Social Work Health and Mental Health: Practice, Research and Programs 9781317788096, 9780789017123

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Social Work Health and Mental Health: Practice, Research and Programs

Sodal Work Health and Mental Health: Practice, Research and Programs has been co-published simultaneously as Sodal Work in Health Care, Volume 34, Numbers 1/2 and 3/4 2001 and Volume 35, Numbers 1/22002.

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SocialWork Health and Mental Health: Practice, Research and Prograßls Alun c. J ackson, PhD Steven P. Segal, PhD Editors Gary Rosenberg, PhD Andrew Weissman, PhD Series Editors Sodal Work Health and Mental Health: Practice, Research and Programs has been co-published simultaneously as Sodal Work in Health Care, Volume 34, Numbers 1/2 and 3/4 2001 and Volume 35, Numbers 1/22002.

First published by The Haworth Social Work Praetice Press, 10 Alice Street, Binghamton, NY 13904-1580 USA The Haworth Social Work Praetiee Press is an imprint of The Haworth Press, Ine., 10 Alice Street, Binghamton, NY 13904-1580 USA.

This edition published 2013 by Routledge 711 ThirdAvenue,NewYork,NY 10017 27 Church Road, Hove, East Sussex BN3 2FA Routledge is an imprint ofthe Taylor & Francis Group, an informa business

Sodal Work Health and Mental Health: Practice, Research and Programs has been co-published simultaneously as Sodal Work in Health Care, Volume 34, Numbers 1/2 and 3/4 2001 and Volume 35, Numbers 1/22002. © 2002 by The Haworth Press, Ine. All right~ reserved. No part of this work may he reprodueed or utiIized in any form or by any means, electronic or meehanical, including photoeopying, microfilm and reeording, or by any information storage and retrieval system, without permission in writing from the publisher.

The development, preparation, and publieation of this work has heen undertaken with great eare. However, the publisher, employees, editors, and agents of The Haworth Press and all imprints of The Haworth Press, Ine., including The Haworth MedieaI Press® and The PharrnaceutieaI Produets Press®, are not responsible for any errors eontained herein or for eonsequenees that may ensue from use of materials or information eontained in this work. Opinions expressed by the author(s) are not neeessarily those of The Haworth Press, Ine. Cover design by Thomas J. Mayshoek Jr.

Library of Congress Cataloging-in-Publication Data Social work health and mental heaIth: practice, research and p./"Ograms / Alun C. Jackson and Steven P. Segal, editors. p. cm. "Co-published simultaneously as Sodal Work in Health Care, volume 34, numbers 1/2, 3/4 2001 and vol. 35, nos. 1/2,2002." lncludes bibliographical references and index. ISBN 0-7890-1712-1 (hbk.: alk. paper) - ISBN 0-7890-1713-X (pbk: alk. paper) I. Medical social work. 2. Medical social work-Administration. 3. Social work administration. I. Jackson, Alun C. 11. Segal, Steven P., 1943- III. Sodal work in health care series. RA965 .S545 2(Xl2 362. l-dc2 I 2002017174

ABOUT THE EDITORS Alun C. Jackson, PhD, holds the Chair of Social Work at the University of Melbourne. In 1997 he was appointed Director of the Royal Children's Hospital/University ofMelbourne Social Work Practice Research Unit, the first such appointment made in a university teaching hospital in Australia. He has been a research consultant to the Royal Melbourne Hospital Social Work Department and is a member of the Research Committee of the Royal Women's Hospital. Professor Jackson is currently Director of the Problem Gambling Research Program at the University and has undertaken extensive research on the social impacts of gambling. At the hospital, his research program focuses on the impacts on families of chronic illness in children; the conceptualizing and management of risk, especially as it relates to infants; and continuity-of-care issues including discharge planning and case management. He was Chair of the Second International Conference on Social Work in Health and Mental Health (Meibourne, Australia, 1998). Steven P. Segal, PhD, is Professor in the Schools of Social Welfare and Public Health at the University of California, Berkeley. He is also Director ofthe Mental Health and Social Welfare Research Group (School of Social Welfare ), Director of the Center for Self Help Research (Public Health Institute), and Co-Director and Co-Principal Investigator of the NIMH/NRSA Pre/post-Doctoral Research Training Program in Financing and Serviee Delivery in Mental Health (School of Public Health and School of Social Welfare). Professor Segal has been the recipient of senior Fulbright research and lecture awards in Australia, the United Kingdom, and Italy. He has worked on mental health serviees research related to long-term community and residential care, civil commitment, the assessment of dangerousness and quality of psychiatrie emergency care in general hospital psychiatrie emergency rooms, and consumer roles in mental health services provision.

Social W ork Health and Mental Health: Practice, Research and Programs CONTENTS PART I SECTION 1: THE CONTENT OF PRACTICE Introduction: Parts land 11 Alun C. lackson, PhD

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GLOBALIZATION AND ITS IMPACT ON HEALTH AND MENTAL HEALTH POLICY Globalisation and Social Policy lohn Langmore, MA Health Care and Social Work Education in aChanging World Ronald A. Feldman, PhD

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THE RESTRUCTURING OF HEALTH AND MENTAL HEALTH SERVICE SYSTEMS AND ITS CONSEQUENCES The Buck Stops Where? Contracting, Service Delivery and the Challenge to Provide Responsive Services Robyn Munford, PhD, MSW lackie Sanders, MA The Business Model and Social Work: A Conundrum for Social Work Practice P. Reg Orovwuje

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Social Work and Health Restructuring in Canada and Finland Tuula Heinonen, DPhil, MSW Irma MacKay, MSW Anna Metteri, MSocSc Ma(ia-Liisa Pajula, BSW Delivering Health Care Services in the Community: A Multidisciplinary Perspective Ron Levin, MSW, RSW Margot Herbert, MSW, RSW Health Problems and Long-Term Unemployment Anneli Pohjola, PhD

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SECTION 2: RESEARCH USING STANDARDIZED INSTRUMENTS IN PRACTICE RESEARCH Use of Standardized Measures in Agency Based Research and Practi ce Barbara Berkman, DSW Peter Maramaldi, CSW, MPH Construction of aGIobaI Assessment Scale of Family Function, Using a Questionnaire Mikaela Starke, (PhD student) Elisabeth Svensson, PhD

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RESEARCH TOOLS FOR DESCRIBING HEALTH SOCIAL WORK PRACTICE AND CLIENT CHARACTERISTICS Development of the Workload Analysis Scale (WAS) for the Assessment and Rehabilitation Services of Ballarat Health Services Michael F. Gathercole, MBA Lesley R. DeMello, PhD

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Discharge Planning for Complex Paediatric Cases Alun C. Jackson, PhD Belinda Johnson, BSW (Hons) Maree O'Toole, BSW GaU Auslander, PhD The Development of an Australian National Classification System for Social Work Practice in Health Care Rosalie Packet!, PhD, BSW Bruce Lord, MSW, BSW (Hons) Jane Dennis, BSW A Classification System of Social Problems: Concepts and Influence on GPs' Registration of Problems Denise A. Deliege, PhD

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PART 11 SECTION 3: GENERIC PRACTICE ISSUES Community Care in Practice: Social Work in Primary Health Care Mark Lymbery, MPhil Andy Millward, MA A Body-Mind-Spirit Model in Health: An Eastem Approach Cecilia Chan, PhD, RSW Petula Sik Ying Ho, PhD, RSW Esther Chow, MSW, RSW Resilient Children: What They Tell U s About Coping with Maltreatment Darla L. Henry, PhD, MSW Keeping It in the Family: Caregiving in Australian-Greek Families Carol A. Morse, PhD Voula Messimeri-Kianidis, BSW

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Retooling Social Work Practice for High Volume, Short Stay J oanne Sulman, MSW, RSW Diane Savage, MSW, RSW Suesan Way, DipSS, RSSW It's lust Different in the Country: Postnatal Depression and Group Therapy in a Rural Setting Barbara Lane, MA Louise M. Roufeil Susan Williams Rosemm'y Tweedie

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PART III SECTION 1: HEALTH AND MEDICAL CARE Introduction: Part III Steven P. Segal, PhD

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ENGAGING IN A PUBLIC HEALTH PROGRAM WITH POPULATIONS THAT ARE THE TRADITIONAL TARGETS OF SOCIAL WORK INTERVENTION Implementing a Community Intervention Program for Health Promotion Barbara Brenner, DrPH, MSW, ACSW

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RESOURCE DEVELOPMENT TO ENABLE THE USE OF MEDICAL TREATMENT Social Work Practice in the Donation of Human Tissue for Transplantation: Utilising Social Work Values and Competencies to Achieve Effective Outcomes for Transplant Patients and Donor Families Lyndall Forbe-Smith, BSW, MSW Mary Haire, MA, MSSc, CQSW Mary Doneley, BSW

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SUPPORTING THE PATIENT IN COPING WITH PROBLEMS A Follow-Up Study ofWomen with Cancer: Their Psychosocial Well-Being and Close Relationships Karen Kayser, PhD, MSW Mary Sormanti, PhD, MSW Evaluating an Activity Intervention with Hemodialysis Patients in Israel GaU K. Auslander, DSW, MPH Adina Buchs, MSW Social Support, Medication Compliance and HIV/AIDS Usa E. Cox, PhD, LCSW, MSW

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407

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ADDRESSING THE ISSUE OF LONG TERM CA RE The Mental Health Status and Long Term Care Needs of the Chinese Elderly in Hong Kong Raymond Ngan, PhD Alex Kwan, PhD

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SECTION 2: MULTICULTURAL PRACTICE IMMIGRA TION Stage-Specific and Culture-Specific Coping Strategies Used by Mainland Chinese Immigrants During Resettlement in Hong Kong: A Qualitative Analysis Daniel Fu Keung Wong, PhD Impact of Immigration on Health and Human Services: Florida's Experience C. Aaron McNeece, PhD Mary Kay Falconer, PhD David Springer, PhD

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LANGUAGE Cross Cultural Research in Palliative Care Annette Field, BA, BSW Paul Maher, BA, BSW DavidWebb

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SECTION 3: MENTAL HEALTH THE WORKINGS OF THE SYSTEM AND SYSTEM CHANGE Mental Health System Reform: A Multi Country Comparison Wes Shera, PhD Uri Aviram, PhD Bill Healy, MA Shula Ramon, PhD

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EV ALUA TING SYSTEM FIT WITH NEED Mental Health Service Utilization Among the Arabs in Israel Alean Al-Krenawi, PhD Involuntary Return to a Psychiatric Emergency Service Within Twelve Months Steven P. Segal, PhD Phillip D. Akutsu, PhD Margaret A. Watson, DSW Conjoint Multi-Disciplinary Assessment in a Community Mental Health Team: The Impact on the Social Work Role Fraser MitchelI, MA, MSc, DipSW Douglas A. Patience, MRCPsych

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The Changing Role of the Social Worker in the Mental Health System Uri Aviram, PhD

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Index

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PART I SECTION 1: THE CONTENT OF PRACTICE

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Introduction: Parts land 11 Alun C. Jackson, PhD

This volume provides an opportunity to present a collection based on papers presented at the Second International Conference on Social Work in Health and Mental Health held in Melbourne, Australia in January 1998. This very successful Conference, with over 700 participants from 30 count ries, offering 450 presentations, built on the firm foundation set by the First International Conference held at the Hebrew University of Jerusalem, Israel, under the leadership of Professor Uri A viram and Professor Gail Auslander. We have diverged from the practice of our predecessors who edited the selection from the First Conference, who divided the papers into a health-oriented volume (Auslander, 1997) and amental health-oriented volume (Aviram, 1997). We have chosen to present the papers from a different standpoint, namely in a form that integrates health and mental health concerns, and divides the collection into a concentration on social policy, research, and generic practice, and a concentration on practice fields. This way of organising the material reflects an increasing concern with the integration of health and mental health issues within holistic educational approaches to practice and the siting of such practice, in 'generic' settings such as community-based agencies that reflect this holistic orientation. Just as the boundary between health and mental heaIth social work becomes blurred in the practice settings detailed in this collection, that practice has become more demanding of specialised skills within practice fields and requiring of more intense education within the fields of practice. For this reason, the parts making up this [Haworth eo-indexing entry note]: "Introduction: Parts I and II." Jaekson, Alun C. Co-published simultaneously in Social Work in lIealth Care (The Haworth Social Work Praetiee Press, an imprint ofThe Haworth Press. Ine.) Vol. 34, No. 1/2,2001, pp. 3-10; and: Social Work lIealth and Mentaillealth: Practice, Research and Programs(ed: Alun C. Jaekson, and Steven P. Segal) The Haworth Social Work Practice Press, an imprint ofThe Haworth Press, Ine., 2002, pp. 3-10. Single or multiple eopies ofthis article are available for a fee from The Haworth Doeument Delivery Service [1-800-HAWORTH, 9:00 a.m. - 5:00 p.m. (EST). E-mail address: [email protected]].

© 2001 by The Haworth Press, Ine. All rights reserved.

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collection should be seen as companions rather than as distinct and unrelated coHections of papers. THE POLICY CONTEXT OF PRACTICE

The first section of this volume is concemed with the policy context of practice. Using his position as Director of Social Development at the United Nations, and drawing on his experience as a social worker, economist, and member of Parliament, Langmore identifies globalisation as a major social and economic force which needs to be considered as govemments shape the policy and value context in which health and mental health social practice will occur. He challenges the notion that public sec tor spending cuts are a necessary corollary of globalisation. He recognises, however, that govemments may weH be tempted to demonstrate their 'worthiness' as investment destinations by showing good financial management in terms of reducing public health and welfare expenditure, having assumed that they can absorb the domestic political cost of marginalising public health and welfare users. Starting from a similar position to Langmore's, Feldman, in the following paper, highlights achanging macro political context created by globalisation and the increasing corporatising of health and welfare. U sing managed care as an example, he challenges social work educators to develop effective responses to these changes in the context of practice. Not only is the challenge thrown down, Feldman makes a number of creative recommendations for the introduction of relevant health and mental health content to social work curricula. Picking up the theme of govemment structuring of health and social services, Munford and Sanders, drawing on research conducted in New Zealand, identify a number of consequences which follow from changes in govemment funding practices. The paper suggests that the introduction of market mechanisms such as contracting by govemment for service provision by community sector health and welfare organisations, may lead to distortions in practice such as agencies responding to less weil informed definitions, by service purchasers, of client need. While few would doubt the legitimacy of publicly funded agencies demonstrating high levels of accountability, the paper notes the complexities of tying funding to outcomes, rather than the older methods of relating funding to service inputs or outputs. It argues that there are many factors outside the control of the agency in determining outcomes, and that an unintended consequence of this shift of focus, is a

lntroduction: Parts land II

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limiting and fragmenting of services, working against an holistic orientation to practice. Orovwuje, also writing from the New Zealand experience, takes up the issue of what happens in a major mental health service when government restructuring ofhealth and mental services is driven by an economic liberalism, a 'New Right' ideology, that is seen to be inimical to the effective delivery of social work services to marginalised segments of the population. These papers provide an interesting perspective on the role of government and the adoption of a corporate approach to service provision in a society which has a tradition of a highly interventionist central government and high levels of subsidisation of health and welfare services. The paper by Heinonen, MacKay, Metteri and Pajula comparing the effects of restructuring of the health systems in Finland and Canada, and the paper by Levin and Herbert on community-based health care service delivery in Canada, further develop the theme of how health policy changes can seriously affect the context of practice. Heinonen et al. suggest that in Finland in particular, social workers are increasingly having to demonstrate their effectiveness in, for example, rapid assessment and effective discharge planning in hospitals. In both Canada and Finland, they point to the need for social workers to be pro-active in shaping the policy and organisational contexts of their practice. Levin and Herbert identify the shift from acute care-based social work service delivery to community-based delivery as a major consequence of health reform in Canada, and ask whether social workers are equipped for this change. From their analysis of attitudes towards community practice and their perception of their preparedness for such practice, they are led to question social workers' competence in this arena of practice and, as Feldman did, they throw out a timely challenge to educators to examine whether they are adequately preparing social work practitioners to work from a truly ecological perspective. This section concludes with Pohjola's discussion ofthe health effects of long-term unemployment, following her analysis of a three-year program targeting the long-term unemployed in the north of Finland. She identifies a range of intervention options, including the need to provide access for this population to rehabilitation services. This option clearly requires a major re-think on the part of government about what the relationship is between acute and chronic health problems and employment potential, and what an interventionist government must do in order to minimise the social exclusion of this group.

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RESEARCH This section offers a number of papers focusing on practice research issues. The first paper, by Berkman and Maramaldi, was given by Professor Berkman in a section of the Second International Conference dedicated to Helen Rehr, Professor of Community Medicine Emerita, Mount Sinai School of Medicine, in recognition of her contribution to the development of practice-based research in health social work. We are very pleased to reaffirm this dedication in selecting this paper for publication. Berkman and Maramaldi suggest that research on practice has gone through a number of stages in terms of the focus of assessment, from a concern with the structure of practice, followed by a focus on assessment of process, to a focus on outcome assessment. Noting the need to clearly define health outcomes, Berkman suggests that social work practitioners, researching the effects of their interventions, have been reluctant to embrace some particularly useful ways of assessing health-related quality of life. To address this deficit, she suggests the SF-36+ as an example of a reliable and valid standardised measure that could be of considerable value in outcome measurement. Starke and Svensson, from the International Paediatric Growth Research Centre in Sweden, take up this issue of the use of standardised instruments in health and mental health social work research and practice with a detailed discussion of the construction of aglobai assessment scale of family functioning. They explore the properties of the Family Adaptability and Cohesion Evaluation Scale (FACES III), which posits a relationship between cohesion, adaptability and family functioning, factors crucial to the quality of adjustment by families to circumstances such as the chronic illness of a family member. The paper concludes with a useful argument about the methodological issues involved in constructing a global score form multi-item scales. Gathercole and DeMello shift attention from the practitioner researcher to the manager researcher, with their description of the creation of the Workload Analysis Scale (WAS). The Scale was designed to help assess the likely workload that a given client would generate for a social worker working in an assessment and rehabilitation service. As a research and management tool, the WAS could be used to allocate cases fairly among work teams, with respect to work intensity; flag cases requiring extensive input; track changes in workload and as an educational tool for making better known the nature of case complexity and requisite practice resources needed for effective intervention.

Introduction: Parts land II

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In the paper by, Jackson, Johnson, O'Toole and Auslander take up the theme of case complexity introduced by Gathercole and DeMello. They tackle a fundamental question of interest to service funders, managers and practitioners alike, that of 'What do social workers actually do?' It is not always easy to obtain answers to this question, as much health and mental health social work, particularly in acute care settings, is conducted in private, necessitating the use of worker self-reports, c1ient satisfaction measures or a range of surrogate measures of what the interventions consisted of. This paper explores in some detail the nature of discharge planning practice in a paediatric setting. In so doing, it seeks to also identify the characteristics of 'complex' cases, and examines the relationship between case complexity and amount of intervention effort required. One noteworthy aspect of this paper is that it reports research undertaken by academic researchers located in a hospital-based social work practice research unit working collaboratively with members of the social work team. Pockett, Lord and Dennis develop the issue of our need to describe practice, and provide a history of the development of a social work c1assification system for use in health settings. An exercise of this type is very challenging for social work, in even attempting to name practices that are presumed to have shared meaning across a variety of specialisalions and practice settings. In addition, social workers have often not responded weil to systems of c1assification of practice that are seen to be reductionist and not reflective of the complexities of their c1ients' lives. It is important that this exercise is presented as a useful tool for promoting social work in multidisciplinary work settings, for enhancing accountability and for ultimately improving services for c1ients. In a paper that spans the boundaries of research and practice, Deliege describes a range of approaches to the c1assification of social problems. Reporting on a World Health organisation study conducted in Belgium, she notes the usefulness of a c1ient problem c1assification scheme that could be used by both General Practitioners and by social workers. This c1assification scheme, incorporating both mental heaIth and physical health aspects of functioning and dysfunction, she argues, should allow some degree of confidence that the GPs and social workers are communicating the same information, as this information sterns from mutually acceptable definitions of problem type. The paper offers a c1ear challenge to social workers who may be concerned that their c1ients' problems are so complex that they defy c1assification just as the previous paper by Pockett, Lord and Dennis challenges those who think that their interventions are too complex to describe.

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GENERIC PRACTICE ISSVES The paper by Lymbery and Millward, which opens Part 11, picks up and extends Deliege's concern with communication between GPs and social workers by reporting on an innovative project placing social workers in primary care services in Nottingham, England. They note that the passage of the National Health and Community Care Act in 1990 provided a legislative mandate to experiment with ways of better integrating the historically separate health services and social services. The co-location of social workers with GPs was shown to result in better services, more referrals, better recruitment of ethnic minority clients and better co-ordination and collaboration. Very importantly, inter-professional collaboration such as described by these authors resulted in, they believe, better professional social work practice, rather than, as is often feared, a weakening of social work's particular contribution. Capturing the essence of an immensely popular workshop offered at the Second International Conference, Chan, Ho and Chow offer some lessons from Eastern approaches to health and mental health in their discussion of the Body-Mind-Spirit model. The model is identified as the epitome of systemic or cybernetic approaches to social work practice. It offers, in the place of a Western body-mind duality, a way of reconceptualising health and illness as being the result of the interplay among the body, mind and spirit components of an individual, and their environment. They illustrate the usefulness of adding intervention skills such as qi-gong and physical exercise to the social worker's repertoire, by reference to clinical practice with patients and their families experiencing diverse conditions including cancer, stroke, systemic lupus erythematosus, rheumatoid arthritis, diabetes and bereavement. Henry's paper, areport of a research study on resilience in abused children and adolescents, has some profound implications for practice. This exploratory study, carried out with a small group of adolescents aged 13 to 20, in an independent living program in Pennsylvania, sought to gauge what the perceptions were of adolescents regarding safety in their horne environments; what strategies they engaged in to cope with being in unsafe situations, and what the outcomes were for them. The importance of this study lies not only in its specific findings about how these adolescents coped with their situations but in the fact that it represents a growing and very positive trend to base social work practice and research on concepts of resiliency and strength rather than on a deficit-based model concerned with identifying and classifying de-

Introduction: Parts land II

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grees of dysfunction. The paper suggest that there is much potential in structuring practice around an appreciation of both risk and resiliency factors. Morse and Messimeri-Kianidis, in their study of care-giving in Australian-Greek families, identify a range of risk factors for the carers. This paper is a timely reminder that the burden of care for chronically ill relatives falls disproportionately on women, who are placed at risk for compromised physical and mental health by their care-giving. One particularly important aspect of caring in an ethnic community that they identify is the assumption that ethnie communities provide high levels ofboth instrumental and expressive support for their community members, thus ameliorating the burden of care. This was found to not be the ease, with few of the earers in regular eontaet with ethnic community services. With governments inereasingly reliant on family-based care, and with a widely held belief that ethnic communities 'look after their own,' the authors have identified a situation which has the potential to stretch government and ethnic eommunity resources to the limit, as these carers themselves succumb to the burden of care and become care recipients themselves. Sulman, Savage and Way, from theirexperienee at Mount Sinai Hospital, Toronto, return to a number of issues introduced in previous papers, and examine the impact of the trend towards high volume, short stay in acute care environments on social work practice. They identify a range of adaptive strategies for social work to be able to provide relevant services in the new corporatised managed care environment, providing a useful complement to Feldman's suggestions for educational strategies to meet the same objectives. These include the creation ofkey roles, that are both valued and visible, on the health care team and the use of pre-admission high risk screening methods, and integration of these with discharge planning praetice. They address an issue that is often neglected in discussions of practice, that of recording, and note some particularly useful strategies for recording high volume short stay cases. Other strategies identified, and diseussed in the context of reconstruetive orthopaedics, high-risk foetal assessment and thoraeic oncology, are the development of solution-focused interventions and the development of community partnerships. In the final paper in this section, Lane, Roufeil, Williams and Tweedie report on their experience of introducing group therapy-based postnatal depression treatment into a rural area in Australia. They report that the program resulted in a significant lowering or absence of depressive episodes following treatment, but that there were many lessons to

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be learned about the introduction of an urban-developed treatment model into a rural setting. Differences occurred in the group formation process, in the operation of the group and in the attitudes of the participants. One noteworthy factor was the need for the practitioners to become sensitive to the cultural mores of the rural environment, with its different understanding of what is private and public business, and the implications of this for disclosure in the group. This collection of papers provides c1ear evidence that health and mental health social work is striving to not only hold its ground in the face of numerous challenges to effective practice, but that it is capable of developing strong, innovative programs in acute care settings and in community-based agencies. This collection presents papers from Australia, Belgium, Canada, Finland, Hong Kong, New Zealand, Sweden, the Uni ted Kingdom, and the United States and is testament to the fact that this area of social work practice has truly come of age in developing an international frame of reference and an ability to learn from our diversity. REFERENCES Auslander, q. (Editor) (1997) International Perspectives on Social Work in Health Care: Past, Present and Future, NY: The Haworth Press, Inc Aviram, U. (Editor) (1997) Social Work in Mental Health: Trends and Issues, NY: The Haworth Press, Inc

GLOBALIZATION AND ITS IMPACT ON HEALTH AND MENTAL HEALTH POLICY Globalisation and Social Policy lohn Langmore, MA

SUMMARY. This paper discusses six major themes:

• that economic and social issues are closely interdependent and that the appropriate stance is to work on both together, simultaneously; • that though the threats from globaIisation have been exaggerated, there can be substantial costs as weIl as considerable benefits; • that constraints on national policy are significant but are less severe than is commonly considered; • that the vitality-the vigour-of national and international political processes must be increased to cope effectively with the changes which are underway; • that the private sec tor, unions and civil society have crucial roles in the provision 01' services and in advocating socially responsible values, standards and poIicies; • and that one 01' the most effective means 01' addressing the erosion of national autonomy from globalisation is for countries to cooperate in

John Langmore is Director, Division tor Social Policy and Development, United Nations, Department of Economic and Social Affairs, New York, NY (E-mail:[email protected]). This article is from an address at the Columbia University School of Social Work, 13 June 1998. [Haworth co-indexing entry note]: "Globalisation and Social Policy:' Langmore, John. Co-published simultaneously in Social Work in Health Care (The Haworth Social Work Practice Press, an imprint of The Haworth Press, Inc.) Vol. 34, No. 1/2,2001, pp. 11-29; and: Social Work Health and M"lltal Healrh: Practice, Research alld Programs (ed: Alun C. Jackson, and Steven P. Segal) The Haworth Social Work Practice Press, an imprint of The Haworth Press, Inc., 2002, pp. 11-29. Single or multiple copies of this article are available for a fee from The Haworth Document Delivery Service [1-800-HAWORTH, 9:00 a.llI. - 5:00 p.m. (EST). E-mail address:[email protected]].

© 2001 by The Haworth Press, Inc. All rights reserved.

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setting and implementing shared objectives and international standards and establishing more global public goods. {Artide copies available for a fee from The Haworth Document Delivery Service: 1-800-HAWORTH. E-mail address: Welillte: © 2001 by The Haworth Press, lne. All fights reserved.]

KEYWORDS. Globalization, social responsibility, United Nations, inovative social policy

1. THE ISSVE Since beginning work at the United Nations just over a year ago, I have become increasingly aware of the growing concern about the implications of global integration for national social policy. The question is: To what extent does growing global integration constrain the capacity of nations, our governments and community organizations to ensure that high quality services are available for citizens? This issue has become the focus of the debate about the affordability of human services, and so subsurnes the question of the capacity of countries to raise adequate revenue to pay for services. There are six major themes running through these remarks: • that economic and social issues are closely interdependent and that the appropriate stance is to work on both together simultaneously; • that though the threats from globalisation have been exaggerated; there can be substantial costs as weIl as considerable benefits; • that constraints on national policy are significant but are less severe than is commonly considered; • that the vitality-the vigour-of national and international political processes must be increased to cope effectively with the changes wh ich are underway; • that the private sector, unions and civil society have crucial roles in the provision of services and in advocating socially responsible values, standards and policies; • and that one of the most effective means of addressing the erosion of national autonomy from globalisation is for countries to cooperate in setting and implementing shared objectives and international standards and establishing more global public goods.

lohn Langmore

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These are big issues, reminiscent of my favourite political story. It relates to a speech writer who worked for a senator in the US during the Johnson years. The senator never used to give the speech writer any feedback, either about the content of the speeches or about their reception. So the speech writer became disillusioned and decided to leave, but before he left he thought he would get his own back. So on his final day the senator walked through the outer office, picked up the stack of cards on which the speech was written, as usual didn't bother to read them as he was driven to the place where he was to speak, and when the time came stood up and read out: 'Ladies and gentlemen, We are involved in a terrible war in Vietnam, our boys are being killed, great destruction is being caused and there seems no end to the conflict but I' m going to tell you how we can.' Next card: 'Racial discrimination is embedded in this country. Despite progress racial contlict seems as intense as ever. There have been riots in Chicago. Our schools are still divided. Discrimination in employment and housing is still endemic. We must end this inhumanity and I'm going to tell you how.' Next card: 'Inequality in our country is wide and growing. The rieh are getting richer; the poor poorer. Many live in luxury while others are homeless and hungry. We must end this division and I'm going to tell you how.' Next card: 'Good luck, Senator. You're on your own now.'

2.1 GLOBAL1SAT10N No-one can doubt that the extent of global integration has been growing rapidly during the last couple of decades. International trade has been increasing at twice the rate of global income. Since the liberalization of financial markets there has been explosive growth of international financial transactions, from less than A $30 billion a day 20 years aga to about A$1800 billion a day in 1995 (BIS, 1996). The extent of international travel and communieation has multiplied. Our TV screens daily give evidence of growing global cultural homogenization. And prices of many international transactions are a minuscule proportion of what they were. For example, the cost of a three minute phone call between London and New York in 1990 prices has fallen from A$350 in 1930 to A$5 in 1990 and can be made for much less than two dollars now (IMF, 1997). So technologie al change has been a powerful force for globalisation, but so too has policy change. Governments have chosen to liberalize

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trade and financial markets. A necessary condition for this growth of global integration has been the reduction of tariffs and the deregulation of financial markets. Governments have chosen, too, to limit the extent of international human migration. Government choice has therefore been the principal influence on the pace and direction of international integration, not technological determinism. Once the opportunities were created, corporations seized them, but a necessary, determining factor was government decision. Recognition ofthis is crucially important because it indicates one aspect of the response, which is that governments and civil society have greater influence than they often recognize.

2.2 BENEFITS OF GLOBALISATION There are both major economic and social benefits and severe costs from globalisation. The most obvious benefit is that integration increases economic dynamism as market opportunities widen. Intensified competition can motivate increased efficiency, leading to faster growth of incomes in many countries. This contributes to improved economic security, income and freedom for those in employment. The opportun ities and range of choices for those who benefit are widened. Inflationary pressure is reduced in those countries where international competition increases, because the market power of large firms in small markets to set prices is eroded-which is likely to be one of the principal reasons for the relatively low rates of inflation in all high income countries at present. The benefits are not limited only to already rich countries: One ofthe principal benefits of international financial deregulation is said to be the increased ease of international investment, inc1uding in most of the dozen most promising emerging markets. The biggest recipient of foreign funds, China, does not fit this pattern, though, because it has not liberalized. Growing economic integration increases the growth rates of those countries with sufficiently strong and diverse economies to rapidly increase their exports and to attract investment. With faster economic growth, government revenue also increases faster. In fact, contrary to widespread expectations, in OECO countries at least there has so far been no fall in the proportion of national income collected as current receipts. In fact current receipts have continued to creep up, from an average of 34 per cent of GOP in 1980 to an estimated 37.7 per cent in 1997 (OECO, 1997, pA32).

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This one figure causes doubt about the alarmist talk of the destructive consequences of globalisation for social policy. It suggests that so far at least, the fear of tax competition driving down revenue collecting capacity and so causing pressure for cuts in community services, may principally be scare mongering. The increases in revenue in fact provide a basis for improvements in the extent and quality of community services-if governments decide to use the revenue in that way.

2.3 COSTS OF GLOBALISATION However there are also high and widespread costs. Growing interdependence reduces the policy autonomy of all countries which have liberalized their financial systems, for their vulnerability to financial turbulence has increased. This has caused these governments to become more cautious, as they have attempted to appease the financial markets and the powerful credit rating agencies (Eatwell, 1997). They have kept monetary policy tighter than would otherwise have happened, lifting interest rates and retarding both private and public investment and recurrent outlays, so constraining economic development and employment growth. The high real interest rates for most of the time since 1981 have inhibited economies everywhere, not least in developing countries and particularly those which are deeply indebted. 1 Budgetary policy has also commonly been kept more restrictive than it would otherwise have been, constraining improvements in human services which are desperately needed in both high and low income countries. Employment in human services is therefore also retarded. Tight fiscal policy commonly involves cuts to human services, so schools and hospitals are c\osed, the quality of service delivery reduced by increasing c\ass sizes, reducing staffing levels in hospitals, eroding support staff and services and so on-changes with which we are all familiar. You will note that in this integrated world these policies of cutting public outlays and high interest rates are commonly adopted because this is attractive to the international financial markets, not because this is necessarily the most appropriate reflection of national economic and social priorities. I attended the annual meeting of the Emerging Markets' Trader's Association, wh ich was held in New York City. I leamt much, but one feature was completely unsurprising: Those countries which maintained tough monetary and fiscal policies were generally regarded as the best securities trading prospects. 2

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The enormity of the economic and social costs of financial turbulence has been vividly illustrated recently in South East Asia and Korea. Huge losses of potential income and of employment are underway in those countries, and these are being exacerbated by the contractionary adjustment policies imposed on them as the conditions for IMF emergency lending. Unemployment and poverty are increasing dramatically, services and investment are being slashed. Massive social disruption is occurring: Several million people will lose their jobs and a million foreign workers are expected to be required to leave Malaysia this year alone. Another type of cost is that industries in which tariff and other protection is reduced sometimes dec1ine. In those industries which contract, employees lose their jobs, unemployment increases, families are disrupted, youth are alienated and communities decay. More generally globalisation tends to intensify the marginalisation of those countries without the capacity to increase exports quickly or to attract investment. So global inequity is increasing-both within and between countries. Poverty in rapidly growing countries such as China and Indonesia may well have been falling, but globally the absolute number of people living in poverty is sti 11 increasing, while the wealth of most successful beneficiaries is multiplying. Exclusion, of countries, communities and individuals is being further entrenched. 3 Globalisation is being used by market fundamentalists as the rationale for asserting the inevitability of cuts in social and labour standards. The argument is that the welfare state is so costly that it undermines national competitiveness. In fact, however, such alleged economic determini sm is no more than ideological assertion. Competitiveness is determined by productivity. The productivity of advanced economies with developed welfare states is higher than in even the rapidly growing middle income countries. Growth depends on many factors, of which tax levels are only one. The Economist recently reviewed a book by two of 'America's most noted social critics' -Francis Fox Piven and Richard Cloward-which conc1udes that the 'slogan of globalisation ... is a cover under which a politically mobilized business c1ass has driven down wages and benefits, weakened unions and civil-rights groups, and undermined government help for the poor' (The Economist Review, 13 December 97, p7). Of course there is a constant need to keep social and labour policies under review, to aim for cost effectiveness and to change policies which

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simply entrench inequitable privilege. In many countries there are ineffective or mistargetted programmes which should be reviewed and changed. But this is an entirely different point to that about the claimed inevitability of dismantling large chunks of community services. Economic pressures and ideological assertion must be disentangled. It is essential to be as rigorous, too, about the benefits of social programmes as narrow economists say they are about the costs. As the Commissioner of the European Union for Social Affairs and Employment writes we should 'not take the social order for granted. The social order-the laws, practices and institutions of life-provide constant support and vigilant protection for all of uso ... It is built on many decades of political, economic and social investment. If we do not maintain our systems, the thread ofthe contract may break. Ifwe want civilized societies, we must invest in our societies. ' Globalisation has human costs, for it is a major cause of personal and social disruption and so of insecurity. This issue has been vividly described by the Melbourne political scientist Graham Little, who has written that: The whole world feels threatened by something called globalisation, to which the common response seems to be: abandon any belief in attachment. Economies and governments [he writes] have been jettisoning familiarity, trust, loyalty, predictability, security of tenure, etc., pinning their hopes on anxiety and competitiveness in a world where everyone else is doing the same. (Little, 1997, P 15) Many governments and commentators have been unconcerned about the human cost of repeated policy change, the consequences of wh ich we all have had to deal with. During the eighties in particular there was a common tendency amongst economic policy makers to neglect these costs. Leaders mistook 'self-inflicted social wounds for economic realism' (Little op cit., quoting Marris). These market fundamentalists neglected the human and social destruction of their policies. We cannot simply passively accept the assertion that social destruction is an automatic result of economic policy, nor that particular patterns of policy are necessary. Effective social analysis and prescription requires a rigorous understanding of economic constraints and the imaginative capacity to formulate feasible alternatives. This certainly does not me an acquiescence to the constraints perceived by some eco-

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nomic policy makers. Rather it involves knowing enough to be able to argue for credible alternatives.

3.1 VISION AND GOALS During the last decade and a half the dominant global discourse has been about freeing markets and the retreat of the state rather than about human weIl being. The central aim has been liberalizing markets and privatizing enterprise rather than human weIl being. Means have become ends-freeing the market has become an end in itself rather than a means to an end. Deficit reduction-the financial bottom line-has became the goal of government, rather than the human goals of security, freedom, justice and the opportunity for a fulfilling and enlivening life for all. The common good has been neglected. Some free marketeers have become so obsessed with their perspective that they say that as many decisions as possible should be transferred from the political process to the market, giving the market greater authority as the arbiter of public policy than the electorate. This is a recipe for entrenching the power of the already powerful and for neglecting the interests of the majority-in short for perpetually increasing inequity. One effect of the dominance of this market discourse has been to freeze out the proper functions of politics, wh ich are the articulation of interests by different groups and the reconciling of differences within economic and political constraints. Most groups in the community feel that their interests are marginalised. This is one of the principal reasons for the growth of political alienation. 'Once we abandon politics for economics, we abandon the capacity to imagine new solutions,' writes James Walter in his fine book Tunnel Vision (1996). PoIl sters repeatedly report that, when respondents are asked what they want governments to aim for, the most frequent replies are growth of employment, improvements in health services and education and care for the environment. How do we move to political situations in which the preferences of the electorate rather than those of international financial markets are the dominant influence in wh at are supposed to be representative democracies? A necessary part ofthe answer is the articulation of a compelling vision. During the nineties there have been hopeful signs of the emergence of such avision, and that it has political momentum.

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3.2 THE WORLD SUMMIT FOR SOCIAL DEVELOPMENT For example, a major advance was made at the World Summit for Social Development convened by the UN in Copenhagen in March 1995. Just the holding of this meeting was an expression of dissatisfaction with existing economic models and of the importance of adopting a wider and more balanced political, economic, social and environmental focus for national and international policies. The Social Summit was attended by 117 heads of state and government, more than any other international meeting which had ever been held up to that time. The ultimate goals adopted at the Social Summit were the eradicatiori ofpoverty, the achievement of full employment and the fostering of secure, stable and just societies. What audacity! These goals were expressed and expanded through ten commitments in the Summit Dec1aration which inc1uded: • creating an economic, political, social, cultural and legal environment that will enable people to achieve social development; • eradicating absolute poverty in the world through decisive national actions and international cooperation by a target date to be set by each country; • promoting the goal of full employment as a basic policy goal; • promoting social integration based on the enhancement and protection of all human rights; • achieving equity between women and men; • attaining universal and equitable access to education and primary health care; and • increasing resources al10cated to social development. The five chapters of the Programme of Action describe a detailed strategy for applying those commitments. These are summarized in a note following this paper,4 and full copies are available from the UN's Division for Social Policy and Development in New York. These are extraordinarily ambitious goals and programmes and yet they were adopted by the largest meeting of national leaders ever held. Just the holding of the Social Summit was a triumph. We should have been dancing in the streets! For it was the c1earest and most authoritative statement in the last two decades that priorities are changing and that social goals should be central and have great weight. The Summit Dec1aration was the start of aglobai campaign to end desperate poverty, a campaign equivalent to that for the ending of slavery.

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It could be argued that words don 't matter, but anyone who attended the negotiating sessions for the Social Summit knows that this is a superficial assessment. The Declaration and the Programme of Action were the result of four preparatory meetings at wh ich every word was carefulty considered and negotiated and there were strong disagreements about many issues, resolution of which required that difficult compromises had to be made. Since the Summit, many countries and international organizations have been attempting to implement the commitments and programmes. The UN Secretary-General presented areport (prepared by the Division for Social Policy and Development) to the General Assembly last October which summarizes some of the policy initiatives taken. One hundred and ten countries have reported taking some action. For example during the General Assembly debate China announced that it would attempt to eradicate the most severe forms of poverty by 2000. About thirty countries have set themselves time-bound poverty reduction targets. Many countries are giving more attention to employment than five years aga: alt of western Europe for example. Many have lifted the priority given to education, health, housing and social proteetion. Fewer countries are deliberately adopting policies which directly increase unemployment or other forms of deprivation. Regional conferences were held in Asia and Latin America in 1997 at which ministers reported on goals their countries have adopted and policies they have introduced or strengthened to implement the Social Summit commitments and programmes. Such regional conferences are now being planned for Africa, Western Asia and the economies in transition. A regional conference in Vienna in February 1998 considered innovative ways of increasing employment in Europe. Some govemments have ignored or acted inconsistently with the Social Summit commitments and recommendations. The Summit consensus reflected the agreed position of those who spoke for their governments at that moment. It did not reflect the views of everyone in even those governments at the time-as 1 remember vividly, for there were strong debates with Treasury officials about Australia's position-let alone the policies of those elected since. Nor do the Summit outcomes resolve the complexity of practical policy choices when resources are limited, let alone the debates about the most effective means for achieving particular goals. Yet agreeing on shared goals, strategies and policies was a major step, for with greater

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clarity about objectives a sharper and more cost effective focus for programmes is easier. There has been a major change in some international organizations too. The World Bank and the UN Oevelopment Programme have made poverty reduction their principal priority. The structural adjustment policies of the World Bank in the eighties are being replaced by much more broadly based strategies for human development. The Development Assistance Committee of the OECO has adopted demanding social targets based on those set out in the Summit Oeclaration for poverty reduction and improvements in social services. However the policies of the IMF and the World Trade Organization remain stubbornly, narrowly the same. The UN Commission for Social Oevelopment has been addressing one of the major Summit themes at each of its annual meetings since 1995: first poverty; last year employment-and some additional policies were recommended, including for example setting time-bound targets for growth of employment and reduction of unemployment as a way of expressing the centrality of the goal of ensuring availability of opportunities for income-earning work for all who want them. Last month the Commission discussed ways of strengthening social integration. Ouring the preparation for this session two meetings of experts have been held, each of which wrote reports which have since been circulated to the national missions. The first speaker at one of them opened by saying he hoped that he had understood the question, and to illustrate the importance of understanding the question told the story of a new British Ambassador to Washington who was rung by a radio station and asked what he wanted for Christmas. Thinking of the dangers of appearing corrupt, he said that he would like a small box of chocolates. The station told hirn when his request would be broadcast and when the time came he heard that the French Ambassador had said that his hope for Christmas was for world peace, that the German Ambassador was hoping for the end ofhunger and the British Ambassador for a small box of chocolates! The next stage of this international process was the Special Session of the General Assembly in 2000, which both reviewed progress and discussed concrete ways of more effectively achieving the goals of equity, employment growth and social solidarity. The first organizing session will be in May this year, and this and the later preparatory meetings will be opportunities for both governments and civil society to present ideas for consideration by the national representatives. This is an important forum for advocacy, and it has the advantage of relating to all countries.

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4. POLICr RESPONSES AND INNOVATION One ofthe important achievements ofthe Social Summit was the recognition that countries could not achieve social goals let alone cope with the consequences of growing international integration by themselves. lncreasing international cooperation has become an imperative for social development. Several responses to increasing global integration are required. First and most important is the recognition that no government is powerless. Though integration of financial markets reduces the capacity of governments to act intentionally, the response of some commentators and theorists to simply regard this as confirmation of their belief in government passivity is simplistic and inadequate. The constraints caused by globalisation have been exaggerated. Governments still have considerable scope for independent policy initiative and should use it as effectively as they can. Allcountries have capacity to influence the rate of national saving and to determine the compositi on of public outlays, and even, within limits, to determine the tax structure and the rate of interest-though the limits are naITowing for particularly the latter. Most c\early, all countries can shift the pattern of public outlays in directions which will maximize the benefit to economic and social development and employment growth. lncreasing education and health expenditure and support services, building infrastructure and reducing wasteful military expenditure all improve human weIl being and invest in the future. All countries have the capacity to initiate national and 10cal schemes to increase economic opportunity by increasing the availability of credit and encouraging small business. Second, countries need to be cautious ahout the timing and speed with which they liheralize their economies. Recent experience shows that financial probity alone requires that a comprehensive and rigorous supervisory regime be in place before financial deregulation proceeds far. The responsible policy for the IMF at present would be to advise governments about appropriate regulatory regimes, not to continue urging them towards liberalization. In relation to trade too, caution is necessary about the timing, extent and pace at which tariff and non-tariff baITiers are removed. There is much hypocrisy in this area, with the major industrial powers urging free trade on everyone, but persistently retaining restrictions and even increasing subsidies which are in the interests of particular industries or companies in their own countries. Countries must evaluate their own in-

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terests rigorously. Both theory and historical experience show clearly that infant industries-broadly defined-need opportunity and time to establish and grow. Comparative advantage must be treated as dynamic, and allowed to evolve. Third, countries can act together to reduce threats ofvolatility, instability, inefficiency and inequity. For example, all countries will benefit if all give employment a higher priority, for this will generate mutually reinforcing employment growth. The success of individual countries in expanding productive employment will provide important positive externalities for the other countries; by creating demand for the products of their workers, by increasing the flow of external resources, by reducing the need for international peacekeeping. In this very important sense it is advantageous for all countries to confront the problem in a framework of international cooperation. (Khan and Muqtada, 1997) Another of the necessary responses to growing global integration is that more of the standards and infrastructure of international exchange will have to be established or provided by countries, corporations and not for profit organizations acting together, if they are to operate efficiently. The norms and structures of trade and finance, communication and travel and some aspects of public health, social policy and crime prevention must be universal if they are to be effective. Global norms and standards will have to be extended and strengthened and the range of global public goods increased. The Commitments and parts of the Programme of Action of the Social Summit are one example of international standard setting. Others are the UN conventions on human rights, women, the rights of the child and the labour standards in ILO conventions. The ILO is in the process of negotiating a Declaration on workers' fundamental rights, as one means of setting a floor below which no country can reduce its social framework. 5 This is one essential approach to stopping 'a race to the bottom' which is feared by some. A convention for which the Social Division at the UN has responsibility is the Standard Rules on the Equalization of Opportunities for Persons with Disabilities. These were adopted by the General Assembly in 1993 and describe minimum legal and administrative requirements to ensure that disabled people have equitable access to services and opportunities for employment. A monitoring mechanism to support imple-

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mentation involves the appointment of a Special Rapporteur, who at present is Mr. Bengt Lindqvist of Sweden. He works by advising governments, commenting on their activities in reports to the General Assembly, and strengthening the dialogue between Member States, intergovernmental bodies and non govemmental bodies. Another approach is to expand the range of global public goods. 6 This is not the moment to discuss that essential concept in depth, but it is worth noting that we are quite familiar and accepting of the value of the World Health Organization and the International Civil Aviation Organization. However a growing range of global issues remain unaddressed or given inadequate attention. Examples include provision of swift, adequate emergency relief and support in response to natural disasters or the consequences of civil war, international financial volatility, competition between countries over tax rates, international economic coordination, drug trafficking, money laundering, international migration, protection of the global environment and management of the global commons, let alone the continuing issues of improving global economic performance and social inclusiveness by facilitating economic and social development and of improving security for all through peace-keeping and peace-making. An example of an issue requiring attention is the threat of international tax competition. Vito Tanzi of the IMF has suggested the establishment of a World Tax Organization to provide a focus for the negotiation of minimum tax standards, so as to constrain the capacity of countries to undermine each others' interests by competitive tax cuts (1996). A crucial question is how to pay for an expanded range of global public goods. Many proposals have been made including borrowing, user pays fees, increased compulsory subscriptions and new taxes such as on air travel, telecommunications, use of energy or the arms trade. One possibility which deserves particular attention is a smaIllevy on foreign exchange transactions-the Tobin tax. This would contribute to stabilizing financial markets as weIl as to raising revenue for governments part of which could be used for global public goods. 7 Introduction of a Tobin tax should be one of several new policies for reducing financial instability and so reducing the power of the international financial markets to disrupt national economies and societies. The logic of such an extension of global public goods is water tight. Politicalleadership will still be required to make the transition, but pressure of circumstances will force the process to some extent-as it has during the last decade in relation to ozone depletion (the Montreal Con-

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vention) and international trade (the establishment of the World Trade Organization). The extension of global public goods is inevitable in an orderly world. The issue is the speed and effectiveness with which the evolution occurs. The sooner it happens the more effectively underdevelopment and the provision of social services everywhere will be addressed.

5. CONCLUSION To conclude: At the beginning I mentioned six themes which would be discussed: • that economic and social issues are closely interdependent and that the appropriate stance is to work on both together; • that though the threats from globalisation have been exaggerated, there can be substantial costs as weB as considerable benefits; • that constraints on national policy are significant but are less severe than is commonly considered; • that the vitality of national and international political processes must be increased to cope effectively with the changes wh ich are underway; • that the private sector, unions and civil society have crucial roles in the provision of services and in advocating socially responsible values, standards and policies; • and that one of the most effective means of addressing the erosion of national autonomy from globalisation is for countries to cooperate in setting and implementing shared objectives and international standards and establishing more global public goods. I hope that you are now persuaded about each of them! The world is in a strange position. The global community has a greater capacity to improve aggregate human weH being than at any other time in history. Yet many people have a sense of political powerlessness, feeling that the forces undermining personal and national security, equity and harmony are out of control. For many, 'globalisation' symbolizes those forces. Yet we choose powerlessness by despairing. We can be empowered by a reasonable sense of hope. There have been many signs in many countries of areaction to distortions in economic strategy. There is much evidence of socially and economically responsible and innovative

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thinking. This is a time of opportunity. We can all help shape the future, through imaginative rethinking and firm, authoritative social action, service and advocacy. We can all be influential in movement towards a more humane, just, peaceful and inc1usive global society. NOTES 1. Reductions in real interest rates in some countries during the last couple of years, facilitated by low inflation rates, are certainly one reason for the wave of simultaneous economic growth which has been widespread in 1996 and 1997. However this does not invalidate the general point, for there have been severe costs from the high real interest rates since the beginning of the eighties, so the recent improvements illustrate the extent of the foregone income when interest rates were higher. As weIl other reasons for the concurrent positive growth rates in most countries in the mid nineties are also certainly important, including the dynamism resulting from increased integration, the international externalities of strong growth in East Asia, and the general reductions in the proportions of national income being wasted by governments on military expenditure. This latter factor has allowed governments to redirect outlays in more productive directions or to reduce taxes. 2. The reason for this is clear. Financial traders want low inflation above everything and this is commonly achieved through high interest rates. High interest rates attract foreign funds, keeping the exchange rate high. Since all traders know that these are the conditions which appeal to their colleagues, there is a herd effect and financial markets commonly overshoot-both up and down. Yet this disregards the impact ofhigh interest rates and overvalued exchange rates on output and employment. One reason for the slower growth of the advanced economies during the last 20 years compared with the previous 30 years is that their real interest rates have averaged more than three per cent high er since 1980 than in the decades before. 3. For all these reasons globalisation may involve a 'fiscal squeeze': adjustment involves additional spending requirements yet capacity to raise revenue is constrained. Additional outlays due to structural adjustment forced by liberalization include unemployment compensation paid to those who lose their jobs; retraining and relocation programmes; and corporate subsidies which many countries-inconsistently-give to their own companies to support them or offer to potential foreign investors to attract them. Revenue los ses directly related to globalisation include reduced revenue from lower tariffs; competitive reductions in company and top personal income tax rates; and tax concessions offered to potential investors. As yet, however, revenue as a proportion of national income has not fallen in OECD countries: It has gone on growing and in 1997 was expected to peak at 37.7 per cent of GDP, probably benefiting from the sustained economic growth through the nineties. 4. Summary of the Programme of Action from the Social Summit Chapter 1 outlines the requirements for 'An Enabling Environment for Social Development,' beginning with means for creating a favourable national and international economic environment. Macroeconomic coordination and financial market stabilization are emphasized.

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Chapter 2 describes a strategy for the Eradication of Poverty, beginning with the expectation that countries will formulate or strengthen national policy eradication programmes by 1996. Detailed minimum (but ambitious) targets are described, relating to life expectancy, child mortality, food security, health, education, shelter and monitoring progress towards their achievement. Chapter 3 on Expansion of Productive Employment and Reduction of Unemployment beg ins by emphasizing the importance of 'Placing the creation of employment at the centre of national strategies and policies.' Chapter 4 on Social Integration describes means for ensuring inclusiveness through opportunities for full participation for all in society and government. The importance of equity and social justice and of tolerance and mutual respect are described. Particular social issues are discussed such as the needs of migrants and refugees and the reduction of violence, crime and drug use. In Chapter 5 on Implementation and Follow-up both national and international strategies are outlined. The role of international organizations is described as being to assist governments in building their capacities for preparation of integrated strategies and strenglhening business, union and olher civil organizations. ECOSOC is requested 10 consiuer 'new anu innovative ideas for generating funds.' A special session of the General Assembly was proposed for 2000 to review progress. 5. The proposed fundamental rights or core labour standards are basic indeed. They are: the prohibition of forced labour and child labour; freedom of association and the right to organize and bargain collectively; equal remuneration for men and women of work of equal value; and non-discrimination in employment. 6. Global Public Goods The need to offset global market failure offers another way forward. There are two obvious responses. One is for national governments, the private sector and the civil society to seek to act as effectively as possible within the limits, aiming for the best available outcomes from national policies and action within the global constraints. The other is for countries to act together to ac hieve agreed goals. A conceptual shift is required, a central aspect of which must be recognition of the pervasiveness of global market failure, of the incapacity of nations acting alone to cope and of the necessity for cooperative international action to offset such failure. Just as national governments cope with market failure within their countries by organizing the provision of public goods, so the international community is being compelled to respond to international market failure through expanding the provision of global public goods. A particularly important aspect of market failure is the inability of the private sec tor to provide goods and services which automatically benetit everyone. This is the reason for such national public goods as the law and order system, roads, the public health services and public education. It is also the principal rationale for such global organizations as the International Telecommunications Union, the International Civil Aviation Organization and the World Meteorological Organization. Their services are global public goods. Uness every country is required to contribute to the cost of these services the 'jj'ee rider' problem arises. Allowing voluntary payment would be unfair because some countries would benefit without contributing to the cost of provision. The decline in international development assistance is partly due to the free-rider problem: The motivation to provide aid is reduced when other countries offer little.

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During the last decade there have been some significant extensions of global public goods such as the negotiation and implementation of the Montreal Protocol on Substances that Deplete the Ozone Layer and the Framework Convention on Climate Change and the establishment ofthe World Trade Organization. As mentioned in the text, a growing range of issues remain unaddressed. Not all international standards have to set or cooperation organized through government. Private initiatives are playing a valuable part already in situations where the interests of corporations are c1early identifiable. However equity and comprehensiveness require that many global services be publicly organized or supervised. Political support for expansion of the provision of global public goods will certainly increase as more governments become aware that this is the only way to equitably share the costs of effective provision-a calculation which should take only a few minutes once the issue is seriously addressed. This situation is called 'the prisoners' dilemma' by economists, because unless all beneficiaries are compelled to contribute, the motivation for one or a few to provide the service voluntarily is severely undermined since they know that noncontributors will benefit. 7. The Tobin Tax One important approach to the damage caused by international financial volatility and the constraint that imposes on national social policies would be introduction of a Tobin tax. Nobellaureate in economics James Tobin suggested a couple of decades ago that a smalllevy on foreign exchange transactions would reduce both the volatility of financial flows and of exchange rates. His idea is now being carefully studied and the scholars and financial market experts involved have concluded that the idea is technically feasible (Haq et al.). An ad valorem tax could be collected by governments at dealing sites from all foreign exchange transactions through banks and other dealers. Avoidance could be minimized by imposing a penalty tax on dealings with tax-free jurisdictions. A low tax rate of 0.1 per cent would enhance viability but even that rate would generate substantial revenue for governments. The daily turnover, of around US $1300 billion in 1995, might weil fall by about 20 per cent if such a levy were introduced. Revenue from such a levy would be around US $150 billion a year which would provide significant additions to the revenue bases of all countries and particularly those in which currency trading is a substantial activity. Part ofthe international treaty which would be required to introduce the tax could be agreement on a formula for allocating a small part of the receipts, for that is all wh ich would be required, for funding global public goods through the various international organizations such as the UN, World Bank and the IMF. The impact of such a levy would include a marginal reduction in the capacity of international financial markets to influence national macroeconomics policy and perhaps the opportunity for a small global reduction in real interest rates, because of the reduction in the volatility of short term financial flows. The agreement required for the application of the Tobin tax would be a very significant step forward in international economic cooperation.

BIBLIOGRAPHY Bank for International Settlements, 66th Annual Report, Basle, 1996. Deacon, Bob et al. , Global Social Policy: International organizations and thefuture of welfare, Sage, London, 1997. Eatwell, John, 'Global Barriers to the Growth of Employment,' in Aspects ofWorld Employment Strategy, United Nations, New York, 1997.

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Grunberg, Isabelle, 'Double leopardy: Globalisation, Liberalization and the Fiscal Squeeze,' Office ofDevelopment Studies, UNDP, 1997. Hag, Mahbub ul, Inge Kaul and Isabelle Grunberg, The Tobin Tax: Coping with Financial Volatility, OUP, New York, 1996. International Monetary Fund, World Economic Outlook. Globalisation: Opportunities and Challenges, IMF, Washington, May, 1997. Khan, Azizur Rahman and M. Mugtada, Employment Expansion and Macroeconomic Stability Under Increasing Globalisation, Macmillan, London, 1997. Langmore, lohn and lohn Quiggin, Work For All: Full Employment in the Nineties, MUP, Melbourne, 1995. Little, Graham, 'Leading Change,' St. Mark' s Review, Spring, 1997. Organization for Economic Cooperation and Development, Economic Outlook lune 1997, Paris, 1997. Piven, Francis Fox and Richard Cloward, The Breaking ofthe American Social Compact, The New Press, New York, 1997. Tanzi, Vito, 'G1obalisation, Tax Competition and the Future of Tax Systems,' IMF Working Paper, WP/96/141, December, 1996. Walter, lames, Tunnel Vision, Allen and Unwin, Sydney, 1996.

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Health Care and Social Work Education in aChanging WorId Ronald A. Feldman, PhD

SUMMARY. This article ex amines two major challenges that beset contemporary social work education, namely, rapid and dramatic macro-level changes that are occurring in the social, political, economic and demographic realms and, also, the slow speed at which curriculum changes occur in institutions of higher education. Primarily employing managed care as an example, aseries of recommendations are offered to improve social work education concerning health care. Among them are more efficient mechanisms for introducing curriculum changes, greater emphasis on research and evaluations skills, systematic monitoring of health care programs, preparation of public impact reports, better utilization of modern information technologies, and the introduction of mini-courses that can be adapted readily to emerging health care and educational needs. [Article copies available for a fee from The Haworth Document Delivery Service: 1-800-HAWORTH. E-mail address: Website: © 2001 by The Haworth Press, lne. All rights reserved.]

KEYWORDS. Social work education, health care education, managed care, curriculum innovation Ronald A. Feldman is Dean and Ottman Centennial Professor for the Advaneement of Social Work Edueation. An early version ofthis manuseript was presented at the Seeond International Conferenee on Soeial Work in Health and Mental Health, Melboume, Australia, January, 1998. [Haworth eo-indexing entry note]: "Health Care and Socia! Work Edueation in aChanging World." Feldman, Ronald A. Co-published simultaneously in Sodal Work in Health eare (The Haworth Sodal Work Praetice Press, an imprint ofThe Haworth Press, Ine.) Vol. 34, No. 1!2, 2001, pp. 31-41; and: Social Work Health and Mental Health: Practice. Research and Programs (ed: Alun C. Jackson, and Steven P. Segal) The Haworth Social Work Practiee Press, an imprint ofThe Haworth Press, Ine., 2002, pp. 31-41. Single or multiple eopies of this article are available for a fee from The Haworth Doeument Delivery Service [1-8oo-HAWORTH, 9:00 a.m. - 5:00 p.m. (EST). E-mail address: [email protected]].

© 2001 by The Haworth Press, Ine. All rights reserved.

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SOCIAL WORK HEALTH AND MENTAL HEALTH

This discussion examines the challenges that beset social work education in the face of two disparate phenomena. The first is the rapid and dramatic macro-Ievel changes that are occurring worldwide in the social, political, economic and demographic realms (see, for exarnple, Bronfenbrenner et al., 1996; Caims and Caims, 1994; Johnson and Wahl, 1995; Hogan and Egebeen, 1997; Rowe and Jeffries, 1996; Sampson and Morenoff, 1997; Wallman, 1997). Profound transformations in these areas have reshaped the conceptualization, design and implementation of a wide range of social work services (see, Hatry, 1997; Hopps and Collins, 1995). Foremost among these in terms of salience, scope and importance are the dramatic modifications in health and mental health service delivery that are occurring in conjunction with the growth of managed care systems (Cowie and Itkin, 1997; Edinburg and Cottler, 1995; Leukefeld and Welsh, 1995; Williams and Ell, 1998; Lin, 1995). The second, by contrast, is the laggardly speed at which change occurs in institutions of higher education. Academia encourages significant advances in creativity, innovation and critical analysis on the part of individual scholars. Yet, institutions of higher education-including professional schools of all kinds-are inordinately slow to make major curriculum changes (Braskamp and Ory, 1994). The democratized and decentralized decision-making processes of academia, the entrenched privileges accorded to tenured senior faculty, the proclivity to implement curriculum revisions incrementally, and the difficulties of conceiving, financing and launching large-scale modifications in academic bureaucracies militate against rapid change in professional school curriculums (Keast and Macy, 1973; Kimball, 1990). Nevertheless, to meet the service delivery demands that are imposed by a quickly changing world, schools of social work must be able to revise their curriculums with speed and skill.

SOCIAL CHANGE IN THE 1990s

It is relevant at the outset to identify some of the most salient and influential macro-trends of the last decade and to consider their special impact upon social work services in the health and mental health arenas. The importance of such trends cannot be underestimated nor can social work educators afford to neglect their likely impact upon the scope and substance of health services. The collapse ofCommunism has yielded a world in wh ich communal responsibility for the care of fellow human beings is diminished as a

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cardinal social value. The "welfare state" has been discredited even though it ne ver was fully implemented or tested in most countries, especially those with sufficient fiscal and human resources to establish it (Kamerman and Kahn, 1996). Perhaps more important, the strongest countervailing force against "unbridled capitalism" has virtually disappeared from the world scene. As a result, the minimization of costs and the maximization of profits now are legitimized as the paramount guiding principles not only of free enterprise, but of policy formulation and health care delivery as weH (Austin, 1982; Begun and Lippincortt, 1993; Greenwood et al., 1996). In short, "the bottom line" has assumed prepotency in the world of health care as it has in other domains. Concurrent with these developments are the globalization of commerce and industry along with corresponding growth in the reach and influence of large-scale corporations. In the United States, long-standing laws and regulations that once militated against excessive concentrations of corporate contral have withered. Mega-mergers of large-scale businesses occur with increasing frequency. The fmancial margins required for banks and lending institutions have been reduced. The market share constraints placed upon mass media enterprises have been weakened. These developments and others have resulted in rapid and sizable accretions of wealth on the part of a small number of corporate entities with corresponding gains in their ability to capture markets and exercise contral in a wide range of industries inc1uding health care (Labaton, 1999). The increased concentration of economic power on the part of a limited number of corporate giants, along with the dismantling of time-tested fiscal and regulatory safeguards, portend periods of great volatility in the economic and social domains. At the same time, the world also is witnessing a rapid and unparalleled burgeoning of scientific knowledge (Glass, 1977; MuHen and Magnabosco, 1997). This phenomenon is being accelerated by rapid advances in information and communication technologies (Goerge, 1997). Taken together, these developments are forcing all nations to contend with accelerated, pronounced and even turbulent changes in the world ofhealth care. It is a world that is especially challenging to educators and, in particular, to those who are responsible for developing useful and effective curriculums in schools of social work.

MANAGED CARE AND HEALTH SERVICE DELIVERY The above-mentioned changes and others have led rapidly and inexorably to the emergence and current dominance of"managed care" as the

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preferred mode of health care service delivery in the United States. Service systems in health and mental health have been transformed on a larger scale and with greater speed than ever before. Powerful providers are joining with one another to protect or enhance their market positions while weaker ones languish. For-profit insurance companies are assuming roles of leadership and control that are unsurpassed in the his tory of health care. To maximize profits for shareholders, fiscal and service benefits are being squeezed increasingly from both ends of the delivery continuum, that is, from providers and consumers alike. Thus, for instance, arecent survey indicated that in the year 2000 approximately 250,000 Medicare beneficiaries would be forced out of HMOs while nearly one million beneficiaries would face a 44% increase in premiums. Others will pay even steeper increases. The survey also found that "virtually every senior and disabled beneficiary would experience some kind of benefit cut" in the year 2000 Medicare HMO program (Pear, 1999). The extant mergers are virtually certain to metamorphose into an even smaller number of exceedingly powerful and weIl financed corporate entities. These trends are likely to be reflected in the shape and substance of health care service systems. The guiding philosophy ofhealth care delivery has changed in fundamental ways. Instead of aiming to provide services that can maximally extend human life and enhance the quality of human existence, the overarching goal now is to provide services that are optimally cost-effective for the managed care organization (Burkhart and Reuss, t 993; Shern and Trabin, 1997). Proponents of this principle contend that its outcomes for service delivery will greatly reduce costs, increase the competitiveness of health care organizations, and thereby assure the long-term economic viability ofthe health care industry. Yet, in achieving these goals, an inescapable correlate is that growing numbers of decisions about service delivery are bound to err in ways that will compromise the quality of life and the very existence of large numbers of c1ients. Concomitant with the above changes is the increased frequency with which the authority for service delivery decisions has been removed from such health care professionals as physicians and social workers. Long-standing health care alliances are being rent asunder. Traditional roles in health care sometimes have been reversed dramatically. Consi der, for example, the instances where physicians' decisions about service delivery have been countervailed by nurses employed as reviewers or gatekeepers by insurance companies or, even more, by persons with no health care training whatever (Browning and Browning, 1996). Su-

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preme irony inheres in the observation that those who fought so long and hard against "socialized medicine" in order to deter governmental control over their service delivery prerogatives now find themselves overwhelmed by the decision-making authority of individuals and organizations that are far less friendly to their cardinal professional values. Among the myriad consequences of the foregoing trends are the decentralization of health care services into communities or families and away from hospitals and other health care bureaucracies. Concomitantly, the use of advanced communication, information and electronic technologies is growing apace. These trends have been accompanied by the downsizing of service delivery organizations and the decIassification of social work services. As in other industries subjected to similar macro-trends, higher salaried social work administrators are being replaced by entry-level MSW social workers. In turn, many of the latter are being displaced by baccalaureate social workers and, with increasing frequency, by individuals with no social work training whatever (Frumkin and Lloyd, 1995; Poppie, 1995). The foregoing trends are nearly certain to accelerate and exacerbate three particularly vexsome problems for social workers and other health care professionals. First, desperately needed services will become less accessible to the poorest and neediest clients (that is, those who cannot afford to pay for the costs ofhealth care) and instead will be extended more readily to the most affluent and healthiest populations. The "creaming of cIients," or "cherry picking" (Pear, 1999), will yield an especially homogeneous and intractable group of cIients who are in the greatest need of service, least amenable to interventions of any kind, and most bereft of the fiscal resources needed to ensure effective service delivery. Second, the funds needed to advance research-based practice knowledge will decline markedly. Over the long run, therefore, the quality and efficacy of health care services are bound to erode vis-a-vis services that might have been attainable in the absence of such adverse developments. Third, new and unantidpated career pathways are likely to emerge for health ca re sodal workers. What, then, are the implications of these trends for social work education? Can meaningful responses be formulated by educators in the midst of such powerful forces? Moreover, can they emerge with suffieient alacrity to ass ure the continued leadership of social work in health care delivery?

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EDUCATION FOR HEALTH CARE SOCIAL WORK The cumulative trends cited above dramatize the need for aseries of major initiatives in contemporary social work education. Above all, they require that educators attend continuously to the emerging societal trends that are bound to shape tomorrow's curriculums. Furthermore, they highlight the need for schools of social work to devise decision-making forums and procedures that can respond more readily than heretofore to rapid societal change. If nothing else, they require that managed care become a central component of social work curriculums. Students must be apprised systematically and regularly about the merits and liabilities of managed care systems and alternatives to them. Social work curriculums become reified for a variety ofreasons. Not the least is the curriculum decision-making powers of tenured full-time faculty. Hence, it will be beneficial to encourage the introduction of new courses by part-time adjunct faculty who have had direct experience with managed care programs. Concurrently, it will be advantageous to employ new formats for such courses. Thus, for instance, one school of social work has introduced aseries of "required mini-elective courses" in selected practice areas (Columbia University School of Social Work, 1998). They differ from the typical 15-week practice course in that students are required to select two eight-week practice courses from an extensive list of options. Such courses introduce greater f1exibility, choice and focus into the social work curriculum. More important, they permit rapid curriculum modifications in accord with emerging societal trends. Likewise, social work schools need to revise, update and expand their continuing education programs. To countervail the extant press ures toward declassification, social work educators and scholars must be able to delineate and document how the interventions delivered by MSW social workers are more efficient and/or cost-effective than those provided by BSW social workers and by service providers who lack professional training (see, for exampie, Feldman, Wodarski, and Caplinger, 1983). Such efforts will entail the design and implementation of comparison studies that may range from focused surveys to large-scale field experiments (Boruch, 1997). To the extent that they document the comparative advantages of MSW education they are likely to strengthen and expand the role of professional social workers in managed care. To the extent that they fail to do so, it will be necessary for educators and practitioners to seek new ways to improve faltering services or, ab se nt success, to concede health care systems to other providers.

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In a practice world that is reaching new heights of cost-consciousness, it behooves social work educators to devise training programs that enable students to engage more systematicaHy, regularly and readily in outcomes measurement (see, for example, MuHen and Magnabosco, 1997). It is necessary, therefore, to increasingly introduce research and evaluation skills to social work curriculums and, especially, to link them integrally and continuously with the service efforts of practitioners. The resulting curriculums will need to impart critical thinking skills to social work students (see Gambrill, 1990) as weIl as skills in research and evaluation methods (Boruch, 1997). Not coincidentally, it will also be important for admission officers to seek MSW applicants who are resilient, adaptable and creative in the face of rapid changes in the worlds of social work education and practice. Perhaps more than before, it also will be advantageous to seek students who are able to compele effectively in designing and implementing health care programs in an increasingly entrepreneurial marketplace. It would be neither inconceivable nor inadvisable for social workers to establish their own self-designed programs of managed health care. Such endeavors are likely to adhere to the tradition al values of the social work profession while also incorporating managerial skills that sometimes have been lacking in earlier programs. It is probable that managed care programs will fail increasingly to deliver essential services for high-risk clients and, therefore, that they will instigate unnecessary client deaths. Hence, it is essential for social workers to know how to monitor the effects of managed care programs and to create and publicize impact statements about them (Mullen and Magnabosco, 1997). To facilitate such efforts, social workers will need more extensive training in technical skills regarding program evaluation and the administration ofhealth care services (Seidl, 1995; Tripodi, 1983). Spreadsheets may become just as common as process recordings in social work education, if not more so. Inevitably, the above-cited trends will lead to a renewed emphasis on advocacy training in socia! work education (Mickelson, 1995). It will be necessary to devise new educational and practice models that draw upon technologies that were not available to previous generations of social work students. Future professionals will need to become weil versed about the most recent and efficacious information, communication and computing technologies (Schoech, 1995). Yet, despite immense advances in these realms, the ensuing intellectual and fiscal challenges will be daunting for even the most affluent educational institutions. They will demand substantial investments in personnel, technical equipment and

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physical plants. The rapid pace of technological change will require continuous re-evaluations of prior efforts and increased investments over time. Yet, the failure to make such investments could doom health care social work to irrelevance or obsolescence. Endeavors such as the above will place considerable emphasis upon the elaboration of weIl designed research initiatives on the part of social work educators (Gras so and Epstein, 1992). More than before, educators will need to devise brief cost-effective interventions (Epstein, 1995; Fanger, 1995) and, correspondingly, to construct readily applicable measures and instruments (Corcoran and Fischer, 1987). The results of these efforts will need to be incorporated increasingly into educational curriculums and subsequently into social work practice. Short-form questionnaires, brief measures, and efficacious modes of program evaluation will be required. Indeed, cost-effectiveness, efficiency and continuous monitoring of clients and programs will be the hallmarks of social work research, education and practice. To generate requisite progress in these areas, major investments will need to be made in social work research. Because the quest for research funds is becoming increasingly competitive, scholars will have to devise less expensive and more cost-effective ways to launch their research programs. These challenges will require social work schools to revisit the relative distribution of resources for their master's and doctoral programs. It is likely that relatively more resources will need to be allocated for the latter. The fiscal demands upon schools of social work will become greater and more determinate. Concurrently, it will be essential for social work educators to strive even more to establish research programs that are linked readily with curriculum revisions and practice advances in health care (Austin, 1998). Finally, the above-posited changes in social work education will require more concerted and effective efforts to address other key aspects of professional training that have long been advocated but seldom implemented. Foremost among these are the introduction or expansion of curriculums in policy formulation and implementation, the elaboration of well-designed curriculums for preventive social work services, and more creative and meaningfullinkages with allied professions and disciplines.

CONCLUSION The challenges that confront social work education in health care are numerous and formidable. They represent the logical extensions of

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long-standing, albeit recently accelerated and energized, societal trends. These trends portend the erosion of essential services for at-risk cIients unless effective responses are formulated in the near future by educators, administrators and practitioners. Accordingly, aseries of recommendations have been set forth in order to help social work educators address these challenges. They must be implemented with alacrity if professional education is to prepare students for effective practice in the contemporary world of managed care. Educational and practice advances in any one realm are highly dependent upon corresponding advances in the others. Formidable as these challenges may be, the lessons to be learned from adaptive and successful responses to them are bound to strengthen all of social work education and, in turn, to enhance the quality, effectiveness and impact of social work services in health and mental health. REFERENCES Austin, D.J. (1998). Areport on progress in the development of research resources in social work. Washington, DC: Institute for Advancement of Social Work Research. Austin, MJ. (1982). Evaluating your agency's programs. Beverly Hills, CA: Sage Publications. Begun, J.W. & Lippincott, R.C. (1993). Strategie adaptation in the health professions: Meeting the challenges of change. San Francisco: Jossey-Bass Publishers. Boruch, R.F. (1997). Randomized experiments for planning and evaluation: A practical guide. Thousand Oaks, CA: Sage Publications. Braskamp, L.A. & Ory, J.C. (1994). Assessingfaculty work: Enhancing individual and institutional performance. San Francisco: Jossey-Bass Publishers. Bronfenbrenner, U., McClelland, P., Wethington, E., Moen, P. & Ceci, SJ. (1996). The state ofAmericans: This generation and the next. New York: The Free Press. Browning, C.H. & Browning, B.J. (1996). How to partner with managed care. Los Alamitos, CA: Duncliff' sInternational. Burkhart, PJ. & Reuss, S. (1993). Successful strategie planning: A guidefor nonprojit agencies and organizations. Newbury Park, CA: Sage Publications. Cairns, R.B. & Cairns, B.D. (1994) Lifelines and risks: Pathways ofyouth in our time. New York: Cambridge University Press. Columbia University School of Social Work. (1998). Bulletin 1998-1999: A century of making a dijference. New York: Columbia University School of Sodal Work. Corcoran, K. & Fischer, J. (Eds.) (1987). Measuresforclinical practice: A sourcebook. New York: The Free Press. Cowie, R. & Itkin, S. (1997). Managed special care: Risks and opportunities for the mentally ill and addicted. In L. Levitt (Ed.), Impact '97: Crises in health and social services (pp. 1-7). New York: New York State Association ofDeans und Directors of Schools of Sodal Work.

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Edinburg, G.M. & Cottler, J.M. (1995). Managed care. In RL. Edwards (Ed.), Encyc/opedia of social work, Volume 2 (pp. 1635-1642). Washington, DC: NASW Press. Epstein, L. (1995). Brief task-centered practice. In Edwards, R.L. (Ed.), Encyc/opedia ofsocial work, Volume 1 (pp. 313-323). Fanger, M.T. (1995). Brief therapies. In Edwards, RL. (Ed.), Encyc/opedia of social work, Volume 1 (pp. 323-335). Washington, DC: NASW Press. Feldman, R.A., Wodarski, lS. & Caplinger, T.E. (1983). The St. Louis conundrum: The effective treatment of antisocial youths. Englewood Cliffs, NJ: Prentice-Hall Publishers. Frumkin, M. & Lloyd, G.A. (1995). Social work education. In Edwards, RL. (Ed.), Encyc/opedia ofsocial work, Volume 3 (pp. 2238-2247). Washington, DC: NASW Press. Gambrill, E. (1996). Critical thinking skills for social workers. Beverly Hills, CA: Sage Publications. Glass, B. (1977). The scientist: Trustee for humanity. Bioscience, 27,277-278. Goerge, R.M. (1997). Potential and problems in developing indicators on child well-being from administrative data. In Hauser, RM., Brown, B.V. & Prosser, W.R Indicators of children's well-being (pp. 457-471). New York: Russell Sage Foundation. Grasso, A.J. & Epstein, I. (Eds.) (1992). Research utilization in the social services. New York: The Haworth Press, Inc. Greenwood, P.W., Model, K.E., Rydell, c.P. & Chiesa, J. (1996). Diverting children from a life of crime: Measuring costs and benefits. Santa Monica, CA: RAND Corporation. Hatry, H.P. (1997). Outcomes measurement and social services: Public and private sectorperspectives. In MuHen, E.J. & Magnabosco, J.L. (Eds.), Outcomes measurement in the human services: Cross-cutting issues and methods. Washington, DC: NASWPress. Hogan, D.P. & Egebeen, D.J. (1999). Demographic change and the population of children: Race/ethnicity, immigration, and family size. In Hauser, RM., Brown, B.V. & Prosser, W.R. Indicators of children' s well-being (pp. 311-327). New York: RusseIl Sage Foundation. Hopps, lG. & Collins, P.M. (1995). Social work profession overview. In RL. Edwards (Ed.), Encyc/opedia ofsocial work, Volume 3 (pp. 2266-2282). Washington, DC: NASW Press. Johnson, G.B. & Wahl, M. (1995). Families: Demographic shifts. In R L. Edwards (Ed.), Encyc/opedia of social work. Volume 2 (pp. 936-941). Washington, DC: NASW Press. Kamerman, S.B. and Kahn, AJ. (1996). Child health, medicaid, and welfare "reform." New York: Columbia University School of Social Work Cross-National Studies Research Program. Keast, W.R. & Macy, J.W. (1973). Faculty tenure: Areport and recommendations by the Commission on Academic Tenure in Higher Education. San Francisco: Jossey-Bass Publishers. Kimball, R (1990). Tenured radicals: How politics has corrupted Ollr higher education. New York: Harper Perennial Publishers.

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Labaton, L. (July 2, 1999). Bill to overhaul financial system passes the House. New York Times (pp. AI, C5). Leukefeld, c.G. & Welsh, R (1995). Health services systems policy. In RL. Edwards (Ed.), Encyclopedia ofsocial work, Volume 2 (pp. 1206-1213). Washington, OC: NASW Press. Lin, A.M. (1995). Mental health overview. In R.L. Edwards (Ed.), Encyclopedia of social work, Volume 2. Washington, OC: NASW Press. Mickelson, J.S. (1995). Advocacy. In Edwards, R.L. (Ed.), Encyclopedia of social work, Volume 1 (pp. 95-101). Washington, OC: NASW Press. MuHen, EJ. & Magnabosco, J.L. (Eds.). (1997). Outcomes measurement in the human services: Cross-cutting issues and methods. Washington, OC: NASW Press. Pear, R. (July 2, 1999). HMO's will raise Medicare premium or trim benefits. New York Times (pp. Al, AI5). Poppie, P.R. (1995). Social work profession: History. In Edwards, R.L. (Ed.), Encyclopedia of socia! work, Volume 3 (pp. 2282-2292). Washington, OC: NASW Press. Rowe, A. and Jeffries, J.M. (1996). The state ofblackAmerica: 1996. New York: National Urban League. Sampson, RJ. & Morenotf, J.O. (1997). Ecological perspectives on the neighborhood context of urban poverty: Past and present. In J. Brooks-Gunn, G.J. Ouncan & J.L. Aber (Eds.), Neighborhood poverty: Volume 11. Policy implications in studying neighborhoods (pp. 1-22). New York: RusseH Sage Foundation. Schoech, O. (1995). Information systems. In Edwards, R.L. (Ed.), Encyclopedia ofsocia! work, Vo/ume 2 (pp. 1470-1479). Washington, OC: NASW Press. Seidl, F.W. (1995). Program evaluation. In Edwards, R.L. (Ed.), Encyclopedia ofsocia! work, Volume 3 (pp. 1927-1933). Washington, OC: NASW Press. Shem, O.L. & Trabin, T. (1997). System changes and accountability for behavioral health care services: Lessons from the private and public sectors. In MuHen, E.J. & Magnabosco, J.L. (Eds.). Outcomes measurement in the human services: Cross-cutting issues and methods (pp. 101-112). Washington, OC: NASW Press. Tripodi, T. (1983). Evaluath'e research for social workers. Englewood Cliffs, NJ: Prentice-HaH Publishers. WaHman, K.K. (Ed.) (1997). America's children: Key national indicators ofwell-being. Washington, OC: Federal Interagency Forum on Child and Family Statistics. Williams, J.B.W. & Ell, K. (Eds.). (1998). Advances in mental health research: Implicationsfor practice. Washington, OC: NASW Press.

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THE RESTRUCTURING OF HEALTH AND MENTAL HEALTH SERVICE SYSTEMS AND ITS CONSEQUENCES

The Buck Stops Where? Contracting, Service Delivery and the Challenge to Provide Responsive Services Robyn Munford, PhD, MSW Jackie Sanders, MA

SUMMARY. This paper discusses the impact of contract-based purchasing on thedelivery 01' social and health services to families in New Zealand. The paper arose out of research conducted by the authors into the e1'fectiveness of certain human service interventions. It begins with an outline of the agency in which the research took place. It presents a Robyn Munford is Associate Professor, Head of School of Policy Studies and Social Work, Massey University, Palmerston North, New Zealand. Jackie Sanders is Director, Bamardos Child and Family Research Centre, Terrence End Palmerston North, New Zealand. [Haworth co-indexing entry note]: "The Buck Stops Where? Contracting, Service Delivery and the Challenge to Provide Responsive Services." Munford, Robyn, and Jackie Sanders. Co-published simultaneously in Social Work in Health Care (The Haworth Social Work Practice Press, an imprint ofThe Haworth Press, Ine.) Vol. 34, No. 1/2,2001, pp. 43-57; and: Social Work Health and Mental Health: Practice. Research and Pro· grams (ed: Alun C. Jackson, and Steven P. Segal) The Haworth Social Work Practice Press, an imprint ofThe Haworth Press, Inc., 2002, pp. 43-57. Single or multiple copies of this article are available for a fee from The Haworth Document Delivery Service I I -800-HA WORTH, 9:00 a.m. - 5:00 p.m. (EST). E-mail address: [email protected].

© 2001 by The Haworth Press, Inc. All rights reserved.

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brief overview of the development of contracting and then considers four key issues raised by this deve\opment from both the international literature and from the authors' experience of researching a social service agency. These issues are: defining what is to be purchased, accountability mechanisms, specificity/fragmentation and partial funding. The paper identifies that central components of the first two issues are informational, the third is about control and the fourth is about reducing govemment spending and extending state control over the activities of the not-for-profit sector. [Article copies available for a fee from The Haworth Document DelivelY Service: 1-800-HAWORTH. E-mail address: Website: © 2001 by The Haworth Press, Inc. All rights reserved.]

KEYWORDS. Not-for-profit, social work, contract, accountability, outcome purchasing, partial funding, fragmentation, purchaser-provider split INTRODUCTION This paper arose out of research that sought to identify factors related to the achievement of positive change by families. The families focused on in the research came to a social service agency because of difficulties they experienced in a wide range of areas of family life. The research was concemed with two key issues, namely, the identification of interventions that contributed to positive change, and those organisational factors that provided an environment in which effective support for families could take place. The focus of this paper is upon the latter group of issues and, more specifically, on the way that the contract funding regime influences how agencies function. An understanding of funding mechanisms is important because these mechanisms profoundly influence the nature and mix of services which will be available within communities and therefore to which families will have access. The New Zealand experience, in terms ofthe use of contracts, the development of the funder/provider split and the movement of the state out of the lives of individuals and communities constitutes a sociallaboratory in much the same way as did the development of the Welfare State in the 1930s (Cheyne et al., 1997). The New Zealand experience, in this sense, has some lessons for other countries which seek to embark on a process of major change to the state, community, and individual interface.

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THEAGENCY The family support service which provided the site for the research is provided by Bamardos NZ which is a not-for-profit agency. It works with non-mandated clients who seek support to change various aspects of their lives as families. Personal motivation to change is usually a feature of the clients seeking support. The service is located at the boundary between mental health and welfare services and works with parents seeking to change family functioning, as weIl as wider family issues such as custody/access, resource issues and the impact of personal issues on parental functioning. It is a national service provided out of 20 locations across New Zealand and working with over 1000 clients annually. The service is "generic" in that it attempts to work collaboratively with clients on a wide range of issues wh ich influence how things are able to be within their families. It takes a "whoie person" approach to the delivery of services. The level of government funding, which comes from Vote: Welfare, varies by geographic locality. In some areas it reaches 60% of total cost and in other areas no government fun ding at all is available. The shortfall in funding is balanced by charitable contributions within the community and corporate sector. Client fees are not levied for this service.

OVERVIEW OF CONTRACTING New Zealand does not have a tradition of extensive philanthropic giving (Nowland-Foreman, 1995:5). Historically, the provision of relief and support for families in need involved considerable levels of state involvement and an expectation of community support (ibid). Prior to the 1990s the most common method of state funding of not-for-profit providers was through a system of grants or subsidies. These were given to support the operation of organisations in general and were not usually attached to specific services or activities undertaken by the organisations (Renouf, 1995: 11). As Kramer (1994) notes, the change from funding through grants-in-aid to contracts is important because it signifies a change from government recognition of not-for-profit agencies as aseparate sector to the use of them as a vehicle for the achievement of government policy. Therefore the roles and relationships of the state and not-for-profit providers is crucial and has a significant influence over the way services for families develop. As of 1991 all transfers of funding by the state for the delivery of social ser-

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SOCIAL WORK HEALTH AND MENTAL HEALTH

vices from Vote: Welfare were achieved through the contract mechanism (Smith, 1996:6). The past 15 years have seen significant changes in the arrangements through which human services to families are funded, in the nature and scope of services available to families as well as in the roles and responsibilities ofthe state, families and communities. The state reforms ofthe 1980s and 1990s mark a point of major change in New Zealand in general (Renouf, 1995: 10). They also mark a point of significant change in the nature of the relationship between the state and not-for-profit agencies (ibid.). The development of contracts as the method for transferring funds between the two is one very clear manifestation of this changing relationship; it is to these changes that attention now turns. Martin (1995) provides a detailed analysis of the nature and applicati on of contracting to the delivery of state funded services and explores the issues upon which this development is premised. He (1995:36-7) identifies that the application of contracts to the delivery of social services formed part of a process of deconstruction of the state which sought to create a "three tier state sector" composed of ministries which provided policy advice and monitoring of the implementation of decisions made, agencies which would be owned by the state but wh ich could be organised in such a way that their objectives were explicit and which operated according to performance management principles, and private organisations which delivered services on behalf of the government. Martin (1995:36) further identifies that the "contract" was intended to be the mechanism through which these three parts were to be linked together. The use of contracts to secure the delivery of social services reflects the desire by governments to remove themselves from the business of providing all but the minimum of services. In New Zealand, the use of the contract mechanism gave effect to the funder-provider split which was applied to both health and social services from the early 1990s. In health it was achieved by the creation of Crown Health Enterprises (CHE's)-the state provider of most health services. In the welfare sector, there were numerous providers of welfare and supportive services most of whom had pre-existing funding relationships with various branches of government. For those who received funding from Vote: Welfare, these previous funding arrangements were transferred into contracts. The earliest forms of contracts used by the Department of Social Welfare involved the purchase of a whole service. For example, the Homebuilders Programme which initially provided funding for the fam-

Robyn Munford and .Iackie Sanders

47

ily support service which was the subject of our research, was always purchased as a single unit under contracLlt involved an agreement to provide specified types of support to families for a three year period in exchange for payment of the full cost of service delivery and was adjusted annually for inflation. The ac tu al quantity of service was not specified in the contract, neither was the expected result to be achieved by families after participation in the service. Twelve years later, funding for this service does not meet the full cost of service, it is applicable to a limited range of interventions within the service only, it is no longer inflation adjusted and must be negotiated on an annual basis.

KEY ISSUES

Defining What Is to Be Purchased-Informationallssues Contracts by their very nature require the definition of what is to be purchased. A large part of the successive changes in the contracting process can be attributed to continual revisions by the purchaser of the understanding of what is actually being purchased. These developments have not been smooth or very precise not least because of the fact that the information available to assist in the development of purchase plans is insufficient to guide that process effectively. For contracting to be successful, good and timely information is vital, yet this is one thing in both the areas of health and welfare that is uniformly acknowledged as being inadequate. The information problems exist in two crucial areas: • Purchasers lack information about "needs" and trends in need patterns over time. This means that they are unable to both understand the characteristics of citizens who need support and they are also unable to predict changes in these patterns over time. This makes the development of sound purchase plans and the charting of long term strategic direction for purchasing extremely difficult. In health, patterns of service utilisation, demographic and epidemiological information are often used as proxies for need. In welfare, processes called "needs analyses" are used alongside analysis of broad demographic patterns. In a climate of tightly controlled and often shrinking resources in real terms, the use of needs based planning can only be used to redistribute these limited resources among disadvantaged clients and communities. (Nowland-Foreman, 1995:18)

48

SOClAL WORK HEALTH AND MENTAL HEALTH

• Providers collect information relating to areas of service delivery and related aspects of staffing and resource use. Information is usually collected by providers on an individual basis and this is used as the foundation for the complex web of accountability processes for providers who, in the not-for-profit sector, will usuaHy receive funding from a number of different sourees. Information problems in the provider area usually centre around the difficulties involved in getting practitioners to complete information in uniform ways so that there is comparability within the organisation, and with developing effective recording and retrieval systems that are flexible enough to provide information in a rapidly changing environment. Information is necessary to fulfil accountability requirements, but it is also needed in order to provide the base upon which developments in service delivery and organisational change can be built. Since 1991, the government welfare purchasing organisations have used the contract mechanism to define the activities it will purchase and also to reduce the total cost for these services (Smith, 1996:4-5). Initially, purchasing focused upon the specification ofinputs; forexample, definitions of numbers of staff hours to be purchased. This was followed by the application of the concept of outputs which moved the focus to numbers of clients, or numbers of client-contact hours (Renouf, 1995: 10). Output purchasing in various forms characterised contracting up until fiscal 97. A change of focus to outcomes for clients is now an increasing emphasis in purchasing programmes. This latter development has provided considerable conceptual and management challenges for both purchasers and providers, not least because of the difficulties of (a) finding cJients after they have left a service to measure outcomes post-delivery and, (b) being able to identify the extent to which specified outcomes have been achieved and maintained by clients. The development of outcome reporting in the human services represents an interesting conceptual problem, and also raises some issues around service delivery. Contracts specify a certain type ofrelationship between two bodies; a funder and a provider. Achievement of outcomes introduces a third party into the contract relationship who is not actually a party to that contract. This third party is the client. In outcome-purchasing the outcome purchased is achieved (or not) by cJients, not by the provider. These outcomes can often be beyond the direct control of the provider, and often may weH be beyond the control of the client. Furthermore, for many services the active involvement of cJients in

Robyn Munford and Jackie Sanders

49

both the setting and review of goals for supportive work and also in the definition of the nature of the support work provided is a fundamental component of the service they supply. To be effective, outcome purchasing must be able to accommodate the changes that inevitably occur as interventions progress. If they are not able to respond in this way, then services may weIl find themselves in the position of having to choose between proceeding with pointless interventions with clients that fit within the outcome specifications, with ceasing work with clients at precisely the point at which the client has become engaged with the service, or with continuing to work with a dient outside the terms of the contract and receiving no funding to cover these costs. Our research highlighted the need for agencies to undertake strengths-based work wh ich is able to engage with clients over aperiod of time. It is this longer-term and flexible support work that enables clients to harness their strengths and access the resources they will need to bring about and sustain change. Changes do not take place overnight and agencies need to be able to be available to clients in ways that are hard to define in advance-as is often required in funding contracts. As Martin (1995:40) notes: "equally the complexity of social behaviour, and especially the difficulty of ascribing effect to cause, should engender a sense of humility in specifying performance." At one level there has been a clearly expressed imperative to tie up funding arrangements in precise and well-defined binding contracts so that possibilities for inappropriate use of resources, and for overpayment through lack of c1arity about what is being purchased are reduced. At another level, both purchasers and providers clearly recognise that these interactions take place within an ongoing set of relationships and if these relationships are going to work effectively there is a need for a certain openness and for an effective flow of information.

Accountability-InformationalIssues Contracting has heightened awareness of and demands for increasing amounts of information and for greater sophistication and complexity in the content of that information. In their current manifestations, contracts seek to precisely define what will be provided, how often and at what cost. In accountability terms, this translates into providers furnishing information about what they did, how often and at wh at cost. This may seem simple. However, the experience of the past 15 years suggests that collecting this information consistently within services is

50

SOCIAL WORK HEALTH AND MENTAL HEALTH

likely to be difficult, and achieving it in comparable ways across services or organisations has proved to be notoriously elusive. Continual change in accountability requirements and the related increasing specificity and detail demanded by funders in information reporting has characterised the development of contracting (Renouf, 1995: 11). Smith (1996:9) notes that the pressure on the purchaser to tighten accountability requirements will continue. A 1994 Audit Office report provided a clear illustration of this pressure: "[the Community Funding Agency needs to] continue implementing the output contracting concept including a better definition of the output to be delivered by community organisations and performance measures to hold them accountable for delivery" (cited in Smith, 1996:9). The impact of changing accountability requirements and steadily increasing quantities of information required by purchasers for accountability purposes is usually discussed as transaction and compliance costs (Renouf, 1995: 10). In the agency we studied, the development of expensive computer-based systems for recording client information was observed as an inevitab1e product of the accountability process. One of the challenges faced by the agency related to defining the information management system it should use. Another related to the need to define the basic unit of information to be collected. The concems raised by these issues reflected the fact that the type of information required by the funder was subject to change on an annual basis. A focus on developing computer-based systems was one response to the increasing amounts of detail required by the state purchaser. This development also recognised the need the agency had to provide a range of different types of accountability feedback to other state and non-state funders of the service. This laUer issue reflected the state policies of not providing the full amount of funding for services (see below) which meant that for each service, there were multiple funders and, therefore, multiple accountabilities.

Specijicity and Fragmentation The trend to purchase ever more specific "pieces" of a service has occurred as part of the environment where funders experience difficulty in knowing precisely what they need to purchase and in knowing what they have, in fact, purchased (see above). Increasing specificity ofpurchase units can be seen as one tangible way in which purchasers can exert very direct control over the ways in which their funds are used. In this sense, it seeks to control the "what has been purchased" part of the

Robyn Munford and Jackie Sanders

51

challenge. Of course, it leaves the "what is needed" part of the equation untouched. For services which are of a unitary type, or which can be easily broken down into small pieces, this approach to purchase may not present any major issues, and in fact may facilitate the task of planning and evaluating service delivery. The outstanding issue for services of this type becomes, will the purchaser purchase sufficient units to enable the agency to continue to function at a particular level. One thing which this model does not accommodate for these and the more generic providers, is the ability to develop new aspects of a service in response to perceived needs of their existing dient group. As Nowland-Foreman suggests: In particular, the increased specification of the services to be provided under contracts makes it more difficult for voluntary organisations to provide a holistic service. If an organisation is contracted to provide an employment placement service, for example, the funder is not usually interested in the organisation spending time worrying about the housing or other welfare needs of the jobseeker. However, research into what programs actually help people most disadvantaged in the labour market found that it was the multi-purpose voluntary organisations that got the best results-at times in contradiction to funding guidelines and subsidised from their own income. (Nowland-Foreman, 1995:19) The research conducted by the authors provides an example of this process of increased specification of services through the contract mechanism. The purchase of this service began in the mid 1980s and involved purchase ofthe full service as a single unit. The contract was for aperiod of three years and the annual amount was inflation adjusted. The first round of purchasing after the 1991 implementation of contracting by state purchasers did not affect many of these programmes because their three year period expired at the beginning of the 1992/3 year. The contract for 1992/3 was an annual contract and reflected the first round of output purchasing in that it specified the dollar amounts to be allocated to salaries, other expenses, capital overheads and GST (goods and services tax). This approach continued with minor modifications in 1993/4. The 1994/5 contracts reflect the beginning of output purchasing and so categories changed from salaries and expenses to the purchase of counselling, training and parenting programmes. This marks the beginning of the fragmentation of this generic service. The contract specified

52

SOCIAL WORK HEALTH AND MENTAL HEALTH

a range of service types that would be provided by the agency but did not specify the amount of each service type that needed to be provided. For this year, then, the contract still enabled the provider to deliver the full range of supportive services to clients seeking assistance. However, the contract for 1995/6 year marked the end of the agency' s ability to deliver services to clients in an holistic way. This contract specified between four and six different service types to be provided from within the contract. These service types involved different quantity, quality and output measures and so all families coming to the agency could not be assured that they would have access to the full range of services. At this point the delivery to clients and families of a generic service which was able to respond flexibly to their needs became almost impossible to provideo The brief negotiations that were conducted by the purchaser at this time indicated that the intention was still to enable the agency to provide the family support service as a whole, and in order to reflect this the provider attached to the contract a letter indicating that this was what they believed to be the case. In subsequent years the purchaser has moved to a focus upon effectiveness measures (outcomes) as the basis for contract payment and contract negotiations have involved much debate about the most meaningful way to measure this concept. The fragmentation of the service into several smaller and discrete service types has continued, and so the challenge for staff to respond to the needs as presen ted by clients and families has continued.

Partial Funding The contract system was put in place to create private sector market structures for the delivery of human services. It was expected that the application of competitive tendering and contract negotiations would ensure that the best provider would deli ver services for the best possible price. However, there have been notable instances when the purchaser will depart from the "pure market" model (Martin and Harper, 1988:23). The reasons for this are often made transparently clear. As the General Manager for the Community Funding Agency (the govemment welfare service purchaser) stated in 1994: "[it is 1 clear to me that a 'pure' contracting model would lose the volunteer contribution that New Zealand social and welfare services rely on" (cited in Smith, 1996:9). The language of the market and the use of private sector concepts to organise the delivery ofhuman services did not apparently extend to the

Robyn Munford and Jackie Sanders

53

state actually accepting the full financial responsibility which in market terms would normally be required of a purchaser: Unlike contracts for cleaning, catering, road repairs and building maintenance, social service contractors pay (italics theirs) for the privilege of winning govemment contracts. More than anything else this is the most telling demonstration that while the language is "contracting," what really counts-the money-remains firmly entrenched back in the previous regime of subsidies, grants-in-aid and "contributions." (Nowland-Foreman, 1995 :24) The use of a partial funding model which still requires accountability for the full amount of service has enabled the govemment to sec ure the delivery of a far greater volume of services under contract at a much reduced price, while at the same time restricting the ability of the not-for-profit sector to provide and be active in areas of service provision not supported by the state (Renouf, 1995:11). "The amount of funding is not explicitly linked to the full cost of service, but the quantity of outputs specified in the contract identifies the full amount of service provision of that particular type by the organisation, and the organisation is required under the contract to deli ver that full amount of service" (Smith, 1996:9). The pattern of partial funding of human services is consistent across all countries that have implemented contracting systems. For instance, Gutch (1992) has estimated that most government contracts for human services are subsidised by the providers for between 15% and 20% of total costs. He identified that this subsidisation usually operated through lower wages, longer working hours, use of volunteers and application of charitable funds to government funded projects. The use of partial funding through contracts represents a hang-over from the previous era when government provided grants-in-aid or subsidies to contribute toward the cost of running not-for-profit services. However, in the "grant-in-aid" era accountability was not tied to the delivery of the full service, and organisations were allowed flexibility to define the precise way in which they would structure and deliver their services. In order for not-for-profit providers to maintain financial viability, they must apply funds raised in either the public domain (i.e., from donations and other fund-raising) or through the sale of goods and services. The willingness of public and private charitable funders to continue to subsidise government service delivery is as yet untested. Indeed, organisations such as the Lottery Grants Board, which provides

54

SOCIAL WORK HEALTH AND MENTAL HEALTH

significant sums of money for the activities of the not-for-profit sector, identified in 1997 that it would not continue to fund services that it considered to be part of the responsibility of the govemment through the health sector. Many writers have discussed the effect of partial funding policies and in particular have highlighted concems about not only the manifest inequity in such systems, but also the way in which they skew the nature and activities of the not-for-profit sector. Wo\ch (1990) discussed the transformation of the not-for-profit sector into a "shadow state apparatus" and raised the concern that this had the potential to seriously limit the extent to which the not-for-profit sector could innovate and playa roIe in the creation of positive social change for clients and in communities. Nowland-Foreman (1995:3) talks of the not-for-profit sector as including not only the delivery of human services per se, but as an "essential part of the fabric of civil society" because of the role these organisations play in developing and maintaining citizen participation. He is referring to the important role that community-based groups and organisations play in providing the "social cement" which binds communities together. The activities of the not-for-profit sector, in addition to providing social and supportive services, provide citizens with ways of identifying with and belonging to their communities. The net result of shackling these organisations to the state through rigid contracts which provide only part of the cost of service delivery, may weH be the 10ss of the very qualities of communities the state seeks to maintain. The General Manager of the Community Funding Agency's wish to maintain the volunteerism which characterises the sector may weil become an unattainable goal if these policies are pursued. One of the reasons given for partial funding is that too much govemment funding will suppress local voluntary effort. However, there is now evidence that government funding actually encourages an increase in voluntary effort. Leat (1986) identified that there was a three-fold multiplier effect of govemment funding in generating community resources. Information such as this, provides empirical support for the arguments that there is an important and dynamic link between the resourcing which govemments can provide for supportive services and that which communities themselves are willing and able to give. It suggests that, rather than retreating into a policy cave, governments should continue to be active within local communities supporting and extending the range and depth of service-related activities.

Robyn Munford and Jackie Sanders

55

Funding for the family support service which we studied was originally set at 100% of costs. The proportion of total costs covered by government contracts have steadily reduced since the introduction of contracting. The agency is still held accountable for the costs of deli vering the total service. This has placed the agency in the position of having to raise funds from the community and the corporate sector to deliver a service which it is required to provide by government. The charitable sector is extremely small in New Zealand and, as elsewhere, the competition for the charity dollar is intense. Recent market research shows clearly that the public is increasingly unwilling to give funds to support the delivery of services and activities which are part of government responsibility. It is likely that this service will become increasingly difficult to raise funds for in the future.

CONCLUSION The international evidence would suggest that the use of contracting mechanisms for funding human services is here to stay. It is important to be clear that previous systems for funding the delivery ofhuman services were not necessarily any better, and that the current system could easily be replaced by something infinitely worse. In the development of the current funding systems the government identified the potential benefits of contracting as including: more seeure funding for agencies and greater flexibility and enhanced effectiveness (Nowland-Foreman, 1995). However, it is clear that these suggested benefits have not been realised and that in fact the agenda has more probably been to reduce state expenditure by progressively moving responsibility for service delivery onto the community through the not-for-profit sector (Kettner and Martin, 1996). The not-for-profit sector can respond to these challenges. Bernstein' s (1991) research identified that one of the ways providers can respond is to view the process of contracting as agame. Providers can and should apply themselves creatively to the process of seeuring resources and should reserve the maximum possible energy for the users of their services and the communities they serve. Providers need to avoid being captured by the same focus as purchasers in terms of looking only at the process for transferring funds. They should also maintain a focus on innovation and development and continue to develop their ability to use the contract system to the maximum. This includes requiring funders to meet the full extent of their responsibilities in terms of the contracts

56

,

&. community facHs

10 Follow protocoI developed

9 Make links with 1ocI1.

a Make eontact with r.hab

7 Advocate for fams with hospital and oommunity

Community

6 Ensure tam. ed . in posl-disdlarge c.re needs

5 Aasis1 fan;

.. Counsel1i'lg to preJ:*re

3 Ensure patient and famlly invo!ved in p1annlOQ

2 Support tarn to enSYr8 apprOprilte ptan is rnade

1 Ex;Möain avaiiabie options & I"npications to fam

Family

Cischarge Planning Func:tions

1 1 1 1 1 1

11 1 1 1 1 '1 ' 1 1 0 1 0

1 1 1 1 1 0

1- 1 11 ,. 1 1', 1 0 0 1 0

0 0 0 0 0 0

0 0 0 0 0 0

0 0 0 0 0 0

1 1 1 1 0 1

1 1 1 0 0 0

0 0 0 0 0 0

1 1 0 1 0 1 1 ci 0 , 0 1 1 1 1 '1 1 f 0" 1'1 1 1

1 1 1 1 1 0

~

OOOOOOOOOOOOOOOOOOOOOOOOOOOO

1:

000000

11,111 ' 1 l' 1 i f 1 1 00;11 0 "1 10' 01 1:;1 000001 000000 000000 000000 000000 000000 000000 000000 000000 000000

1 '1 1 1 11 1 0 1 ;1 1 0 1 1 1 0 1 ·1 1 0 '1 .1 0 0 0000 o1 1 0 0000 0000 0000 0000 0000 0000

0 j 1 1 ,, 1 0 ., . 1 1 1 01 1 1 1 0 1 1 1 :, 0 '1' 1 1 1 0 1 0 1 1

65% 1 1"1 1 0 ..1 0 1. 1 · 1 ,1 1 1 ',1 1 1 1 1 j 1 f 0 ,"1 0 1 1 70% 1 \ 1 0 ' . '1 0 1 1 0 " 1 1 1 1 1 ,1 1 1 1 0 1 0 0 0 0 0 :1 45% 0 , . 0 0 0 '1 0 0 0 0 0 1 1 1 l' 1 -1 1 0 1 0 0 0 1 0 0 0 ·1 45% 0 0 0 0 0 0 0 j 1 0 ;1 0 1 - ~ 1 0 '0 1 'l 1 0 0 01 0 0 O -~ 38% 0100000100001 ·" ' 0 ' 1 0 0 0 0 1 0 0 ' 1 25% 0 1 0 0 0 0 0 0 0 0 0 0 1 Ci 1 1 0 1 1 0 0 0 0 1 0 0 0 1 18% 0 0 1 0 0 0 . 1 0 0 0 , 1 1 0 1 0 0 1 0 0 0 0 0 0 0 0 0 0 ISO!. 0 0 0 0 1 0 0 0 0 0 0 0 0 0 1 0 0 1 0 '1 1 0 0 0 0 0 0 0 8% 0 0 0 0 0 0 0 0 0 0 0 0 1 0 1 1 0 0 0 0 0 0 0 0 0 0 0 0 5% 0 1 0 0 0 0 0 0 1 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 5% 0 0 0 0 0 0 0 0 1 0 0 0 1 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 ft OOOOOOOOOOOOO010000000000000 ft OOOOOOOOOOOOOOOOOOOOOOOOOOO'

1 1 1 1 1 0

1 0 1 1 1· 1 11011':1 11011", 000000

0 t 0 l' 1 0

1 :1 1 0 11 1 0 , 0 1 0 0000

1 1 0 0 0 0

70% 1 1 1 1 0 ,1 0 1 1 01 1 1 '1 1 11 1 1 1 0 0 0 1 0 0 1 1 48% 00010000000,, -,11 '11,"100000001 30% 0 0 0 0 0 0 0 1 1 0 0 0 0 0 0 0 0 0 0 1 0 1 0 0 0 0 0 1 ft OOOOOOOOOOOOOOOOOOOOOOOOOOOl

1 0 0 0 0 0 0 1 , .1 O· 0

101101 111101 111101 100100 110 '101 o 0 '1 1 0 1

0 0 0 0 0 0 0 0 0 0 0 0

1 1 f 1 0 0 1 1 i 0 1 0

12 134 156 171 19111 111 11 11111 12 12 122 122 12 12 :22 ,3 :3 3 3 13 13 13 13 334 0 1 2 3 -4 ' 5 16 7 i l . 10 1 1 2 3 . 15 8 7 1' 9 0 ' 1 2 ! 3 4 1 ! 6 17 1 19 10

68% 1 68% '1 58% 1 55% 1 53% 1 35% 0

1%

TABLE 3. Discharge Planning Functions

170

SOC1AL WORK HEALTH AND MENTALHEALTH TABLE 4. Factor Analysis Component

Function Evaluate & monitor the ellectiveness of DP process. Follow-up patient and services to determine outcome. Ensure family is educated in post-discharge care needs.

1 2 .872 .832 .775

3

4

5

6

Co-ordinate or actively participate in discharge plan- .589 nina team.

.859 .812 .660 .435 .858 .641 .634 .439 .602

Explain available options & implications to family. Support family to ensure appropriate plan is made. Ensure the patient and family are involved in plannina. Make links with federal, state and local resources. Make contact with rehab and community facilities. Maintain flexibility to respond to changes in need. Develop discharge plan using info from patient, family & professionals.

.502

Assist family to implement discharge plan. Counselling to prepare patient and family for I post-discharge.

.461

.709

.422

.654 .612

Confer and liaise with a multi-disciplinary team. Advocate for the family with hospital and communitv. Communicate progress of discharge plan to the health team. Provide discharge planning services on request.

.451

.772 .406

Develop future admission plan. Develop stall response planning.

.714 .898 .463 .717

ASSESSING CASE COMPLEXITY Case complexity could also be determined by examining the cases in relation to the hospital system. The use of resources in each of the forty cases was determined. The resources examined were contact and non-contact time spent by the social work discharge planner, the length of hospital stay, and the rate of readmission. These were then correlated with intensity of function requirement (the number of functions carried out in each case), and with an assessment and rating of the complexity of each case by one of the social work discharge planners (on a three point grading: not complex, complex, highly complex).

Jackson et al.

171

TABLE 5. Discharge Planner Functions: Results of Factor Analysis Group 1: Quality Improvement o o o

o

Evaluate and monitor effectiveness of DP process. Foilow-up patient and services to determine outcome. Ensure family is educated in post-discharge care needs. Co-ordinate or actively participate in discharge planning team.

Group 2: Family Focus o o o

Explain available options and implications to family. Support family to ensure appropriate plan is made. Ensure the patient and family are involved in planning.

Group 3: Planning and Resource Identification o

o o o o

Make links with federal, state and local resources. Make contact with rehab and community facilities. Maintain flexibility to respond to changes in need. Develop discharge plan using info from patient, family & professionals. Assist family to implement discharge plan.

Group 4: Implementation of Discharge Plan o

o o

Counselling to prepare patient and family for post discharge. Confer and liaise with a multi-disciplinary team. Advocate for the family with hospital and community.

Group 5: Facilitation o o

Communicate progress of discharge plan to the health team. Provide discharge planning services on request.

Group 6: Organisational Focus o

o

Develop future admission plan. Develop statt response planning.

Sodal work discharge planner time, length of hospital stay, and intensity of function usage all correlated highly with the expert's assessment of case eomplexity suggesting that these are eharaeteristics of ease eomplexity in a paediatric eontext. This is demonstrated in the ease example outlined earlier whieh was classified as highly eomplex by the diseharge planner, required 17 Diseharge Planner funetions, whose length of stay was four times that of the alloeated DRG, and had the highest number of eontaet and non-eontaet hours of all the eases (see Table 6). Having many admissions did not eorrelate with the other eharaeteristies of eomplexity. It should not be presumed that paediatrie eases with

172

SOC1AL WORK HEALTH AND MENTALHEALTH

TABLE 6. Case Complexity Correlations Expert Exoert

1.000

Intensity .757**

Total SW Time Spent

Number of Admissions

.805**

.672**

.107

.741 **

.410**

.232

.606**

.154

Intensitv

.757**

Total SW Time Soent

.805**

.741 **

Long Length of Stav

.672**

.410**

.606**

Number of Admissions

.107

.232

.154

1.000

Long Length of Stay

1.000

1.000

.165

.165

1.000

**p< .01

frequent admissions are not complex or in need of discharge planning, but rather that it is not necessarily a common characteristic in complex cases. This may be on account of the paediatric context where many complex cases are inpatient from birth or are due to sudden trauma such as an accident. The case example cited earlier had only one admission.

IMPLICATIONS AND CONCLUSION In this first phase of the study we determined the functions required of the social work discharge planner in a paediatric context, and estabIished that a diversity of functions is required in cases complex to discharge. We have also noted some of the characteristics of these cases. The development of risk screening tools for adult acute care can draw upon a large body of research and practice literature (Corrigan and Martin, 1992). This is not the case in the paediatric area. This project produced information that can be used to advance paediatric discharge planning, and lead to the development of a paediatric complex discharge planning risk screening tool. Thus the significance ofthis project lies in the entire research process, which sees the development of new information in three areas; the social work discharge planner role in a paediatric context, the factors contributing to discharge case complexity in a paediatric context, and the development and implementation of a risk screening tool.

.Tackson et al.

173

The next phase developed a list of potential risk indicators categorised according to organisational, medical, and family and community factors. From this a scale was devised to determine which were the strongest indicators for delayed discharge. The development of this scale involved, among other things, social workers in the Department making paired rankings of all the items against each other ("If these two factors were present in a case, wh ich one, generally, would you consider to have the most impact on ability to discharge"). The development of this risk screening tool, ideally able to be administered by social workers or nurses, will enable discharge planners and staff undertaking initial assessments to identify children at risk of long stay as early as possible. To our knowledge this would be the first paediatric specific risk screen of its type. The screen will provide complexity ratings and mayaiso be used to predict and quantify those cases that will require additional hospital resources. This also has the capacity to extend the current DRG funding system beyond medical diagnosis alone, including additional funds based upon case complexity created by family and community factors. REFERENCES Basser, S., Kulinskaya, E., Adam, W.R., Kovco, K., & Davey, P. (1994). Age related length of stay and DRG based hospital funding. Conference Proceedings: The Sixth National Casemix Conference. August. Hobart. Becker, N. & Becker, F. (1986). Early identification ofhigh social risk. Health and Soda! Work, 11. Berkman, B., Walker, S., Bonander, E., & Holmes, W. (1992). Early unplanned readmissions to social work of elderly patients: Factors predicting who needs follow-up services. Soda! Work in Hea!th Care, 17, 103-119. Blaskett, B. (1994). Screening children at risk of extended hospital stay for non-medicallnursing factors or social complications, 1-111. Brooten, D., Kumar, S., Brown, L.P., Butts, P., Finkler, S.A., Bakewell-Sachs, S., Gibbons, A., & Delivoria-Papadopoulos, M. (1986). A randomized clinical trial of early hospital discharge and horne follow-up of very-Iow-birth-weight infants. The New Eng!and .Tournai of Medidne, 315, 934-939. Bryant, K., Davis, c., & Lagrone, C. (1997). Nursing education. Streamlining discharge planning for the child with a new tracheotomy. Journal of Pediatric Nursing: Nursing Care ofChildren & Families, 12, 191-192. Chinmayee, c., Beallor, G., & Pelle, D. (1988). A Multidisciplinary Approach to Continuing Care Planning. In P. Volland (Ed.), Discharge P!anning: An/nterdisciplinary Approach to Continuity ofCare. Maryland, National Health Publishing.

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Cook, c., Chadiha, L., Schmidt, B., Holloway, J., & Satterwhite, J. (1992). High social risk screening mechanisms: Patient characteristics as predictors of sodal work utilization in the VA. Social Work in Health Care, 16,4,101-117. Corrigan,1. & Martin, J. (1992). Identification offactors associated with hospital readmission and development of a predictive model. Health Services Research 27(1), pp. 81-101. DeWitt, P.K., Jansen, M.T., Davidson, Ward, S.L., & Keens, T.G. (1993). Obstac1es to discharge of ventilator-assisted children from the hospital to horne. Chest, 103, 1560-1565. Dokken, D.L. & Sydnor-Greenberg, N. (1998). Family maUers. Helping families mobilize their personal resources. Pediatric Nursing, 24, 66-69. Hamilton, B. & Vessey, J. (1992). Pediatric discharge planning. Pediatric Nursing, 18, 475-478. Huddleston, K.c. & Ferraro, A.R. (1991). Preparing families of children with gastrostomies. Pediatric Nursing, 17, 153-158. Jackson, A.c. (1998). Academic-Agency Practice Research Partnerships. Paper delivered at 2nd International Conference on Social Work in Health and Mental Health, Melbourne, January 12-15, 1998. Kotagal, U.R., Perlstein, P.H., Gamblian, V., Donovan, E.F., & Atherton, H.D. (1995). Description and evaluation of a program for the early discharge of infants from a neonatal intensive care unit. The Journal ofPediatrics, 127,285-290. Leach, S.c. (1991). Continuing care for the near-drowning child. Critical Care Nursing Clinics ofNorth America, 3, 307-323. Parker, L. (1991). Discharge planning and follow-up care: The asphyxiated infant. NAACOGS Clinical Issues in Perinatal & Womens Health Nursing, 2, 111-159. Pediatrics Project (1997). Pediatrics Project # 2: Children's hospital's strategies for serving the indigent population, 1-14. Proctor, E.K., Morrow-Howell, N., Kitchen, A., & Wang, Y. (1995). Pediatric discharge planning: Complications, efficiency, and adequacy. Social Work in Health Care, 22, 1-18. Sakzewski, J., Ziviani, J., & Swanson, C. (1996). Impact of early discharge planning and case management on length of hospital stay for children with acquired brain injury. Australian Occupational Therapy Journal, 43, 105-112. Sampson, L.J. (1990). The development of a discharge planning index far use in a pediatric acute burn unit. Journal of Burn Ca re Rehabilitation, 11, 365-371. Snowdon, A.W. & Kane, D.J. (1995). Parental needs following the discharge of a hospitalized child. Pediatric Nursing, 21,425-428. Victorian Department of Health and Community Services (1995). Multi Purpose Services: An innovative aged and health care model for rural Victoria. Australian Government Publishing. Volland, P. (1988a). Discharge Planning: An Interdisciplinary Approach to Continuity ofCare. Maryland, National Health Publishing.

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Volland, P. (1988b). Evolution 01' discharge planning. In P. Volland (Ed.), Discharge Planning: an interdisciplinary Approach to Continllity ofCare, Maryland, National Health Publishing. Wolock, I. & Schlesinger, E.G. (1986). Social work screening in New Jersey hospitals: Progress, problems, and implications. Health and Sodal Work, 11, 15-24. Worthington, R.e. (1995). Family maUers. Effective transitions for families: Life beyond the hospital. Pediatric Nllrsing, 21, 86-87.

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The Development of an Australian National Classification System for Social Work Practice in Health Care Rosalie Pockett, PhD, BSW Bruce Lord, MSW, BSW (Hons) Jane Dennis, BSW

SUMMARY. Australian Social Work, over recent years, has been challenged to develop a standardised and ace urate classification system for social work interventions. The need for such a system arose through changes in funding arrangements based on the Diagnosis Related Groups (DRGs) treated within hospitals. In Australian hospitals, the mix 01' DRGs treated became known as its 'casemix. ' These new funding arrangements made it necessary for Social Work to classify and measure activity with each patient to ensure continuing resource allocation to social work services in hospitals. Anational Casemix Network was formed Rosalie Pockett is affiliated with the Westmead Hospital, Sydney, Australia. Bruce Lord is affiliated with The Children's Hospital at Westmead, Sydney, Australia. lane Dennis is affiliated with The Prince of Wales Hospital, Sydney, Australia. Address correspondence to: Rosalie Pockett, Director of Social Work Services, Westmead Hospital, Westmead 2145, Sydney, Australia. The authors wish to acknowledge all members of the Casemix Network who contributed to the classification system discussed in this paper. Their appreciation is extended to Jauet Anand, Helen Cleak, Bill Edwards, lill Feltham, Ruth Graham, Mary Haire, Jan Hinson, Lesley Mineall, He1en Murray and Mary Lee Sinclair-Vogt. [Haworth co-indexing entry note]: "The Development of an Australian National C1assitication System for Social Work Praetice in Health eare." Pockett, Rosalie, Bruee Lord, and Jane Dennis. Co-published simultaneously in Social Work in Health Care (The Haworth Social Work Practice Press, an imprint ofThe lIaworth Press, Inc.) Vol. 34, No. 1/2, 200!, pp. 177-193; and: Social Work Health and Mental Health: Practice, Research and Programs (ed: Alun C. Jackson, and Steven P. Segal) The Haworth Social Work Practice Press, an imprint of The Haworth Press, Inc., 2002, pp. 177-193. Single or multiple copies of this article are available for a fee from Th" Haworth Document Ddivery Service [l-800-HAWORTH, 9:00 a.m. - 5:0() p.m. (EST). E-mail address:[email protected]).

© 2001 by The Haworth Press, Inc. All rights reserved.

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under the auspice of the Australian Association of Social Workers to develop a c1assification system. The Network worked collaboratively with other allied health professions to produce a generic framework for professional activities and also developed a c1assification of social work interventions. These activity c1assifications have been incorporated into procedure coding in Australian hospitals. The challenges associated with casemix funding required Social Work to address a number of philosophical and methodological issues related to c1assification of professional activities to ensure an outcome that recognised the unique contribution of Social Work to health care. IArticle copies available for a fee fram The Haworth Document Delivery Service: 1-8oo-HAWORTH. E-mail address: .05], although all women who left the group did score over 12 on intake. The major reasons for women failing to complete the group were: confidentiality issues (2), left the district (1), and suspected poor intake criteria, e.g., siek children, drug abuse (2). Thus, despite our small numbers, our short-term follow-up data suggests our program has been successful.

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Rural-Urban Comparisons: Although our data is limited and we have not matehed the subjeets, we did attempt to eompare our intake data with that of other urban groups. In looking at the initial groups run by Williams and Seale and keeping in mind the diffieulties inherent in this eomparison proeedure, it is interesting to note that only 77% (n = 61) of the members of the urban groups "registered a score indieating presenee of a depressive illness pre-program" (Williams & Seale, 1989b, p. 7). The remaining 23% of the women joined the program for "preventative reasons (e.g., previous episodes of postnatal depression)" (Williams & Seale, 1989b, p. 7). In the rural group, none of the women were there for preventative reasons. From this Iimited comparison, there does seem to be some evidence to concur with Williams' suggestion during supervision that our groups were more severely depressed on intake. We eredit this to the long waiting period between groups. The group is run only once or twice a year due to the sm all number of women who would benefit from a therapeutic group program within easy access to Bathurst. Beside referrals to a psychiatrist, we have few other clinical postnatal depression resourees in the rural area. The community psychology and social work services have long waiting lists for individual work, although supportive measures are provided by community nurses. Referral to Tresillian Family Care Centres or specialist postnatal depression units means transferring the women to services that are far away from the support of family and friends. This lack of options does not oecur in the Sydney area. Therefore, many women in the rural group had been dealing with postnatal depression with Iimited treatment for a long time. It is reasonable to assume that failure to access treatment can lead to the depression worsening-we believe this was reflected in the higher levels of depression at intake (39% > 20 on the EPDS). Additionally, we tended not to aecept women into our group because they seemed too well for the type of group we were running. This criterion did not seem as evident in the urban study.

RURAL AND URBAN DIFFERENCES IN GROUP FORMATION AND GROUP PROCESS In this analysis, Hartford's (1981) model of group work with its emphases on the pre-group stage (private, public, eonvening) will be used. Although not all incidents reflect the c\arity of group stages, the use of this structure does represent the leaders' assessment of where the group was performing when the incidents occurred.

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Stage One: Pre-Group Private: The need for reflection during the pre-group private phase was acknowledged as an important aspect of group planning early in social group work (Hartford, 1971). Yet in preIiminary discussions as co-leaders, despite our rural residence and knowledge of rural group work (Lane, Fenton, & DeMicheIe, 1988), we still ignored the rural setting ofthe group and the unique rural characteristics of our potential dients. Instead, we surged headlong into committing to a group training program for postnatal depression developed for urban Sydney. We did not consider the possibility that the urban model may not fit as easily into a rural practice. Thus, while our groups have apparently been successful, our pro gram may have been completely different in nature had we begun by considering the unique features of our context. The pre-group private stage is one of the most important when developing rural services since the worker is usually committing to a new service and a high level of effort is needed (Regan, 1997). This was the case in the establishment of our group. For although support groups for postnatal depression had been run in Bathurst, a therapeutic group program had not been attempted. It had not been run in the past because of a lack of training of workers, distance between population centres and a purported lack of dient numbers. Hence the model was seen as 'imported' and not necessarily a 'good fit' for Bathurst. With hindsight, in this pre-group stage we needed to prepare for the inertia and patterns of resistance that we faced when we went public. This would have helped us to be ready for some very negative reactions from a few of the service providers in the community when we attempted to recruit women for our group. We believe that in this stage, rural workers need to be particularly aware of the fact that a rural practice is unique and needs to be "a community aware practice" (Martinez-Brawley, 1982 in Crawford, 1997, p. 29). As co-Ieaders,we failed to give sufficient attention to this awareness in oUf discussions at this stage. Pre-Group Public: One of the first problems we encountered, which was decidedly different from our urban counterparts, was the referral of a sufficient number of women in order to run the group. We received only two referrals in the first four months of advertising our group. Both these referrals came from one early childhood nurse despite the fact that we had advertised the group in community health centres, supermarkets, women's rest centres, radio, newspapers, playgroups, doctors' surgeries and day care centres. We believe this reflected the fact that at that time, there was a limited identification and management plan for

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women with postnatal depression in the central west region of NSW (NSW Department of Health, 1993). When no services are provided, need tends to be submerged. This was a particularly trying time for us as health professionals, and required a dogged commitment on our behalf to persist in the face ofthe initially low referral rates. We also had to accept an initially small group size of seven as the beginning step in the process of establishing the program. With hindsight, our estimates of the extent of the problem have been borne out and the program now has a high referral rate and several groups are run each year. Although we canvassed doctors during the twelve months it took to establish our first group, we received no referrals from them. This changed by the second group when we accessed the General Practitioner's Association via their newsletter and possibly derived some benefit from a training program run by Dr. Bryanne Barnett, a Sydney-based psychiatrist and author of 'Coping with Postnatal Depression' (1991). Her program trained rural doctors on the identification and treatment of postnatal depression. An unforeseen problem was the auspices of the program. This was the first program run out of the Psychological Services Centre of the University and as such, was viewed with suspicion by the community and mental health services. Also, originally the group was advertised as being a self-funding program in a community that had little experience with user-pays mental health. We have been largely unsuccessful in making the program self-funding and in its fourth year, the program remains a free service supported by university, state and voluntary donations. Another blockage to the establishment of the group was the women themselves. They showed a strong reluctance to accept the fact that help was needed. There was an inherent embarrassment about not being able to cope as a mother. Although this has been identified in studies of new mothers in Australia (see Brown et al., 1994), in discussions among the authors, this ideology seemed to be much more prevalent in the rural than the urban area. We also encountered a problem with a local radio station that focused on some of the very rare occurrences associated with some postparturn psychiatric disorders (e.g., a mother harming or killing her child), with the accompanying comment from a prominent citizen that postnatal depression did not exist in our rural community. We were unable to get on to the radio station to counter these views, and they did little to encourage women to acknowledge they were having difficulties and accordingly seek help.

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Our experiences suggest that there is a need to educate the community about the myths of motherhood. This reinforces the idea that there is a need for politicisation in a rural practice (Martinez-Brawley, 1982, in Crawford, 1997), not only of the worker but of the community. Once we were able to interview women for the group, we used the pre-interview as a source of demystification of postnatal depression, motherhood and group therapy. In many ways our lack of access to the doctors in the community and to the women themselves was an indication that we had not sufficiently respected the unique nature of the rural community. There are four tenets of rural social work expressed by Martinez-Brawley (1982 in Crawford, 1997, p. 29): A rural practice is "generalist in nature" where the worker conceptualises the whole rural environment; the work will be "conscientising" and politicising for the practitioner; the practice will be community aware; and it will be respectful of local culture and local determination. Having now established a successful rural group therapy program, we would advise that a fifth tenet be added to rural social work: It simply takes more time. Convening: In convening the group there were several issues that affee ted the group dynamies. The initial lack of sufficient numbers led to a heterogeneous range of levels of depression, social background and status. We believed this was a factor that needed to be identified as influencing the group dynamics rather than one that negatively affected the group (Gladding, 1995). AIthough distance travelled may not be a significant issue with regard to time between rural and urban venues, access to travel by car was crucial in order for women to reach our group. One group of women travelled 45 minutes (50 kms) to reach the group. They did not attend several times because snow blocked the road. Transport concems also interact with another area of concem: childcare. While availability of day care is certainly not a uniquely rural issue, putting an infant (and often other pre-school-age children) through two 45 minute joumeys to access our group is a major obstacle. Other clinicians/researchers have commented on how hard it is for new mothers to get to a weekly group session (Meager & Milgrom, 1996). Therefore, it is surprising that our drop-out rate was reasonable given the added pressure of long car trips with young children. Yet despite these obstacles, the groups did get under way. Stage Two: Group Formation: This stage is about establishing trust. Although confidentiality and trust are major issues in any group, in a sm all town they become paramount. One of the issues we had to deal

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with was the fact that the group leaders and the members ran into each other, or their partners, or their friends regularly: at restaurants, at work, at school functions and at one of only three grocery stores in the town. Although we have heard colleagues discuss this difficulty in suburban areas, it is more frequent in the rural area. There needs to be a balance between good manners, a feature of the rural culture, and professionalism. Discussing this in the beginning of the group, making it overt, helps establish ground rules and hence trust. Stage Three: Integration, Disintegration, Conflict, Reintegration: In this stage of the group the boundaries are defined and during this process another difference was noted. At one point, one of our group members showed up on the front door step of the group leader' s horne. Ethics that dictate separation from the personal and the professional role and the idea that work should be done within the group setting were challenged. Obviously, limits need to be discussed but common courtesies also need to be adhered to. The group leader in this case chose to invite the group member in for a cup of tea while also pointing out the reasons why this was not beneficial to the group. Again, this raises the need for considerable attention to be given to establishing ground rules at the beginning of the program. In the case of small communities, it might even be wise for group leaders to role play scenarios such as we have discussed here, in order to make it c1ear to participants what issues are involved, and why it is important to keep the 'group work' for the group. An incident occurred in one of the groups that highlighted a c1ash of cultures. In response to what we, as co-leaders, perceived as gentle challenging, one of the mother's said: "We've given you enough of our private lives, you won 't be happy until we run naked through the centre of town." Although there are many explanations for her reaction (e.g., conflict, confidentiality, fear of disc1osure, group ownership), we now acknowiedge that within groups there are stricter boundaries on self-disc1osure in the rural area. There are c1early written rules about what is considered 'family' and therefore 'private' in country regions. Stage Four: Group Functioning and Maintenance: Throughout the groups our supervisor, who was Sydney-based, frequentIy commented on the strength of the myths of motherhood in our groups. Reflecting on comments like "I shouIdn't need heIp," and "My husband can't be expected to look after the children when I'm at horne all day not working," she compared these comments to those of her practice ten years ago in Sydney. Her assessment was that country women have stronger masks. She said: "All mothers are copers, but country mothers cope with much worse." Compounding these rigid beliefs is the fact that opportunities to

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engage in social support that could challenge these myths are particularly hard to come by in rural regions. Interestingly, we get a good attendance at the evening group for partners. In discussions with urban-based colleagues, our attendance rate is far superior. One possible explanation for this phenomenon is that these men have an urgent need to know why they have not been able to create the great Australian dream of bringing up a family in rural Australia. There was no doubt in our minds that many of the women in our groups held on to the mythology that emphasises perfection in mothering and the higher ideals offamily life in rural Australia. All the women in our groups had no difficulty verbalising the mythology of motherhood and secondly, in identifying the unrealistic nature ofmany ofthese beliefs. However, they were also very reluctant to try on new ways of thinking, even within the 'safe' confines of the group situation. Given the strength ofthis mythology in the community, there mayaiso be few opportunities to get positive feedback when the women test these new beliefs and behaviours outside the group. We believe that this phenomenon raises several issues for both clinicians and researchers. There is clearly a need for social research to identify the mythology of motherhood and family life in rural communities so as to inform clinicians working with parents and families in these regions. Moreover, clinicians running group programs may need to give consideration to giving more emphasis to the cognitive-behavioural aspects ofthe intervention. Follow-up sessions might also be usefully employed in order to provide on-going feedback for more realistic ways of thinking and behaving in relation to motherhood. Stage Five: Termination: Despite the concems raised in the preceding section, one of the most exciting aspects of working with women surrounded by a culture that supports the myths of motherhood, was to see what change did occur in their attitudes and beliefs about parenting. By the conclusion of the 10 weeks, many of the women sought to become more vocal in terms of demystifying the myths of motherhood and specifically, those related to postnatal depression. They organised talks at play groups, spoke on the radio, and pledged that other women would not be so alone. The men in the partners' group also spoke about the need to remove the perfectionist mythology surrounding family life that was held on to by many of their male friends, and of the benefits of forums such as the one they were attending. This may not be any different to what happens at the termination of urban groups. However, in the case of rural communities, it may help to challenge some of the strong rural myths and provide social support for change amongst other men

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and women experiencing difficulties. We noted that the support within the group may have been the strongest impetus for change, rather than the skills taught by the respective health professionals. We believe many of our clients took away the belief that talking about 'family' problems with other people in the same situation under the guidance of a health professional, can be a fruitful endeavour. For us, this is one step towards breaking down some of the rural myths about wh at constitutes appropriate help-seeking behaviour.

CONCLUSION In concluding, it must be pointed out that although we have been describing the implementation of a group therapy pro gram for women with postnatal depression in rural NSW, we have not mentioned the specific problems faced by Aboriginal women in rural communities who may be experiencing emotional difficulties in the postparturn period. The NSW Health Department Discussion Paper on Postnatal Depression Within Aboriginal Communities (1993/1994) highlights that postnatal depression is a significant problem for many Aboriginal mothers and that culturally appropriate services are urgently needed. The points that we raised conceming socioeconomic status, and the existence of other life stressors make this a particularly compelling issue. However, it also presents a uniquely different cultural context from the largely white, Anglo-Celtic picture of rurallife that we have referred to in this article. Thus, despite the urgent need for improved detection and treatment of postnatal depression within Aboriginal communities, our findings cannot be generalised to these women. However, on the basis of the preliminary data collected so far, our group therapy approach to the treatment of postnatal depression in this regional centre appears to have been successful: The women did reduce their levels of depression, they did begin to challenge the myths of motherhood, and they maintained their own rural identity. Perhaps more importantly, the group work approach provides a model of support for changing thinking and behaviour that these women and their partners can take out into the community. In this way they can offer support and feedback for other new parents faced with unrealistic notions about parenting, family life, and how to obtain help when 'family' goes wrong. It was very evident to us as group leaders that adherence to the myths of parenthood, whether a cause or symptom of postnatal depression, presents a particular stumbling block to the psychological

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well-being of many new parents. A program that can address these issues, both at the individual and sociallevel, is to be highly valued. One of the major goals of this paper was to investigate the issues that emerged in importing an urban-developed model for treating postnatal depression for use in rural regions. Our review of the literature on urban-rural differences in mental health, particularly postnatal depression, and our own clinical experiences have shown that simple answers to this issue are not possible because ofthe difficulty in operationalising what is meant by the term 'rural.' However, we feIt that some issues were important to highlight and need to be investigated furt her. Of particular importance is the need to examine whether or not rural or urban women are at increased risk for depression in the postpartum period as a consequence of greater exposure to the risk factors for depression. Certain similarities also emerged in our comparison of urban and rural groups. The ubiquitous role played by cultural beliefs about mothering and family life is one that cannot be ignored. Although we suggested there are some differences in the nature of these beliefs between rural and urban parents, the potentially damaging nature of these myths should not be understated. The lesson for clinicians and researchers from our work is that considerable attention needs to be given to finding ways of assisting mothers (and fathers) to find other ways of thinking about parenting that have more utility than the currently perfectionist ideology. We suggested that one way of doing this is to place more emphasis on cognitive-behavioural interventions, to add follow-up sessions to programs and to recognise that there are differences in group work in the country. However, clearly other ways of addressing this problem might fruitfully be investigated, keeping in mind that the advantage of a group work approach to the problem might be the potential to influence the cultural climate beyond that engendered in the group work room itself.

REFERENCES Adam, Z. (1995). A community group for depressed mothers and its relation to health visiting. In J. Trowell & M. Bower (Eds.), The emotional needs ofyoung children and theirfamilies: Using psychoanalytic ideas in the community (p. 167-174). London: Routledge. Amato, P. R. (1993). Urban-rural differences in helping friends and family members. Social Psychology Quarterly, 56,249-262.

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Astbury, 1., Brown, S., & SmalI, R. (1994). Birth events, birth experiences, and social differences in postnatal depression. Australian Journal of Public Health, 18, 176-184. Barnett, B. (1990). Postnatal depression or 'failure-to-thrive' mothers. Modern Medieine ofAustralia, March, 64-72. Barnett, B. (1991). Coping with Postnatal Depression. Melbourne: Lothian. Beck, C. T. (1993). Teetering on the edge: A substantive theory of postparturn depression. Nursing Research, 42, 42-48. Beck, C. T. (1996). A meta-analysis of the relationship between postpartum depression and infant temperament. Nursing Research, 45, 225-230. Blazer, D., George, L., Landern1an, R., Pennybacker, M., Melville, M., & Woodbury, M. (1985). Psychiatrie disorders: A rural/urban comparison. Archives of General Psychiatry, 42,651-656. Brown, S. Lumley, J., SmalI, R., & Astbury, J. (1994). Missing voices: The experience ofmotherhood. Melbourne: Oxford. Cooper, P. J. & Murray, L. (Eds.). (1997). Postpartum depression and child development. NY: Guilford. Cox, J. L., Connor, Y. M., & Kendall, R. E. (1982). Prospective study ofthe psychiatrie disorders of childbirth. British .Tournai of Psychiatry, 140, 111-117. Cox, 1. L., Holden, J. M., & Sagovsky, R. (1987). Detection of postnatal depression: Development ofthe lO-item Edinburgh Postnatal Depression Scale. British .Tournai ofPsychiatry, 150, 782-786. Crawford, P. (1997). No continuing city: A postmodern story of social work. Australian Social Work, 50, 23-30. Pairchild, M. W. (1995). Women with postparturn psychiatrie illness: A professionally facilitated support group. Soeial Work with Groups, 18, 41-53. Gladding, S. (1995). Group work: A counselling speciality. Merrill: Englewood Cliffs. Gruen, D. S. (1993). A group psychotherapy approach to postpartum depression. International.Tournal of Group Psychotherapy, 43, 191-203. Hartford, H. (1971). Groups in Soeial Work: Application ofsmall group theory and research to soeial work practice. NY: Columbia University Press. Holden, J. (1987). Postnatal depression: "She just listened." Community Outlook, .Iuly, 9-11. Holden, J. (1996). The role of health visitors in postnatal depression. International Review of Psychiatry, 8, 79-86. Kerby, J. (1992). How stressed are rural people? Rural Soeiety, 2, 15-17. Kraus, M. A. & Redman, E. S. (1986). Postpartum depression: An interactional view . .Tournai ofMarital and Family Therapy, 12, 63-74. Lane, B., Penton, R., & DeMicheie, E. (1988). The challenge ofsoeial group work in the rural area. Paper presented at the Social Group Work Conference, University of New South Wales, Sydney. Mainous, A. G. & Kohrs, P. P. (1995). A comparison ofhealth status between rural and urban adults . .Tournai ofCommunity Health, 20, 423-431. Mansfield, P. K., Preston, D. B., & Crawford, C. O. (1988). Rural-urban differences in women's psychological well-being. Health Care for Women International, 9, 289-304.

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Maushart, S. (1997). The mask of motherhood: How mothering changes everything and why we pretend it doesn' t. Sydney: Random House. Meager, I. & Milgrom, J. (1996). Group treatment for postpartum depression: A pilot study. Australian and New Zealand Journal of Psychiatry, 30,852-860. Morris, 1. B. (1987). Group psychotherapy for prolonged postnatal depression. British Journal ofMedical Psychology, 60, 279-281. New South Wales Health Department (1993). Choice in Childbirth: Maternity Services Plan. Health Promotion Unit, Central Western Region. New South Wales Health Department Postnatal Depression Services Review (1993/1994). Postnatal Depression Within Aboriginal Communities: Discussion Paper. O'Hara, M., Schlechte, J., Lewis, D., & Varner, M. (l99\), Controlled prospective study of postpartum mood disorders: Psychological, environmental, and hormonal variables. Journal of Abnormal Psychology, /00,63-73. O'Hara, M. W. & Swain, A. M. (1996). Rates and risk of postpartum depression: A meta-analysis. International Review of Psychiatry, 8,37-54. Regan, S. (1997). Overcoming the tyranny of distance: Exploring the use of teleconferencing group counselling. Australian Social Work, 50,9-14. Romans-Clarkson, S., Walton, V., Herbison, G., & MuHen, P. (1990). Psychiatric morbidity among women in urban and rural New Zealand: Psychosocial correlates. British Journal of Psychiatry, 156, 84-91. Shaffer, 1. B. P. & Galinsky, M. D. (1974). Models of group therapy and sensitivity training. New Jersey: Prentice Hall. Smith, M. (1998). Rural and remote psychology in outback Australia. 1n-Psych: The Bulletin (if'tlle Australian Psychological Society, 20, 16-19. Storr, C. A. (1974). A mother is someone who leams as she goes. Nova, March, 47-51. Williams, S. & Seale, R. (l989a). Managing postnatal depression. Australian Medieine, 1,338-340. Williams, S. & Seale, R. (I 989b). A group program for the treatment of postnatal depression. Tlle Australian Associationfor Infant Mental Health Newsletter, 3,6-7. Williams, S. & Tweedie, R. (1994). Postnatal Depression Group Leadership Workshop Manual. Sydney: Contemporary Leaming Resourees.

PART 111 SECTION 1: HEALTH AND MEDICAL CARE

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Introduction: Part III Steven P. Segal, PhD

TRENDS POSE THE SOCIAL WORK CHALLENGE Major health and mental health service trends revealed in the Second International Conference on Social Work in Health and Mental Health held in Melbourne, Australia in January 1998 are challenging. They include reduced reliance on inpatient/residential service provision, increased reliance on economics, as reflected in managed care principle (Segal, 1999) as a tool for considering service options-i.e., as apposed to value-based care decisions. There is an increasing trend toward multi-disciplinary service provision-perhaps reflecting the managed care emphasis on buying the service at the cheapest cost rather than from the highest credentialed or most trained provider. There is a growing awareness of diversity of needs and the cultural requirements of offering effective service. There is a lessening of public support for health and social service provision and a tendency to create model programs and under fund broader based distribution of these programs, even to the extent that the latter programs appear workable. The challenge to Social Work is in framing the issues these trends create, adapting its education and practice to its framing of the issues, and developing the leadership to address the issues. Social work must adapt to the multi-disciplinary environment and take on the challenges of managed care by enhancing its own ski 11 base, wh ich in fact allows it to deli ver care at a more modest cost than its companion professions. It must avoid losing its value based principle in the process by maintainIHaworlh eo-indexing enlry noleJ: "Introduelion: Part 111." Segal, Steven P. Co-published sirnullaneously in Socia/ Work in flea/III eare (The Haworlh Social Work Practice Press, an irnprint 01' The Haworth Press, Inc.) Vol. 35, No. 1/2,2002, pp. 351-358; and: Sucja/ Work Healtll and Menta/Hell/lh: P/"(/clice, Research amt Programs (ed: Alun C. Jackson, and Sleven P. Segal) The Ilaworth Social Work Praeliee Press, an imprinl ofThe Haworth Press, Ine., 2002, pp. 351-358. Single or multiple copies 01' this articIe are available tor a fee from The Haworth Doeument Delivery Service 11-800-HA WORTI I, Y:OO a.m. - 5 :00 p.m. (EST). E-mail address: [email protected].

© 2002 by The Haworth Press, Ine. All rights reserved,

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ing its strong advocacy position. It must overcome public sentiment by implementing its values with its strong political skills. The issues are shaped by how social work addresses these trends. They pose formidable challenges as we enter the twenty-first century. To a large extent the papers that follow outline how Social Work is responding to these challenges within its various fields of practice. Yet it first seems important to look at the social work challenge.

SOCIAL WORK CHALLENGES THE TRENDS Social welfare is an industry with many fields of social work practice. The Second International Conference on Social Work in Health and Mental Health iIIustrates the diversity of the industry, its common mission and the rapid changes effecting its practice context. What is most evident is that health and mental health settings require and are the context of several fields of social work practice, including specializations by disability, age, and cultural practices among others. Social work intervention, wherever it is practised and whatever situation it addresses, is focussed on improving or learning how to improve bio-psycho-social outcomes. Its assessments, however, emphasize the determination of how the social context is Iinked to biological, psychological, organizational or other social system needs. Social work's mission emphasizes facilitating the fit between need and social context in situations that assault human integrity and often offend humanity by their attack on individual well-being. Yet its expertise extends beyond these situations to most circumstances requiring assessment and fit between social context and biological, psychological, organizational or other social system needs. It emphasizes social justice wherever and whenever it is lacking. Today's world has no dearth of situations that offend humanity and require intervention on behalf of social justice ends. It offers continued opportunity for social work activity to achieve improved and better standards of Iiving and care for all individuals. For social work the devil is in the details. No intervention, whether it involves the use of new medical technologies or compliance with eligibility requirements of federal programs, can be effective without the participation of the people involved. It is the character of this participation that is at the core of social work expertise. Social Work's assessment and facilitation of fit between social context and biological, psychological, organizational or other social system needs is the lubricant that makes programs or individual therapeutic interventions work.

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353

Without such effort even the greatest technological breakthroughs founder. It is Social Work's awareness of the human condition that enables it to take on this broad-based practice role. The papers in this volume illustrate this growing expertise in the two fields of practice central to the conference agenda: Health and Medical Care, and Mental Health. They further point out how these as weH as aH fields of practice in social welfare are being impacted by the advances and necessities of multicultural practice. In each area the authors bring the expertise that make the service objective achievable in the social context.

HEALTH AND MEDICAL CARE In the health and medical care area the papers represent the continuum of Social Work intervention from prevention, to resource development, to enabling the psychosocial adjustment to disease and the consequences of medical intervention, and finally to coping with longterm care issues. Brenner's paper, "Implementing a Community Intervention Pro gram for Health Promotion," shows social work engaging in a public health prevention program with populations that are the traditional targets of social work intervention. It describes a social work program facilitating public health objectives. The article describes the impact of social work directed community organization efforts in enabling change in health behaviours in East Harlem. While the particular focus is on cardiovascular disease, this effort represents the use of social work assessment of the social context to provide a fit between the bio-psycho-social needs of the population and the required changes in dietary behaviours. Next social work addresses resource development to enable the use of medical treatment. Forbe-Smith, Haire and Doneley, in their paper "Social Work Practice in the Donation of Human Tissue for Transplantation ... ," show how the use of social worker skill enables the development of medical care resources. They illustrate this in their program description of how social work makes possible tissue donations for transplantation in New Zealand. Social work's traditional role in the health care system has and continues to be supporting the patient and their relatives in coping with problems associated with receiving the news of and burdens associated with disease and the requirements and effects of medical treatment. Kayser and Sormanti, in their article, "A Follow-up Study of Women with Cancer," focus on the factors that promote psychosocial well-be-

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SOCIAL WORK HEALTH AND MENTAL HEALTH

ing following a diagnosis of cancer. Auslander and Buchs in their study "Evaluating an Activity Intervention with Hemodialysis Patients in Israel," examine an innovative intervention aimed at reducing some of the psychosocial repercussions of hemodialysis in end stage renal disease. Cox, in her study, "Social Support, Medication Complian ce and HIV/AIDS," looks at the role of demographics and social support in cIinician and patient rated compliance with tripie cocktail medication of HIV/AIDS patients. She considers how the social context enabling compliance is altered by demographics and social support. Finally, we approach the end of the continuum. With the expansion of the life cycIe, the social work effort needs to fit need to social context. It focuses attention on the needs of those with longterm chronic illnesses and others requiring residential placements. Often governments are wont to establish eider care and longterm care programs in policy mandate and fail to fund them to any adequate level commensurate with population need. Advocacy based on sound facts has become the major weapon social work has to address this increasingly common and appalling situation. Ngan and Kwan, in their paper, "The Mental Health, Status and Long term Care Needs of the Chinese Elderly in Hong Kong" survey the elderly receiving different types of elderly services or awaiting for some forms of residenti al care. The most striking findings of their study, based on their needs assessment, is the gap between the availability of infirmary beds and Care and Attention Horne beds and the numbers of individuals requiring such facilities. Thirty percent of their sampie living in the community or in private care hornes had applied for admission to such facilities. Further, the authors demonstrate that the assessed need of these applicants justifies their request for such services. Ngan and Kwan show that the Chinese family support system in modern urban society is not up to the task of caring for these needy relatives and has largely been forced to place them in substandard private facilities while awaiting access to appropriate residential options- available in policy mandates more than in fact. MULTICULTURAL PRACTICE

The traditional role of social work in promoting social justice and recognizing the impact of culture on adaptations to any helping effort

Introduction: Part IJJ

355

leads to consideration of the impact of multicultural differences on the delivery ofhealth and human services. This issue is most vivid in Social Work efforts to create a better fit between need and social context for immigrants and those who are not fluent or for whom a country's language is not their native language. In these situations the difficulty of stressful circumstances make communication and fit between need and context difficult to achieve. Wong, in his paper "Stage-Specific and Culture-Specific Coping Strategies U sed by Mainland Chinese lmmigrants Ouring Resettlement in Hong Kong: A Qualitative Analysis," considers the problem as experienced and dealt with by the individual. He looks at the strategies used by mainland Chinese in Hong Kong to handle psychosocial stressors experienced during the resettlement stage of the migration process. He finds that such strategies are stage- and culture-specific. While problem-solving strategies and compromise are used by immigrants to deal with recurring, daily re settlement difficulties, cognitive strategies of positive comparisons and positive optimistic thinking are utilized to change the meanings of these difficulties. Acceptance and avoidance strategies are culture specific, and are useful in reducing stress associated with the re settlement difficulties encountered. It was also found that the strategies of acceptance and avoidance might have deleterious effects on the longterm adjustment of immigrants. Wong suggests the implications of these strategies for counselling with immigrants. McNeece and Falconer in their paper on, "The Impact of Immigration on Health and Human Services: Florida's Experience," take a systems perspective. They document the increases in immigration in Florida and illustrate how the basic needs of immigrants have translated into fiscal impacts on the education, health, social service, and criminal justice systems. They show how the State has attempted to address these needs through both state and federal categorical programs, how Florida has tried to obtain additional Federal assistance, and how it has been partially successful in obtaining federal help. The authors focus on the problems of differential impact of immigration on state and local communities and on some strategies for coping with this situation. Finally, Field, Maher and Webb, in their paper, "Cross Cultural Research in Palliative Care," consider the appropriateness of hospice services for non-English speaking patients i.e., for patients-whose first language is not English. They found seventy-four nationalities were among the patients using hospice services in a three year period, 68% of the nationalities in the area of Australia where the study was completed. While 12% used professional interpreters, there was extensive use of

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significant others in attempting to communicate patient need. The authors are concerned that reliance on non-trained interpreters might effect the quality of care possible. There was a concurrence that while the role of the hospice was weIl established as indicated by the diversity of utilization, the process of death and dying required a cultural sensitivity. The authors consider the role of ethnicity, age, availability offamily support systems in the ethnic community, as weil as language in creating special communication gaps with professionals. They argue that such communication gaps may influence care--e.g., length of stay, ability to discuss one's illness, etc. The authors provide many recommendations for improved culturaHy sensitive service and seek an expansion of the role of the social worker in the setting to include active research and policy development to insure social justice for patients.

MENTAL HEALTH In the mental health area the participating authors consider the workings of the mental health system, how it functions, and how it changes. They evaluate system fit with patient need and also consider new mental social work roles. Shera, Aviram, Healy, and Ramon, in their article "Mental Health System Reform: A Multi Country Comparison," in looking at the workings of the mental health system, how it functions, and how it changes, compare recent developments in the mental health sectors of Britain, Israel, Canada and Australia. Their article illustrates a significant commonality in mental health reforms in these four countries. The reforms appear to be a product of cost containment and reduction, involving the introduction of market mechanisms to mental health service delivery and an emphasis on community care. They have involved a "deskilling and deprofessionalization" of the work force, especially those serving increasingly marginalized populations. Further, the burden of care has been shifted to families as the primary care givers and public support for care efforts is not strong. In evaluating system fit with need, Al-Krenawi, in the paper "Mental Health Service Utilization Among the Arabs in Israel," considers comparative utilization of mental health services by Arabs and lews in Israel based on two data sources: the 1995 National Hospitalization Records and a 1986 survey of public ambulatory mental health services. She observes that Arabs significantly underutilise services and that they use them in a pattern opposite of Jews-i.e., more Arab men utilize services than women. Al-Krenawi attributes his findings to the general un-

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357

der utilization of all health care by Arabs, limited availability of such care in Arab communities, and the influence of cultural rather than professional values in Arab mental health care utilization. AI-Krenawi advocates for more culture specific services and the development of the infrastructure for such services in Arab communities. Segal, Akutsu, and Watson, in their paper "Involuntary Return to a Psychiatry Emergency Service Within Twelve Months," also address the issue of system fit and need when considering the experience of patients evaluated in the Psychiatric Emergency Service (PES) of seven county general hospitals in California. They are particularly focused on the impact of managed care in shortening hospital stays and its possible effects on patients' probability of return to the hospital within a twelve month period of time. The authors found a 29% return rate largely attributable to the problems that were associated with the patients' initial retention in the PES. They express concern that the rather brief duration of hospital stays are contributing to the revolving door phenomenon their findings document. The last two papers evaluate social work function and propose new social work roles. Mitchell and Patience focus on a single practice condition. Their paper, "Conjoint Multi-Disciplinary Assessment in a Community Mental Health Team: The Impact on the Social Work Role" evaluates the introduction of this model in a Scottish CMHT in Glasgow. Two workers from each of fOUf disciplines-psychiatry, community psychiatric nursing, social work, and occupational therapy-assess each new case coming from a family practitioner to determine whether they are to be referred on for specialty care, treated by the team or referred back to the doctor with some ancillary supports. Social workers, once exc1uded in the full assessment process, move from the role of essentially providing tertiary discrete support to other professions (i.e., housing, welfare benefits, and mental health act commitment order information) to being full partners in planning, involved in 40% of referrals and receiving 62% of their cases from outside referral sources by the time the program is fully implemented. Mitchell and Patience observe that the multi-disciplinary approach has enabled social workers to have a more comprehensive involvement in initial assessments of c1ients referred to the team by family doctors and that it has increased collaborative work within the team. Aviram takes a broader system perspective on social work roles, in his paper on "The Changing Role of the Social Worker in the Mental Health System." He discusses the role of the social work profession in the mental health service arena. He analyzes the changing mental health

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environment and its chaHenges. He stresses that the profession must adapt to the dramatic changes brought on by deinstitutionalization and community care. In the light of these changes he suggests that social workers take on a more central and perhaps a dominant role in the mental health field. Aviram believes that only in doing so can social work make its fuH potential contribution to this field of practice. Aviram notes, however, that changes must take place in the practice of social workers as weil as in their education and training. The paper discusses those factors that will aide or hinder the professions adaptation to current mental health service needs. He particularly emphasizes the skills of social workers and their ability to take leadership in the roles of case management, work with self help organizations, consumers and their families, and in newly emerging non-profits. He sees the baUle for a piece of the therapeutic pie as a hindrance to social work's leadership.

SOCIAL WORK FRAMES THE ISSUES The Social work effort described in this volume shows how the profession is responding to the challenging trends of the 21st Century. Advocacy is alive and weil, and social work is thriving in the multidisciplinary environment. Social work research is contributing to uncovering the needs of the underserved and system inequities. Social work continues to provide the lubricant that enables the system to match need to the social context and intervention demand. The issues for social work are in the development of leadership, in how to better present the need so as to achieve more broad based public support. They involve the expansion of training to enhance social work skills and leadership. It is good to be a social worker in the 21st Century; its challenges are what it is about!

REFERENCE Segal, SP (1999) "Social Work in a Managed Care Environment." International Journal ofSocial Welfare. 8:47-55.

ENGAGING IN A PUBLIC HEALTH PROGRAM WITH POPULATIONS THAT ARE THE TRADITIONAL TARGETS OF SOCIAL WORK INTERVENTION

Implementing a Community Intervention Program for Health Promotion Barbara Brenner, DrPH, MSW, ACSW

SUMMARY. High rates of cardiovascular disease (CVO) among low income African American and Latinos are weH documented. While health promotion interventions leading to personal behavior change are known to reduce CVO in white, middle class, more educated populations, these approaches have not been widely tested in poor, minority ethnic communities. This paper describes a community intervention program to reduce cardiovascular disease risk factors in East Harlem, a low income New York City community in Manhattan, whose population is Barbara Brenner is Director, Community Relations, Mount Sinai Medical Center, and Assistant Professor, Division of Social Work and Behavioral Sciences, Department of Community Medicine, Mount Sinai School of Medicine. Address correspondence to: Barbara Brenner, üne Gustave Levy Place, Box 1037, New York, NY 10029. [Haworth eo-indexing entry note]: "[mplementing a Community Intervention Program for lIealth Promotion." Brenner, Barbara. Co-published simultaneously in Social Work in Healt" eare (Thc Haworth Social Work Praetiee Press, an imprint ofThe Ilaworth Press, Ine.) Vol. 35, No. 1/2,2002, pp. 35'1-375; and: Social Work Health and Mental Health: Practice, Research and Programs (ed: Alun C. Jackson, and Steven P. Segal) The Haworth Soeial Work Praetiee Press, an imprint of The Haworth Press, [ne., 2002, pp. 35'1-375. Single or multiple copies ofthis article are available tor a fee from The Haworth Documcnt Delivery Service [1-800-HAWORTH, '1:00 a.m. - 5:00 p.m. (EST). E-mail address: [email protected].

© 2002 by The Haworth Press, Inc. All rights reserved,

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SOC/AL WORK HEALTH AND MENTAL HEALTH

53% Latino and 39% African American. This primary prevention model seeks to change attitudes, norms and values regarding behaviors that contribute to chronic disease within a defined population through initiating changes in the social, educational, cuItural and physical environment. Environmental and organizational conditions that predict successful outcomes for the model and strategies, methods and skills, borrowed from social work and other behavioral sciences to implement and institutionalize community wide lifestyle changes, are highlighted. fArticle copies availab/e Jor a Jee Jrom The Haworth Document De/ivery Service: J-800-HAWORTH. E-mail address: Website: © 2002 by The Haworth Press, Inc. All rights reservcd.]

KEYWORDS. Community intervention, community organizing, heaIth promotion, social marketing

INTRODUCTION The community intervention model of heaIth promotion and illness prevention is a promising strategy to attack the chronic disease epidemics of industrialized societies in the late 20th century-the so called "lifestyle" epidemics of cardiovascular disease; cancer; chronic respiratory disease; cirrhosis; diabetes. All of these diseases are related in one way or another to lifestyle factors such as diet, exercise, and smoking. First implemented in North Karelia, Finland in the 1970s and replicated in Pawtucket, Rhode Island; Minneapolis, Minnesota and Stanford, California in the 1980s, community intervention is a primary prevention model which seeks to change attitudes, norms and values regarding hehaviors that contrihute to chronic disease within a defined population through initiating changes in the social, educational, cultural and physical environment (Carleton et al., 1995; Eider et al., 1986; Farquhar et al., 1985; Luepker et al. , 1994; Puska et al. , 1985; Thompson and Kinne, 1990). The community intervention model mayaiso be effective in addressing other public health epidemics involving behavior change such as substance abuse and violence. The community intervention model has been effectively implemented in primarily white, middle dass communities in the United States, but not widely tested in urban, low income African American and Latino communities where chronic disease epidemics are virulent.

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High rates of cardiovascular disease (CVO) among African Americans and Latinos in the United States are weil documented (Shea et al., 1996; Winkleby, 1997). Mortality and hospitalization rates in these communities are higher; educationallevels may be lower; community resources and support structures may be smaller and weaker than in middle dass communities. This paper describes the implementation (1988-1995) of a community intervention pro gram to reduce cardiovascular disease risk factors in East Harlem, a low income New York City community in Manhattan, whose population is 53% Latino and 39% African American. Environmental and organizational conditions that predict successful outcomes for the model and strategies, methods and skills, borrowed from social work and other behavioral sciences to implement and institutionalize community wide lifestyle changes, are highlighted.

DEFINITIONS AND CONCEPTS The Community Intervention Model is adeparture from traditional approaches to health promotion wh ich educate and screen individuals at high risk for specific diseases. Studies show that traditional interventions designed to change the behavior of high risk individuals have had too little impact to actually lower chronic disease rates in low income, ethnic minority communities (Brathwaite et al., 1989; Ramirez et al., 1988). Traditional methods of heaIth education and public health messages in the mass media are usually based on the dominant or mainstream culture and do not retlect the norms, values and/or role models of poor, culturally diverse communities. The community intervention model asserts (Bracht and Kingsbury, 1990; Thompson and Kinne, 1990)that: 1. Behavior is formed and heavily intluenced by the dominant culture and the community environment as experienced in myriad social relations. 2. Communities can be mobilized to act as change agents, giving legitimacy to values and norms for desirable behavior and making the social and physical environment more conducive for individuals to act. Mobilization means engaging multiple community networks of public and private organizations and special interest groups to channel and coordinate their resources in a broad range of interpersonal, group and mass communication strategies.

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Analysis, design, organizing, implementation and diffusion of programs is similar although communities are unique. 3. Early and sustained participation by community members and leaders is necessary to realize community ownership and pro gram maintenance. Special sensitivities and applications are required in adapting health promotion technology to ethnic minority communities and special population groups. What worked in Minnesota will not work in Melboume, Australia, Miami, South Central Los Angeles or East Harlem.

THE EAST HARLEM HEALTHY HEART PROGRAM East Harlem is a predominantly low income, working cIass community of over I 10,000 (U .S. Census, 1990) located in the Northem part of Manhattan, New York City. Its multi-ethnic population is 53% Latino, predominantly Puerto Rican, and 39% African-American. Spanish language and culture predominate. There are a growing number ofundocumented Mexican and Dominican families entering the community as weIl. Poverty, low education levels, high unemployment, inadequate housing, crime and high rates of substance abuse, AIDS, teen pregnancy and many preventable chronic ilInesses are present. Heart Health and cardiovascular disease was not the community's No. 1 priority, though cardiovascular disease, stroke and diabetes were the first, sixth and ninth leading causes of death (see Table I). A Behavioral Risk Factor survey conducted by New York State revealed that percentages of sedentary lifestyle, obesity, hypertension and cigarette smoking were higher among adults in East Harlem than the New York State average (see Table 2). In 1988, two East Harlem health organizations formed a seven year partnership to implement a community intervention pro gram to reduce cardiovascular risk factors in the population-Mount Sinai Medical Center, an academic health science center incIuding a 1,100 bed hospital, over 300,000 outpatient cIinic visits and a four year medical school, and Settlement Health and Medical Services, Inc., a smalI, federally funded community health center, staffed by multilingual, multicultural staff and providing over 25,000 primary care and prenatal visits annually in combination with innovative health promotion services. Program leadership was provided by Mount Sinai's social work led Department of Community Relations and the community health center's Executive Director. Program staff were consciously selected to incIude profession-

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T AßlE 1. Death Rates for leading Causes of Death in East Harlem 1991 East Harlem

New York City

1995 East Harlem

New York City

Heart Disease

330.9

362.3

277.4

385.7

Cancer

197.1

187.5

179.9

206.7

AIDS & AIDS Related Diseases

185.5

67.4

210.6

95

Pneumonia/lnlluenza

65.3

41.2

50.3

Homicide

61.1

27.2

21.2

16.5

Cerebrovascular Disease

40

33.1

35.4

28.7

Chronic Obstructive Pulmonary Disease

37.9

20.5

35.4

21.8

Drug Dependent & Accidental Drug Poisoning

35.8

9.8

27.5

14.5

Chronic Liver Disease/Cirrhosis

33.7

12.2

21.2

12.6

Diabetes Mellitus

21.2

13.1

40.1

23.4

Suicide

15.8

8

7.9

7.9

35.4

1991: Rates are per 100,000 population and are not age and sex adjusted. In all categories except Heart Disease, East Harlem has higher mortality rates than the mortality rates lor New York City. Prepared by: Health Systems Agency 01 NYC, Inc., April 1993. 1995: Rates are per 100,000 population and are not age and sex adjusted. Prepared by: New York City Department 01 Health, Office 01 Vital Statistics and Epidemiology, 1995.

TAßlE 2. Selected Cardiovascular Disease Risk Factor Profile of East Harlem and New York State Risk Factor/Behavior

Prevalence (%) New York State

Prevalence (%) East Harlem

Currently Smokino Cioarettes

27%

30%

Hioh Blood Pressure

14%

17%

Overweight

20%

26%

Sedentary Lilestyle/lrregular Activity

58%

62%

Source: 1989 Healthy Heart Survey, New York State Healthy Heart Program, Mary Lasker Heart and Hypertension Institute, New York State Department 01 Health.

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als-a nutritionist, health educator, and exercise specialist-and community residents with knowledge of community norms and organizations and grass roots experience as community organizers and health advocates. The East Harlem Healthy Heart Program (EHHHP) was one of eight (8) community intervention programs in the State funded by the New York State Department of Health Mary Lasker Heart and Hypertension Institute, four (4) of which were located in low income, inner city ethnic minority communities. Funding for the urban programs ranged from $325,000 to 350,000 annually.

HEALTHY HEART GOALS AND STRATEG/ES The East Harlem Healthy Heart program 's primary goals and objectives were: I. to raise awareness of and increase knowledge about CVD risk factors and to motivate change in risk behaviors among adults and children through the mediating influence of community organizations, schools, health agencies, social clubs, civic groups, and churches with whom the population is affiliated and local businesses on whom the community relies for products and services. 2. to promote adoption of supportive Heart Health policies and environments by these extenders in their organizations. 3. to empower volunteer leaders through skill building, training and the organization of planning bodies and events to commit their time and resources to develop/maintain Heart Health support structures in organizations and a Heart Health infrastructure at the community-wide level. 4. to develop effective, replicable Heart Health messages, promotional techniques, activities and programs that reflect the language and style of a majority Latino and African American community.

The community intervention model incorporates community organizing and social marketing strategies. It • Focuses on the multiple risk factors for a particular disease or public health problem. EHHHP focused on sedentary lifestyle; high fat, high cholesterol diets; hypertension; and smoking.

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• Targets every segment of the community-children, men, women, multiple ethnic groups through a variety of channels-work sites, school boards, PT As, community centers, day care centers, churches, supermarkets, tenant associations, mass media, elected officials. • Develops and maintains Health promoting programs, policies and support structures that are "owned" by the community. • Trains community residents as volunteer leaders. • Uses social marketing techniques. Organizing a community for large sc ale behavioral change must be based on the principle of participation. That is, the people heavily affected by a problem must be involved in defining the problem, planning and instituting steps to resolve the problem and establishing structures to ensure that the desired change is maintained (Green, 1986; Bracht and Kingsbury, 1990). The principle of ownership is an equally important concept to achieve long term behavioral change. Local people must have a sense of responsibility for and control over programs promoting change so they will continue to support them after the initial organizing effort. Community leadership involvement is essential to success. Extensive time and attention was empIoyed at the inception of the East Harlem Healthy Heart Program (EHHHP) to form a viable Community Advisory Board and community-wide Task Forces devoted to Nutrition, Physical Fitness and Smoking. A 30 member Community Advisory Board represented a cross-section of organized groups within the community, inc\uding the East Harlem School District, a local college, the police department, the Community Planning Board, the Chamber of Commerce, the Kiwanis Club, settlement houses and social service agencies, senior citizen centers, alllocal hospitals and community health centers, public housing projects, churches/the c\ergy, community physicians, Iocal banks and elected officials. The Board represented important linkages for EHHHP to carry out program interventions, promote the program and its concepts, and assist in developing additional funding sources. Task Forces, which carried out specific, time limited planning activities, were drawn from the same sources in the community. Social marketing is the marketing of relevant programs, ideas and behavior aimed at motivating all segments of the community to make changes. Key to its success is making the ideas, issues and actions ofthe program accessible and acceptable. Community involvement, commitment and cooperation are critical. A network of institutions (inc\uding

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community based organizations, mass and informal media, pressure/advocacy groups, businesses, consumers and government), each of which will perform specific marketing functions, must be developed. Also required is the development of a multi-faceted approach which addresses multiple target audiences, uses multiple channels, with multiple messages and multiple products (Manoff, 1985). According to Lefebvre (1990), a social marketing approach to public health intervention involves seven (7) major features: A message; A source; A target audience; Communication channels; Timing; Evaluation methods; and Feedback mechanisms. Message development requires up front research into the target audiences' perceptions of problems and solutions and their ability to make lifestyle changes, as weil as an identification of potential resistance points or baITiers, i.e., beliefs, perceptions, feelings or realities which may prevent acceptance of the message. Both the design, including its language and cultural relevance, and the content must be considered. The content should clearly identify the benefit of the issue(s) and specify potential actions. The message should be persuasive; the idea(s) memorable. Attention should be given to the credibility of the source. Social marketing, like commercial marketing, recognizes that no community is homogeneous. Thus, the market (the East Harlem community) must be divided into fairly similar target segments for which specific campaigns, messages and products may be developed. Although specifie, these messages can prove to be complementary. Segments can be defined according to demographie variables, lifestyle, health status, or image. Communication channels, formal and informal, need to be identified, and their appropriateness for each target segment determined. Attention to literacy levels and language are critically important. Mainstream health education materials usually need to be adapted for lower literacy levels and/or the use of visual images. Channels include the media (both formal and informal), schools, community leaders, agencies, pamphlets and f1iers, any vehicle that transmits the message. Evaluation and feedback is critical to a successful social marketing program. Pretesting, posttesting and tracking are essential elements for evaluation.

DOES COMMUNITY INTERVENTION WORK? Selecting and establishing measurable goals and objectives from which to evaluate the outcome of a community intervention program is difficult because the desired reduction in cardiovascular disease morbidity and

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mortality and improvement in health status may take several decades to track (Schooler et al., 1997; Stone et al., 1997). Consequently, most community interventions choose to measure process, rather than outcome variables, such as the responsiveness of the community to Heart Health messages and campaigns; the development and institutionalization of environmental and structural supports for Heart Health behavior within community organizations; and changes in policies and practices related to CVD risk behaviors. Process variables were used to evaluate the impact and effectiveness of the seven year East Harlem Healthy Heart Program (1988-1995) with the following results and conclusions.

New Opportunities and Support Structuresfor Fitness/Aerobic Activity Were Established in East Har/em 1. Annual month-long walking contests were organized from 1992-1995, reaching participation rates of 1800 adults and children in 64 walking groups/teams that competed for prizes. In 1996, a year after EHHHP ended, a Consortium of organizations continued to fund and organize this activity. 2. Six official EHHHP Walking Routes were established in the community with the New York City Parks Department. Thousands of official community Walking Route maps were distributed. 3. Over 100 volunteers-both community residents and community agency staff-were trained to lead aerobic dance/exercise classes through the Aerobics Leadership Training Program; 80% of those trained led/co-led an aerobics class following completion of training and CPR certification, engaging over 800 adults in exercise classes. Twenty aerobic exercise/dance classes were established in community agencies/schools/work sites, led by trained volunteers. After 1995, the New York City Parks Department adopted the EHHHP Aerobics Leadership Training Pro gram and has continued to provide free training to community residents.

Working Partnerships with Several Community Supermarkets Were Forged to Promote Heart Healthy Eating and Consumer Education 1. Heart Health nutrition tips in English and Spanish were placed in store circulars and distributed to over 15,000 households weekly. Heart health recipes and posters were distributed in the stores. 2. Store owners sponsored annuallow fat milk sales and label collection contests in conjunction with a Low Fat Milk Contest in local

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schools. Winners received round trip tickets to Puerto Rico. Measurable changes in low fat milk sales resulted, with sales tripling after each contest. 3. A S upermarket Nutrition A wareness Education and Promotion Kit was designed, with the assistance of supermarket partners, and disseminated to all supermarkets in the community.

Demandfor/Consumption of Low Fat Milk Among Schoolchildren Was Increased and Low Fat Milk Policy Changes Were Initiated in Public and Parochial Schools and Day Care Centers I. A campaign, If You are Over Two, Low Fat Milk Is Good For You, was introduced in five day care centers, three parochial and nine public schools, reaching over 3000 children. Measurable changes in demand for/consumption of low fat milk were noted in public schools, grades K-2. Day care centers switched to serving 2% milk. Community elementary schools under the jurisdiction of the New York Archdiocese switched to low fat milk completely. 2. Junior high school students were trained to become Low Fat Milk Ambassadors to younger children, teaching them the benefits of low fat milk. This project became part of the junior high curriculum. Over a three year period, this peer education project reached 20 East Harlem public and parochial elementary schools.

The American H eart Association Low F at H earty School Lunch Program Was I ntroduced to All Schools in the East H arlem School District I. Discussions were begun with the Office of School Food and Nutrition Services who agreed to use East Harlem as a pilot school district to introduce low fat lunches. 2. Food service personnel were trained in each East Harlem school regarding the benefits of the low fat lunch; school personnel were provided with promotional materials and techniques to introduce the new menus to students.

Community Volunteers and Health Professionals Were Trained to Conduct Heart Health Activities or Programs or Incorporate Heart Health Information and Activities into Their Existing Programs I. Over 120 volunteer leaders were trained to lead aerobic walking groups, including teachers, community health and social service

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3. 4. 5.

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agency staff and residents, involving approximately 4500 adults and children. Over 100 volunteers were trained to lead aerobic dance/exercise classes, teach Healthy Heart behaviors and avoidance of CVD risk factors; 60% who started the training program completed it and 80% of the trainees went on to lead their own classes, reaching approximately 800 adults. Nineteen (19) community volunteers were trained to conduct blood pressure screening and disseminate hypertension control information in English and Spanish. A Snackbusters curriculum was developed and introduced at twelve (12) after school programs in the community; staff were trained to conduct the program. An Easl Harfem Hea!thy Hearl Break/ast Menu, emphasizing fruits and low fat choices, was disseminated and promoted to hundreds of community organizations and health organizations.

The Coalitionfor a Smokefree EI Barrio Was Organized and Continues to Sponsor, Under Independent Funding, Community Based Activities, to Prevent Tobacco Use and Stop Smoking Among Y outh and Adults 1. A partnership was formed with the East Harlem School District to introduce and carry out anti-tobacco education programs and activities on an annual, continuing basis. 2. A Coalition of 10 organizations was formed, sought and received independent funding from New York State to continue school and community based educational activities and programs in East Harlem, including rallies, poster and T-Shirt contests, sting operations with local merchants regarding sale of tobacco products to minors, and advocacy activities to regulate tobacco products.

Creative Hearl Health Themes and Messages in the Language and Style of East Harlem Were Developed and Promoted; A Variety of Media Channels that Reach Community Residents Were Cultivated and Used 1. EHHHP launched an annual Anti-Smoking Bus Shelter Ad Campaign over four (4) years at nine (9) community sites, using posters designed by community schoolchildren or photos of community residents.

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2. A brochure entitled How To Plan and Organize an Anti-Smoking Bus Shelter Ad Campaign was made available. 3. The Heart Man and Healthy Heart logo were created and disseminated widely on all materials, T-Shirts, and other prizes and promotion al items such as water bottles, shopping bags and refrigerator magnets, etc. 4. All Heart Health written materials were translated into Spanish and adapted for low literacy audiences. 5. Public Service Announcements in English and Spanish were created and aired on local radio stations; EHHHP staff and volunteers appeared on twelve (12) Spanish language television and radio programs and on five (5) stations that are targeted to an African American audience to discuss Heart Health issues. Articles on Heart Health topics were published in thirty-five (35) local newspapers, including Spanish language papers.

KEYS TO SUCCESS As discussed above, a community intervention pro gram 's success, in the short-term, must be measured against the achievement of identified process variables. Evaluation of whether the EHHHP intervention led to a reduction in cardiovascular disease mortality and morbidity in East Harlem would require long-term tracking of individuals and clinical trial research methodologies. However, based on an assessment of process goals and objectives, the East Harlem Healthy Heart Pro gram is considered to be a good example of how to reduce risk factors and change policies and practices related to CVD risk factors in a low income, culturally diverse community where health status is not necessarily the community's number one priority and where cultural and economic factors support the status quo. Some of the keys to the East Harlem Healthy Heart Program's success that have been identified are as folIows: 1. Sponsorship by a community health centerlhospital partnership, rather than sole sponsorship by a large professionally driven institution. 2. Early and sustained community leadership participation. 3. The investment of key organizations, such as the school district, major supermarkets and other merchants, as weIl as community

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health organizations, in implementing the program 's goals and objectives. 4. Staff members who live in the community, speak the language and know how to get the attention of existing community leaders and networks. 5. Professional staff who enabled community leaders and residents to leam, organize and implement their own activities, rather than providing direct services to the community. 6. Attractive programs geared to the cultural preferences, language and literacy levels of the community. IMPLICATIONS FOR SOCIAL WORK Health promotion is one of the first and few, along with public health, truly interdisciplinary enterprises in health that is independent of medicine. Community based health promotion programs and approaches, including community intervention strategies, do not take their primary impetus from medicine or medical cure models but rather from the pooling or integration of theories and methods from many disciplines, incIuding social work, sociology, behavioral psychology, community organizing, biomedicine and marketing and communications. Health Promotion theories, models and/or approaches familiar to social work and relevant to the community intervention model abo und. In health promotion as in social work there is an ongoing debate on who is responsible for behavior, for disease or disability-the individual or the environment (Green and Raebum, 1990; Thompson and Kinne, 1990). 1. Behavior Theory. As applied to health promotion, an individual/behavioral view asserts that persons at risk for preventable illness or death are responsible for exercising control over their risk/lifestyle and for reducing/preventing the illness. The behavioral approach or wellness/fitness movement emphasizes providing educational opportunities to individuals and groups and the use ofmass media to communicate health promotion/wellness messages. It is then up to the individual to take the information and !eam the skills from the educational programs. Behavioral incentives and peer influence can be effective in bringing about healthy behavior change. A focus on individual behavior lends itself to victim blaming and/or to health promotion programs that may be suitable to middle and upper income rather than poor populations. III health from unhealthy behaviors such as smoking or high fat eating is seen as the individual's responsibility rather than the result of

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social, family and environmental pressures or features under which individuals live. 2. System Theory. A systems view is that behavior is influenced by the social, economic, political, institutional, cultural, legislative, industrial and physical-environmental milieus in wh ich behavior takes place. Interventions aimed at changing the behavior of individuals are inadequate because the system and its norms and values are a more powerful and pervasive determinant of behavior and of health than decisions made by individuals. 3. The Ecological Model. This model rejects both behavioral or system theories in their pure forms, considering them extremes or for academic contrast. In reality, health educators from most disciplines, including social work, merge these two perspectives into an integrated, total person-environment approach to health promotion, where responsibility for health is shared between individuals and systems (Green, 1986a). The ecological view asserts that people and health should not be seen in isolation; each is nested in systems that profoundly affect behavior and health. Health promotion must take that ecological fact into account and recognize there is an interaction of lifestyle and environment. The ecological model ofhealth promotion (and of social work) says that health is the product of the individual' s continuous interaction and interdependence with hislher ecosphere-the family, community, culture, societal structure and physical environment. Determinants of lifestyle are a combination of intra personal and external environmental forces, continuously interacting. In some cases, health promotion programs need to emphasize the individual or behavioral side; in other cases, the environmental side, including policy change, is the point of intervention. Health is likely to be good when an individual has a sense of mastery over the everyday environment. However, health will suffer with poverty, limited opportunity, oppression and lack of mastery. 4. Enahling. Enabling is central to social work practice with individuals, small groups and communities with the goal to help each maximize their potential and capacity for growth, for problem solving and decision making and for control of these processes. The principle of enabling is equally central to health promotion and to community intervention. WHO defines health promotion as the process of enabling people to increase control over and to improve their health. In health promotion, the heart of the enabling approach is the concept of returning power, knowledge, skills and other resources in a range ofhealth areas to the community-to individuals, and to families. This implies power now held by institutions and professions should be turned over to

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the communities in order to develop public policy, to create supportive environments (self-help), to strengthen community action, to develop personal skills and to reorient health services. The community should not just be consulted or educated, but should be brought actively into the health enterprise in a significant way. Enabling is a matter of power, resources, control and who sets the priorities. It is a key concept for an integrated approach that spans the various components and ideologies of health promotion. Communities and groups must be part of planning, professionally led up until now. However, communities need information, training and resources to develop leadership skills and manage their activities. An overriding principle is the provision of appropriate resources and avenues for people individually and collectively to have an active role in all aspects of hcalth, and whenever possible to have significant control over what is undcrtakcn (Green and Raebum, 1990). In this model, social workers play roles as consultants, advocates, mediators and supporters rather than being the one who always controls the situation, as partners rather than in a hierarchical relationship. 5. Community Organizing. Community organizing for health is no different than for social justice, housing or jobs, and it has demonstrated its success in introducing primary prevention programs to communities. Community organizing, as taught in social work school, is a planned process to activate a community to use its own social structures and any available resources (intemal or extemal) to accomplish community goals, decided primarily by community representatives and consistent with local values (Bracht and Kingsbury, 1990; Hagland et al., 1990). Purposive social change interventions are organized by individuals, groups, or organizations from within the community to attain and then sustain community improvements and/or new opportunities (Bracht and Kingsbury, 1990). Community Organization (C.O.) is not new to public health and in fact, is probably social work's most significant contribution to public healthlhealth promotion work, used by charity organization societies and settlement houses, such as Hull House and Union Settlement in East Harlem, to activate health and environmental proteetion efforts for the last 100 years. The community intervention model for health promotion, as demonstrated by the East Harlem Healthy Heart Program, is at the interface between social work and public health. Social workers have, can and should assurne the leadership in designing and implementing these models, especially in communities and among populations where rates of chronic disease, the so-called lifestyle diseases, are high and where

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poverty, social and political conditions require skilIed enah/ing and community organizing techniques.

REFERENCES Bracht, N. and Kingsbury, L. Community organization principles in health promotion: A five stage model. In Bracht, N., (ed.) Health promotion at the community level. Newbury Park, CA: Sage, 1990. Brathwaite, R. and Lythcott, N. (1989) Community empowerment as a strategy for health promotion for black and other minority populations. Journal of the American Medical Association, 261 (2),283-284. Carleton, R.A., Lasater, T.M., Assat, A.R., Feldman, H.A., and McKinlay, S. (1995) The Pawtucket Heart Health Program: Community changes in cardiovascular risk factors and projected disease risk. American Journal ofPublic H ealth, 85: 777 -785. Eider, J.P., McGraw, S.A., Abrams, D.B. et al. (1986) Organizational and community approaches to community-wide prevention of heart disease: The first two years of the Pawtucket Heart Health Program. Preventive Medicine, 15,107-117. Farquhar, J.W., Fortmann, S.P., Maccoby, N. et al. (1985) The Stanford Five-City ProjeCI: Design and methods. American Journal of Epidemiology, 122, 323-334. Green, L.W. (1986) lndividuals versus systems: An artificial distinction that divides and distorts. Health Link, 2(3), 29-30. Green, L.W. and Raebum, J. Contemporary developments in health promotion: Definitions and challenges. In Bracht, N., (ed.) Health promotion at the community level. Newbury Park, CA: Sage, 1990. Hagland, B., Weisbrod, R.R., and Bracht, N. Assessing the community: lts services, needs, leadership and readiness. In Bracht, N. (ed.) Health promotion at the community level. Newbury Park, CA: Sage, 1990. Lefebvre, R.C Strategies to maintain and institutionalize successful programs: A marketing framework. In Bracht, N., (ed.) Health promotion at the community level. Newbury Park, CA: Sage, 1990. Luepker, R.V., Murray, D.M., Jacobs, D.R. et al. (1994) Community education forcardiovascular disease prevention: Risk factor changes in the Minnesota Heart Health Program. American Journal ofPublic Health, 84: 1383-1393. Manoff, R.K. (1985) Social Marketing: New imperative for public health. New York: Praeger Puska, P., Nissinen, A., Tuomilehto, J. et al. (1985) The community-based strategy to prevent coronary heart disease: Conclusions from the ten years of the North Karelia ProjecL Annual Review of Public Health, 6, 147-193. Ramirez, A., McKellar, D., and Gallion, K. (1988) Reaching minority audiences: A major challenge in cancer reduction. Cancer Bulletin, 40(6), 334-342. Schooler, C, Farquhar, J. W., Fortmann, S.P. and Flora, J.A. (1997) Synthesis of findings and issues from community prevention trials. Annals ofEpidemiology, 7: S7, S54-68.

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Shea, S., Basch, C.E., Wechsler, H., and Lantigua, R. (1996) The Washington Heights-Inwood Healthy Heart Program: A 6-year report from a disadvantaged urban setting. American Journal ofPublic Health, 86: 166-171. Stone, EJ., Pearson, T.A., Fortmann, S.P., and McKinlay, J.B. (1997) Community-Based prevention trials: Challenges and directions for public health practice, policy and research. Annals ofEpidemiology, 7: S7, SI13-120. Thompson, B. and Kinne, S. Social change theory: Applications to community health. In Bracht, N., (ed.) Health promotion at (he community level. Newbury Park, CA: Sage, 1990. Winkleby, M.A. (1997) Accelerating cardiovascular risk factor change in ethnic minority and low socioeconomic groups. AIlI1als ofEpidemiology, S7: S96-103.

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RESOURCE DEVELOPMENT TO ENABLE THE USE OF MEDICAL TREATMENT

Social Work Practice in the Donation of Human Tissue for Transplantation: Utilising Social Work Values and Competencies to Achieve Effective Outcomes for Transplant Patients and Donor Families Lyndall Forbe-Smith, BSW, MSW Mary Haire, MA, MSSc, CQSW Mary Doneley, BSW

SUMMARY. In Queensland, Australia, senior social workers have pioneered the coordination of tissue donation at coronial autopsies, seeking consent for the donation of heart valve, bone and eye tissue after sudden Lyndall Forbe-Smith is Senior Social Worker, Mary Haire is Director, Social Work Services, Mary Doneley is Assistant Director, Social Work Services, all at The Prince Charles Hospital and District Health Service, Chermside, Queensland, Australia. [Haworth co-indexing entry note]: "Social Work Practice in the Donation ofHuman Tissue for Transplantation: Utilising Social Work Values and Competencies to Achieve Effective Outcomes for Transplant Patients and Donor Families." Forbe-Smith, Lyndall, Mary Haire, and Mary Doneley. Co-published simultaneously in Sodal Work in Healtll eare (The Haworth Social Work Practice Press, an imprillt of Thc Haworth Press, Ine.) Vol. 35, No. 1/2,2002, pp. 377-389; and: Social Work Healtll and MelllalHeailh: Practice. Research and Programs (ed: Alun C. Jackson. and Steven P. Segal) The Haworth Social Work Praetice Press, an imprint of Thc Haworth Press, [ne., 20()2, pp. 377 -3R9. Single or multiple copies of this artide are available for a fee from The Haworth Document Delivery Service ll-8()O-HAWORTII. 9:00 a.m. - 5:00 p.m. (EST). E-mail address: [email protected].

© 2002 by The Haworth Press, Inc. All rights reserved.

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deaths which have been reported to the coroner. The urgent need for tissue for transplantation is balanced with the counselling, information and practical needs of potential donor families in their shock and grief. Social work assessment, advocacy, liaison, counselling, crisis intervention and particularly communication skills have been utilised, both as an integral component of obtaining informed consent and in working with families' experience of grief and loss in sudden, traumatic bereavement. This tissue donation program, over aperiod of eight years, has maximised the availability of tissue with its high donation rates, while upholding the rights and needs of potential donor famil ies through provision of an effective social work service. The paper will reflect upon key social work knowledge and processes which have respected the subjective experience of dient and worker while working within a medical model. [Arüde copies available for a fee trom The Haworth Document Delivery Service: 1-800-HAWORTH. E-mail address: Website: © 2002 by The Haworth Press, Inc. All rights reserved.]

KEYWORDS. Tissue donation, coronial autopsies, social work

Organ and Tissue Donation is based on the dual pillars of tissues and organs being freely gifted and subject to informed consent. Australian Health Ministers Advisory Council1998

THE QUEENSLAND CORONIAL TISSUE DONATION SERVICE We report on the experience of social workers at The Prince Charles Hospital in Brisbane who are engaged in seeking consent for heart valve, bone and eye tissue at the time of coronial autopsies. The goal of this Social Work Service is to encourage the professionals and agencies involved in this work to frame processes that respect and protect the needs and rights of donor families. The purpose of this tissue donation service is • To seek consent for retrieval of human he art valve, bone and eye tissue at coronial autopsies when multi organ donation has not been sought.

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• To support the agencies involved in the retrieval of heart valve, bone and corneal tissue in their therapeutic treatment of disease/trauma in adult and paediatric patients. • To provide an assessment, information and counselling service for donor and potential donor families.

In Queensland, Social Workers provide a coordinating role in Tissue Donation, taking responsibility for ethical decisions relating to: • Identifying potential donor families and appropriate contact persons. • Assessing when requests for donation can proceed. • Assessing for informed consent. • Assessing need and time frames for information giving, counselIing and referrals. • Assessing appropriate correspondence. • Assessing for social work counselling such as Loss and Grief Counselling. • Assessing for referral to other helping agencies for practical assistance and long term counselling. • Providing information about the tissue sought for donation and method of retrieval, preservation and use. • Providing assistance in gaining access to autopsy results and death certificates. • Providing information post transplant about how tissue has been used and of the benefit to recipients. The history of this program dates back to 1990 when the Director of Social Work Services at The Prince Charles Hospital accepted the challenge of creating a social work service in response to the many issues of heart valve retrieval and donation rather than simply providing a consent seeking process. Our hospital has a proud pioneering history in the development of allograft heart valve replacement surgery and cryopreservation. The world's first cryopreserved heart valve bank was established at The Prince Charles Hospital in 1975 (Haire and Hinchiff, 1996). Initially beginning with approaching families for consent to donation ofheart valves, we are now seeking consent for bone tissue and corneas also. Approaching families for multi-tissue donation has created the need to coordinate the process of making contact. We provide the one

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contact point on an advocacy basis for all of the agencies able to retrieve tissue at the time of coronial enquiries. Social Workers approach recently bereaved families whose loved one has died suddenly through accident or suicide within the last 24 hours and where a post mortem has been ordered by the Coroner. The focus of this contact is to confirm with the donor family that the wishes of the deceased (ifknown) regarding donation can proceed and/or to ascertain the feelings of the bereaved family to donation. Decisions must reflect the family's ability to make an informed decision about donation that can endure beyond the time of making the decision. We have had the experience of contacting a family where a teenager had been killed tragically, the parents were spontaneously agreeable for donation to proceed but requested time for further consideration. In this time they were able to discuss the donation with a younger sibling. The younger child could not cope with the idea of the procedure and the parents respected the child's view. This illustrates the importance of conflictfree decisions and the enduring capacity of decisions to prevent further trauma. In carrying out this work we have identified many lssues and Responsihilities which relate to the Ethical and Practical Challenges of Tissue Donation. We will focus further discussion around these issues and responsibilities and conc1ude with some data about the value and effectiveness of our programme.

ISSVES AND RESPONSIBILIT/ES OF THE TISSVE DONATION SERVICE • Providing appropriate documentation to meet the legal, ethical and moral responsibility of this work. (Social Work Education)* • Identifying and responding to the rights and needs of donor families. (Advocacy, Bereavement Intervention, Case Management)* • Supporting the mission of the life saving and life enriching tissue donation programmes. (Community Development)* • Australian Allied Health Classification System (Version One), Clinical Care activities (1997). • Providing coordination on behalf ofthe agencies and staff directly involved in Tissue Donation-Queensland Heart Valve Bank,

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Queensland Bone Bank, Queensland Eye Bank (soon Queensland Skin Bank also), Coroners, Police, Forensic Pathologists, Morgue Attendants, Senior Surgeons, Senior Scientists. (Service Co-ordination)* • Contributing to State and National Forums to provide strategic direction for Organ and Tissue Donation (Health Policy Development)* • Supporting the workers engaged in all aspects of this difficuIt work. (Social Work Education, CISD)* *Australian Allied Health Classification System (Version One), Clinical Care acti vities (1997)

Preparing Appropriate Documentation in Terms and Moral Guidelines

0/ Legal, Ethical

We are guided in our work by three significant Acts of Parliament (Queensland). The Transplantation and Anatomy Act The Human Tissue Act The Coroners Act

1979 1982 1958-1977

The Transplantation and Anatomy Act provides the legal basis for the removal of human tissue at the time of coronial autopsy. Although legally possible to retrieve tissue in some circumstances with the consent of aDesignated Officer, retrieval never takes place without relatives being sensitively consulted concerning their wishes. The Human Tissue Act protects the identity of donors and recipients. The Coroner's Act defines the parameters of retrieval activity. Our protocols and correspondence reflect the legal, ethical and moral aspects oftissue donation and are framed within the fundamental values of social work which seek to promote the principles of • Self determination • Social justice We are guided by the general principles of ethics, autonomy, beneficence, non maleficence, fidelity, utility, justice (Merion, 1996).

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We have written detailed protocols to name our process and responsibilities. Our correspondence to donor families extends sympathy, provides further information about the tissue donation program and is individually written to acknowledge the special circumstances of each donor family. "Thank you for being able to discuss your son's wishes to be a donor and for your deep concern for other people in the midst of your own grief. . . . we would like you to know just how much your thoughts and willingness to help in this way have strengthened us to continue with the donation work" (In a case where donated tissue unexpectedly could not be used).

Identifying and Responding to the Rights and Needs 0/ Donor Families One of the first dilemmas faced by Social Work staff in initiating contact with bereaved families concerns the idea of imposingfurther trauma. The circumstances of death for all of our prospective donor families are sudden and often violent. The first contact of one Social Worker with a donor family concerned the death of a young man killed in a horrific industrial accident. A wheel repair apparatus, revolving at very high speed, become unattached and struck the deceased in the face. In hearing of such horrific situations, images and thoughts emerge about how people are coping with their shock and loss. The added burden of asking for donation seems inappropriate. And yet our experience teils us otherwise. The overwhelming reaction of relatives is positive. Extensive experience has given us the skill and confidence to sustain the impact of such tragic and often horrific circumstances so that we can approach families and offer them the opportunity of donation and assistance. In approaching families we are guided by compassion for their loss and respect for their right to make an lnformed Decision about donation whatever this decision may be. In this we are guided by the ethics of informed consent which names the abilities needed by donor families to make an informed consent. These abilities are Competence Voluntariness Understanding Decision Making Authorization

Beauchamp & Childress (1994)

Client Abilities

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The complementary responsibility of professional staff is to ensure that adequate information has been sensitively given to donor families and that donor families are not influenced in making their decision. The purpose of this process is: • Disclosure • Facilitation of Self Determination (Beauchamp & Childress 1994). There are difficulties in responding to the needs and rights of donor families. Firstly, our approach to families is usually unsolicited and unexpected; therefore we are posing a dilemma to families who have not already considered donation. We are, in Foucault's words (Armstrong 1992), "strategically placed" in terms of being powerfu1 to influence families at a time when their ability to make significant decisions is greatly impaired. Some grief counsellors say that at the time ofbereavement the level of emotional ability regresses to between the ages of 8-15 for the particular person. Sensitive and skilled counselling is therefore critical to enable families to make enduring decisions. Secondly, we are constrained by the use of the telephone in our approach to families. We do not have the benefit of face to face interviews to be physically available to read and respond to non verbal information and to develop a relationship with the donor family. In addition, the information that we obtain before contacting families is brief. We may know only the identity and age of the deceased, how they died, and the identity of a single, close relative. A third difficulty is the tight time frame in which we work. Because retrievals are performed at a city or hospital mortuary under a Coroner' s jurisdiction, the time of collection must happen in accordance with the legal and functional demands of this organisation. The ability to sensitively carry out this work is, I believe, made possible by our social work process wh ich is informed by our knowledge and training. We are able to join with and understand people in their relationships with themselves, other people, society and events in their lives. This praxis enables us to form assessments that respect and reflect the authentic reality and wishes of the people with whom we are working. We are able to develop and review knowledge and frameworks for practice. We acquire significant cumulative knowledge so that we can anticipate reactions and have strategies ready for response. We are able to listen in an "integrative" way to the pain and struggles of donor fami-

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lies and affirm their decision about donation. We are skilled in creating the therapeutic environment. The parameters of the therapeutic relationship are: • • • • •

Therapist contributes knowledge and skill Therapist promises confidentiality Therapist promises to listen and bear witness Client agrees to self disclosure Client promises to tell the truth (Herman, 1993).

ludith Herman (1993) speaks about the healing power of "bearing witness." We think that in these circumstances this therapeutic capacity is significant. We also provide the opportunity in great tragedy for bereaved families to "make sense" of senseless tragedy. In most cases of child death, parents express the relief that something positive can come of their loss. What do we do therapeutically to give something back to donor families? • Our process enables informed consent based upon the principle of self determination. • We send letters of appreciation which also offer information about community resources and support groups such as Compassionate Friends. • We provide information about how a recipient has been helped by the donation-particularly in the case of child death. • We arrange for an anonymous letter of thanks from the recipient or their family. • We invite donor families to an Annual Thanksgiving service which honours the gifts of donation. • We respond to individual needs. • We provide a level of professionalism that respects the c1ients' trust in our ability. Social Workers do much to promote a professional trustworthy aura to the wh oie tissue/organ program. (O'Brien, 1997) Social W orkers have the potential to promote organ procurement because they are experts in grief and crisis interventions, are sensitive to cultural and ethnic differences, and can participate in community education (Gena and Weinmann, 1995).

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Supporting the Mission ofthe Life Saving and Life Enriching Tissue Donation Programs There is an essential tension in the work that we do. On the one hand we are asking people in the midst of overwhelming grief and shock to make a precious and unconditional gift. On the other hand we are acting on behalf of agencies whose mission is to make available therapeutic and safe human tissue for the benefit of very sick recipients. How do we balance this tension? There are two significant issues needing our most skilIed response. They are discussion about the retrieval process itself and ensuring the safety of tissue retrieved. Regarding retrieval, we are challenged to help people understand this without adding further trauma to their situation. It is difficult for example to describe the retrieval of bone tissue without giving an image of further mutilation. Questions about mutilation are frequently asked by relatives. We reassure donor families that extreme care is taken to restore the body so that there is no offensive sign of retrieval and that the deceased is treated with the greatest of respect. In terms of safety of donated tissue, medical and technical advances constantly increase the need to assess for more detailed medical and social risk factors. We minimise the impact of these sometimes very personal inquiries through sensitive assessment and counselling. We

Our skills equip us to provide • Social screening (Should we proceed?) • Advanced psycho social assessment including rapid crisis assessment • Gounselling • Bereavement intervention • GISD (particularly the knowledge) • Liaison • Advocacy • Referral • Education • Ethics-social werk values • Health Policy Development • Service Development

Individual Patient Attributable interventions'

Non Individual Patient Attributable interventions'

'Australian Allied Health Glassification System (Version One), Glinical Gare activities (1997)

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ask for the family's permission for our scientific staffto speak with the deceased's General Practitioner or other treating doctor. In responding to the needs of Tissue Banking in identifying medical and social risk, and in acquiring information about the therapeutic benefit of tissues, the retrieval techniques, the storage and preservation of tissue, social workers have challenged the assumption that staff skilled in nursing and medical or scientific backgrounds should take the major roles. Through our work and practical experience, we have identified that the core skills in the consent seeking process are those of social work enhanced by rising to the challenge of expanding knowledge in medical and scientific areas. In addition, by separating out the responsibilities, and adapting a truly multidisciplinary approach to donation retrieval and preservation oftissue, a highly successful framework has emerged which is preferable to the attempted multi skilling of one profession.

Providing Coordination on Behalf 0/ Agencies Directly Involved in Tissue Donation The role of coordinator between the tissue banks and donor families is an important one. As already stated we are concerned that only one approach be made to families. It is equally important that families are provided with accurate infonnation. If for some reason the tissue could not be retrieved as agreed, the family must be told. Before an approach can be made to families, it must be known that tissue bank staff have assessed for the physical suitability of donation and are available to carry out the retrieval. Coordination of the consent seeking process enables maximum protection of donor families. It is in everyone 's best interests that this work be guided by • • • •

common ethical values and protocols minimum intrusion to donor families accurate and timely information dedicated staff to acquire cumulative knowledge about this work and review its continuing efficacy

Supporting the Workers Engaged in This Difficult Work The constraints on our professional ability to carry out this work are considerable. We name and manage these challenges. However, some-

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times we hear of details that shock and sadden us beyond the boundaries of our experience so far and touch our own fears. One of us has recently contacted the family of a 17 year old killed in a car accident who had just completed Grade 12. She was a high achiever with a very promising future. She had rung her parents shortly be fore her fatal accident to ask them to pick her up from the party she had been attending. The parents told her that they were unable to do so as they were out celebrating their wedding anniversary. The grief of these parents will now be horribly compounded by guilt. The Social Worker who contacted the family also has a 17 year old enjoying her sociallife having completed high school and with her whole life to look forward to. This worker's heart reached out to these parents. Sometimes we have had to cope with the extra dimension of knowing the deceased and their families personally. The cause of death is always traumatic. The challenge in these situations is to proceed professionally but with preparation for unexpected reactions. We would understand if these families expressed anger against our intrusion. However, again this is not the case in our experience. One ofthese families wrote, "We know how hard it must have been for you to contact us under the circumstances, but feel grateful that it was a friend who made the call" (Donor Family, 1996). For workers helping people in trauma experiences, ludith Herman (1993) identifies the concepts of witness guilt and survivor guilt. In these cases those unaffected by tragedy and loss can acquire a sense of guilt for being spared. I think that as workers we need to recognise and address our own survivor guilt and the many risks that are associated with our work and to develop management strategies. Helpful strategies can be • • • • •

Debriefing Education Workshops Networking with others in similar occupations Professional supervision

Providing Input into State and National Forums About Tissue Donation Organ and Tissue Transplantation Services have developed independently in Queensland. There are seven transplant/banking services each operating with their own c1inical and management structures.

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Several factors have influenced health planners to review the efficacy of this existing fragmented system. It is being proposed that greater coordination and rationalisation of resources take pi ace. Mary Haire, Director of Social Work Services, has been invited during 1996 and 1997 to contribute to this significant policy planning opportunity and is a member of the Transplant Services Specialist Advisory Committee which has been asked by the Director General of Health to review and report on how Donation and Transplant Services might be reorganised into a more cost effective and efficient service. Our concern in this forum is to advocate strongly for a service based on Social Work knowledge and skill, so that the needs and rights of donor families can be addressed from a single, uniform and philosophically consistent focus (Dhooper, 1994). We have demonstrated that we can provide a professionally excellent service with statistically high rates of effectiveness for the transplant services we serve. Statistics from the latter years of our service demonstrate its benefit. Of 450 families approached for consent to heart valve donation between 1994 and 1997,361 families have consented to donation, which is a percentage of 80%. Of 154 approaches to donor families for bone tissue donation, 114 families have consented, giving a percentage of 74%. These figures compare very favourably with the national average of 48%. In summary, we have been able to develop processes that have upheld the values of our profession. Our continuing challenge is to maintain and extend the contribution of social work to the cutting edge of medical science. REFERENCES Armstrong, T.J. (1992). Michael Foucalllt Philosopher. Essays translated from the French and German. New York: Harvester/Wheatsheaf. Australian Health Ministers Advisory Council (1997). Unpublished Paper. Beauchamp, T.L. & Childress, J.F. (1994). Prindples of Biomedical Ethics. New York: Oxford University Press. Dhooper, S.S. (1994). Sodal Work and Transplantation ofHuman Organs. West Port, CT: Praeger. Gena, J. & Weinmann, M.L. (1995). Social work perspectives in organ procurement. Health & Social Work. 20 (4), 287-293. Haire, M.C. & Hinchliff, J.P. (1996). Donation of heart valve tissue: Seeking consent and meeting the needs of donor families. MedicalJournal ofAustralia. 164,28-31.

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Herman, 1. (1992). Trauma and Recovery. London: Basic Books. Merion, R M. (1996). How Informed is Informed. Consent Transplantation Proceedings. 28 (1), 24-26. National Allied Health Casemix (1997). Australian Allied Health Committee Classijication System, Version One. O'Brien, M. (1997). Unpublished Submission to Queensland Health.

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SUPPORTING THE PATIENT IN COPING WITH PROBLEMS

A Follow-Up Study of Wornen with Cancer: Their Psychosocial Well-Being and Close Relationships Karen Kayser, PhD, MSW Mary Sormanti, PhD, MSW

SUMMARY. The psychological and social consequences of having a diagnosis of cancer can continue beyond the initial year of diagnosis. However, very few empirical studies examine the long-term adjustment of cancer survivors and the factors that promote survivors' well-being. This paper presents an 18 month follow-up study of 26 women who were treated for various types of cancer at a major medical center in the United States. They completed questionnaires during the initial treatment phase Karen Kayser is affiliated with Boston College, Graduate School of Social Work, Chestnut Hili, MA 02160 (E-mail: [email protected]). Mary Sormanti is affiliated with, Columbia University, School of Social Work, 622 West 113th Street, New York, NY 10025 (E-mail: [email protected]). This research was supported by a grant from the American Cancer Society, Massachusetts Chapter. IHaworth co-indexing entry note]: "A Follow-l1p Study of Wornen with Cancer: Their Psychosocial Well-Being and Close Relationships." Kayser, Karen, and Mary Sorrnanti. Co-published simultaneously in Socia[ Work in Hea[th eare (The lIaworth Social Work Practice Press, an irnprint ofThe Haworth Press, Ine.) Vol. 35, No. 1/2,2002, pp. 391-406; and: Social Work Health and Mental flealth: Practice, Research amI Programs (ed: Alun C. Jackson, and Steven P. Segal) The I !aworth Social Work Practice Press, an imprint 01' The Haworth Press, Inc., 2002, pp. 391-406. Single or multiple copies ofthis article are available for a fee from The Haworth Document Delivery Service ll-SOO-HA WORTH, 9:0() a.m. - 5:00 p.m. (EST). E-mail address: [email protected]].

© 2002 by The Haworth Press, Inc. All rights reserved.

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of the illness and 18 months later. The questionnaire consisted of standardized scales measuring relationship factors (i.e., mutuality, silencing-the-self schemas, and relationship-focused coping) and psychosocial well-being (i.e., quality of life, depression, self-care agency). The results of the follow-up study revealed that the women's psychosocial well-being changed for the better between Time 1 and Time 2, while their relationship factors remained constant. Only one relational factor, silencing-the-self beliefs, at Time I, was significantly correlated with a well-being variable at Time 2. However, relationship factors at Time 2 were significantly correlated with psychosocial wellbeing at Time 2, indicating that relational factors continue to playa significant role in the sample's psychosocial adjustment. {Article copies

available for a fee from The Haworth Document Delivery Service: 1-800-HAWORTH. E-mail address: Website: © 2002 by The Haworth Press, lnc. All rights reserved.]

KEYWORDS. Cancer, women, quality of life, dose relationships, psychosocial adjustment, survivorship, longitudinal study

Coincident with medical advances in cancer treatment has been an increase in the number of survivors. Some have estimated that as many as half the people diagnosed with cancer now survive for five or more years (Norman & Brandeis, 1992). As this population continues to grow, greater emphasis is also being placed on the quality of li fe experienced by those whose cancer treatment is successful. While most patients would willingly trade the difficult psychosocial stresses associated with active treatment for the uncertainty of survivorship, practice and research have demonstrated that survivors may contend with a variety of issues and problems unique to this coveted phase of the illness trajectory. These include difficulty with physical functioning and premature aging (Charles, Selleck, Montesanto, & Mohide, 1996; Polinsky, 1994; Dow & Ferrell, 1997), fatigue (Whedon, Steams, Mills, et al. 1995), sexual problems (Andersen, Anderson, & deProsse, 1989a; Charles, Sellick, Montesanto, & Mohide, 1996; Curbow, Legro, Baker, Wingard, & Somerfield, 1993), grief over infertility (Dow & Rerrel!, 1997), employment and insurance discrimination (Christ, Lane, & Marcove, 1995; Greenberg, Goorin, Gebhart, Gupta, Stier, Harmon, & Mankin, 1994; Norman & Brandeis, 1992), fear of recurrence (Cella &

Karen Kayser and Mary Sormanti

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Tross, 1987; Lesko & Holland, 1988; Polinsky, 1994), and anxiety associated with medical follow-up (Polinsky, 1994). Altematively, there has also been recognition that the frequency and intensity with which these issues occur for survivors may not be as problematic as on ce projected (Andersen, Anderson, & deProsse, 1989b; Charles et al., 1996). For example, several studies have found that levels of psychological distress and psychosocial problems in cancer survivors are comparable to those in the normal population (Cella & Tross, 1987; Charles et al., 1996; Greenberg et al., 1994). Furthermore, a number of positive psychological sequelae of cancer cure have also been identified. These include a strengthening of the family unit and other interpersonal relationships (Curbow et al., 1993; Welch-McCaffrey, Hoffman, Leigh, Loescher, & Meyskens, 1989), positive changes in self-concept and an increased appreciation of and satisfaction with life (Charles et al., 1996; Dow & Ferrell, 1997; Kennedy, Tellegen, Kennedy, & Haverick, 1978; Polinsky, 1994; Welch-McCaffrey, Hoffman, Leigh, Loescher, & Meyskens, 1989). While there have been numerous studies examining women's psychosocial adjustment to cancer, a major drawback ofthis research is the absence oftheoretical perspectives related to women's psychological development and coping. Since the late 1970s, theory-building and research on moral reasoning (Gilligan, 1982; Taylor, Gilligan, & Sullivan, 1996), women's cognitive styles (Belenky, Clinchy, Goldberger, & Tarule, 1986), women's social development (Jordan, Kaplan, Miller, Stiver, & Surrey, 1991) and women's relationship schemas (Jack, 1990) have differentiated women's psychological experiences from those of men and have led to the development of new epistemological perspectives from which women know and experience the world. This new body of knowledge, however, has not been applied to many areas of women's lives, including adaptation to chronic or life-threatening illnesses. Since it was estimated that in 2000, 182,800 new cases of invasive breast cancer and 48,900 new cases of uterine or cervical cancer alone will be diagnosed among women in the United States (American Cancer Society, 2000), it is critical that health care professionals better understand the factors that may impact positively on women's adjustment. This research study is based on relational theory, which suggests that a woman's psychological development is inextricably bound with her ongoing relationships and her identity includes the ability to identify the feelings of another as weIl as to recognize her own. Utilizing the relational perspective, we propose that women's coping abilities are shaped

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SOCIAL WORK HEALTH AND MENTAL HEALTH

and continue to develop in the context of their close relationships (Kayser, Sormanti, & Strainchamps, 1999; Sormanti, Kayser, & Strainchamps, 1997). This paper ex amines the impact of several relational factors on a woman's long-term psychosocial adaptation to cancer. These factors include mutuality, relationship beliefs, and relationship-focused coping strategies. According to the relational perspective, the pursuit and development of mutually empathic relationships with others is a basic and significant goal of a woman's psychological development (Jordan, 1991). Mutuality, as conceptualized by the relational theory, involves components of empathy, engagement, authenticity, diversity, and empowerment between two persons (Genero, Miller, Surrey, & Baldwin, 1992). Hence, we suggest that a woman's ability to co pe with a serious iIIness will be positively reinforced and enhanced by relationships characterized by mutuality. The second relational factor examined involves women's relationship schema. Individuals form certain beliefs and expectations of whom they are and how to behave in relation to significant people in their lives. Some of these beliefs may promote effective coping while others may be mal adaptive when dealing with an iIlness. Of particular interest in this study was the schema about how women should develop and maintain their intimate relationships as prescribed by the broader culture. We decided to examine the silencing-the-self schema (Jack, 1990) which consists of beliefs that women must be self-sacrificing and must silence themselves in order to develop and maintain intimate relationships. Last, we examined the association of relationship-focused coping strategies with women's adaptation. Coping can be defined as constantly changing one's thinking and behavior to manage specific external or internal demands of one's resources (Lazarus & Folkman, 1984). Previous studies have demonstrated that styles of coping (e.g., active versus avoidant) may be correlated with mood, adjustment (Dunkel-Schetter, Feinstein, Taylor, & Falke, ] 992; Friedman, Baer, Lewy, Lane, & Smith, 1988) and prognosis (Pettingale, Morris, Greer, & Haybittle, 1985). However, these studies have been based on theories that conceptualize coping as an individual effort and have not taken into account the impact of interpersonal relationships on adaptation to stress (Coyne & Fiske, 1992; Coyne & Smith, 1991). Consistent with Coyne and Smith (1991), we conceptualized coping as a dyadic process that involves responding to another's presence and emotional needs as weil as one's own.

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There were two primary aims in examining the relationship between women's psychosocial well-being and relationship factors at two time points on the illness trajectory. First, we wanted to determine whether women's levels of depression, quality-of-life, and self-care agency changed between Time 1 and Time 2. Second, we were interested in examining wh ether relationship factors-both at Time 1 and Time 2-would be significantly correlated with women's adaptation to cancer at Time 2. In other words, do women's relationship factors continue to be associated with adjustment even 18 months later? METHOD

Sampie The sampie consisted of 26 women who were surveyed at two time points: first, during their treatment of cancer (within 3 years of receiving the diagnosis) and second, 18 months years later. At Time 1, participants were receiving some form of treatment such as chemotherapy or radiation or were being closely monitored during the post-treatment phase. The average length of time since diagnosis was ten months. All participants were mothers of at least one child who was 12 years old or younger. This last criterion was made because we were particularly interested in women who were dealing with the demands of caring for young children. The sampie size at Time 1 consisted of 49 women and at Time 2 it was 26 women. The decrease in sampie size between Time 1 and Time 2 was due to nine women dying, five women moving with no forwarding addresses, and the remaining nine not retuming their questionnaires. All participants had been patients at two large teaching hospitals in Massachusetts. Except for prophylactic medications, none ofthe participants were recei ving treatment for cancer at the time of follow-up. Participants' ages ranged from twenty-eight to forty-seven years old with the mean age of 37.5 (SO = 4.9). Twenty-three (89%) were married; two (8%) were single; and 1 (4%) was divorced. The number of chi 1dren ranged from one to four with the majority of the mothers (84%) having either one or two children. Seventy-six percent had attained at least a bachelor's degree. Thirty-five percent indicated that their occupation was homemaker/parent, thirty-five percent had a professional occupation, fifteen percent had managerial occupations, and fifteen per-

396

SOCIAL WORK HEALTH AND MENTAL HEALTH

cent had other occupations such as ski lied labor. The sampie primarily consisted of Caucasian women. Eighty-five percent were Catholic; 4 percent were Protestant, and 11 percent reported other religious affiliations. The women had various types of cancer with the most common forms being breast (39%), leukemia (19%), lymphoma (15%) and Hodgkin's (12%).

Procedures Participants of the study at Time 1 had been identified by multidisciplinary teams consisting of physicians, nurses, and social workers. Institutional Review Board regulations were followed for both participating institutions. The consent form indicated that a follow-up study would be conducted. Potential participants received an introductory letter describing the study and requesting their participation. This introductory letter also included an opt-out postcard wh ich was to be retumed within two weeks by those who did not wish to participate. Unless a postcard was received, potential participants were then contacted by telephone and a questionnaire was mailed. At approximately eighteen months later, follow-up questionnaires consisting of the same sc ales were sent to all of the women who had initially retumed their questionnaires.

Measures Outcome Variables. The sample's psychosocial adjustment was measured by the following three scales. First, psychosocial well-being was measured by the Functional Assessment of Cancer Therapy (FACT) Scale (Cella, Tulsky, Gray, Sarafian et al., 1993), a scale measuring quality of life for cancer patients. It included 32 items wh ich comprise five subscales: physical well-being, sociallfamily well-being, relationship with the doctor, emotional well-being, and functional well-being. The FACT has been demonstrated to have sufficient reliability, validity and sensitivity to change over time (Cella, Tulsky, Gray, Sarafian et al., 1993). Depression was measured by the Beck Depression Inventory (Beck, 1961). The BDI is a 21-item measure of symptoms and attitudes of depression and is one of the most widely used instruments for assessing the intensity of depression in psychiatrically diagnosed patients and also for detecting depression in normal populations. A meta-analysis of research studies focusing on the psychometric properties of the BDI

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yielded a mean alpha coefficient of .86 for psychiatrie patients and .81 for nonpsychiatrie subjects (Beck, Steer & Garbin, 1988). The concurrent validities ofthe BDI with cJinical ratings and the Hamilton Psychiatrie Rating Scale for Depression (HRSD) were also high. Self-care agency, which is the evaluation of one's power to perform activities essential for self-care, was measured by the Exercise of Self-Care Agency Scale (Kearney & Fleisher, 1979). This 42-item scale measures the following subconstructs: (I) an attitude of responsibility for self, (2) motivation to care for self, (3) the application ofknowledge to self-care, (4) the valuing of health priorities, and (5) self-esteem. Test-retest reliability ofthe Exercise of Self-Care Agency Scale yielded acceptable correlations (Kearney & Fleisher, 1979). Construct validity was established by a significant positive correlation of exercise of self-care agency with scales of self-confidence and achievement and a negative significant correlation between exercise of self-care agency and abasement (Kearney & Fleisher, 1979). Independent Variables. Three variables related to the quality of the women's cJose relationships were measured. First, mutuality of close relationships wh ich can be described as the empathic and supportive expression of feelings, thoughts, and activity between individuals was measured by the Mutual Psychological Development Questionnaire (MPDQ) (Genero et al., 1992). Results of an initial validation study indicated high interitem reliability (alpha coefficients ranged from .89 to .94). Construct and concurrent validity were demonstrated with a high correlation between the MPDQ and measures of social support, relationship satisfaction and relationship cohesion. There was a high negative correlation between the MPDQ and depression as measured by the Center for Epidemiological Studies Depression Scale (CES-D). In a second study, test-retest reliability of the sc ale was satisfactory, and high interitem consistency was replicated (Genero et al., 1992). Second, relationship belief!; was rneasured by the Silencing-the-Self Scale (STSS) (Jack and Dill, 1992). This scale rneasures specific beliefs about how wornen should behave in dose relationships, especially ways expected by the traditional fernale role. There are four subscales: externalized self-perceptions Uudging the self by external standards), care as self-sacrifice (securing attachrnents by putting the needs of others before the self), silencing the self (inhibiting one's seIf-expression and action to avoid conflict and possible loss of relationship), and divided self (the experience of presenting an outer cornpliant self which may conflict with needs of the inner seIf). For exampIe, items incJude "Caring means putting the other person's needs in front of rny own";

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"Considering my needs to be as important as those of the people I love is selfish." According to lack and Dill (1992) the STSS has a high degree of internal consistency and test-retest reliability and was significantly correlated with the Beck Depression Inventory using a variety of female subjects. Internal consistency (alpha) for the total STSS scores ranges from .86 to .94. Hem-total correlations are generally acceptable, ranging from .77 to .91. Relationship-focused coping is defined as a process that involves dealing with another's presence and emotional needs as weil as one's own (Coyne & Smith, 1991). It was measured with a 23-item scale developed by Coyne and Smith (1991). The scale consists of two subscales: active engagement, a strategy whereby the patient actively involves the partner in coping with the illness, and protective buffering , a strategy of excluding the partner in order to avoid disagreements or to protect hirn or her from disturbing situations. In a study of couples coping with myocardial infarction (Coyne & Smith, 1991), the active engagement subscale had alpha coefficients of .90 and .89 respectively for the patients and spouses. The protective buffering subscale had alpha coefficient of .92 and .91 respectively for the patients and the spouses. Moderating Variables. These factors included severity of the physical symptoms ofthe illness and sociodemographic variables. Whereas a medical team' s assessment of the stage and prognosis of a patient' s cancer is one way to measure the severity of the illness, we were interested in each woman's own evaluation of her physical symptoms associated with her cancer. A seven-item sub sc ale of the Demands of Illness Inventory (0011) (Haberman, Woods, & Packard, 1990) was used to measure the frequency of illness-related physical symptoms and their perceived severity in the current phase of the participant's illness. Respondents were also asked questions regarding the type of cancer they had, the date of diagnosis, any relapses, and the type of treatment they were undergoing. Level of income and occupation were used to measure socioeconomic status. Data Analysis

One sampie t-tests were conducted to determine ifthere were significant differences in the means of the psychological adjustment variables and relational variables between Time 1 and Time 2. Bivariate analyses were conducted with all the variables at Time 1 and Time 2. To test the

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influence of the moderating variables, partial correlations between the Time I and Time 2 variables were conducted. .

RESULTS Comparisons 0/ Psychosocial Adjustment and Relational Factors at Time 1 and Time 2 Research Question 1. Have there been any significant changes in the women's level of quality of life, depression, and self-care agency between Time 1 and Time 2? One sampie t-tests were conducted to determine ifthere were significant differences in the means of the variables measuring psychosocial adjustment, that is, depression, quality of life, and self-care agency. As shown in Table I, there were statistically significant changes in all of these variables. Depression decreased significantly (t = 5.78, P < .001) and both quality of life and self-care agency increased significantly (f = 2.69, P < .01; f = 3.43, p < .01). Demands of the illness also decreased significantly (f = -2.98, p < .01). With the stress of the cancer and its treatment dissipating (as indicated by the decreases in the demands of illness scores), it is not too surprising that psychosocial adjustment would simultaneously improve. Likewise, the increase in this sample's exercise of self-care agency scores also makes sense within the context of decreased demands of illness. Initially, it may seem logical to conjecture that during the initial crisis of diagnosis, when one's health is first understood to be in jeopardy, an individual's sense of self-care agency might be mobilized. However, our data seem to suggest that during this initial period of diagnosis and treatment, women' s sense of efficacy and power regarding their health may be quite low. They may feel as if the cancer is controlling them. When treatment has ended successfully, and patients' health begins to return to pre-morbid levels, their sense of power and efficacy also returns. Research Quesfion 2. Have there been any significant changes in the women' s levels of mutuality, silencing the self, protective buffering, active engagement, and demands of illness between Time 1 and Time 2? With the exception of active engagement, there were no significant differences in the sample's scores on relational variables between Time 1 and Time 2. The level of perceived mutuality, silencing the self, and protective buffering remained relatively consistent between the two pe-

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riods of time (see Table 1). In general, it appears that the relational aspects of these women's lives did not change significantly. The level of mutuality, silencing-the-self beliefs, and protective buffering were similar between Time 1 and Time 2. There was a significant decrease in the sample's scores on active engagement (t = -2.39, P < .05). Interestingly, this coping strategy was less likely to be utilized at Time 2 than Time 1. Perhaps as the demands of the illness decreased, the women did not feel it necessary to engage their families in coping as much as they had previously.

Relational Factors and Psychosocial Adjustment Research Question 3. Will mutuality, silencing-the-self beliefs, and relationship-focused coping at Time 1 affect women's adaptation to cancer at Time 2? Bivariate analyses were conducted to examine the correlations between relational variables at Time 1 and outcome variables at Time 2. Silencing-the-self beliefs at Time 1 is significantly correlated with self-care agency at Time 2 (see Table 2). This was the only statistically significant correlation between a Time 1 relational variable and a Time 2 outcome variable. A significant relationship between silencing-the-self beliefs and self-care agency is consistent with a finding in the initial TABlE 1. Comparisons of Sampie Between Time 1 and Time 2 for Study Variables (N = 26)

Variable P~}'choSOQigl

Time 1

Time 2

Mean

Mean

t

Adjustml;lnt

Depression

15.7

9.33

Well-Being

73.8

82.96

2.69**

161.65

178.00

3.43**

9.00

-2.98**

Sell-Care Agency Demands 01 Iliness

13.5

5.78***

Relational Variables

4.39

4.47

.66

79.31

78.73

-.13

Protective Buffering

2.92

2.85

-.29

Active Engagement

3.31

2.96

-2.39'

Mutuality Silencing the Seil

*p< .05, **p< .01, ***p< .001

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Karen Kayser and Mary Sormanti

TAßlE 2. Correlation Coefficients of Time 1 Study Variables and Time 2 Study Variables (N = 24) Time 1 Variables

Time 2 Variables OylCQme Variables

Protective Buffering

Active Engager

-.14 a

-.15 .41 *

-.16 .44*

-.24

.26

Silencing the Self

.23

.02

Protective Buffering

.02

Active Engagement

.08

Depression

.24 a

Mutuality

Quality of Life Self-Gare

RelaliQnal Variables

Depression Quality Self-Gare Mutuality Silencing of Life Agency the Self

.22 -.28

.56**

.11 -.46*

-.27

.60***

-.01

-.23

-.24

.31

.38

.21

.01

-.21

-.25

.08

.17

.02

-.23 b

-.44*

-.26 b

.21 b

.28b

.20 .29

.17 -.37 a

-.20 .43*

-.04 .25

.10 .47*

.07 -.37

-.22

Agenc~

• < .05, ** < .01, *** < .001

a Gorrelation was significant when controlling for demands of illness b

Gorrelation was significant when controlling for education

study which found the same relationship (cf. Kayser, Sormanti, & Strainchamps, 1999). On a cautionary note, the statistical analysis does not allow us to conclude with certainty that this relationship is causal but only that a significant association exists between the two variables. To determine the moderating effects of age, demands of illness, education, and income, partial correlations were calculated for the relational variables at Time 1 and the outcome variables at Time 2. There were no differences in the correlations between these variables when controlling for the moderators. Other correlations between Time 1 and Time 2 variables are noteworthy. Table 2 shows that mutuality at Time 1 was significantly correlated with mutuality at Time 2 (r = .56, p < .01) and silencing-the-self beliefs at Time I was significantly correlated with silencing-the-selfbeliefs at Time 2 (r = .50, p < .001). Self-silencing at Time 1 was also significantly correlated with protective buffering at Time 2 (I' = .41, p < .05) and with active engagement at Time 2 (r = .44, p < .05). Depression at Time 1 was negatively correlated with self-care agency at Time 2 (I' = - .44, p < .05) and quality of life (Time 1) was positively correlated with active engagement (Time 2) (r = .43, p < .05).

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SOCIAL WORK HEALTH AND MENTAL HEALTH

Several correlations obtained levels of statistical significance when controlling for the moderating variables. Controlling far demands of illness, there were significant correlations between depression at Time 1 and depression at Time 2 (r = .46, p < .05), and between self-care agency at Time 1 and self-silencing at Time 2 (r = - .39, p < .05). When controlling for education, significant correlations resulted between depression at Time 1 and the Time 2 variables of quality of life (r = - .45, p < .05), mutuality (r = - .42, P < .05), silencing-the-self (r = .41, p < .05), and protective buffering (r = .44, p < .05). There were no significant moderating effects of age and level of income. Hence, the data suggest that when controlling far demands of illness and education, significant relationships emerge between psychosocial adjustment and relational factors at Time 1 and Time 2. In particular, controlling far education results in significant relationships between depression at Time 1 and several variables at Time 2, namely, quality of life, mutuality, silencing-the-self and protective buffering. Research Question 4. Will relationship factors at Time 2 be significantly associated with the women 's psychosocial adjustment at Time 2? As shown in Table 3, mutuality was significantly correlated with quality of life (r = .43, p < .05) and self-care agency (r = .55, p < .01). While the correlation with depression was in the hypothesized direction, it was not statistically significant. Self-silencing and protective buffering were positively correlated with depression and negatively correlated with quality of life and self-care agency. All of these correlations were statistically significant and indicate the important associations between the quality of the sample's relationships and their psychosocial adjustment. Active engagement was not significantly correlated with any of the outcome variables. As explained in our previous work (Kayser et al. , 1999), mutuality may play a mediating role in whether active engagement of family members results in a positive outcome. In other words, a woman may be attempting to engage family members in helping her cope with her cancer but the result of this engagement on her well-being depends on the response received from her family members. Similar correlations between the relational and outcome variables at Time 2 resulted when controlling for age, demands of illness, income, and education. The only correlation that went from statistical significance to being not statistically significant was the relationship between protective buffering and depression.

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Karen Kayser and Mary Sormanti

TAßLE 3. Correlation Coefficients of Relational Variables and Psychosocial Outcome Variables at Time 2 (N = 24) Relational Variables

Outcome Variables Depression

Mutuality

Quality of Life

-.24

.43* -.46*

Sell-Care Agency

.55** - .75***

Silencing the SeIt

.62***

Protective Buttering

.39*

-.44*

- .66***

Active Engagement

.33

-.37

-.35

*p< .05, **p < .01, ***p < .001

DISCUSSION Consistent with previous research (Andersen, Anderson, & deProsse, 1989b; Cella & Tross, 1986, 1987; Charles et al., 1996; Greenberg et al., 1994; Kennedy, Tellegen, Kennedy, & Haverick, 1978; Polinsky, 1994; Welch-McCaffrey et al., 1989), the psychosocial adjustment of the women in OUf sampie improved between Time 1 and Time 2. While the psychosocial well-being of these women changed over time, the mutuality of their relationships, self-silencing beliefs, and relationship-focused coping appeared to be stable. This second finding seems to be in contrast to previous studies that found cancer patients perceived their interpersonal relationships to grow stronger over time (cf. Curbow et al., 1993; Welch-McCaffrey, Hoffman, Leigh, Loescher, & Meyskens, 1989). Similar to the findings of our initial study (Kayser et al., 1999), we found that there continued to be significant correlations between relati on al variables and psychosocial adjustment for OUf sampie 18 months later. These significant correlations continue to confirm OUf hypotheses that the quality of women' s dose relationships plays an important role in their psychosocial adjustment, not only during periods of high stress associated with the diagnosis and treatment of a Iife-threatening illness but throughout their Jives. It is difficult from OUf data to be conclusive about what factors early in the disease process predict psychological outcome later. Silencing-the-self at Time 1 was the only relational variable that was significantly correlated with a Time 2 outcome variable, namely self-care agency. Hence, self-silencing beliefs is a relational factor that social workers should assess carefully dUfing the early phase of cancer. A

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woman's beliefs about self-sacrifice and expressing her needs may influence her self-care agency; that is, her attitude of responsibility to herself, her motivation to care for herself, her valuing of health priorities, and her self-esteem. These self-silencing beliefs not only influence her self-care early in the course ofher illness but maintain their influence at a later phase also. The moderating variables of age, education, income, and demands of illness did not seem to exert a significant impact on either the relational or psychosocial adjustment variables. However, it is noteworthy that when controlling for education there was a significant relationship between depression at Time 1 and Time 2 factors such as quality of life, mutuality, protective buffering, and silencing the self. Again, we cannot conclude that depression predicts these variables at a later time, but it is important to note that there appears to be an association. Hence, depression early in the disease process should not be ignored or minimized as temporary and inconsequential to later adjustment. Despite the significant, life-altering stresses associated with cancer and its treatment, the women in our sampie appear to have coped quite weIl. These psychosocial outcomes likely reflect not only personal strengths of the women themselves, but also the support of partners, children, family, and close friends. Nevertheless, survivor status for the women in this sampie still includes several important issues that need to be negotiated, in particular, sexuality/intimacy issues. Forty percent of our sampie at follow-up indicated on a single questionnaire item that they were "not at all satisfied" with their sexual lives. The consequences of their cancer on body image, sexual functioning, and intimacy with their partners need to be explored by health care practitioners. Practitioners can help women to negotiate this issue, flfst by preparing them for the possibility that it may become an issue and that it may continue to be problematic or require additional attention even after treatment has ended. Because ofthe small sampie size and the homogeneity ofthe sampie, the generalizability of these findings are limited and cannot be assumed to hold true for other sampies of female cancer patients. Furthermore, our return rate of 53% makes it difficult to generalize to the total sampie. Although only one patient told us she preferred not to participate in the follow-up study because the topic was too emotional for her, there may have been others who refused for the same reason. Therefore, there could be a bias toward having better adjusted patients in the sampie. Future research with larger sampies including women of various ethnicities and socioeconomic statuses would provide a more complete picture of the long-term psychosocial adjustment of women with cancer.

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REFERENCES American Cancer Society-Facts & Figures 2000, American Cancer Society, Ine., Atlanta, GA Andersen, B.L., Anderson, B" & deProsse, C, (1989), Controlled prospective longitudinal study ofwomen with cancer: L Sexual functioning outcomes. Journal ofConsulting and Clinical Psychology, 57(6),683-691. Andersen, B.L., Anderson, B., & deProsse, C, (1989). Controlled prospective longitudinal study of women with cancer: 1I. Psychological outcomes. Journal of Consulting and Clinical Psychology, 57(6),692-697. Beck, AT., Ward, c'H., Mendelson, M., Mock, J. & Erbaugh, J. (1961). An Inventory for Measuring Depression. Archives of General Psychiatry, 4, 561-571. Beck, A.T., Steer, R.A, & Garbin, M.G. (1988). Psychometric Properties 01' the Beck Depression Inventory: Twenty-Five Years of Evaluation. Clinical Psychology Review, 3,77-100. Belenky, M.F., Clinchy, B.M., Goldberger, N.R., & Tarule, J.M. (1986). Women's Ways ofKnowing: The Development ofSelj; Voice, and Minel. New York: Basic Books, Inc. Burbie, G.E., & Polinsky, M.L. (1992). Intimacy and sexuality after cancer treatment: Restoring a sense of wholeness. Journal ofPsychosocial Oncology, 10(1), 19-33. Cella, D.F., & Tross, S. (1986). Psychological adjustment to survival from Hodgkin's disease. Journal of Consulting and Clinical Psychology, 54(5), 616-622. Cella, D.F., Tulsky, D.S., Gray, G., Sarafian, B. et al. (1993). The Functional Assessment of Cancer Therapy Scale: Development and Validation of the General Measure. Journal of Clinical Oncology, 11,570-579. Charles, K., Sellick, S.M., Montesanto, B., & Mohide, E.A (1996). Priorities of cancer survivors regarding psychosocial needs. Journal of Psychosocial Oncology, 14(2), 57-72. Christ, G.H., Lane, J.M., & Marcove, R. (1995). Psychosocial adaptation of long-term survivors of bone sarcoma. Journal ofPsychosodal Oncology, 13(4), 1-22. Coyne, J.c. & Fiske, V. (1992). Couples Coping With Chronic and Catastrophic Illness. In Family Health Psychology, Ohio: Hemisphere Publishing Corporation. Coyne, J.c. & Smith, D.AF. (1991). Couples Coping With Myocardial Infarction: A Contextual Perspective on Wives' Distress. Journal ofPersonality and Sodal Psychology, 61,404-412. Curbow, B., Legro, M.S., Baker, F., Wingard, J.R., & Somerfield, M.R. (1993). Loss and recovery themes of long -term survivors of bone marrow transplants. Journal of Psychosocial Oncology, 10(4),1-20. Dow, K.H., & Ferrell, B.R. (1997). Mirror, mirror, on the wall: Descriptions of body image among cancer survivors. Quality ofLife-A Nursing Challenge, 5(4), 100-105. DunkelSchetter, c., Feinstein, L.G., Taylor, S.E., & Falke, R.L. (1992). Patterns of coping with cancer. Health Psychology, 11 (2), 79-87. Friedman, L.c" Baer, P.E., Lewy, A, Lane, M., & Smith, F.E. (1988). Predictors of psychosocial adjustment to breast cancer. Journal of Psychosocial Oncology, 6(1/2), 75-94.

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Genero, N.P., Miller, J.B., Surrey, J., & Baldwin, L.M. (1992). Measuring Perceived Mutuality in Close Relationships: Validation ofthe Mutual Psychological Development Questionnaire. Journal ofFamily Psychology, 6 (I), 36-48. Voice: Psychologieal Theory and Women's DevelGilligan, C. (1982). In a D~fferent opment. Cambridge: Harvard University Press. Greenberg, D.B., Goorin, A., Gebhart, M.C., Gupta, L., Stier, N., Harrnon, D., & Mankin, H. (1994). Quality 01' life in osteosarcoma survivors. Oncology, 8(11), 19-25. Jack, D.C. (1991). Silencing the Seil' Women and Depression. Cambridge, Massachusetts: Harvard University Press. Jack, D.C. & Dill, D. (1992). The Silencing the Self Scale: Schemas of Intimacy Associated with Depression in Women. Psychology ofWomen Quarterly, 16, 97-106. Jordan, J. V. (1997). A Relational Perspective for U nderstanding Women' s Development. In J.V. Jordan (Ed.), Women's Growth in Diversity: More Writingsfrom the Stone Center (pp. 9-24). New York: Guilford Press. Jordan, lV. (1991). The Meaning of Mutuality. In J.V. Jordan, A.G. Kaplan, J.B. Miller, I.P. Stiver, & J.L. Surrey (Eds.), Women's Growth in Connection: Writings Ji"om the Stone Center (pp. 81-96). New York: Guilford Press. Jordan, J.V., Kaplan, A.G., Miller, J.B., Stiver, I.P., & Surrey, J.L. (l991).Women's Growth in Connection: Writingsfrom The Stone Center. New York: Guilford Press. Kayser, K., Sormanti, M., & Strainchamps, E. (1999). Women coping with cancer: The influence of relationship factors on psychosocial adjustment. Psychology ofWamen Quarterly, 23, 725-739. Kearney, B. Y., & Fleischer, B.J. (1979). Exercise ofSelf-Care Agency Scale Manual. Kennedy, B., Tellegen, A., Kennedy, S., & Havernick, N. (1976). Psychological response of patients cured of advanced cancer. Cancer, 38, 2184-2191. Lazarus, R.S. & Folkman, S. (1984). Stress, Appraisal, and Coping. New York: Springer Publishing. Miller, J.B. (1976). Toward a New Psychology ofWomen. Boston: Beacon Press. Norman, A.D., & Brandeis, L. (1992). Addressing the needs of survivors: An action research approach. Journal ofPsychosocial Oncology, 10(1), 3-18. Packard, N.J., Haberman, M.R., Woods, N.F. & Yates, B.C. (1991). Demands ofIllness among Chronieally III Women, 13,434-457. Pettingale, K.W., Morris, T., Greer, S., & Haybittle, J. (1985). Mental attitudes to cancer: An additional prognostic factor. Lancet, 1, 750. Polinsky, M.L. (1994). Functional status of long-term breast cancer survivors: Demonstrating chronicity. Health & Social Work, 19(3),165-173. Sormanti, M., Kayser, K., & Strainchamps, E. (1997). A relational perspective of women coping with cancer: A preliminary study. Social Work in Health Care, 25, (1/2),89- 106. Taylor, J.M., Gilligan, C. & Sullivan, A.M. (1996). Between Voice and Silenee. Cambridge, MA: Harvard University Press. Welch-McCaffrey, D., Hoffman, B., Leigh, S.A., Loescher, L.J., & Meyskens, F.L. (1989). Surviving adult cancers: Part 2. Psychosocial implications. Annals ofInternal Medicine, 111,517-524. Whedon, M.B., Stearns, D., Mills, L.E. et al. (1995). Quality of life of long-term survivors of autologous bone marrow transplantiona. Oncology Nursing Forum, 10, 1527-1535.

Evaluating an Activity Intervention with Hemodialysis Patients in Israel Gail K. Auslander, DSW, MPH Adina Buchs, MSW

SUMMARY. As a life-threatening and potentiaBy disabling disease, End Stage Renal Disease and its treatment cause stress as weB as other psychosocial problems for patients and their families. This paper examines the results of an innovative activity-based intervention aimed at reducing some of the psychosocial repercussions of hemodialysis. A modified withdrawallreversal design was employed to compare patients participating in the intervention and those who did not, at two points in time. The findings confirmed that dialysis patients in general have relatively high levels of psychological distress, difficulty adhering to the treatment regimen and poor self-rated health. Patients participating in the group activity were more anxious and had lower levels of interdialytic weight gain than the non-participants. After the intervention was terminated, levels of psychological distress, hostility and phobie anxiety among patients in the treatment group dropped, while their weight gain continued to be less than that of non-participating patients. The implications ofthese findings as weil as

Gail K. Auslander is affiliated with the Paul Baerwald School of Social Work, The Hebrew University of Jerusalem, Jerusalem, Israel. Adina Buchs is affiliated with Shaare Zedek Medical Center, Jerusalem, Israel. This paper was presented at the 2nd International Conferenee on Social Work and Health and Mental Health, Melbourne, Australia, January 1998. [Haworth co-indexing entry note]: "Evaluating an Activity Intervention with lIemodialysis Patients inlsrael."' Auslander, Gail K., and Adina Buchs. Co-published simultaneously in Social Work illllealth ('are (The Haworth Social Work Practice Press, an imprint ofThe Haworth Press, Inc.) Vol. 35, No. 1/2,2002, pp. 407-423; and: Sodal Work lIealth and Melllaillealth: Practice, Research ami Program.l' (ed: Alun C'. Jackson, and Steven P. Segal) The Haworth Social Work Practice Press, an imprint 01' The lIaworth Press, Inc., 2002, pp. 407-423. Single or multiple copies of this artide are available for a fee ffllm The Ilaworlh Document Delivery Service [1-800-HAWORTH, l):OO a.m. - 5:00 p.m. (EST). E-mail addre,,: getinl'o@ haworthpressinc.com 1.

© 2002 by The Haworth Press, Ine. All rights reserved.

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the methodological difficulties entailed in this type of study are examined. [Article copies available for a fee from The Haworth Document Delivery

Service: 1-800-HAWORTH. E-mail address: Website: © 2002 by The Haworth Press, Inc. All rights reserved.]

KEYWORDS. Social work, dialysis, activity, intervention, experiment, Israel

End stage renal disease (ESRD) affects approximately a quarter of a million people in the US (NIDDK, 1996). Incidence rates range from 75 to 125 new cases per million population in sites around the world (NIDDK, 1996; Ministry of Health, 1996; ANZDA T A, 1998; Lee, 1998). In Israel, the number of people receiving dialysis increases by an average of20 permonth (Y. Berlowitz, personal communication). It is a life-threatening and potentially disabling disease, which in and of itself causes stress as weil as other psychosocial problems for patients and their families. The treatment regimen, including transplantation and/or various types of dialysis, medication and strict dietary restrietions are often additional sources of stress. This paper examines an innovative intervention aimed at reducing some of the psychosocial repercussions of one type of treatment-hemodialysis. . We first provide abrief description of the disease process and the main treatment programs, focusing on the most common, hemodialysis. We then explore some of the main research findings regarding the psychosocial effects of the disease and its treatment. An innovative intervention is described, followed by a description of our initial attempt to assess its outcomes, both psychosocial and medical. The findings of the assessment are critieally discussed, both as to the outcomes themselves as weil as the methodological difficulties engendered in trying to carry out c1inieal trials within a hospital social work department.

LITERATURE REVIEW End stage renal disease (ESRD) is the term used to denote a condition of total or ne ar total and permanent kidney failure. That is, the inability of the kidneys to perform their key function of removing toxie and waste products, such as urea and creatinine from the body. It is most

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commonly caused by diabetes, glomerulonephritis (inflammation ofthe kidney) and hypertension, although the relative importance ofthese and other factors varies from population to population (NIDDK, 1994 & 1998; ANZDATA, 1998). People with ESRD must undergo some form of renal replacement therapy-either dialysis or transplantation-to stay alive. Of the various types of dialysis (hemodialysis, continuous ambulatory peritoneal dialysis, continuous cyclic peritoneal dialysis and intermittent peritoneal dialysis), hemodialysis is by far the most common (Ministry of Health 1996; ANZDA T A, 1998). This procedure, in which a machine is used to filter waste products and excess fluid from the patient' s blood, takes about four hours to complete and must be carried out three times a week. While it can be done at horne, most patients are treated in hospital or community-based dialysis centers. And while dialysis treatment can increase longevity, it is not a cure for ESRD; mortality rates average between 10-15 per 100 patients per year in Australia, Israel and the US (NIDDK, 1996; ANZDATA, 1998; Ministry of Health, 1996). In addition to attending regular dialysis sessions, ESRD patients generally undergo surgical procedures to create a vascular access point through which blood passes into the dialysis machine. They must also take a variety of medications, which can include antibiotics, anti hypertensives and steroids. And they must adhere to a strict diet, limiting the amount of salt, fluids, phosphorous, and regulating their protein and potassium intake (Lee, 1998). There exists ample evidence as weH as theoretical backing for the fact that, as a chronic and life-threatening disease, ESRD itself causes psychosocial problems for the patient and the patients' families (Vourlekis & Rivera-Mizoni, 1997; Soskoine & Kaplan-DeNour, 1989; Sno et al., 1992; Gudes, 1995). Furthermore, hemodialysis as an intervention for patients with ESRD, as weH as the management ofthe treatment regimen associated with hemodialysis, are sources of stress for patients and their families. Patients undergoing hemodialysis have been found to be depressed, anxious, suffer from psycho-organic disorders and somatic symptoms, as weH as lower quality of life (Mapes, 1991; Soskoine & Kaplan-DeNour, 1989; Sno et al., 1992; Levenson, 1991). This is particularly true among patients undergoing dialysis in centers as opposed to at horne (ANZDATA, 1998). ESRD patients with a poor psychological state and/or poor self-ratings of health have poor compliance, more hospitalized days and shorter life-expectancy than other patients (DeOrea, 1997; Peterson et al., 1991; Everett et al., 1995). On the other hand, patients who feel they are more in control of their treatment tend to cope beUer, be better ad-

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justed and have better quality of life (Mapes, 1991; Bremer, 1995). Social support has been found to be related to continuing treatment, improved compliance, lower levels of depression and, along with activity levels, improved psychological well-being among ESRD patients (Bajwa et al., 1996; Essink et al., 1996; Boyer et al., 1990; Kutner, 1990). Based on the above, it would seem that an intervention aimed to improve patients' well-being through a combination of activity and social support could have positive effects on adherence as well as physical and emotional well-being. This paper describes a practice based research project which attempted to evaluate such an intervention carried out with a group of hemodialysis patients in the Shaarei Zedek Medical Centre in Jerusalem, Israel.

DETAILS OF THE INTERVENTION While the intervention was not derived from a particular theory or an attempt to replicate an intervention tried elsewhere, it is consistent with both the prevailing theories and empirical studies noted above dealing with the psychosocial implications of hemodialysis with ESRD patients. It came about through an almost chance sequence of events and was adopted because (1) of the social worker's (A.B.) belief, based on her knowledge and experience, that it could prove beneficial for the patients, and (2) the interest of the providers of the service in adapting it to the dialysis setting. This in spite of the fact that no reference could be found in the published literature describing a similar intervention. We did, however, leam later of a program with similar foundations in Australia in which college-level courses were offered to patients during their dialysis sessions (Heintz, Simmonds & Agar, 1991; Agar, Simmonds & Ayrton, 1991). The impetus for the intervention came from an organization, Matav, whose primary function is the provision of horne health services for functionally limited elderly people in Israel. In addition, it provides homebound older persons with piece work of varying kinds for which they are paid a small remittance. In a meeting in wh ich the Matav organization aimed to familiarize hospital social workers with the latter program, the social worker in the dialysis unit suggested that this type of activity might also be appropriate for some of the hemodialysis patients, particularly those who are otherwise unoccupied. After some discussion and negotiation, it was decided to try out the activity with inter-

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ested dialysis patients. A "guide" from the organization would come to the dialysis unit one day a week for each shift and provide interested patients with piece work suitable to their physicallimitations and instruct and accompany them in carrying out the work. The work consisted of either sewing, pasting or assembling components from pre-prepared kits to create a variety of useful and attractive items. Some of the patients decided to do the work during the time of dialysis. We later discovered that several others decided to take the work horne, while others did both. Following a brief trial period, the social worker queried the participants as to their assessment of the project. Nine patients reported being satisfied because it helped them pass the time; seven were happy with the finished product; some said it provided a diversion from their problems; two who took the work horne had family members participating. Others reported a feeling of control, making progress and enjoying the interaction with the guide. Likewise, the nursing staff in the dialysis unit reported an impression of improvement in the condition of the patients who were participating in the program. As a result of the apparent initial success of the program, hospital staff approached a colleague at the School of Social Work (G.A.) to evaluate more systematically the outcomes of the intervention. Unfortunately, by this time the program had already been going on for some time, so that there was no possibility of obtaining a baseline measure on any of the relevant areas. Attempts to reconstruct the pre-intervention state of the patients, using existing hospital records, were not successful-only summary data were kept on file, with none of the detail required for a rigorous evaluation. These limitations led us to shelve the evaluation. However, the possibility of evaluating the pro gram was revived when the guide became pregnant. As Israeli law requires that mothers take a three-month maternity leave, we decided take advantage of the guide's planned absence to initiate a modified withdrawal/reversal design (Tripodi, 1983). This requires the taking of aseries of measures during the time the intervention was taking place. Then, when the worker was off on maternity leave, we would take another set of measurements. Upon her return to work, we would resurne the activity, take another set of measurements and assess the changes between the three periods. We expected that the condition of patients in the treatment group would be better than that of patients not participating in the activity; that when the activity stopped, the groups would appear similar; and that when the activity was reinstated those patients in the treatment

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group would again improve. While it was c1ear this was not the ideal design, mainly due to the absence of baseline data, an of the parties involved agreed it would enable them to assess the program more systematically, and if it proved successful, to replicate the intervention in other hospitals, accompanied by a larger, randomized, c1inical trial.

METHODOLOGY Study Population. The study population was an the adult hemodialysis out-patients at the Shaarei Zedek Medical Center in Jerusalem. This is a 15-bed unit, in which patients are seen in one of three shifts. Thus there are a maximum of 45 patients at any given time. üf these we excluded patients over age 75 and those who were senile, demented or unable to communicate with us in Hebrew or English. The remaining patients were presented with a description of the study and asked by the social worker to sign a consent form. A total of 21 patients met an the criteria for inclusion and consented to participate in the study. Data were collected by interviews carried out by the social worker and by reporting of information by the duty nurses. The first round of data collection took place when the patients were participating in the intervention (September 1996), the second during the guide's maternity leave (November 1996). Unfortunately, the guide decided not to return to work following the end of her leave. Therefore the program was not resumed on schedule and no additional measurements could be taken. The intervention had been offered to all of the dialysis patients in the unit. The study population divided itself into three groups (with no random assignment)-those that participated in the group activity, those that were occupied in their own-initiated activity (e.g., reading, working), and those that did nothing. Those people who took work horne with them were classified by what they did du ring the dialysis session. Additional analyses of the data were done, reclassifying the "horne workers" as part of the treatment group, with no significant change in the results. Study Variables related to three possible types of outcomes-psychosocial, medical, and compliance (Auslander, 1995). In assessing medical and enabling outcomes, we relied mainly on available information (Epstein, Zilberfein & Snyder, 1997). Psychosocial outcomes were based mainly on what has been termed "rapid assess-

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ment instruments," i.e., standardized measures that reliably and validly assess various aspects of clients problems (Corcaran, 1997), as folIows: SeiFrated health status-This is a five-item sc ale first developed as part of the V.S. National Survey of Personal Health Practices and Consequences (Wilson & Elinson, 1981). Respondents were asked to rate their overall health status, the degree to which they were satisfied with their physical state, how they compare their health today to that of two years aga and to that of their age peers and the degree to which their health worries them. Scores range from 5 (poorest health) to 20 (excellent health). It has been used in several studies in Israel and had good internal consistency reliability (Chronbach's a = 0.84) in this study. Psychological distress was assessed by the Brief Symptom Inventory (Derogatis & Melisaratos, 1983) a 53-item scale describing a range of feelings and emotions to which the respondent is asked to indicate to what degree s/he suffered from them, ranging from 0 (not at all) to 4 (very much). It has been used extensively in Israel, including studies of dialysis patients (Soskoine & Kaplan-DeNour, t 989). The BSI contains nine sub-scales (somatization, obsessive-compulsive, interpersonal sensitivity, depression, anxiety, hostility, phobic anxiety, paranoid ideation and psychoticism). Reliability coefficients ranged from a low of a = .57 far the hostility sub-scale to a = .81 for psychoticism. Other than hostility, scores on all the other sub-scales were over a = .60. Overall reliability was a = .95. Compliance was assessed by the measurement of interdialytic weight gain (difference between "dry weight" and weight at the start of dialysis), three times in one week, as recorded by the nursing staff. Nursing reports also provided physiological indicatars of the smooth running of the dialysis session. For each of three consecutive dialysis sessions, the unit nurses recorded the incidence of hypotension (blood pressure drops), cramps, headache, nausea, signs of tiredness and the number of times intravenous fluids were given for each patient. Data Analysis. Initial univariate descriptions of the sampie characteristics as a whole and the bivariate relationships among them were based on means and carrelations. However, in making comparisons between the treatment and other groups, we had to contend with very small sampie sizes. This precluded the use of ordinary parameters to estimate the effects of the intervention. Rather we used non-parametric statistics, chiefly a comparison of the medians in each group, and significance-testing based on the Kruskal-Wallis one-way ANOVA. In addition, we computed the median change in the key variables among

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individual patients in each group between the two points in time. Again, because ofthe very small sampie, this part ofthe analysis was limited to those variables where the scores were relatively consistent, at least within the treatment group. This required a case by case examination to exclude variables where scores were widely dispersed among a very small number of cases.

RESULTS The study population was comprised of 21 patients in the hemodialysis unit of Shaare Zedek hospital, who consented to participate in the study.1t included 16 men and 5 women. Average age was 54 years (sd = 16.7). Men were somewhat younger than the women (8 years) but the difference was not significant. There was no difference by age among the three groups-those participating in the activity, those occupied with their own activities and those who did nothing. However, women were more likely to participate in the activity intervention than men. Looking at the population as a whole, self-rated health status, on a scale of 5 to 20 had a mean of 11.1 (sd = 4.8), somewhat higher than a community sampie of older people in Jerusalem (9.56, sd = 3.28) while it was considerably lower than that of a group of 200 Israeli University students (14.4, sd = 2.6) and a random sampie of 3500 US adults (14.6, sd = 2.6). Levels of psychological distress were considerably higher than in other healthy populations (Derogatis & Melisaratos, 1983) on all of the nine sub-scales. Scores on the BSI overall scale ranged from 2 to 133 with a mean of 65.14 (sd = 42.8). Measures at Time I (when patients were partieipating in the intervention), showed patients to have scores above the norm for psychiatrie patients established by Derogatis et al. in somaticization, paranoia, phobie anxiety and psychotic. Scores for depression, anxiety and hostility, obsessive compulsive behavior were below the norm for psychiatric outpatients yet above that for non-patients. Previous studies of dialysis patients in Israel have shown that women report higher levels of distress than men (Kaplan-DeNour, 1982; Soskoine & Kaplan-DeNour, 1989) and have recommended that men and women be studied separately or that gender be controlIed for in multi-variate analyses. In this sampie women were in fact signifieantly more anxious (t = 3.49, p < .005), more depressed (t = 2.5, P < .05), had higher levels of somaticization (t = 2.80, p < .05) and overall dis-

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tress (t = 3.49, p < .005). Unfortunately, the small sampIe size precludes the use of multivariate analyses controlling for gender (see Discussion, below). As expected, nurses ' reports showed the patients to be in fairly poor physical condition. Half of the patients had at least one significant hypotensive event and/or required intravenous infusion of fluids during dialysis. One-third suffered from cramps, tiredness and/or headaches during dialysis sessions. Excess weight gain over the course of three dialysis sessions ranged from 3.6 to 17.0 kg, with an average of 8.9 kg (sd = 3.6). There was no difference in excess weight gain by gender. To some degree, the patients' mental distress correlated negatively with their physical health status, with lower self-rated health among patients who reported symptoms of anxiety (R = - .42), depression (R = - .40), somatization (R = - .51). Patients who required a larger number of infusions during dialysis also rated their health as poor (R = - .45), reported more somatic symptoms and had more drops in blood press ure during dialysis (R = .67). Incidence of headaches during dialysis was positively related to depression (R = .44). All of these relationships were significant at the p < .05 level. Taken all together, these findings indicate that in addition to their poor health, the patient population is at high risk for emotional distress, and that there exists a strong connection between their emotional and physical states. In comparing the three grouPs of patients at the time the intervention was provided, we found only minor differences on any of the outcome variables. The only significant difference was on the anxiety subscale of the BSI. Patients participating in the treatment group were more anxious than those in the group who carried out their own activity or did nothing while on dialysis (medians 12,4, and 7, respectively, p < .05). We then compared the change in the key variables among the members of each group between the time the intervention was provided and the time when it was no longer in place. No significant differences were found on any of the physiological measures. However, the findings with regard to several of the psychosocial and adherence measures are of particular interest and statistically significant. Figure 1 shows the median levels of overall psychological distress for patients in each group at both points in time. While psychological distress was higher for the treatment group, at time 1 (while the activity group was functioning), the difference was not significant. While it remained higher at time 2, the differences were likewise not significant. However, the change between times land 2 in the treatment grouP was significantly larger in the treatment group than in either of the other

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SOC1AL WORK HEALTH AND MENTAL HEALTH FIGURE 1. Median Levels of Psychological Distress (881), by Group

100 80

60

40 During tx After tx

20 O

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Other activity

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groups (median changes = -21,0, -10, respectively (p < .01). A similar pattern was found in one of the subscales, hostility, where median levels for the treatment, activity and no activity groups were 9, 4 and 7 respectively, during the intervention and 4,3, and 3 when the intervention was no longer being offered. However, the change in the levels of hostility in the treatment group was significant, as measured by the Kruskal-Wallis test (p < .05). A somewhat different pattern was observed for the anxiety subscale of the BSl. Figure 2 shows patients' median levels of anxiety in the three groups, at both points in time. As we noted before, the treatment group had higher levels of anxiety during the intervention (p < .05). After the intervention was stopped, however, the anxiety level for all patients in that group dropped to a level not significantly different than that of patients in the other two groups. Finally, with regard to phobic anxiety, as Figure 3 shows, this was considerably higher at time 1 in the treatment group, although the difference was not significant. And while levels of phobic anxiety went down in all three groups at time 2, the change was largest in the treatment group (median = 2) as compared to the other activity group (median = I) and the no activity group (median = 0, p < .0 I). In addition to differences in emotional well-being, the findings evidenced a difference in levels of adherence, as indicated by interdialytic

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Gail K. Auslander and Adina Buchs FIGURE 2. Median Levels of Anxiety, by Group

15 10

5

During tx After tx

O

Tx group

Other activ ity

No activ ity

FIGURE 3. Median Levels of Phobie Anxiety

6 4 2

During tx After tx

O

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No activity

weight gain. Figure 4 illustrates the median levels of weight gain over one week in each group at both points in time. At both times, the treatment group had the smallest weight gain (7 kg, as opposed to 9 kg in the "own activity" and 9.3 kg in the "no activity" groups at time 1 and 4 kg, 4 kg and 10 kg respectively at time 2 (p < .05). Of particular interest is the finding that between times 1 and 2, patients who were in the group that did nothing during dialysis sessions actually increased their excess weight, while the treatment group remained stable.

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SOClAL WORK HEALTH AND MENTAL HEALTH FIGURE 4. Median Weight Gain, by Group

15 10

5 O

During tx After tx Tx group

Other activ ity

No activ ity

DISCUSSION This study aimed to provide a multi-dimensional evaluation of the outeomes of an innovative intervention among hemodialysis patients. As sueh it involved assessing not only the psyehosoeial outeomes, but also outeomes related to the patients' medieal and their adherenee to the treatment plan. The findings of this study eonfmn first, that in this sampie, as in the literature, patients undergoing hemodialysis have relatively high levels ofpsyehologieal distress (Vourlekis & Rivera-Mizoni, 1997; Soskoine & DeNour, 1989). They also seem to have diffieulty adhering to the treatment regimen and their physieal state is rather poor. Further, their distress is to some degree related to their physieal state. In looking at the three groups of patients studied here, it was c1ear that they were fairly similar in terms of physiologieal and emotional state during the period that the intervention was being provided, with two exeeptions: Patients in the treatment group, Le., those participating in the group aetivity, were more anxious and had lower levels of interdialytie weight gain than the other two groups. There were no differenees between the groups on any of the medieal outeomes. After the intervention was terminated, levels of psyehological distress, hostility and phobie anxiety among patients in the treatment group dropped, while their weight gain eontinued to be less than that of patients in the other two groups. Furthermore, the gap in anxiety levels between the treatment group and the other groups lessened over time.

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These findings are open to various interpretations: 1. If we look at them pessimistically, they could indicate that some interventions may actually harm patients; 2. If we look at them optimistically, they may indicate long-range improvement as a result of the intervention; and 3. In any case, they point up the price, in terms of our ability to draw conc\usions, to be paid for methodological compromises and f1aws. Taking first the pessimistic point of view, we recall that our expectation was that during the intervention, the condition of the patients in the treatment group would be better, than those not in the treatment group, and when the intervention was withdrawn, the patients' condition would deteriorate, as per the c\assic withdrawallextinction design (Tripodi, 1983). According to that design, were the intervention reinstated, participating patients would return to their "improved" state; however, as noted, that plan could not be implemented. In retrospect, this was probably unrealistic at best; and had the withdrawal of the treatment been under our control, it could even be considered unethical. While this was not the case, in retrospect even our expectation or hope that patients' conditions would worsen and thereby prove our point is disturbing. Fortunately, the opposite occurred. On the key variables studied here, the situation of the patients in the treatment group actually improved, absolutely and/or relative to the other two groups, after the treatment had been withdrawn. Does this me an that patients are actually better off without the activity intervention? While this is, of course, possible, an alternative explanation should also be considered, as folIows. Looking at the findings optimistically, we could revise our original expectations and re-interpret the findings, placing them in a broader time perspective. We would then propose that the improvement in the condition of the patients in the treatment group after the intervention was stopped was actually the outcome of that treatment. By this vi_ew, patients who were in the activity group could be seen as having learned or adapted a new problem-focused strategy for coping with the stresses of ESRD and hemodialysis, which had long-range effects (Lazarus & Folkman, 1984). This interpretation derives so me support from further examination of the data which showed that patients in the treatment group continued with some form of activity on their own after the intervention was withdrawn. This kind of active coping by patients has been found to be re-

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lated to taking control over their treatment, which has, in turn, been found to be related to improved compliance and well-being (Mapes, 1991; Bremmer, 1995). Further support for this interpretation can be derived from the finding that patients in the treatment group had significantly lower interdialytic weight gain. As a measure of compliance, this would indicate that patients in the treatment group were more careful in wh at they ate and drank, again perhaps indicative of a higher level of control (Leventhal, Zimmerman & Gutmann, 1984). Unfortunately, our ability to determine which, if either, of these explanations is correct is seriously hampered by methodological problems with the study, some ofwhich were anticipated, while others were not. 1. The most serious flaw is the lack of a baseline measurement, which severely impeded our ability to confirm the long-term trend postulated here. It is possible that the patients who chose to participate in the activity were more distressed than other patients prior to the start of the intervention. This could, in fact, have motivated them to participate. Thus while they were distressed and more anxious at Time 1 than the other patients, the levels observed could actually have been an improvement over their pre-intervention levels. We were aware of this limitation at the outset and tried unsuccessfully to compensate for it by estimating patients' pre-intervention state using available data from hospital records. We also had planned a third round of data coHection after the intervention had been reinstated. Unfortunately that did not come to pass. 2. The ambiguity stemming from the lack of baseline data is compounded by our inability to randomly assign patients to the treatment or non-treatment groups. This could very weH have led to a selection bias, as described above (Cook & Campbell, 1979). On the other hand, the design had the ethical and practical advantages of allowing us to offer the intervention to the entire population. Patients did not refuse to participate for fear of being given a placebo in place of the "quality" intervention (Epstein, Zilberfein & Snyder, 1997). 3. Similarly, data were not collected blindly-both the nurses and the social worker knew which patients were in which group. This, however, is less problematic given the use of both self-reports from the patients and data routinely collected from the nurses. 4. Finally, as expected, women were somewhat more emotionally distressed than men in the sampie, as evidenced by their scores on at least two key variables-anxiety and overall distress. Women were also more likely to participate in the treatment intervention. The small sampIe size made it impossible to separate out these effects. The fact that

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gender was not related to the other significant outcomes variables reduces the threat somewhat. On the other hand, the failure to find significant outcomes on other variables, may in fact be due to confounding. A larger sampie would enable examination of this issue. In short, our efforts to evaluate an intervention through an approximation of a rigorous, clinical trial proved to be unfeasible. We should note that several authors having observed similar efforts, have voiced the opinion that perhaps the "gold standard" of randomized clinical trials is not necessarily the most appropriate for social work. Among other things, they question the generalizability offindings obtained in laboratory conditions to the real world of clients with severe and complex psychosocial problems (Epstein, Zilberfien & Snyder, 1997). For instance, during the course of this study, clients continued their contact with the social worker, regardless of which group they were in. lt is neither realistic nor ethical to expect social workers to ignore the needs of patients who are not part of the treatment group. As such, the findings ofthis study do confirm the psychosocial repercussions of hemodialysis, as weH as the relationship between those problems and the physical state of patients.1t further shows that the status of patients is variable and dynamic. While it is possible to make a case for the positive role of the activity intervention offered here in explaining those changes, in the absence of baseline data (at the minimum) we cannot conclusively determine the direction of that change. REFERENCES Agar, J. W. MacD., R.E. Simmonds, & T. AYlton (1991). Studying while dialysing-A noveI approach. Paper presented at the Australasian A Society of Nephrology, 1991 (abstract). ANZDATA (1998). Annual Report-Summary 1996. Australia and New Zealand Dialysis and Transplant Registry. Retrieved from the World Wide Web, March 24, 1998, . Bajwa, K., Szabo, E. & Kjellstrand, C.M. (1997). A prospective study of risk factors and decision making in discontinuation of dialysis. Archives oflnternal Medicine, 156(22), 2571-2577. Bremer, B.A. (1995). Absence of control over heaIth and the psychological adjustment to end-stage renal disease. Amlals ofBehavioral Medicine, 17(3), 227-233. Boyer, c., Friend, R., Chlouverakis, G. & Kaloyanides, G. (1990). Social support and demographic factors influencing compliance of hemodialysis patients. Journal of Applied Social Psychology, 20(22),1902-1918.

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Cook, T.D. & Campbell, D.T. (1979). Quasi-experimentation: Design and analysis issllesforfleld settings. Boston: Houghton-Mifflin. Corcoran, Kevin (1997). Use of rapid assessment instruments as outcomes. In EJ. Mullen and J. L. Magnabosco (Eds.) Olltcome measurement in the human services (pp. 137-143). Washington, DC: NASW press. DeOreo, P.ß. (1997). Hemodialysis patient-assessed functional heaIth status predicts continued survival, hospitalization and dialysis-aUendance compliance. American Journal ofKidney Diseases, 30(2),204-212. Derogatis, L.D. and Melistaratos, N. (1983). The Brief Symptom Inventory: An introductory report. Psychological Medicine, 13, 595-605. Epstein, I., Zilberfein, F. & Snyder, S. (1997). Using available information in practice-based outcomes research: A case study of psychosocial risk factors and liver transplant (lutcomes. In E.J. MuBen and J.L. Magnabosco (Eds.) Outcome measurement in the human services (pp. 224-233). Washington, DC: NASW press. Essink-Bot, M.L., Krabbe, P.F., van-Agt, H.M. & Bonsei, GJ. (1996). NHP or SIP-A comparative study in renal insufficiency associated anemia. Quality of Life Research, 5(1), 91-100. Everett, K.D., Brantley, P.J., Sletten, c., Jones, G.N. et al. (1995). The relation of stress and depression to interdialytie weight gain in hemodialysis patients. Behavioral Medicine, 21(1),25-30. Gudes, C. M. (1995). Health-related quality of life in endstage renal failure. Quality of Life Research, 4(4),359-366. Heintz, R.A., Simmonds, R.E. & J.W. MacD. Agar (1991). Dispel the dialysis doldrums: The Geelong Hospital Rotary Dialysis Unit. Paper presented at meeting of Renal Society of Australia, June, 1991 (abstract). Kimmei, P.L., Peterson, R.A., Weihs, K.L. et al. (1996). Psychologic functioning, quality of life and behavioral compliance in patients beginning hemodialysis. Journal ofthe American Society ofNephrology, 7(10), 2152-2159. Klang, ß., Bjorvell, H. & Cronqvist, A. (1996). Patients with chronie renal failure and their ability to cope. Scandinavian Journal of Caring Sciences, 10(2), 89-95. Kutner, N .G. & Brogan, D. (1990). Expectations and psychologieal needs of elderly dialysis patients. International Journal of Aging and Human Development, 31(4), 239-249. Lazarus, R. & Folkman, S. (1984). Coping and adaptation. In W. Doyle Gentry (Ed.) Handbook of behavioral medicine (pp. 282-325). New York: Guilford Press. Lee, G. (1998). About kidney diseases and dialysis. Kidney Disease Foundation, Singapore. Retrieved March 15, 1998 from the World Wide Web: . Levenson, J.L. & G1ocheski, S. (1991). Psychological factors affecting end-stage renal disease: A review. Psychosomatics, 32(4), 382-389. Leventhal, H., Zimmerman, R. & Gutmann, M. (1984). Compliance: A self-regulation perspective. In W. Doyle Gentry (Ed.) Handbook of behavioral medicine (pp. 282-325). New York: Guilford Press. compliance and quality of life in chronic Mapes, D.L. (1991). Self~management, hemodialysis patients. Doctoral dissertation, University of Califomia, San Francisco, School of Nursing (abstract).

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Ministry of Health (1996). Ho~pitals and Day Care Units in Israel: 1996. Jerusalem: Ministry of Health, Infommtion and Computation Services. National Kidney and Urologie Diseases Information Clearinghouse (lune 1994). End Stage Renal Disease: Choosing a Treatment That' s Right For You, NIH Publication No. 94-2412. Retrieved March 24, 1998 from the World Wide Web: . National Kidney and Urologie Diseases Information Clearinghouse (October, 1996). Kidney and Urologie Diseases Statisties for the United States, N1H Publieatiol1 No. 96-3895. Retrieved March 24, 1998 from the World Wide Web: . National Kidney and Urologie Diseases Information Clearinghouse (March, 1998). Your Kidneys and How They Work. NIH Publieation No. 96-3895. Retrieved March 24, 1998 from the World Wide Web: . Peterson, R.A., Kimmei, P.L. & Sacks, c.R. (1991). Depression, perception of illness and mortality in patients with end-stage renal disease.1nternational Journal ofPsyehiatry in Medicine, 21(4),343-354. Sno, H.N., Schoevers, R.A., Wiltink, E.H & Molenaar, D. (1992). On perfusion andconfusion: Psychiatrie complications in dialysis-patients. Tijdsehriji-voor Psychiatrie, 34(9),637-650 (English abstract). Soskoine, V. & Kaplan DeNour, A. (1989). The psychosocial adjustment of patients and spouses to dialysis treatment. Social Science and Medicine, 29(4), 497-502. Tripodi, T. (1983). Evaluative research for social workers. Englewood Cliffs, NJ: Prentice-Hall. Vourlekis, B.S. & Rivera-Mizzoni, R.A. (1997). Psyehosocial problem assessment and end-stage renal disease patient outcomes. Advances in Renal Replacement Therapy, 4(2), 136-144. Wilson, R.W. & Elinson, 1. (1981). National Survey of Personal Health Praetices and Consequences: Background, coneeptual issues and selected findings. Publie Health Reports, 96, 218-255.

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Social Support, Medication Compliance and HIV/AIDS Lisa E. Cox, PhD, LCSW, MSW

SUMMARY. Social work practitioners and researchers have greatly understudied the idea 01' how social support correlates with combination therapy medication compliance, in people living with HIV disease. Meanwhile, such data could help health social workers better assist HIV -in1'ected people who want to cope weil, live long, and avoid drug resistance. There1'ore, this article presents findings 1'rom a three-stage empirical secondary data analysis that examined seven specific types of social support, psychological history and stage of illness variables, and sociodemographics and their connection to medication compliance ratings. A sub-sample of 179 HIV -infected clinical trial study participants enrolled in a federally funded combination therapy treatment study and a nested compliance study were analyzed. Analysis of 14 bivariate hypotheses and 20 predictor variables at the multivariate level revealed that having emotional support and being employed seemed to be predictive 01' being a "Good Complier." Also, having higher levels o1'HIV symptoms appeared to be associated with being a "Poor Complier." [Article copies availablejär afee from The Haworth Document Delivery Service: 1-800-HAWORTH. E-mail address: Website: © 2002 by The Haworth Press, [nc. All rights reserved.}

Lisa E. Cox is Assistant Professor of Soeial Work & Gerontology, The Riehard Stoekton College of New Jersey, Division of Soeial and Behavioral Seienees, P.O. Box 195, Pomona, NJ 08240-0195 (E-mail: Lisa.Cox@ Stoekton.edu). IHaworth co-indexing entry note): "Soeial Support, Medication Compliance and mV/AIDS." Cox, Lisa E. Co-published simultaneously in Social Work in Heallh Care (The Haworth Social Work Praetice Press, an imprint ofThe Ilaworth Press, Ine.) Vol. 35, No. 1/2,2002, pp. 425-460; and: Social Work f1ealth and Mental Health-Practice, Research and Programs (ed: Alun C. Jaekson, and Steven P. Segal) The Haworth Social Work Practice Press, an imprint ofThe Haworth Press, lne., 2002, pp. 425-460. Single or multiple eopies of this article are available for a fee from The lIaworth Doeument Dclivery Service [1-8()O-IIA WORTH, 'l:OO a.m. - 5:00 p.m. (EST). E-mail address:[email protected]).

© 2002 by The Haworth Press, Ine. All rights reserved.

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KEYWORDS. Adherence, clinical trials, discriminant function analysis, HIV /AIDS, medication compliance, research, social support, study participants As complex regimens of highly active antiretroviral therapy (HAART) are prescribed to HIV infected people fortunate enough to access such treatments, poor compliance behaviors, as measured by adherence rates, vacillate and wreak havoc with people's immune systems and relationships. Consequently, there has been a resurgence and exponential growth, in the medical adherence literature related to HIV/AIDS (Besch, 1995; Carpenter, Cooper, Fischi, Gatell, Gazzard, Hammer, S.M., et al. , 2000; Gerbert, Brown, Volberding, Cooke, Caspers, Love, & Bronstone, 1999; Kimberly, & Serovich, 1999; Williams, Bowen, Ross, Freeman, & Elwood, 2000). This articIe continues this trend and cIosely examines the role of living situation, doctor, nurse, emotional, economic, day-to-day problem, and general support in the lives and medication compliance behaviors of people with HIV disease. By studying the relationship of social support and medication compliance, in the context of AIDS research (i.e., cIinical drug trials) social workers may better understand cIients, cIient needs, and the intricacies of HIV research. Such understanding may help HIV -infected cIients be good compliers. Corroborating this belief, Freeman, Rodriguez, and French (1996) have stated that, "Whether a patient receives social support may alter his or her ability to participate in treatment and/or cIinical trials." Social support and medication compliance (the term mainly used in this articIe, rather than the in-vogue, consumer preferred, interchangeable, and politically correct term "adherence") are important issues to social workers and cIients alike. However, while the need for and importance of social support has been weil documented in the general population (Gottlieb, 1995; Melander, 1992), few studies have addressed how social support specifically affects medication compliance behaviors in HIV infected populations. In the wide and ever growing HIV / AIDS literature, social workers have published very little on the relationship of social support and medication compliance that specifically relates to combination therapy (Lloyd, 1996). However, one identified dissertation has systematically studied specific types of social support among HIV -infected cIinical trial participants in relationship to medication compliance (Cox, 1997), and some of its theoretical and empirical findings are presented herein.

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Also presented is a discussion that calls for more intervention and health outcomes research on HIV medication compliance, and the continued involvement of social workers in HIV-related practice, policy, and research issues. BACKGROUND AND CONTEXT

HIV Research and Medication Compliance Since the inception of HIV in 1981, the picture of HIV and HIV therapy has dramatically changed. In the United States of America (U.S.), with the advancement of protease inhibitors and other classifications of powerful drugs, society now considers HIV to be a chronic disease. This means that HIV infected people have Ion ger to obsess about their viral loads, CD4 cell counts, and complex medication regimens, while the general public appears to be assuming a rather apathetic response toward the ever increasing global HIV epidemic. Statistics unveiled by the World Health organization at the year 2000 International AIDS conference in South Africa, (http://www.who. int/asd/overheads/wadOOstats.E-13/sldO 12.htm) revealed that throughout 1999 there were 15,000 reports of new HIV infection a day. These staggering statistics further revealed that more than 95% of these new infections were in developing countries, where 1,700 infections were in children under the age of 15. In the United States, AIDS had been designated as the number two cause of death for people ages 25-44; however, with the advancement in drug therapies some leveling offhas occurred. Such continually alarming global statistics, however, appear to justify the need for continued research on HIV treatments and adherence. Research in the form of federally funded clinical drug trials has proliferated since the early 1990s. In 1987, the first anti-HIV agent (AZT) was marketed in the U .S., and 10 years later in 1997 there were 1l more approved drugs ready to fight HIV. Now there are many more in the pipeline (Lynch, 2000), and the research networks that were established to develop and test these drugs are still mainly funded by the U .S. federal government, through the National Institutes of Health (NIH) in the National Institute of Allergy and Infectious Diseases (NIAID) Division of AIDS (DAIDS). Examples of innovative research programs that have been established include the AIDS Clinical Trial Groups (ACTGs) and the Terry Beim Community Programs for Clinical Research on AIDS (CPCRA,

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1996). Both of these entities develop and conduct numerous "gold standard" (i.e., prospective, longitudinal, multicenter, placebo controlled experimental design) studies that absolutely depend on good compliance behaviors from their enrolled study participants. To enhance recruitment, retention, and compliance, many of these research programs hired research nurses and social workers to help enroll, counsel, and follow HIV-infected study participants. Subsequently, HIV research nurses and social workers have frequently encountered people with HIV who have forgotten to take their medicines, and have slept through their doses. Perhaps even more frequently, nurses and social workers have met c1ients who have bluntly stated that they took a "drug holiday" because they were tired ofbeing really sick from the side effects and feeling depressed. Hence, while combination therapy has extended life, the quality of life may be questionable for many. Social workers and health care providers must understand that when people living with AIDS feel pain, nausea, cramps, peripheral neuropathy, and experience lipodystrophy, depression and consequent noncompliance may result. Feelings of depression and pain may become exacerbated when peopie living with HIV encounter stigma. When, by chance, their depression, pain, and emotional battles related to feeling stigmatized subside, financial struggles may still exist. "Combination therapy is expensive, ranging from $15,000 to $20,000 a year. The costs of combination therapy that inc1ude Combivir, for example, far exceed those of Saquinavir, Invirase, Indinavir and others" (Gant, 2000, p. 203). Therefore, it is not surprising that many people who require combination therapy treatment find that participating in an AIDS research study (c1inical trial) is the best way to access medications. Indeed, drug regimens can be quite costly and difficult to access, when HIV -infected people are not enrolled in a c1inical trial. Now that many people are remaining asymptomatic for long periods of time, and discussion of viatical settlements has quieted, both c1ients and their social workers must work hard to locate financial resources and qualify for drug assistance programs (i.e., ADAP, Pharmaceutical Company Patient Assistance). When money, income, and resources are limited, personal finance dilemmas may affect a person's ability to access medications and to continually be compliant. Albeit in the general treatment or AIDS research realm, a consistent HIV story is that even when people do have access to HIV medications, problems with compliance seem to still exist. Consequently, understanding the multiple baITiers to good compliance for people with HIV

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infection is paramount and requires further study. Health care providers and social workers need to know why noncompliance occurs. Reasons for non-adherence vary and some of these reasons are addressed in the subsequent literature review.

Social Work Role in HIV Work and Medication Compliance AIthough social workers have been actively involved in HIV work since the epidemic began, only recently have they become so intensely involved in teaching about, studying, and fostering compliance. Social workers are gene rally trained to assess cIient needs, recommend appropriate cIinical and community resources, conduct applied research, advocate for policies, and challenge cIients to change, yet they also have a role to play in understanding what to do about compliance behaviors in people with HIV -infection. Social workers connected to community-based AIDS cIinical trial research programs have highly specific roles. They are especially responsible for recruiting and retaining HIV infected study participants in longitudinal experimental research studies, and assessing barriers to good compliance. Therefore, it behooves both generalist and specialist social workers to be familiar with viable interventions that may counteract non-adherence, that are rooted in the social support and medication compliance literatures.

The Relevance 0/ Medication Compliance and Social Support to HIV Populations Medication compliance or adherence is a cIinical, financial, and psychosocial issue for people living with HIV infection, health care providers, and the general public. People living with HIV disease are often prescribed complex "tripie cocktail," or multiple therapy regimens (Chang, Ernst, Leonidoyee, Witt, Speck, Walot, & Miler, 1999; Davies, Carne, & Camilleriferrante, 1999; Katz, Cunningham, Mor, Andersen, Kellogg, Zierler, Crystal, Stein, Cylar, Bozzette, & Shapiro, 2000; Mezzaroma, Carlesimo, Pinter, Muratori, Disora, Chiarotti, Cunsolo, Sacco, & Aiuti, 1999; Rabkin & Ferrando, 1997) which are costly to buy and cumbersome to one's lifestyle. Physicians are often confused as to which HIV medications should be prescribed first, because they are cognizant of potential side effects, cost, and compliance factors. Health care providers are often frustrated

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because they frequently meet HIV -infected patients who decide to refuse all treatment and not adhere to any drug protocols. For patients who do des ire to start HIV treatment, they must discern how to obtain and remember to take the drugs they have been prescribed. Do they pay out-of-pocket? Do they ask their friends or relatives to pay for their drugs or remind them to take them? Do they use their workplace benefits? Or can they qualify for the AIDS Drug Assistance Program (ADAP) or any Patient Assistance fund through pharmaceutical companies? Often, clients query social workers about financial issues. In response, social workers struggle to help clients qualify for AIDS Drug Assistance Programs (ADAP), remain employed, be compliant, and recognize and use their social support resources. Most social workers are aware that there are a myriad of dimensions to consider, when assessing social support.

LITERA TURE REVIEW Separately, the social support and medication compliance literatures encompass concepts, assumptions, theories, and empirical investigations in writing across the medical, behavioral, social work, and social science disciplines. Yet, social support and medication compliance literature specific to HIV is less exhaustive, as this section reveals.

Social Support The literature on social support began in the 1970s and 1980s, and mainly focused upon: (a) social embeddedness (networks/social relationships), (b) perceived social support (cognitive appraisal about the quality of the environment), and (c) enacted support (actions done by others to show supportive functions, e.g., emotional, tangible, etc.) (Barrera, 1986; Gottlieb, 1978, 1983, 1985, 1995; Veiel, 1990). Typically, social support was defined as an interpersonal transaction involving concern, aid, and information about oneself and the environment. The two social support aspects of instrumental and emotional support have dominated much medically oriented writing. Before the publicati on of empiricalliterature concerning social support and HIV, a classic theoretical exposition on social support and medical care by a physician named Cobb (1976) Iinked the concepts of social support and health to medication compliance. Cobb (1976) emphasized that supportive interactions among important people were not new, but "assembling hard

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evidence that adequate social support can protect people in crisis from a wide variety of pathological states was new" (p. 310). In a 1976 public address, and with no intent to minimize the role of family and friend support, Cobb emphasized that it "should be the profession of medical social work that should teach both sick and weH patients how to give and receive social support" (p. 312).

Dimensions 01 Social Support and HIV Social support has been interpreted in several ways and included a range of phenomena, and the three concepts of emotional, economic, and day-to-day problem support have gene rally been studied. Additionally, social support has been conceptualized and classified by types, structures (sources) and functions, yet the concept has been limitedly linked to the expcrience of people who have HIV-despite the fact that emotional, economic, and tangible day-to-day supports greatly affect their well-being. Social workers who work with HIV -infected people realize that such clients need emotional support, in the form of affection, acceptance, and appraisal. Sometimes family members willingly provide emotional support. Friends, neighbors, and professionals also provide support (Berger, 1992; Kadushin, 1999; Leukefeld, 1988; Rodgers, 1995; Shernoff, 1990). People living with HIV/AIDS often need to ventilate feelings, need a shoulder to cry on, need to be reminded to take their pills, need to express anger and frustration without the fear of condemnation or negative judgments (e.g., "Oh, you mustn't feel that way!"), and need to release emotions (Macks, 1988; Shernoff, 1990). Clients on combination therapy also require economic support, which means material support, financial resources (including a salary and employment benefits), means tested entitlements, social security disability insurance, or savings of some sort (Brugha, 1995). HIV infected clients require money to obtain medications, to pay for doctor appointments and laboratory tests, and they need money for daily functioning. However, people with chronic HIV/AIDS may frequently experience financial difficulties that influence how weIl they access their medicine(s) and their doctor(s). As previously mentioned, HIV medications are expensive and newly approved ones by the Food and Drug Administration (FDA) may be difficult to access. People with HIV also require day-to-day problem support, otherwise known as instrumental or tangible support (House, 1981). Examples of such support include transportation, household chores, and meal preparation assistance. When people have tangible support, they often cope

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more successfully and stay involved in recreational activities (Friedland, Renrich, & McColl, 1996). Not addressed by the literature is the notion that socio-cultural differences among people living with HIV disease may be sufficiently large to make many of the social support measures used to collect data from one group inappropriate for other groups. A further problem is that a significant proportion of HIV-positive people are institutionalized in hospitals, hospices, rehabilitation centers, or prisons, and are, therefore, experiencing quite different support requirements and opportunities than those residing in the community. For example, people who are hospitalized or institutionalized may have more chances to receive social support from staff than family or community friends. Nevertheless, empirically, one can measure social support both subjectively and objectively. The subjective approach measures social support from the perspective of the target person (Le., HIV -infected person). The objective approach measures social support from the perspective of the outsider (i.e., health care provider). There are almost as many methodologies and instruments for collecting data about social support as there are theoretical or empirical discussions of the concept (DiMatteo & DiNicola, 1982; Streeter & FrankIin, 1992; Veiel, 1990). However, generally instruments measuring aspects of social support have included 1 item to 40 item sc ales (Streeter & Franklin, 1992), and few sc ales have been normed on HIV infected populations or used in conjunction with the concept of adherence (Morse et al., 1991).

Medication Compliance Examination of the literature on medication compliance reveals that the first research began around 1943, wh ich marked the advent of double blind testing and the inception of antibiotics (Haynes, 1979; Koltun & Stone, 1986). Most of the empirical work, on medical issues such as asthma, diabetes, and heart disease, were conducted in the 1970s and 1980s. The 1990s marked the beginning of attention being given to adherence issues specific to people with HIV /AIDS (Besch, 1995; Morse et al., 1991), because complex regimens consisting of numerous pills with cross-resistance potential were being prescribed to them. Literature has shown that rates of noncompliance average about 50% and are pervasive across populations and diseases. In the general population, noncompliance rates range from 10-92%. Rates depend upon characteristics of the condition, treatment, patient, and setting. Factors

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generally associated with medication compliance are inconclusive and include the following: Sociodemographics (older people are better compliers) Psychological (substance abusers are poorer compliers) Symptom severity (people with more severe symptoms comply better) Referral process Treatment regimen (people with complex regimens are poorer compliers) 6. Social support (people who have support comply better) 7. Patients' health beliefs 8. Patient-practitioner interaction

I. 2. 3. 4. 5.

Barriers to compliance with research studies are generally categorized as medical, financial, socio-cultural, and psychological. The concept of medication compliance has been defined and studied by many researchers (Arras, 1990; Besch, 1995; Cramer & RusselI, 1988; Cramer & Spilker, 1991; Cummings, Kirscht, Binder, & Godley, 1982; Haynes, Taylor, & Sackett, 1979; Morse et al., 1991). Researchers are generally intrigued by the causes of noncompliance, the degree of compliance, relating compliance to therapeutic outcomes, and finding ways to improve compliance. As previously mentioned, factors gene rally associated with medication compliance have included: sociodemographic and psychological factors, such as age, race, and substance abuse history (Cummings, Kirscht, Binder, & Godley, 1982; Haynes, 1979; Haynes et al., 1979), severity of symptoms (Haynes, 1979), referral process (Haynes, 1979), treatment regimen (Haynes, 1979; Phillips, 1988; Ross, 1991), social support (Levy, 1983; McIntosh, 1974; Zax et al., 1961), patients' health beliefs (Becker et al., 1979; Wolf et al., 1991), and patient-practitioner interaction (Haynes, 1979; McIntosh, 1974). Nevertheless, despite great amounts of research findings remain quite inconclusive.

Dimensions 0/ Medication Compliance and HIV Insofar as the HIV literature, the most frequently reported reasons for non-adherence are forgetting, sleeping through the dose, being too sick from side effects and feeling depressed (Chesney, 1994; Chesney & Folkman, 1994; Chesney, Lurie, & Coates, 1995; Hays, Chauncey, & Tobey, 1990; Hays, McKusick, Pollack, Hilliard, Hoff, & Coates, 1994; Morris & Schulz, 1993; Moynihan, Christ, & Silver, 1988). Despite the fact that patients realize that good compliance is vital to their health and weil being, noncompliance remains a distressingly common issue in

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clinical care and practice (Cramer & Russel, 1988; Meichenbaum & Turk, 1987). Noncompliance is more prevalent in people who have chronic illnesses requiring prophylactic treatments, such as HIV (Haynes, 1979; Meichenbaum & Turk, 1987). Realistically, poor compliance can deter good medical care and undermine the validity of clinical drug trials (Haynes & Dantes, 1987). Therefore, combination therapy that includes protease inhibitors and other antiretrovirals must be taken seriously and patients must consistently adhere to their prescribed regimen so that studies may be meaningful and drug resistance may be avoided. As HIV regimens have multiplied, the issue ofresistance has come to the forefront. Drug resistance develops quickly if one takes just one drug. When one takes three or more drugs, HIV multiplies more slowly and it may take longer for resistance to develop. Cross-resistance is also a concern for both patients and their providers. Because most drugs used to fight HIV are at least partly cross-resistant, patients do not always realize that if they develop resistance to one drug they might not be able to use any other drugs of the same type. So to avoid using up treatment options, all medications must be taken according to the physician's instructions, which makes adherence an issue of great importance, and engendered the development and analysis of the following study.

STUDY PURPOSE AND METHODS A study was designed to discover which social support and which mediating variables might be associated with good medication compliance for people living with HIV disease. Primarily the study endeavored to discover the relative influence of seven social support indicators between groups of"Good CompHers" and "Poor Compliers," as measured by clinical trial "clinician" researcher and HIV infected study participant ratings. The study's second purpose was to discover predictors of medication adherence by also examining selected sociodemographic, psychological history , and stage of illness variables. The researcher examined the relationship between seven specific social support indicators, psychological and stage of illness variables, and sociodemographics and either good or poor compliance behaviors. Perceptions of 179 HIV -infected study participants and their clinicians who participated in an NIH combination therapy and compliance study were examined. The stated research question was: What is the relativ~

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influence of social support and other mediating variables on the medication compliance levels, as measured by HIV infected study participant and clinician perceptions?

Theoretical Framework The study was conceptualized using the theoretical framework of social support theory to examine medication compliance ratings (Brugha, 1995; Cohen & Syme, 1985). Social support theory basically states that the availability of social support and one's perception of such support depend upon one's psychological status and/or medical condition. Sarason and colleagues (1990), with a non-HIV population, theorized that social support might also have significant physiological correlates. Brugha (1995) and Cohen and Syme (1985) have reported elsewhere that how people perceive the quality of their support may help professionals assess another's psychological status and medical condition. Hence, some researchers have found social support theory to be valuable because they believe that networks, context of relationships, and quality of support are as important as the existence, quantity and type of interpersonal relationships.

Design An ex post facto cross-sectional secondary data analysis was conducted. This correlational and quantitatively designed study examined adherence data at one point in time-the study participants' and clinician's medication compliance ratings at a six-month clinical trial study visit. A three-stage analysis was used to test 14 hypotheses and conduct multivariate analyses.

Data Collection Procedure/lnstrument This secondary data analysis used selected data that were originally collected from the many forms developed for two federally funded clinical trial research studies (Besch, 1995; Saravolatz, Winslow, Collins, Hodges, Pettinelli, Stein et al., 1999) that were completed by 550 patients who had coenrolled in a Compliance Study and either a Treatment Study or aPrevention Study (EI-Sadr, Luskin-Hawk, Yurik, Walker, Abrams, lohn et al., 1999). The original data collection time period evolved approximately over four years. Patients enrolling in the original Compliance Study were in good health at the time of study entry,

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they had a perceived life expectancy of at least five months, and a Karnofsky performance score greater than 60. Original study data were collected on standardized forms developed by the University of Minnesota statistical center connected with the federally funded community-based research initiative (CPCRA, 1996). The multiple forms used to originally collect data were: a Baseline Data form, Patient Self-report form, and Case report form. Clinicians reported their ratings of patient medication compliance on the Treatment Study Case Report forms. A Compliance packet, consisting of Baseline Data, Patient Self-report, and Follow-up questionnaire forms, was administered to consenting HIV -infected study participants. Additional data from the larger federally funded Treatment study also came from enrollment and patient 10cator forms and chart abstraction.

Sampie A subsampie of 179 HIV infected patients who had coenrolled in a federally funded Treatment study (Saravolatz et al., 1999) and nested Compliance study (CPCRA Compliance 012 Handbook, 1991) comprised the sampling frame studied. Study participants had an HIV -positive diagnosis, their CD4 cell counts were less than or equal to 200, and they had a perceived life expectancy of more than five months. Only study participants who completed their six-month study visit and compliance questionnaire responses were analyzed, and both clinician and patient ratings of medication compliance were examined.

Measurement Seven indicators of social support were examined. Three variables measured types of social support (i.e., economic, emotional, day-to-day problem support) with Likert scales. Two variables measured health care provider support by asking "How helpful they thought their doctor and nurse were?" Two other variables measured the existence of social networks and shared living arrangements. Social support was defined as an interpersonal transaction involving concern, aid, and information about oneself and the environment. The social support concept (independent variable) was specifically operationalized with these seven indicators that were found to be prominent descriptions and typologies of social support that existed in the literature (House, 1981).

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Questions that measured medication compliance levels were obtained from study participant and clinician ratings of medication compliance. On the Patient Self-Report Form, question 18 assessed study participants' perceptions-"During the last 6 months how would you assess your compliance with taking your study drug(s)?" The response options were "Good" and "Poor." "Good" was defined as taking medications 80% or more of the time. "Poor" was defined as taking medications 79% or less of the time. This study restrictively defined medication compliance in the "context of randomized, controlled, clinical trial regimens, and compliance was understood to mean study drug adherence" (Cox, 1997, p. 13). The dependent variable of medication compliance was defined as "the extent to which a person's behavior, in terms oftaking study medications, coincides with medicalor health advice" (Haynes, Taylor, & Sackett, 1979). Sociodemographics and two mediating variables (i.e., psychological factors and stage of illness factors) were also examined. Six sociodemographic variables were chosen: age, gender, race, sexual behavior (same sex sexual behavior and opposite sex sexual behavior), education, and employment. Sociodemographic measures obtained from the Baseline Data Form included education and employment status. Question 1 asked, "How much formal education have you completed?" Question 3 queried, "Are you currently employed?" Self-report ratings of the 179 HIV -infected study participants who were enrolled in the NIH federally funded community-based AIDS Treatment and Compliance study were also used to measure and analyze psychological history factors. The psychological history variables examined tried to discern prior high risk behaviors often associated with HIV / AIDS patients (Kennedy, 2000). These selected variables included the following four indicators: history of aIcohol use ("Have you ever had a drinking problem?"), street drug use ("Have you ever used street drugs?"), mental heaIth hospitalizations ("Have you ever been hospitalized for amental condition'?"), and suicide attempts ("Have you ever attempted suicide?"). Two stage of illness variables were examined: current experience with HIV related symptoms ("Are you currently having HIV -related symptoms?") and length of time since diagnosis ("When did you learn you were HIV-positive?") If they knew the date, respondents gave the month and year of their diagnosis.

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DATA ANALYSIS AND RESULTS Characteristics 0/ HIV-In/ected Study Participants This secondary data analysis derived its sampie from federally sponsored clinical trials wherein 179 HIV infected people who originally completed both a Compliance study questionnaire and a Combination Therapy Treatment protocol were studied. Data analyses were conducted by using the Windows format of the Statistical Package for the Social Sciences (Norusis, (SPSS 6.1), 1995). Univariate statistics were used to profile the sampie population and to examine assorted variables for appropriate use in subsequent bivariate statistical hypothesis testing. Table 1 displays the demo graphics of HIV -infected Compliance study participants (the subsampie who enrolled in the Treatment Study and Compliance Study). This table reveals that 91 % of the 179 study participants were men, 9% were women and the average age was 37 years old. Fifty-three percent were white and 39% were African American. Sixty-eight percent reported having same sex sexual behavior and 55% of participants were unemployed. Approximately, 60% had some college education or were college graduates. The majority of patients, 91 %, reported that they perceived having support, and 70% of study participants reported that they lived with someone. Examination of the seven specific social support indicators, as seen in Table 2, revealed that more people reported having emotional support (a mean score of 2.93) than economic or day-to-day problem support. Study nurse and study doctor support were both rated very highly. Insofar as psychological history profiling (Table 3), 21 % had a history of alcohol use and 49% had a history of street drug use. Only 10% of study participants reported having had prior mental hospitalizations or suicide attempts. In examining stage of iIIness indicators (Table 4), most study participants (49%) reported having mild symptoms. Only 3% reported having severe symptoms. In Table 5, the data show that Clinicians rated patients as "Good compliers" 81 % of the time; whereas patients rated themselves as "Good compliers" only 79% of the time.

Testing 0/ Hypotheses and Interpretations Aseries of bivariate analyses were conducted to test 14 study hypotheses related to social support and medication compliance. Seven hypotheses

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Lisa E. Cox

TABlE 1. Demographies of Compliance Study Participants: Total Sam pie (N =

179) Variables

Test Statistic

Gender Male

n= 163

Female

n = 16

Age

M= 37.34

91.1 % 8.9%

SO= 7.7%

Race Latino

n=12

6.7%

African American

n= 70

39.1 % 53.1 %

White

n= 95

Asian

n=1

.6%

Aleutian

n=1

.6%

Sexual Behavior Same sex contact

n= 122

68.2%

Opposite sex contact

n= 107

59.8%

Employment Status Employed

n= 81

45.3%

Unemployed

n= 98

54.7%

Education 58th grade

n=3

1 .7%

Some high school

n= 22

12.3%

High school graduate

n= 40

22.3%

Trade or business school

n=8

Some college

n= 60

33.5%

College Graduate

n= 46

25.7%

4.5%

predicted relationships or differences between social support variables and "good" and "poor" medication compliance levels, as perceived by clinicians. The other seven hypotheses predicted these same differences as perceived by HIV-positive study participants (Cox, 1997). Chi square statistics were used to analyze four categorical social support variables: general support, living situation support, study doctor support, and study nurse support. Independent sampIe t-tests (Hsu, 1938) were used to analyze three continuous social support variables: emotional, economic, and day-to-day problem support. Only two of the hypotheses were statistically significant, as is indicated in Table 6. As predicted and measured by clinician ratings, the third hypothesis was

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TABLE 2. Social Support Indicators of HIV+ Study Participants: Total Sampie (N = 179) Test Statistic

Variables General support Does have support

n= 162

Does not have support

n=17

90.5% 9.5%

Lives alone

n= 53

29.6%

Lives with someone

n = 126

70.4%

Perception of economic support

M= 1.90

SO= 1.16

Perception of emotional support

M= 2.93

SO= 1.14

M= 2.07

SO= 1.07

Living situation support

Perception of day-to-day problem support Perception of study doctor support Not helpful

n=1

1.4%

Somewhat helpful

n=6

8.3%

Very helpful

n= 107

90.3%

Perception of study nurse support Not helpful Somewhat helpful

n=2

2.7%

Very helpful

n = 71

97.3%

TABLE 3. Profile of Study Participants' Psychological History: Total Sampie (N 179) Variables

Test Statistic

Alcohol Use Positive History

n= 37

20.7%

Negative History

n= 142

79.3%

Positive History

n= 88

49.2%

Negative History

n=91

50.8%

Street Drug Use

Mental Hospitalization Positive History

n=8

10.1%

Negative History

n = 161

89.9%

Suicide Attempt Positive History

n=8

10.1%

Negative History

n= 161

89.9%

=

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TABLE 4. Stage of Illness Profile of Study Participants: Total Sampie (N = 179) Variables

Test Statistic

Presence of symptoms None

n= 64

36.0%

Mild

n= 87

48.9%

Moderate

n= 21

11.8%

Severe

n=6

3.4%

Length of time since diagnosis (in months)

M = 40.37

SD= 32.37 Range = 6 to 138 months

T ABLE 5. Study Patient and Clinician Medication Compliance Ratings at 6 Months Variables

Test Statistic

Patient Ratings a Good Compliance

n= 58

78.7%

Poor Compliance

n=16

21.6%

n= 71 n=17

80.7%

Clinician

Ratings b

Good Compliance Poor Compliance

19.3%

aN= 74 bN= 88

supported, in that "good compliers" were associated with having higher levels of emotional support. This finding coincides with the medication compliance literature, in that emotional support is important to people with HIV. Surprisingly, the fifth hypothesis was not supported, although it was significant (Table 6). Per cIinician report, the researcher had predicted that people who reported having higher levels of economic support would have higher levels of medication compliance. Instead, data indicated that people with less economic support reported higher levels of medication compliance. These intriguing findings may mean that poorer patients comply better because they are grateful for access to free medications through

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SOCIAL WORK HEALTH AND MENTAL HEALTH

TABLE 6. Differences Between Medication Compliance Groups on Types of Social Support Indicators Clinician Compliance Rating Type 01 SU2fl9rt

Poor

Good

t

Economic Support

M= 2.47 M= 2.60 M= 1.93

M = 1.78

2.06*

M= 3.16

1.81*

Emotional Support Day-to-D~y

Problem Support

.74 n.s.

M=2.17

Patient Compliance Rating

t

Type 01 Social Support

Poor

Good

Economic Support

M=2.21

M = 1.88

.90 n.s.

Emotional Support

M= 3.35 M= 1.93

M= 2.97 M= 2.20

1.25 n.s.

Day-to-Day Problem Support

.81 n.s.

* P< .05

an AIDS research study. Or, maybe the more financially secure patients do not feel as compelled to follow their doctor's advice. Overall, it appeared that social support was strongly correlated with medication compliance at the bivariate level. T -values for both economic and emotional support were deemed as significant at the .05 level (Table 6).

Discriminant Function Analysis The last stage of analysis, at the multivariate level, used discriminant function analysis for two reasons. First, the researcher wanted to identify the best predictors for discriminating between "good compliers" and "poor compliers." Second, the investigator wanted to create a correet classification rate for each group and the whole sampie. Basically, discriminant function analysis (OFA) is a statistical procedure that examines the differences between two or more groups, in relationship to lots of variables all at the same time (Klecka, 1980). In this study, four assumptions of OFA were accounted for: (a) normal distribution, (b) homogeneity of variances, (c) independent hypotheses, and (d) homogeneity of the covariances. When computer printouts were viewed, the highest correlation was noted between day-to-day problem support and emotional support, indicating that there was no evidence of multicolinearity. Hence, the variables were not redundant, and were seemingly worth exploring further (Cox, 1997).

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Lisa E. Cox

To test whether variances within-groups were significant (above .05), Box's M was used (Box, I 954a, 1954b). For the Patient rated group, the Box's M score was significant, which suggested that OFA might not be an accurate procedure. Hence, this study's findings probably hold for purposes of classification but not model building.

TwoModels Two models were tested: Model 1 was the Clinician Rated Medication Compliance Model (Tables 7 and 8) and Model 2 was the Patient Rated Medication Compliance Model (Tables 9 and 10). For each model the investigator interpreted the functions, examined the group centroids, and reported on the classification of cases. A stepwise method was used. Findings from Modell revealed that the function did not discriminate weIl. In other words, the low canonical correlation and high Wilk's TABlE 7. Discriminant Function Analysis and Related Statistics Model 1 : Clinician Rated Compliance Groups Eigenvalue

.1964

% of Explained Variance

100%

Canonical Correlation

.41

Wilk's Lambda

.84

Significance Level

p= .0042

TABlE 8. Standardized Canonical Discriminant Function (DF) Coefficients and Pooled Within-Groups Correlations Between Discriminating Variables and Canonical DF Discriminating Variables

Standardized Canonical

Pooled Within-Groups

DF Coefficients

Correlations Between Discriminating Variables and Canonical DFs

CLiNICIAN RATING Employed

.76

.72

Emotional support

.70

.65

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SOC/AL WORK HEALTH AND MENTAL HEALTH

TABLE 9. Discriminant Function Analysis and Related Statistics Model 2: Patient Rated Compliance Groups Eigenvalue

.1009

% 01 Explained Variance

100%

Canonical Correlation Wilk's Lambda

.30 .91

Signilicance Level

p=.0135

TABLE 10. Standardized Canonical Discriminant Function (DF) Coefficients and Pooled Within-Groups Correlations Between Discriminating Variables and Canonical DF Discriminating Variables

Standardized Canonical

Pooled Within-Groups

DF Coefficients

Correlations Between Discriminating Variables and Canonical DFs PATIENT RATING

Presence 01 Symptoms

1.0

1.0

lambda indicated that the function was not very powerful. Canonical correlations denoted the measure of degree of association between the discriminant and the groups ("Higher is Better"). A set of 20 discriminant variables were identified and then used to create classification rates for the two groups: "Good compliers" and "Poor compliers." Several of the predictor variables required recoding into intervallevel dummy variables where 0 represented the absence of an attribute, and 1 represented the presence of an attribute. TAU was computed which indicated how much above chance the model correctly classified variables. Findings from Model 2 revealed that while the function significantly discriminated between the two patient rated compliance groups it also was not powerful. When the interpretation of functions was examined, it was noted that one demographic variable (employment) and one social support variable (emotional support) comprised the function in Modell (Table 8). For employment, the DF coefficient was .76 and the pooled within-groups correlation was .72. For emotional support, values were .70 and .65 respectively.

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These results me an that employment status had a !ittle stronger relationship to the function than did emotional support, yet both were positively related to the function. Only one stage of illness variable, the presence or absence of symptoms entered the equation (Table 10). Because only one variable comprised the function, both the standardized canonical DF coefficient and the pooled with-in groups correlation equaled 1.0. Based on the positive pooled with-in groups correlation, the variable symptoms were positively related to the dependent variable. Basically, these findings showed that the function for clinicians classified the "poor compliers" (73.3%) a little better than the "good compliers" (68.3%). The function for patients classified the "good compliers" (93.1 %) much more successfully than the "poor compliers" (35.0%). When TAU was examined (top of Table 11), which indicates how much above chance the model correctly classified data, the findings revealed that for the clinician rated compliance model TAU was .52. This meant that Function I resulted in 52% fewer errors in the clinician rated model than would be expected by random assignment. For the patient rated compliance model, TAU was .64 (bottom of Table 11), which meant that Function 1 resulted in 64% fewer errors in the patient rated model than would be expected by random assignment. So while the two DF models were fairly accurate in predicting group membership, very few predictor variables emerged for either model. Overall, these findings contribute new information to the medication compliance literature for people living with HIV infection. This new information mayaiso help social workers as they work with HIV -infected people on medication compliance issues.

DISCUSSION OF FINDINGS AND STUDY LIMITATIONS The study's main goal was to increase knowledge about how social support and other factors influenced medication compliance behaviors in HIV infected people. Standard care for HIV -infected people now consists mainly of combination therapy. Consequently, people are taking lots of pills for a long time, causing issues of complex and lifelong medication compliance issues to require greater attention. Such attention should not be underestimated because if drug resistance occurs in noncompliant people, such behaviors have the potential to affect the wider public's health. Consequently, such empirical research is much needed on HIV populations, because the adherence literature generated

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SOCIAL WORK HEALTH AND MENTAL HEALTH

TAßlE 11. Discriminant Function Analyses: Classification Results and Tau Predicted Group Membership Actual Group

N

Group 1

Group 2

(Good Compliers)

(Poor Compliers)

CLiNICIAN Group 1

63

(Good Compliers) Group 2

15

(Poor Compliers)

43

20

68.3%

31.7%

4

11

26.7%

73.3%

Percent 01 Grouped Cases Correctly Classilied = 69.2% tau = .52 (52% reduction in classilication errors over chance) Predicted Group Membership Actual Group

N

Group 1

Group 2

(Good Compliers)

(Poor Compliers)

PATIENT Group 1

58

(Good Compliers) Group 2 (Poor Compliers)

16

54

4

93.1%

6.9%

12

4

75.0%

25.0%

Percent 01 Grouped Cases Correctly Classilied = 73.4% tau - .64 (64% reduction in classilication errors over chance)

throughout the 1970s and 1980s focused on other chronic illnesses such as diabetes and epilepsy. Social support theory appears to have merit as a theoretical framework in studying HIV populations and adherence issues. Therefore, social support theory may be added to the multiple theories and conceptual models (i.e., health belief, behavioral learning, etc.) that have already been used to study adherence (Montgomery et al., 1989; Morse et al., 1991; Rosenstock, 1974; Squier, 1990). In the social work literature, very little empirical work has been conducted on the role of social support and medication compliance for peopie living with HIV/ AIDS. Because no empirical studies using a cIinical trials context had been conducted on HIV infected participants, this study has addressed a gap in the social work literature.

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What this study found was that sometimes patients may rate themselves more critically than their clinicians, because they know the truth about whether they have been compliant or not. In other words, "patients focus on themselves and consider only their personal expectations and self-assessments, regarding medication compliance issues" (Cox, 1997, p. 177). By contrast, clinicians have many patients to which they compare medication compliance behaviors. Therefore, it seems reasonable to surmise that clinicians might rate patients more gen erously than patients would rate themselves. Doctors and nurses see a wide range of good, fair or poor compliers, whereas patients only observe themselves. The unexpected finding with regard to economic support resulted when clinician ratings were analyzed. Specifically, the hypothesis that predicted that patients with higher levels of economic support would show higher levels of medication compliance was not supported. Despite the finding being statistically significant (p = .021), this study found that patients with less economic support were better compliers (Cox, 1997). This finding may possibly be interpreted that study participants with less economic support might comply better because they are grateful for access to free medications through an AIDS research study. Another idea is that people who are more financially secure might not feel as compelled to follow "doctor's orders" as those who are more financially disadvantaged. One last interpretation of why people with less economic support were more compliant is that perhaps, these people depe nd more on others for social services, and general health care. Therefore, they are more cooperative and compliant because they want and need the services that come along with participating in a clinical trial. In other words, "people of low socioeconomic status may be accustomed to depending upon 'systems' or have Iearned how to negotiate systems. In asense, they have become 'socialized' in their help and health seeking behaviors" (Cox, 1997, p. 178). At the bivariate level, the relationship between emotional support and clinicians' perceptions of compliance was accepted. Subsequently, at the multivariate level predictors such as emotional support, employment, and symptoms, emerged as significant. A possible interpretation ofthese findings is that perhaps "good compliers" who are employed may be more compliant because they are more hopeful and motivated to comply with their clinicians' instructions, which are designed to enhance their health. Or maybe people who experience fewer symptoms are more compliant because they are em-

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SOCIAL WORK HEALTH AND MENTAL HEALTH

ployed. In any event, employment helps people structure their day, gain a sense of mastery and accomplishment, obtain monetary gain to enhance self-sufficiency, and have a place to belong and to develop social networks.

Limitations and Caveats Despite the study's useful findings, large sampIe size, and a variety of sociodemographic (good number of racial/ethnic minorities represented) and specific independent variables to select from and examine, certain limitations of the study require identification and discussion. This was a correlational non-experimental design. The study was also designed as a secondary data analysis; therefore, only data that were already collected for another original purpose could be analyzed. No control groups or random assignment were used, and social support indicator information was only collected at baseline. In addition, only four sets of pre-determined variables were used in the discriminant function analysis. The greatest limitation of conducting this secondary data analysis was that the researcher was limited to using the data that was already collected, and could not ask additional questions that had not been addressed in the original Compliance and Treatment studies. For example, in the literature side effects and inadequate information about HIV have been cited as being crucial to coping weil with HIV (Chesney, 1994; EI-Sadr & Capps, 1992; Eraker, Kirscht, & Becker, 1984; Fauci, 1992; Fischi et al., 1987; Freeman, Rodriguez, & French, 1996); however, these variables were not considered in the secondary data analysis. Also, the original study did not collect specific data on informational support-a type repeatedly mentioned in the social support literature. Insofar as sampling issues, although the strict eligibility criteria used in the original federally funded Treatment study generated a large sampie, participants were not randomly assigned or selected; therefore, generalizations about the results cannot be extrapolated to all people living with HIV disease-only to the subsampie of 179 HIV -infected study participants who enrolled in the federally funded clinical trials and kept their six month study visit. A final sampling caveat is that although 179 patients were available for bivariate testing, only about 64 cases remained for multivariate analyses (Cox, 1997). A limitation regarding the instruments used was that the participants completed subjective self-report questionnaires. Also, social support was merely measured by seven single-item indicators, which lacked ex-

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tensive richness and multidimensionality. Likewise, medication compliance was only measured as "good" or "poor" because of the limited variation that existed between "fair" and "poor" groups in the original sampie, raw data set. Despite the fact that this study was unable to determine any causal relationships in the Two Models of medication compliance, the findings yield certain implications for social work practice, policy and research.

IMPLICATIONS FOR SOCIAL WORK PRACTICE, POLlcr AND RESEARCH So what do the study' s findings (Having emotional support and being employed appear to be predictive of being a "Good Complier." Having higher levels of HIV symptoms is associated with being a "Poor Complier") imply for active social work practitioners, researchers, and policy makers? How does this study extend empirical knowledge conceming the role of social workers in understanding the relationship between social support and medication compliance for HIV-infected people? How can HIV populations be helped, given the findings about adherence presented here? Wh at practice, policy, and research issues still require redress given what this study has discovered about people with HIV infection and their compliance behaviors? Throughout history, medical social workers have worked in the community, addressing public health concems (i.e., tuberculosis, syphilis, and polio) and in hospital settings (Cabot, 1915; Caputi, 1978; Caroff & Mailick, 1985; Doss-Martin & Stokes, 1989). Social workers have helped physicians by serving as a liaison from the physician to the patient and to the community; and by enlisting the cooperation of patients/clients with the prescribed medical treatment plans through providing education (Cannon, 1913; Carlton, 1984, 1986). Essentially, the health care social worker has long been required to work in microsystems (individuals and families) and macrosystems (community work) (Bartlett, 1957, 1963; Carlton, 1984, 1986; Curtiss, 1989; Falck, 1990; Poole, 1995). This reality and need, for social workers to work with individuals, families, and communities, continue, yet now in addition, they must become aware of HIV and clinical trials research arenas so noncompliant clients can be helped. Social workers need to stay abreast of the stages of HIV disease, economic concems, demographie trends, family issues, and rapidly changing medication therapies (Chesney, 1994; Land, 1994; Lynch, 2000;

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SOClAL WORK HEALTH AND MENTAL HEALTH

Lynch & Palacios-Jimenez, 1993). In addition, AIDS social workers need to work in both in-patient hospital and outpatient community settings. AIDS social workers need to advocate for HIV -infected people and HIV policies, because the vacillating disease process often causes the patient to go between these settings; and some agencies are at risk of not having their funding renewed. Consequently, social workers need to better understand how social support generally influences medication compliance. They need to be genuinely concerned not only about good c1inical care of c1ients, the design and the evaluation of educational, motivational and behavioral interventions, but they also need to be concerned about the successful completion of AIDS research studies and adherence issues. In health care, the ever-changing challenge of HIV / AIDS has changed the shape of social work practice (Alperin & Richie, 1989; Carey, Braaten, Jaworski, Durant, & Forsyth, 1999; Land, 1994; Linn, Anema, Hodess, Sharpe, & Cain, 1993; Taylor-Brown, 1995). Social workers used to help c1ients navigate through stages of illness into death (Land, 1994; Lynch & Palacios-Jiminez, 1993; Shelby, 1992), yet now they must help HIV-infected c1ients return to work and live weil for longer. Social work practitioners need to be strong community liaisons and patient advocates. As government resources shrink, AIDS social workers must more creatively help c1ients access medications, adjust to illness, cope with changes, become educated, and obtain concrete services, such as housing, food, transportation, and counseling. Perhaps most of all, social workers need to learn about medication compliance-teach adherence skills, and teach about drug resistance issues-so that they can truly help clients, their clients' friends and families, and society. In many respects, HIV remains a chronic, medical, financial and psychosocial problem for individuals, their families and friends, and society. Society cares about HIV when money (i.e., the marketplace) and the workplace are involved. This study found employment to be significant; therefore, social workers need to playa greater role in better assessing what employment means for people living with HIV/AIDS. In addition, social workers need to keep current as to insurance issues, premium assistance programs, financial stressors, and disability criteria, which are all factors related to employment and being HIV-positive. Social workers should also work to develop creative intervention strategies that consider social support and adherence. As patient advocates (i.e., buddies, medication managers, etc.) and knowledgeable

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health care team members, social workers can help explain the patterns and meaning of medication compliance behavior of the client to his or her health care provider so that coping strategies and adherence skills may be enhanced. Also, social workers need to be aware of the range of medical and psychosocial resources, psychological, self-help programs, hospice, horne health, and clinical trial programs available to HIV -infected clients. Too often services ex ist, yet clients do not know about them. Social workers could also study organizational aspects, environmental factors, that influence medication compliance. As weil, social workers could advocate for national and local policies that drive and fund support services for people with HIV-including funding to study adherence. Insofar as knowledge building, this study has expanded knowledge about the relationship of social support and medication compliance for HIV infected study participants. Findings support the literature, in that emotional support is related to medication compliance--even for HIV infected populations. Amidst the changing context of health care delivery, social workers increasingly need to conduct research to demonstrate effectiveness in practice, to make policy recommendations, and to develop partnerships with multiple disciplines. Health and HIVjAIDS social workers are weil placed to study the dimensions of social support and their influence on clients who are receiving health care or who are participating in medical research (Jankowski et al., 1996; Lynch & Palacios-Jimenez, 1993). Such research is essential to better understand the issues of HIV infected clients with whom social workers interact. Additional research will be required to address medication compliance issues and further elucidate how social support influences medicati on adherence in HIVjAIDS patients. Future studies need to use an assortment of measures and methodologies. More qualitative and constructivist studies are needed. Future study questions might include the following (Cox, 1997): 1. Will a patient who is aware of being monitored for medication compliance be a better complier than one who is not aware of such monitoring? 2. Will physicians who measure medication compliance (MC) discuss issues related to MC with patients more often than those who do not measure MC? And will these discussions lead to discus-

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sions about diagnosis, disagreements, denial about the illness, forgetfulness in taking medications? 3. Does improving compliance really improve immediate or long-term outcomes, in terms of quality of life, length of time without symptoms, etc.? 4. How can strategies cited in the literature, such as: patient education, horne follow-up programs, simplification of dosing regimens, greater nursing involvement, special counseling, and memory aids (MEMS-medication event monitoring system devices) enhance medication compliance? Clearly, assessing the full range of available support to HIV infected clients is important, because social support is a critical coping strategy that may influence and motivate behavioral responses. Although, Brugha ( 1995) and others have documented growing evidence that social support is important for physical and psychological health as well as for survival, social work researchers may want to further test this theory.

Conclusions, Critique, and Recommendationsfor Future Research Compliance in AIDS treatment and research is important because noncompliance can limit the success of an HIV -infected person 's medical care and undermine the execution and validity of clinical trials (Arras, 1990; Morse et al., 1991). Also, good medication compliance keeps drug resistance from occurring. Psychological history, stage of illness and sociodemographic variables have been somewhat linked to social support and subsequent medication compliance, and researchers (Brugha, 1995, 1990; Fawzy, Namir, Wolcott, Mitsuyasu, & Gottlieb, 1989; Cramer & Spilker, 1991), yet their role in relationship to social support and medication compliance, in HIV -infected populations, still requires more examination. Social support and adherence are important issues to social workers, their clients, and their clients' health care providers. Clients are apt to accept the use of multiple medications if they receive education, support, and psychosocial services (Draine & Solomon, 1994; Freeman et al., 1996). Friends may help their HIV-positive friend work on being a good complier, if they realize that their friend requires transportation, day care, counseling, or a refrigerator (to prolong the therapeutic potential of medicine), in order to keep their medical appointments, obtain

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their medicines, or be effectively retained in clinical trials (Caliendo & Hirsch, 1994; El-Sadr & Capps, 1992; Freeman et al., 1996). A major public health concem is that when too many poor compliers participate in HIV research studies, the reliability and validity of collected data is diminished (Morse et al., 1991, p. 1161). Such behavior thereby lessens the true efficacy of the drug being tested. In summary, social workers can and need to advise patients on how to access medications through clinical trials, pharmaceutical company patient assistance programs, and local health department AIDS Drug Assistance Programs (ADAP). Then, once patients have successfully obtained their HIV medications, social workers also need to help them assess their social support systems (Jankowski, Videka-Sherman, & Laquidara-Dickinson, 1996) and their compliance behaviors (Christen sen et al., 1992). Through collaboration, advocacy, education, and resource referrals, health social workers are challenged to meet the social support needs of clients and compliance expectations that medical staff have of clients. REFERENCES Alperin, D.E. & Richie, N.D. (1989). Community-based AIDS service organizations: Challenges and educational preparation. Health and Social Work, 14(3),165-175. Arras, J.D. (1990). Noncompliance in AIDS research. Hastings Center Report, 20(5), 24-32. Barrera, M. Je. (1986). Distinction between social support concepts, measures, and models. American Journal ofCommunity Psychology, 14,413-416. Bartlett, H. (1957). Fifty years ofsocial work in the medieal profession: Past sign{tlcanee,future outlook. New York: National Association of Social Workers. Bartlett, H. (1963). The widening scope of hospital social work. Social Casework, 44, 3-10. Becker, M.H., Drachman, R.H., & Kirscht, J.P. (1974). A fjeld experiment to evaluate various outcomes of continuity of physician care. Ameriean Journal of Publie Health, 65(11), 1062-1070. Becker, M.H., Maiman, L.A., Kirscht, J.P., Haefner, D.P., Drachman, R.H., & Taylor, D.W. (1979). Patient perceptions and compliance: Recent studies of the health belief model. In R. Brian Haynes, D. Wayne Taylor, & David L. Sackett (Eds.), Compliance in health eare. Baltimore: Johns Hopkins University Press. Berger, R.M. (1992). Passing and social support among gay men. Journal ofHomosexuality, 23(3), 85-96. Besch, c.L. (1995). Compliance and clinical trials. AIDS, 9(1), 1-10.

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Box, G.E.P. (1954a). Some theorems on quadratic forms applied in the study of analysis of variance problems: 1. Effect of inequality of variances in the one-way c1assification. Annals ofMathematical Statistics, 25,290-302. Box, G.E.P .. & Anderson, S.L. (1995). Permutation theory in the derivation of robust criteria and the study of departures from assumptions. Journal ofthe Royal Statistical Socie(v, 17, 1-34. Brugha, T.S. (1990). Social networks and support. Current Opinion in Psychiatry, 3, 264-268. Brugha. T.S. ( 1995). Social support and psychiatric disorder: Research findings and guidelinesfor clinical practice. Cambridge: Cambridge University Press. Ca bot, R. (1915). Social service and the art ofhealing. New York: Moffat, Yard, & Co. Caliendo, A., & Hirsch, M. (1994). Combination therapy for infection due to human immunodeficiency virus type 1. Clinicallnfectious Diseases, 18, 516-524. Cannon, I. (1913). Social work in hospitals: A contribution to progressive medicine. New York: Russen Sage Foundation. Caputi, M.A. (1978). Social work in health care: Past and future. Health and Social Work, 3, 8-29. Carey, M.P., Braaten, L.S., Jaworski, B.C., Durant, L.E., & Forsyth, A.D. (1999). HIV and AIDS relative to other health, social, and relationship concerns among low-income urban women: Abrief report. Journal of Womens Health & Gender-Based Medicine, 8(5), 657-661. Carlton, T.O. (1986). Group process and group work in health social work practice. Social Work with Groups, 9(2), 5-20. CarIton, T. (1984). Clinical social work in health settings. New York: Springer. Caroff, P., & Mailick, M.D. (1985). The patient has a family: Reaffirming social work's domain. Social Work in Health Care, 10(4), 17-34. Carpenter, c.c.J., Cooper, D.A., Fischl, M.S., Gaten, J.M., Gazzard, B.G., Hammer, S.M., Hirsch, M.S., Jacobsen, D.M., Katzenstein, D.A., Montaner, J.S.G., Richman, D.D., Saag, M.S., Schechter, M., Schooley, R.T., vena, S., Yeni, P.G., & Volberding, P.A. (Jan. 19,2000). Antiretroviral therapy in adults-Updated recommendations of the International AIDS Society-USA Panel, JAMA-Journal of the American Medical Association, 283(3), 381-390. Chang, L., Ernst, T., Leonidoyee, M., Witt, M., Speck, 0., Walot, 1., & Miler, E.N. ( 1999). Highly active antiretroviral therapy reverses brain metabolite abnormalities in mild HIV dementia. Neurology, 53(4), 782-789. Chesney, M.A. (1994). Prevention of HIV and STD infections. Preventive Medicine, 23(5), 655-680. Chesney, M.A., & Folkman, S. (1994). Psychological impact of HIV disease and implications for intervention. Psychiatric Clinicians of North America, 17(1), 163-182. Chesney, M.A., Lurie, P., & Coates, T.J. (1995). Strategies for addressing the social and behavioral challenges of prophylactic HIV vaccine trials. Journal of the Acquired Immul10deficiency Syndrome and Human Retrovirology, 9(1), 30-35. Cobb, S. (1976). Social support as a moderator of life stress: Presidential Address-1976. Psychosomatic Medicine, 38(5), 300-314.

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Cohen, S., & Syme, S.L. (1985). Sodal support and health. New York: Academic Press, Inc .. Community Programs for Clinical Research on AIDS Handbook [CPCRA, 19961. Division of AIDS, National Institute of Allergy and Infectious Diseases, National Institutes of Health. Community Programs for Clinical Research on AIDS, Compliance 012 Study Handbook. [CPCRA, 1992]. Division of AIDS, National Institute of Allergy and Infectious Diseases, National Institutes of Health. Cox, L.E. (1997). The relative injluence of sodal support on the medication complian ce of people with H1V irifl!Ction. Doctoral dissertation, Virginia Commonwealth University, Richmond, VA. Cramer, J.A., & Russell, M. (Ed.) (1988). Strategies to enhance adherence to a medical regimen. Compliance in Epilepsy, (Monograph) 163-175. Cramer, 1.A., & Spilker, B. (Eds). (1991). Patient compliance in medical practice and clinical trials. New York: Raven Press. Cummings, K.M., Kirscht, J.P., Binder, L.R., & Godley, A.l. (1982). Determinants of drug treatment maintenance among hypertensive persons in inner city Detroit. Public Hea/th Reports, 97, 99-106. Cummings, K.M., Kirscht, lP., Becker, M.H., & Levin, N.W. (1984). Construct validity comparisons of three methods for measuring patient compliance. Hea/th Services Research, 19(1), April, 103-117. Curtiss, F. (1989). Managed health care. American Journal of Hospital Pharmacy, 46, 742-763. Davies, D., Carne, c., & Camilleriferrante (1999). Combined antiviral treatment in HIV infection. Is it value for money? Public Health, 113(6), 315-317. DiMatteo, M.R., & DiNicola, D.D. (1982). Achieving patient compliance: The psychology ofthe medical practitioner's role. New York: Pergamon Press. Doss-Martin, L., & Stokes, D. (1989). Historical development of social work in primary care. In M. Henk (Ed.), Social work in primary care (pp. 17-30). Newbury Park, CA: Sage Publications. EI-Sadr, W., Luskin-Hawk, R., Yurik, T., Walker, 1., Abrams, D., lohn, S. et al. (1999). A randomized trial of daily and thrice-weekly trimethoprim- sulfamethoxazole for the prevention of Pneumocystis carinü pneumonia in Human Immunodeficiency Virus-infected persons. Clinical1rif'ectious Diseases, 29, 775-783. EI-Sadr, W., & Capps, L. (1992). The challenge of minority recruitment in clinical trials for AIDS. Journal ofthe American Medical Association, 267, 954-957. Eraker, S.A., Kirscht, J.P., & Becker, M.H. (1984). Understanding and improving patient compliance. Annal.l' oflnternal Medicine, 100, 258-268. Falck, H.S. (1990). Observations on the scientific base of health social work. Social Work in Health Care, 15(1),9-19. Fauci, A. (1992). Combination therapy for HIV infection: Getting closer. Anna/s o./Internal Medicine, 116(1), 85-86. Fawzy, F.I., Namir, S., Wolcott, D.L., Mitsuyasu, R.T., & Gottlieb, M.S. (1989). The relationship between medical and psychological status in newly diagnosed gay men with AIDS. Psychiatrie Medicine, 7(2), 23-33.

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Fischi, M.S., Richman, D.D., Grieco, M.H. et al. (1987). The tOXICIty of azidothymidine (AZT) in the treatment of patients with AIDS and AIDS-related complex. A double-blind, placebo-controlled trial. New England Journal ofMedieine,317,185-191. Freeman, R.C., Rodriguez, G.M., & French, lF. (1996). Compliance with AZT treatment regimen of HIV -seropositive injection drug users: A neglected issue. AIDS Edueation and Prevention, 8(1), 58-71. Friedland, G., Renwich, R., & McColI, M. (1996). Coping and social support as determinants of quality of life in HIV/AIDS. AIDS Care, 8(1), 15-31. Gant, L.M. (2000). Advocacy and social policy issues. In chapter 15 of V.J. Lynch, HIV/AIDS at Year 2000. Boston: Allyn & Bacon, 197-210. Gant, L.M. & Ostrow, D.G. (1995). Perceptions of social support and psychological adaptation to sexually acquired HIV among white and African American men. Soeial Work, 40(2),215-224. Gerbert, B., Brown, B., Volberding, P., Cooke, M., Caspers, N., Love, c., & Bronstone, A. (1999). Physicians' transmission prevention assessment and counseling practices with their HIV positive patients. AIDS Education and Prevention, 11(4),307-320. Gottlieb, B.H. (1978). The development and application of a c1assification scheme of informal helping behaviors. Canadian Journal of Behavioural Scienee, 10, 105-115. Gottlieb, B.H. (1983). Soeial support strategies: Guidelines for mental health praetiee. Beverly Hills, CA: Sage. Gottlieb, B.H. (1985). Assessing and strengthening the impact of social support on mental health. Social Work, 30, 293-300. Gottlieb, B.H. (1995). Commentary: Research on mutual aid and social support: Progress and future directions. Canadian Journal ofCommunity Mental Health,14(2), 229-234. Gritz, E.R., DiMatteo, M.R., & Hays, R.D. (1989). Methodological issues in adherence to cancer control regimens. Preventive Medieine, 18, 711-720. Hays, R., McKusick, L., Pollack, L., Hilliard, R., Hoff, c., & Coates, T. (1994). Disc10sing HIV seropositivity to significant others. In R. Bor & J. Elford (Eds.). The family and HIV (pp. 45-57). New York: Cassell. Hays, R.B., Chauncey, S., & Tobey, L.A. (1990). The social support networks of gay men with AIDS. Journal ofCommunity Psyehology, 18, 374-385. Haynes, R.B., Taylor, D.W., & Sackett, D.L. (1979). Compliance in health care. Baltimore: Johns Hopkins University Press. Haynes, R.B. (1979). Introduction. In R.B. Haynes, D.W. Taylor, & D.L. Sackett (Eds.), Compliance in health care. Baltimore, MD: Johns Hopkins University Press. Haynes, R.B., & Dantes, R. (1987). Patient compliance and the conduct and interpretation of therapeutic trials. Controlled Clinical Trials, 8, 12-19. Haynes, R.B., McKibbon, K.A., & Kanani, R. (1996). Systematic review of randomized trials of interventions to assist patients to follow prescriptions for medications. Lancet, 348(9024), 383-386. Henk, M. (Ed.). (1989). Social work in primary care. Newbury Park, CA: Sage Publications.

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House, 1.S. (1981). Work, stress, and social support. Reading, MA: Addison-Wesley. Hsu, P.L. (1938). Contributions to the theory of Student's t-test as applied to the problem of two sampies. Statistical Research Memoirs, 2, 1-24. Hulka, B.S., Cassel, 1.C., lupper, L.L., & Burdette, 1.A. (1976). Communication, compliance, and concordance between physicians and patients with prescribed medications. American Journal ofPublic Health, 66, 847-853. lankowski, S., Videka-Sherman, L., & Laquidara-Dickinson, K. (1996). Social support networks of confidants to people with AIDS. Social Work, 41 (2), 206-213. Kadushin, G. (1999). Barriers to social support and support received from their families of origin among gay men with HlV/AIDS. Health & Sodal Work, 24(3), 163-168. Kaplan, B.H., Cassel, 1.c., & Gore, S. (1977). Social support and health. Medical Care, 15,47-58. Kass, N., Munoz, A., Chen, B., Zucconi, S., Bing, E., Hennessy, M. et al. (1994). Changes in employment, insurance, and income in relation to HIV status and disease progression. Journal ofAIDS, 7(1), 86-9l. Katz, M.H., Cunningham, W.E., Mor, V., Andersen, R.M., Kellogg, T., Zierler, S., Crystal, S.c., Stein, M.D., Cylar, K., Bozzette, S.Z., & Shapiro, M.G. (Jan. 2(00). Prevalence and predictors of unmet need for supportive services among HIV -infected persons: Impact of case management. Medical Care, 38(1),58-69. Kennedy, S. (2000). Psychologie al factors and immunity in HIV infection: Stress, coping, social support, and intervention outcomes. Management ofStress and Anxiety in Medical Disorders, 194-205. Kimberly, 1.A. & Serovieh, J.M. (Dec. 1999). The role offamily and friend social support in reducing risk behaviors among HIV -positive gay men. AIDS Education and Prevention, 11(6),465-475). Klecka, W.R. (1980). Discriminant analysis. Newbury Park: Sage Publications. Koltun, A., & Stone, G.c. (1986). Past and current trends in patient noncompliance research: Focus on diseases, regimens, programs, and provider disciplines. The Journal ofCompliance in Health Care, 1(1), 21-32. Land, H. (1994). AIDS and women of color. Families in Society, 75(6), 355-361. Leukefeld, c.G. (1988). AIDS. Health and Social Work, 13(2), 94-95. Levy, R. (1978). Facilitating patient compliance and medical programs: An area for social work research and intervention. In N. Bracht (Ed.), Social work in health care: A guide to pr(!fessional practice (pp. 281-292). New York: The Haworth Press, lnc. Levy, R.A. (1983). Social support and compliance: A selective review and critique of treatment integrity and outcome measurement. Social Science ami Medicine, 17(18),1329-1338. Levy, R.L. (1986). Social support and compliance: Salient methodological problems in compliance research. The Journal ofCompliance in Health Care, 1(2), 189-198. Linn, I.G., Anema, M.G., Hodess, S., Sharpe, c., & Cain, V.A. (1996). Perceived health, HlV illness, and mental distress in African American clients of AIDS counseling centers. Journal ofthe Association ofNurses in AIDS Care, 7(2),41-43.

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ADDRESSING THE ISSUE OF LONG TERM CARE The Mental Health Status and Long Term Care Needs of the Chinese Elderly in Hong Kong Raymond Ngan, PhD Alex K wan, PhD

SUMMARY. This paper examines the mental health status of 945 Chinese older people who are in need of long term care services in Hong Kong. It was found that for those aged respondents who are already waiting for admission to infirmary, over 59.3% were already living in private aged hornes, and only as few as 17.8% 01' these applicants were stillliving in their own hornes. Besides, it was found that the mean SPMSQ score was lowest amongst those living in medical infirmary (1.52) and highest for those living in their own residences (5.99). Analysis ofthe relationship between GDS scores and residential types reveals that there were higher proportion of respondents residing in their own residences Raymond Ngan is Associate Head, Oepartment of Applied Social Studies, City University of Hong Kong. Alex Kwan is Professor, Oepartment of Applied Social Studies, City University of Hong Kong (E-mail: [email protected]). This paper is based on the research findings of a Strategie Research Grant from the City University. Members of the research teams are: Or. Raymond Ngan, Or. Edward Leung, Professor Alex Kwan, Or. Yeung Wah Tsang and Ms. Alice Chong. lHaworth co-indexing entry note]: 'The Mental Health Status and Long Tenn Care Needs ofthe Chinese Elderly in Hong Kong." Ngan. Raymond, and Alex Kwan. Co·published simultaneously in Soda! Work il/ Jlealth Care ('fhe Haworth Social Work Practice Press, an imprint ofThe Haworth Press, Ine.) Vol. 35, No. 1/2,2002, pp. 461-476; and: Sodal Work Health and Mental Health: Practice, Research alld Prograflls (cd: Alun C. Jaekson, und Steven P. Segal) The Haworth Social Work Praetice Press, an imprint ofThe lIaworth Press, [ne., 2002, pp. 461-476. Single or multiple eopies 01" this article are availablc for a fee from Thc Haworth Document Delivery Service [1·800-HAWORTH, i;;

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The total number of NESB inpatients who accessed a registered interpreter whilst inpatients at SHH comprised 43 inpatients. The use of interpreters from the eight countries with highest NESB representation totalled 20. Both figures indicate a similar lack of use of interpreters during the inpatients' stay at the hospice. Figure 4 indicates that a significant proportion of NESB inpatients reported that they utilise English as their major language spoken in the horne environment. This is especially the case with Czechoslovakia, Germany, Hungary and Poland. Whereas for China, Greece and the former USSR, inpatients identified their language from their country of birth as the primary language spoken in their horne environment. Figure 5 presents the comparison of male to female NESB inpatients at SHH during the three-year research period for the top eight countries. All countries except the former USSR had more males than females as inpatients at SHH. Italy in particular had a significantly higher proportion of males to females. Figure 6 provides information about the number of people the NESB inpatient was residing with immediately prior to their admission to FIGURE 4. Sacred Heart Hospice Non-English Speaking Background English as Language Spoken at Horne Top Eight Countries 100

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SOC/AL WORK HEALTH AND MENTAL HEALTH

FIGURE 5. Sacred Heart Hospice Non-English Speaking Background Patient Gender Top Eight Countries 30

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FIGURE 6. Sacred Heart Hospice Non-English Speaking Background Number of People the Patient Resides with Top Eight Countries

45

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Field, Maher, and Webb

SHH, for the top eight countries. In particular, inpatients who were born in China, Italy, Greece and the former USSR have stated that they were often living with one or more persons prior to admission, whereas inpatients from Czechoslovakia indicated that they were often Iiving alone. The fact that many inpatients from Czechoslovakia were living alone is somewhat supported by Figure 7, which shows whether patients were admitted from horne or from a hospital. Czechoslovakian inpatients were more likely to be admitted from hospital. Figure 8 reveals the mean length of stay at SHH for NESB inpatients from the top eight countries during the research period. Comparisons drawn with Figure 6 indicate that if the inpatient was residing with somebody prior to their admission, the length of stay at the hospice was reduced. The overall me an length of stay at SHH for all inpatients was 25.58 days. Figure 9 provides information as to the religion of NESB inpatients from the top eight countries. A major cause for the high proportion of inpatients nominating Roman Catholic as their personal religion is that FIGURE 7. Sacred Heart Hospice Non-English Speaking Background Where Inpatient Was Adrnitted frorn Top Eight Countries 20

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