this population (Coordinator, #17, 60–63).

As a partner, the willingness and ability of CHI to listen was deemed critical. The biggest thing is just a willingness to listen to what people have to say, to be willing to wear your bullet proof vest and come in and just take it because there are feelings in communities y and from time there are going to be upsets and there is going to be misunderstandings y after the storm is over comes the showing that you are going to be a partner over the long term (Health Department Medical Director, #18, 74–82).

Only two respondents (both in A county) felt that CHI had played the role of ‘‘Big Brother.’’ Both individuals felt that decisions about resources had been made for them, by the larger health care system. In terms of the specific benefits of CHI (Table 1), the majority felt that CHI had provided needed resources (79%), had helped set priorities (46%), had provided expertise (42%) and had facilitated collaboration (71%). One respondent succinctly mentioned all three benefits. They provided us with all kinds of things, including a full-time coordinator. They also provided us with data and other information and ideas and funding for projects and all kinds of things, but really the relationship has been to work through our local agencies (Hospital CEO, #12 60–65).

As this CEO described, CHI provided each community with support for a coordinator position and a comprehensive needs assessment. The assessment of the coordinator role was generally positive in that the coordinator did bring people to the table (17%), did facilitate linkages (33%) and was well respected (12%). There were problems with the coordinator role in both A and U counties (25%) – where the position was either part time, or it was felt that the person hired to fill that role did not really understand the community. One of the purposes of the coordinator role and of CHI was to increase collaboration (within the community and between the community and the medical center) and to facilitate the building of coalitions. The majority of the respondents reported increased collaboration with CHI (71%) and only 21% noted the presence of domain disputes between the county and CHI (respondents indicated that there was disagreement over CHI priorities and those within the county). Much of the coordination came out of active

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efforts to build, or strengthen existing coalitions. As described by one coordinator, I think we have to court several different groups because all of them aren’t together as one unit, because people have different ways of operating and some don’t want to work under the same conditions as others. We found really strategic ways to engage them in the process to find out what it is that they are interested in, not being able to give them everything they want, but really taking into consideration what they see based on their knowledge and experience from living in the community. (Coordinator, #20, 218–225).

Another important factor identified was that CHI had allowed communities to preserve their autonomy. CHI is wedded to the thought of what is generated in the counties that they are in; it should be locally generated, locally initiated, and locally supported. That is the best way to do it. CHI has really allowed the (health alliance) to take the lead (coalition member #16, 333–334).

Another respondent described the local communities as ‘‘drivers of this train’’ (coalition member, #13, 140). This goes back to the role of CHI as a partner and allowing the ‘‘residents to take charge’’ (Coordinator, #20, 120). In terms of the overall evaluation of CHI and of the model used for the intervention, respondents were generally positive (Table 2). The majority felt that CHI had produced community-based care (84%) and a better system of care (77%). One Health Director felt that CHI had ‘‘made dramatic improvements in healthcare’’ (#02: 180). Of course, the way that CHI had improved health care was to provide resources (77%) and comprehensive data assessment (84%) which produced data driven priorities (87%). Coalition building was also critical (84%). CHI had facilitated coalition building was responsive to local needs. I think this model has been a little different than anything else, any other public health model we worked under. I think we have all grown, and learned to really pay attention to people and not so much needs and resources and how much money an organization has to give, but really pay attention to people and what they are saying, and what they are saying when they are not saying something (Coordinator, #20, 274–280).

It was clearly not only that the resources allowed for CHI’s success in developing community-based health care reforms – resources may be necessary, but they are not in and of themselves sufficient. What seem to work was community involvement, and helping local agencies and individuals to identify and respond to challenges and problems and getting locals involved in their own situations and trying to find realistic solutions to their problems y that have a lasting effect, so I think it has been a very valuable exercise’’ (CHS #28, 66–72).

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A FRAMEWORK FOR DEVELOPING COMMUNITY HEALTH INITIATIVES Drawing from the respondent feedback, as well as our own collective experience in community-based initiatives, we developed a framework to guide efforts in community engagement and health planning that can be applied to diverse geographic settings (Fig. 1). The first step is to define the target community – which the literature points out is not as obvious as it may seem (Jewkes & Murcott, 1998; Wayland & Crowder, 2002). As MacQueen et al. I. Define Target Community a. spatial, geographic b. social c. cultural d. political II. Identify Key Stakeholders and Participants: a. healthcare organizations and agencies b. advocacy groups, local advocates c. service providers (professional associations, individuals) d. consumers III. Assess Existing Infrastructure a. resources b. data, knowledge c. political, social climate e. leadership IV. Assess Existing Levels of Coordination a. inter-agency boards, coalitions b. informal linkages c. levels of system integration d. domain disputes – conflicts V. Determine Level of Receptivity a. degree of trust b. existing knowledge and awareness c. sense of community d. willingness to engage in planning process VI. Develop Mechanisms to Bring Stakeholders to the Table a. identify a governing structure b. provide incentives c. set concrete goals (i.e. new programs, grants, etc.) d. develop open channels of communication

Fig. 1.

Developing Community-Based Initiatives.

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(2001) argue, communities share some locus – either spatial or geographic, social, cultural, or political. Issues of minority health (a common concern in the United States) will generally go beyond geographic boundaries. At the same time, broad geographic boundaries (such as county or region) will often contain multiple social and cultural groups with different perceptions of health care need. However, even clearly defined communities will exhibit conflicts over health care priorities. For example, many residents in community M (which is largely African American) were more concerned with HIV disease than heart disease and diabetes (which is the funding CHI helped them to obtain) and were critical of the grant even though it brought significant resources to the community. The goals of the coalition building effort will need to be taken into consideration when defining the target community. Once having defined the boundaries of the community, it is critical to identify key stakeholders and participants. In any community-based effort there are generally two major groups of stakeholders who have a vested interest in a particular system, sector, or decision that relates to the project. ‘‘Receivers’’ such as advocacy groups/advocates, community members, and consumers, are participants who are affected by the initiative; and ‘‘Doers’’ such as directors, CEOs, leaders of key departments/committees, partners, professional associations, and individuals within agencies, are participants who provide, assist, or develop program operations (Eng & Parker, 1994). The importance of identifying and engaging key leaders is a crucial step in any effort to assist local planning efforts. Leaders are individuals who utilize power and influence to advance cause/issues/initiatives to effect some type of change and have qualities recognized by the community. The support and participation of local leaders was one of the key aspects of the CHI project and required significant, ongoing effort by the project director. With the exception of M community, most of the leaders identified in each county were senior executives in the hospital system or health department. Individuals who hold a job or community title that is recognized as a leadership position and has decision-making power have been described as ‘‘Positional’’ leaders (Goodman, Speers, & McLeroy, 1998). These leaders were important because they have a clear power base in their institutions and it was a political necessity that they be involved in the project. In the CHI rural projects, local leaders of the hospital system were easily approached because of their close relationship to the larger health care system, although they were not always consistently supportive of the project. They were generally effective at recruiting and engaging participants from other organizations and backgrounds because they were well respected and were

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widely known because they had held their positions for some time. Health department leaders were more difficult to engage because they were not part of the larger health care system. They were recruited through their relationships with the local hospital and were generally attracted by the significant resources of the project. Again, local respect and time in the job played a strong role in their effectiveness. In M community leaders of local institutions were mostly perceived as outsiders and were limited in their ability to engage local participation. Therefore attempts were made to identify community members with a demonstrated ability to mobilize participation of others. These leaders, who lack the formal title of the positional leaders, but exhibit determination, respect and decision-making capabilities within the community, have been described as ‘‘Reputational’’ leaders (Baker & Polk, 1998; Goodman et al., 1998). The involvement of reputational leaders was prioritized because of the underlying premise that the CHI project should utilize and support existing community capacity and provide opportunities for additional community empowerment. Reputational leaders were difficult to identify and were not always the individuals who come forward readily or were outspoken in public meetings. They were identified based on previous community outreach. Issues related to trust were much more important in maintaining their ongoing participation and conflicts were more divisive. However, this aspect of the project was successful in attracting additional funding that allowed more resources and time to develop and sustain these relationships. The assessment of the existing infrastructure provides an overview of available resources, the political/social climate and the political financial support for health issues in the community. Community resources are defined as traditional capital and social capital. Examples of traditional capital include property and money. Social capital examples include the knowledge and skills of people, the availability of professional and leadership skills and abilities and/or the ability to gain access to needed skills (Goodman et al., 1998). Community social and traditional capital resources can be classified into three categories – primary assets, secondary assets, and potential assets (McKnight & Kretzmann, 1990):  Primary assets are resources that are located in the community and controlled by the residents.  Secondary assets are resources located in the community and controlled by external resources.  Potential assets are resources that are located and controlled outside of the community.

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The political/social climate of a community is defined by the community perception of health issues and the actions taken to alleviate or improve those conditions. The assessment of the political/social climate is crucial to illustrate the extent of community participation focused on the enhancement of community health planning. Political financial support can be defined by the percentage of the county or organization budget allocated toward public health issues. Budget assessment is necessary to understand the level of political assistance and subsidy devoted to improving community health and community health planning. Assessing the existing levels of community coordination provides an understanding of the combined effort of informal linkages among agencies and stakeholders within the community. Understanding community history and experiences is essential for the evaluation of the level of community collaboration. Historical collaboration among organizations may indicate future successful coordination efforts. Lack of coordination among community organizations and agencies limits community perspectives and provides narrow solutions to problems (Bolland & Wilson, 1994). Coordination is necessary to develop a structurally integrated community rather than having fragmented community functioning. Turfism and the preservation of organizational autonomy may also limit community coordination. Turfism can be defined as the defense of the territory or area of control by an organization. Organizations may feel reluctant to merge with coordinated activities to avoid any loss in their independence. We found that agencies need to be empowered and had to feel they retained their autonomy, but they also must recognize their interdependencies and develop a sense of trust in one another. This is obviously the core of developing a negotiated consensus; participants need to put aside their differences and agree to agree (even if they disagree). Critical to a negotiated consensus is initial receptivity to collaboration. Determining the level of local receptivity provides information on the degree of trust within a community, historical issues within the community, existing knowledge and awareness of health issues, and the sense of community and willingness of the community to engage and change. Determinants for the level of community trust are characterized by previous endeavors with external or alien organizations or systems. Historical positive/negative interactions may hinder or enhance the trust of the intended community. The awareness of important community changes and of past/ present community organizations and groups characterize the comprehension of historical community issues (Goodman et al., 1998). Community knowledge and awareness of health issues can be determined through the observation of community actions to improve or educate residents on health

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needs. The sense of community is characterized by the level of concern for community health issues and the willingness of the community to engage in planning efforts and make necessary changes as needed (Goodman et al., 1998). Finally, critical to negotiating consensus is developing mechanisms to bring people to the table and to engage them in collaborative efforts. Some kind of governing structure must be identified (Konrad, 1996) so that decisions can be made and clear differences resolved. Given the need to empower individuals and groups, this governing structure should not be overly bureaucratic or formally structured. This is especially critical when bringing disenfranchised groups to the table. While there is a need for organizational drivers (Shortell et al., 2002), the organizational unit which takes responsibility for arranging meetings should not take on the role of leader. Rather, the organizational driver should stand back and listen and allow community participants to determine their own governance structures. Groups and individuals need some kind of incentive for their participation – which may be the goal or objective of the project. When bringing consumers to the table, it has to be realized that they are taking time from their jobs and families while agency representatives are doing their job. If possible, some financial reimbursement may be necessary – especially for disenfranchised groups. Lastly, there needs to be on-going open channels of communication. With modern technologies, e-mail list serves are an excellent way to groups to communicate beyond the confines of meetings if that technology is available to everyone involved. Otherwise, frequent meetings with open participation and rules ensure democratic processes for decision-making are necessary. For example, one health department director noted that CHI ‘‘has provided meetings for the community to come to share their feelings on priorities they feel should be targeted for interventions.’’

CONCLUSION In summary, the CHI brought resources and expertise to each community. In some cases they provided leadership, in others they simply facilitated ongoing efforts by partnering with key agencies. In all four of the communities, the plan as articulated above was implemented and programs were funded. Stakeholders felt that CHI had facilitated coordination and helped set priorities. The majority felt that the model had produced a better system of community-based care. The major obstacle faced by the staff of CHI was to avoid being perceived as ‘‘Big Brother’’ and one of the latent functions of

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CHI was to improve the image of, and relations with, the regional health care system (whose entrance was generally viewed with mistrust). Only two participants in one county expressed views that CHI was ‘‘Big Brother’’ while most participants felt CHI had served as either a facilitator or a partner and had been responsive to local needs. Only two respondents felt that they had experienced some loss of autonomy or control with CHI, while most respondents felt CHI had allowed them to preserve their autonomy and control. There was some evidence of domain disputes – both within the county and with CHI. However, these domain disputes did not hinder coalition building efforts. In fact, it was commonly felt that CHI had played an instrumental role in helping to ‘‘create a dialogue between agencies and institutions that have never had that dialogue’’ (community health member). Over and over it was stressed that CHI has worked in conjunction with the community and that leadership has been participatory. While there were clearly initial disputes over funding priorities, the use of evaluation data and ongoing communication with staff at CHI enabled communities to negotiate a consensus so that they could develop community health programs and interventions. In order to improve population health and reduce health disparities communities must partner with different kinds of organizational drivers and researchers in order to develop community health initiatives. However, there has to be some agreement at the community level as to which community initiatives, programs, or services ought to be pursued. With diversity of population, health disparities, limited resources, and competing needs, agreement is unlikely; instead a negotiated consensus among key stakeholders (community advocates, agency leaders, service providers, and consumers) must be developed. A negotiated consensus takes into account differences and allows for some kind of resolution of these differences in order to achieve a given end. A negotiated consensus is necessary for the identification of common goals, prioritizing these goals, and either seeking funding or utilizing available funding for selected community initiatives. The framework developed in this chapter outlines the manner in which such a consensus can be negotiated, and which can guide researchers and other agents seeking to develop community-based initiatives in health care.

ACKNOWLEDGMENT An earlier version of this chapter was presented at the 2004 Society for the Study of Social Problems Meeting, August, San Francisco.

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