Social Work in Health Care : A Handbook for Practice 9781317823971, 9780866568463

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Social Work in Health Care A Handbook for Practice

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About the Editors Kay W. Davidson, DSW, is Associate Professor at Hunter College School of Social Work in New York City. She brings to her current teaching position many years of experience working in England and the United States as a practitioner and administrator in social work in health and mental health care. Dr. Davidson has published articles on social work issues in health care and social work education. She is an active member of the Society of Hospital Social Work Directors and the National Association of Social Workers. Sylvia S. Clarke, MSc, is a nationally known leader in health care social work who has spent the major portion of her career as administrator of social work departments in two large, urban medical centers. She has also been active as a social work educator. The editor of the journal Social Work in Health Care (The Haworth Press, Inc.) since its inception in 1975, she has conducted numerous workshops and seminars in writing for professional publication.

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Social Work in Health Care Part I A Handbook for Practice Kay W. Davidson, DSW Sylvia S. Clarke, MSc Editors

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© 1990 by The Haworth Press, Inc. All rights reserved. No part of this work may be reproduced or utilized in any form or by any means, electronic or mechanical, including photocopying, microfilm and recording, or by any information storage and retrieval system, without permission in Writing from the publisher. First published by: The Haworth Press, Inc., 10 Alice Street, Binghamton, NY 13904-1580 This edition by Routledge: Routledge Taylor & Francis Group 270 Madison Avenue New York, NY 10016 Routledge Taylor & Francis Group 2 Park Square, Milton Park Abingdon, Oxon OX14 4RN Library of Congress Cataloging-in-Publication Data A Handbook for practice. Selected articles reprinted from Social work in health care. v.1-11, 1974-86. Includes bibliographical references. 1. Medical social work. 2. Medical social work—United States. I. Davidson, Kay W. II.

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Clarke, Sylvia S. III. Social work in health care. [DNLM: 1. Delivery of Health Care. 2. Social work. W 322 H236] HV687.H26 1990 362.1’0425 89-24535 ISBN 0-86656-846-8 (set) ISBN 1-56024-025-3 (pt.I) ISBN 1-56024-026-1 (pt.II) ISBN 0-86656-907-3 (pbk.set) ISBN 1-56024-005-9 (pt.I) ISBN 1-56024-006-7 (pt.II)

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Contents PART I Preface Kay W. Davidson Sylvia S. Clarke PART 1: HEALTH CARE SOCIAL WORK: HISTORY AND CONTEMPORARY ISSUES Introduction Social Work in Health Settings: A Historical Review Martin Nacman, DSW The Role of Social Workers in Medical Education: A Historical Perspective Mildred M. Reynolds, LCSW Hyman J. Weiner’s Use of Systems and Population Approaches: Their Relevance to Social Work Practice in Health Care Today Sylvia S. Clarke, MSW, ACSW

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An Ecological Perspective on Social Work Practice in Health Care Carel B. Germain, DSW Social Work in Health Settings Hans S. Falck, PhD Commentary Additional Readings PART 2: WORKING WITH PATIENTS AND FAMILIES Introduction Psychosocial Responses to Traumatic Physical Disability Barbara A. Lilliston, MSW, CSW The Impact of Severe Illness on the Individual and Family: An Overview Mildred Mailick, DSW The Social Nature of Chronic Disease and Disability Neil F. Bracht, MA, MPH, ACSW Families, Transitions, and Health: Another Look Carolyn Dillon, MSW, LICSW

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Social Work in Home Dialysis: Responding to Trends in Health Care Sally E. Palmer, MSW The Anatomy of Discharge Planning Grace Fields, MSW, ACSW Evolving Social Work Roles in Health Care: The Case of Discharge Planning Kay Wallis Davidson, MS, CSW Commentary PART 3: RESEARCH AND EVALUATION Introduction Social Work Services as a Component of Palliative Care with Terminal Cancer Patients Helen Allison, RN, MSW James Gripton, DSW Margaret Rodway, PhD Family Coping with the Crisis of Heart Attack Surjit Singh Dhooper, MSW, PhD Evaluation of Social Work Practice in Health Care Settings 15

K. Jean Peterson, DSW Sandra C. Anderson, PhD Commentary Additional Readings PART 4: WORKING WITH COLLEAGUES Introduction The Interprofessional Team as a Small Group Rosalie A. Kane, DSW A Multimodel Approach to Collaborative Practice in Health Settings Mildred D. Mailick, MSW, ACSW Pearl Jordon, MSW, ACSW Diagnosing the Hospital Team Frances Nason, MSW, LICSW The Impact of Illness on Patients and Families: Social Workers Teach Medical Students Susan Hunsdon, MSW, ACSW Sylvia S. Clarke, MSW, ACSW

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A Gerontology Internship Program for Medical Students Alice Ullmann, MS Hirsch S. Ruchlin, PhD Commentary Additional Readings PART 5: DEVELOPING PROGRAMS AND DELIVERING SERVICES Introduction A Systems Approach to the Provision of Social Work Services in Health Settings Martin Nacman, DSW A Preventive Program for Bereaved Families Kristine S. Stubblefield, MSW, CSW The Short-Term Treatment of Depression of Physically Ill Hospital Patients Mildred D. Mailick, DSW Terminal Cancer: A Challenge for Social Work Carleton Pilsecker, MSSW, ACSW The Case of Ann: A Sleep Disturbance in a 3-Year-Old Child 17

Emily Hancock, MSW Family Treatment in the Health Setting: The Need for Innovation Beth Kemler, PhD, LICSW Social Work Groups in Health Settings: Promises and Problems Helen Northen, PhD The Legacy of the Group: A Study of Group Therapy with a Transient Membership Susan S. Bailis, ACSW Susan R. Lambert, ACSW Stephen B. Bernstein, MD Rehabilitation After Mastectomy: The Group Process Sona Euster, MSSA, ACSW Commentary Additional Readings

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Contents PART II PART 6: PROFESSIONAL AUTHORITY, AUTONOMY, AND ACCOUNTABILITY Introduction A Social Work Department Develops and Tests a Screening Mechanism to Identify High Social Risk Situations Barbara Berkman, DSW Helen Rehr, DSW Gary Rosenberg, PhD The Impact of Early and Comprehensive Social Work Services on Length of Stay Charlotte R. Boone, MSW, ACSW Claudia J. Coulton, PhD, ACSW Shirley M. Keller, MSSA Myocardial Infarction Patients in the Acute Care Hospital: A Conceptual Framework for Social Work Intervention Joanne Sulman, MSW, CSW

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Goldie Verhaeghe, MSW, CSW Medical Handmaidens or Professional Colleagues: A Survey of Social Work Practice in the Pediatrics Departments of Twenty-Eight Teaching Hospitals Jane H. Pfouts, PhD Brandon McDaniel, MS Initiation of a Quality Assurance Program for Social Work Practice in a Teaching Hospital Kris Ferguson, ACSW M. Leora Bowden, ACSW Donna Lachniet, ACSW Anne Malcolm, BA Gladys Morgan, MSW Clinical Social Work with Young Adult Perspectives of Patients, Parents, and Clinicians Mollie C. Grob, MSW, ACSW Susan V. Eisen, PhD Golda M. Edinburg, MSW, ACSW

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Inpatients:

Predicting Patterns of Social Work Staffing in Hospital Settings George I. Krell, MS, ACSW Gary Rosenberg, PhD A Survey of Patient and Family Satisfaction with Social Work Services Leslie Garber, ACSW Susan Brenner, ACSW Diane Litwin, ACSW Commentary Additional Readings PART 7: SPECIAL POPULATIONS AND CONTEXTS Introduction Social Work and Alzheimer’s Disease: Management in the Absence of Medical Cure Stephen Berman, ACSW Meryl B. Rappaport, LCSW Social Work and AIDS Anne-Linda Furstenberg, PhD 21

Psychosocial

Miriam Meltzer Olson, DSW Developing Responsiveness to the Health Needs of Hispanic Children and Families Sylvia Guendelman, LCSW, DSW Factors Affecting Coping of Adolescents and Infants on a Reverse Isolation Unit Margarita Kutsanellou-Meyer, CSW Grace Hyslop Christ, CSW Trauma Centers: A New Dimension for Hospital Social Work Jean M. Moonilal, LCSW, ACSW The Intensive Care Unit: Social Work Intervention with the Families of Critically Ill Patients Cindy Cook Williams, RN, MSW, ACSW Donetta G. Rice, MSW, ACSW Social Work and Primary Health Care: An Integrative Approach Joan R. Brochstein, MSW, MPH George L. Adams, MD Michael P. Tristan, MD, MPH

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Charles C. Cheney, PhD Commentary Additional Readings PART 8: PREPARATION FOR SOCIAL WORK IN HEALTH CARE Introduction Interprofessional Education and Social Work: A Survey Rosalie A. Kane, DSW The Social Worker New to Health Care: Basic Learning Tasks Claire Johnson Bennett, MSW Gail Green Grob, MSW The Psychiatric Emergency Service as a Setting for Social Work Training Susan F. Walsh, PhD Commentary Additional Readings PART 9: AN EXPANDED ROLE FOR SOCIAL WORK Introduction 23

Advancing Social Work Practice in Health Care Gary Rosenberg, PhD Rape Crisis Intervention in the Emergency Room: A New Challenge for Social Work Maria I. Vera, MSW, ACSW The Ecology of Social Work Departments: Empirical Findings and Strategy Implications Bruce S. Jansson, PhD June Simmons, MSW, LCSW An Expanded Social Work Role in a University Hospital-Based Group Practice: Service Provider, Physician Educator and Organizational Consultant Sylvia S. Clarke, MSW Linda Neuwirth, MSW Richard H. Bernstein, MD Commentary Additional Readings Index

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Preface This book of readings celebrates social work practice in health care settings. Its preparation marks the first decade of publication of Social Work in Health Care, the first independently published journal devoted exclusively to this specialized area of practice. A reference book of outstanding articles from the first ten years of publication provides an appropriate celebration and a tangible milestone. In the time it took to fashion this book, the decade became eleven years. This volume contains, therefore, what its editors see as outstanding articles published in the first eleven volumes of Social Work in Health Care, beginning with Volume 1, 1974-75, through Volume 11, 1985-86. We see this as an educational book. The articles are grouped so that practitioners, educators, researchers, and students can readily review dominant themes and critical issues that shape today’s practice environments. Students and beginning practitioners will find here illustrative readings that analyze theory, research, and practice of the recent past. The evolution of current trends and emerging policies and programs is also evident. The editors assume the role of guides, sharing their own wisdom and viewpoints in their commentaries and introductions. Each chapter pursues a theme of enduring importance to the field. Articles were selected to develop and illustrate each theme and provide a deepened understanding of that aspect of professional practice. The selected

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bibliography of references and additional readings from this journal and other sources enriches the educational and historic perspective. The themes of Social Work in Health Care: A Handbook for Practice are major strands in the intertwined network of educational, policy, practice, and research issues integral to social work’s expanding role in health care. The frequency with which articles on particularly critical topics have been included in the journal comments on the characteristics of health care practice in the past decade. The editors selected those articles that represent a high level of scholarship along with creative diversity of multiple approaches to health care social work practice. The first eleven volumes of Social Work in Health Care contain many more outstanding works than could have been included in this compendium. Five years before the journal began, Bess Dana (1969) wrote on the significance of “interprofessional interdependence.” With such an approach the journal has published articles written by or in collaboration with colleagues from other disciplines, including cross-professional responses to published articles. This aspect of the journal and of this time period is recaptured in Social Work in Health Care: A Handbook for Practice which includes several articles coauthored by colleagues in health professions other than social work. Social work authors tend to conceptualize their work in relation to special populations of patients, their particular service needs, optimal intervention strategies, and the special sites where services are provided. The prevalence of articles 26

focused on programs fashioned in response to the specific needs of special populations reflects the trend toward specialization always present in this field of practice but seemingly more apparent in the recent past. It raises the longtime issue of what is generic and what is specialty practice, which has always presented dilemmas for social work education. These articles show the health care social worker continuing to learn a core of transferable knowledge and skills for practice in an ever-changing field. Principles articulated for one population are quite widely transferable to many other populations and contexts. We hope to stimulate this process with these readings. Kay W. Davidson Sylvia S. Clarke

Reference Dana, Bess. “A Proposed Learning-Teaching Model for Undergraduate Medical Education in Comprehensive Patient Care Management,” The Milbank Memorial Fund Quarterly 47:4, October 1969, Part I, pp. 357-409.

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Part 1 Health Care Social Work: History and Contemporary Issues

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Introduction Major social and organizational influences have had marked impact on health care social work practice during the period of this journal’s publication: the expansion of health care as an industry; the sustained professional dominance of physicians; the growth of new health professions; the competition for patient care functions among professionals; the rapid advances in medical technology; and the dramatic development of cost-control mechanisms and accountability systems. The impact of these forces was powerful. They are best identified and understood in current contexts as well as in the perspective of past events. The articles selected for this chapter highlight now, as they did when written, the significance for current practice of lessons to be learned from our history. They make vivid the interaction of forces that influence professional development; and they emphasize the patterns and challenges of history that have and will continue to shape current and future practice. Nacman’s article provides a comprehensive review of the growth and development of social work in health settings as perceived in 1977, when social workers were being challenged to develop accountability systems and to redefine their professional mission in health care. Nacman helps us understand the impact of current issues, examines ways in which social workers have expanded their “therapeutic

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repertoires,” and offers a baseline for assessing later developments. Through her review of the origin and state-of-the-art of social work participation in medical education, Reynolds provides us with a historical perspective and overview of professional development of social work in health settings. She focuses on the contribution of social workers to both formal and informal medical education, highlighting the expanding role of social workers in health care and the enrichment of interdisciplinary teamwork. Clarke’s article was written as a tribute to Hyman J. Weiner, a theoretician and educator who had a broad, profound, and enduring influence on the profession and its practitioners. Clarke reviews the legacy of Weiner’s perspective on systems, milieu, and public health approaches, and their applicability to current and future social work practice. A growing emphasis on research and systematic study of practice have contributed to a firmer knowledge base, to reconsideration of theories and concepts, and to the creation of new service delivery programs and monitoring systems. Throughout the years of the journal’s publication, a steady movement can be noted away from acceptance of social work roles and functions that relied on problem identification and referral of patients by others toward the institutionalization of population approaches where professional social workers themselves identify the patients who require their services. Two articles provide an overview of function. Germain describes a broad approach to social work practice: this includes multiple targets for intervention by social workers as 30

they help clients cope with the stresses and changes in life style created by ill health through strengthening the potential supports within the health setting, the social network, and the inner resources of the client. As Falck assesses social work functions in health settings, he emphasizes the social nature of this practice and the need for practitioners to attain professional autonomy in the delivery of their services. All of the authors cited consider how and in what ways external, organizational, as well as internal forces within the field itself influence theory and practice. They trace the roots of health care social work and evaluate its roles.

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Social Work Settings: A Review

in Health Historical

Martin Nacman, DSW At The time of writing Dr. Nacman was Director, Social Work Division,Strong Memorial Hospital, 260 Crittenden Boulevard, Rochester, NY 14642. This article was adapted from a presentation made at the fiftieth anniversary celebration of the Social Work Division of the Strong Memorial Hospital, February 26–27, 1976. SUMMARY. A retrospective account of the beginnings of social work in health care gives perspective to current concerns, challenges, mandates, prospects, and problems faced by health care practitioners and administrators.

Creation of Hospitals During the early period of the settlement of this country, those who were sick were cared for at home. Temporary facilities were built, primarily in seaport towns, to confine those with contagious diseases during epidemics. The forerunner of the hospital as a community institution was the almshouse. Established for the containment of the destitute, the sick, orphans, criminals, and the mentally ill, many who entered were ill, and those who entered healthy were exposed 32

to contagious diseases. In 1713 in Philadelphia, William Penn founded the first almshouse. In 1736 Bellevue Hospital was established as an almshouse in New York for the “poor aged, insane and disreputable.” Saint John’s Hospital, founded in New Orleans in 1737 as an almshouse, also accepted some paying patients. In 1815 a separate unit for children was established. This almshouse later became the County Hospital of New Orleans.1 By the middle of the eighteenth century, services for the sick were beginning to be separated from the almshouse. Middle-class urban Americans wanted better care and were willing to pay for services. This led to the construction of voluntary hospitals which were generally started with the help of philanthropic gifts. Eleven hospitals were founded between 1751 and 1840. Benjamin Franklin, in his autobiography, recalled that in 1751 a friend of his, Dr. Thomas Bond, conceived the idea of establishing a hospital in Philadelphia “for the reception and cure of poor sick persons, whether inhabitants of the province or strangers.” Franklin not only subscribed to the project himself but procured subscriptions from others and promoted a bill through the Assembly in support of this proposition.2 During the Revolutionary War, New York Hospital, founded as a Revolutionary War military hospital, was the first hospital to provide systematized instruction to medical students. Massachusetts General Hospital was opened in 1821, funded more by the state than private philanthropy. The Georgia Infirmary, founded in 1832 in Savannah, and the Lincoln Hospital, founded in 1840 in New York City, served aged and disabled blacks.3

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By 1840 some hospitals had become specialized and provided care for certain populations or for particular diseases. But the almshouse, in which conditions were appalling, continued to be tin primary care facility for the poor. To save the “deserving” poor from the almshouse and to emphasize moral aid over material relief, Robert M. Hartley, in 1841, founded the New York Association for Improving the Condition of the Poor. The movement of children from the almshouses to orphanages and foster homes was pioneered through the New York Children’s Aid Society founded in 1853 by Charles Loring Brace.4 Also in 1841, Dorothea Lynde Dix started to crusade for reforms in the treatment of the insane. Her efforts resulted in new and improved facilities for the insane in many states. She persuaded Congress to pass a bill that would have granted public lands to the states on which to locate facilities for the insane, but the bill was vetoed by President Pierce. This action was used as precedent for denying social welfare aid to the states until the 1930s.5 The expansion of industrialization and urbanization following the Civil War added to the growth of poverty and slums. To cope with these problems organizations opposing public relief but providing individual assistance to “deserving” applicants were set up; a State Board of Charities and Corrections in Massachusetts was established in 1863, and by 1867 similar bonds existed in sixteen of the thirty-six states. In addition, the Charity Organization came into being, and by 1877 programs were operating in ninety-two cities.

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The Emergence of the Professional Worker The ancestry of the contemporary medical social worker may be traced to England where in 1875 Charles Loch was chosen as secretary of the London Charity Organization Society (LCOS). Loch worked with medical practitioners to foster referrals of patients from hospitals and clinics to branch offices of the LCOS for investigation. In 1891 when he testified before the Select Committee appointed by the House of Lords, he suggested that hospitals were operating for the convenience of doctors and not as needed by the community. But it was not until 1895 that the Royal Free Hospital in London agreed to a three-month demonstration of the use of an “almoner.” The LCOS loaned a staff member for the demonstration. Although the demonstration was considered successful, the hospital did not institutionalize the program, and the almoner was withdrawn. The almoner was later returned when two physicians agreed to match funds provided by the LCOS. Within the next decade seven other hospitals appointed almoners.6 Ida Cannon identified Dr. Elizabeth Blackwell as the forerunner of the development of social work for the sick in the United States.7 In 1853 Dr. Blackwell established a dispensary known as the New York Infirmary for Women and Children. In 1866 Dr. Blackwell appointed Dr. Rebecca Cole, a black physician, as “sanitary visitor” for home visiting. Although this appointment was later dropped, in 1890 a gift provided for the employment of a home visitor. In 1874 Dr. Susan Dumock of the New England Hospital reported on volunteer services to deserted wives and 35

unmarried mothers. In 1890 Dr. Dwight Chapin of the New York Postgraduate Hospital secured volunteers to visit children in their homes to report on home conditions and to interpret his instructions to the mother. In 1894 he appointed a female physician to perform this work but later concluded that a trained nurse with “instincts for social service” was needed.8 In 1889 the Johns Hopkins Hospital and University was opened in Baltimore to provide free services to all, regardless of race or religion. Dr. William Osier, chief of that hospital, established a home visiting program in which medical students learned about the living conditions and personal problems of patients. Dr. Charles P. Emerson, a resident physician of the Baltimore Charity Organization Society (COS) organized a “student board” at COS. These students visited the homes of COS clients. Historically the two organizations were closely tied since President Gilman of Johns Hopkins had been instrumental in the creation of the Baltimore COS.9 In 1903 Dr. Richard Cabot, chief of medicine at the Massachusetts General Hospital in Boston, became acquainted with Dr. Emerson’s student program while visiting Johns Hopkins Hospital. Deeply convinced of the importance of social factors, Dr. Cabot set out to introduce a social worker into his clinic. He concluded that a patient’s personal difficulties may prove to be the cause and not the result of that person’s illness. Miss Garnet Isabel Pelton, who had previously completed nursing training, was appointed to the new position. She was to report to the doctors on the domestic and social conditions of patients, to help patients fulfill doctors’ orders, and to provide a linkage between the hospital 36

and community agencies and organizations. In 1906 Ida Cannon succeeded Mrs. Pelton.10 As a result of these efforts, Dr. T. S. Armstrong, the general medical superintendent of Bellevue and Allied Hospitals in New York City, started a similar program. Mary E. Wadley, a former Bellevue and school nurse, was appointed director of that social service program.11 In 1907 a social work program was established at Johns Hopkins Hospital. The first social worker to be employed was Helen B. Pendleton, previously a district secretary in the Charity Organization Society. At that time the wards were controlled by the nurses, and the social worker was not allowed on the wards. Miss Pendleton resigned after eight months, and for four months the social work program was in limbo. From August 1908 to August 1909 Helen S. Wilmer Athey, daughter of one of the hospital trustees and a graduate of the Hopkins Training School for Nurses, was employed in the social work position. Miss Athey had previously worked at COS and at the Henry Street Settlement House in New York City. Margaret S. Brogen, also a graduate of the Hopkins Training School for Nurses, took charge of the program when Miss Athey left the staff. Miss Brogen described the hospital of 1909 as a “small one-story dispensary building with its foul odors, rooms dark and badly ventilated, used by one clinic in the morning and by another in the afternoon, with only one nurse in the whole General Dispensary.”12 She went on to recall that records were sparse and could not be sent with the patient from one unit to another. Records were kept in rooms 37

separate from the patient areas. When records were needed by medical or nursing personnel they had to be obtained through the social worker, who was responsible for their safe return. All free medical care had to be approved by the social worker. Confidentiality was not respected. The social worker shared a room that was also used as a storage area for surgical supplies. Social work was begun in hospital settings in the preprofessional era. Nurses were employed in social work positions because they were familiar with hospital organizations and community resources. The role of the hospital social worker was modeled after that of the “friendly visitor,” sympathetic to the plight of the patients, but paternalistic and moralistic. Caseworkers were at first not concerned with the meaning of their participation in the “transaction of giving and imposing.”13 Briar concludes that two conflicting ideologies were present at that time, one representing the intent to alleviate social ills and the other to use social work to protect against changes in the status quo.14 Grinker et al., in discussing the evaluation of the volunteer charity worker, known as the “friendly visitor,” note that such social and cultural gaps existed between giver and receiver that often both were frustrated. The giver was frustrated because of the lack of appreciation and the absence of expected results, the recipient because of the lack of opportunity for self-expression and the unwillingness to accept the stipulations required in order to receive what was being given.15 By the beginning of the twentieth century it had become apparent that the dispersing of “charity” by “well-meaning individuals” was not working out well. 38

Leaders of the field concluded that workers required training in the understanding of social problems in order to achieve more discrimination in dispersing charitable funds. While the School of Philanthropy was founded in 1898 to provide formal training for the emerging profession, it was not until 1932 that the American Association of Schools of Social Work adopted a specific social work curriculum policy. In 1917 the National Social Workers Exchange was created with specific concern for the establishment of professional standards, the same year Mary Richmond published her book Social Diagnosis.16 This material marked a shift in casework orientation. Richmond’s “Concepts of Social Study and Social Diagnosis” emphasized the need for a systematic study of the patient and careful collection of social data. In 1918 Jarrett offered the opinion that many casework situations involved psychiatric problems.17 In 1922 Richmond redefined casework as being concerned with the conscious development of the individual’s personality as a result of adjustments between the individual and the environment, a definition representing an assimilation of emerging psychiatric principles and dynamics into casework practice.18 Poliak, in his discussion of cultural factors in social work practice, speaks of social work operating “in the house of another profession.”19 Ida Cannon suggests that the ambivalence with which the social work program was approached by hospital authorities at Massachusetts General Hospital was evidenced in the fact that the program was referred to as an “unofficial department” in the hospital’s annual report of 1906. Funds for its support were solicited

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from the personal friends of Dr. Cabot and later from other contributors who heard about the program.20 In 1914 the hospital officially recognized social work activities on the wards, and Ida Cannon was given the title “chief of social services.”21 But not until 1919 was it possible to provide continuity of social work service from outpatient to inpatient unit. On October 14, 1919 the trustees voted to make the Social Services Department an integral part of the hospital. In 1918 in Kansas City the American Association of Medical Social Workers was formed, signifying the nationwide expansion of social work into health settings. In the same year the American College of Surgeons initiated the first National Hospital Standardization Program. In 1920 the American Hospital Association sponsored the first formal survey of hospital social services, making recommendations that led to the formation of a committee on Training for Hospital Social Workers. Antoinette Cannon, the executive secretary of that committee, formulated the original statement of essentials of medical social work and recommended full education for this group. She had been director of social work at the University Hospital in Philadelphia from 1910 to 1921, when she joined the faculty of the New York School of Social Work.22 From 1920 to 1930 social work programs were started in the army, navy, and Veterans Administration. The Federal Emergency Relief Act of 1933 and the Federal Security Act of 1935 created a demand for medical social workers. Social work services were also included as part of the Federal Crippled Children’s Services.

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In 1925 Dr. Faxon, when opening the Strong Memorial Hospital—University of Rochester School of Medicine and Dentistry, also started a social work program under the direction of Mrs. Ruth T. Boretti. Mrs. Boretti was formerly on the staff of Massachusetts General Hospital.23 At the First International Conference of Social Work held in Paris in 1928, Dr. Cabot presented a comprehensive report on medical social services throughout the world.24 In that same year minimum standards for social service departments were included in the standards for hospitals published by the American College of Surgeons.25

The Focus of Social Workers in Health Settings Early social workers were caught up in the antituberculosis effort of the early 1900s. They tried to cope with the psychological problems and negative effects of the patient’s separation from family for prolonged physical rest that was the prescription of the day. The deplorable condition of factories and workshops led workers to assist in studies to identify hazardous working conditions. Social workers also focused on the problem of syphilis during the time when treatment was required for a prolonged period and social taboos were extreme. Another area of concern was the unmarried pregnant woman. While many social workers shared the moralistic attitude of the time toward this group, some pioneered in the development of an instructive program for these women and worked with community agencies to

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expand resources. Another concern was children impaired by polio. Strongly influenced by psychiatric theory, Virginia Robinson in 1930 described the social worker as psychotherapist and the therapeutic relationship as the primary casework tool.26 The Rankian group led by the faculty of the Pennsylvania School of Social Work advocated “relationship therapy.” Although the followers of the diagnostic (Freudian) orientation and those of the functional (Rankian) schools vigorously opposed each other’s views and techniques, in retrospect the dispute was not critical to the future of the profession. During the forties, leaders such as Florence Hollis and Gordon Hamilton elaborated on the psychiatric theme with greater appreciation of family dynamics and the influence of one member on another. The goal of casework was to help educate the client in order for that person to take action that was judged by the social worker as advantageous to the client. As in the earlier days the social worker continued to obtain psychosocial information from the patient and family, but by this time the data were used to establish diagnosis and treatment plans. By the forties psychoanalysis was given considerable status by social workers in all settings. Dynamic formulations replaced the labeling of patients in rigid terms. But social workers were so eager to follow this model that the “essential and nuclear role of the caseworker was sometimes lost to the detriment of the field.” The psychiatrist became the “ego ideal” for many social workers.27 Social, cultural, and environmental factors were 42

considered as secondary to repressed fears and unresolved frustrations. To listen and allow for self-determination was considered productive as a technique for allowing patients to release feelings. This approach was labeled “dynamic passivity.” To some it appeared that the field was doing nothing. In the forties the ultimate aspiration of many psychiatric social workers was to practice “analytically oriented” therapy. Within many general hospitals psychiatric and medical social work programs became divided. Psychiatric social workers proclaimed that their “therapeutic” role was unique. Some were reluctant to be associated with workers assigned to medical-surgical units who, in their opinion, were unsophisticated and engaged only in instrumental tasks. In reality the roles of the social worker in both settings were quite similar. Briar concluded that “the commitment to an essentially psychiatrically oriented casework served to undermine the caseworker’s interest in and ability to contribute to change in the social order.”28 In the postwar era social workers such as Helen Harris Perlman departed from the traditional psychiatric orientation and incorporated social science concepts into casework theory.29 Perlman reoriented the worker to the patient’s role in society and identified society’s contribution to the problems of people. The establishment of the community mental health movement in the fifties also placed greater emphasis on the importance of social and cultural factors in the diagnosis and treatment of psychiatric patients. Social workers trained as community

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organizers were added to some of these programs, and attempts were made to influence social change.30 A factor that fostered change in psychiatric institutions was the introduction of Maxwell Jones’s concept of “milieu therapy.”31 Unfortunately, this concept has been slow to take hold in nonpsychiatric hospital settings. Beginning in the fifties and extending into the sixties, group services also became part of the offerings of the hospital social work program. While this development was most apparent in psychiatric settings, there was expansion for medical-surgical patients as well. In pediatric units staff began to work with groups of hospitalized children, and in specialty clinics both children and parents sharing similar problems, usually related to chronic illness, were treated as a group. In both psychiatric and medical settings family therapy was slowly expanded.32 The fifties represented a period of expansion of casework service into new areas. Tuberculosis and polio were coming under control. Medical care of acute and chronic problems was being infused with the concepts of rehabilitation, particularly for amputees, those with spinal cord injury, and stroke victims. Procedures for heart surgery and transplant surgery were developed, with some recognition of the impact of these procedures on the psychosocial adjustment of patients. Heart disease and cancer were becoming the focal point of national attention. Chemotherapy had been added to the treatment regime of psychiatric patients, and without complete awareness of consequences, we had begun a massive emptying of psychiatric hospitals.

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In the sixties the civil rights and welfare movements emphasized the inequalities that society had produced. We became more aware of the deprivations suffered by some segments of the community and the conspiracy of health and welfare bureaucracies to maintain status quo and control applicants.33 During this period many social workers were reawakened to the union of cause and function that had previously concerned Mary Richmond, Ida Cannon, and others. Was social work contributing to the maintenance of the status quo and the pathologies of society? Was casework encouraging clients to accept “realities” that were destructive and could be changed? Cloward, Kahn, Rein, and others challenged us to look at our practices, to consider an expanded role directed toward influencing social policy and becoming involved in social action.34 As social workers with graduate training came into the field, professional prerogatives were identified. Social workers no longer waited for referrals but more assertively identified patients and families in need. This approach recognized the importance of initiating social work contact early in hospitalization in order to have time to provide adequate services. Greater emphasis was placed on the establishment of continuity of service between inpatient and outpatient services. But the lack of funding for outpatient care often blocked the achievement of continuity. The advent of titles XVIII and XIX of the Social Security Act created even greater demand for social work coverage in hospitals. Medicare (Title XVIII) health insurance for persons over sixty-five years of age brought millions of these individuals into hospitals, and then into extended care facilities. Medicaid (Title XIX) provided medical care for the 45

medically indigent under twenty-one and for the permanently and totally disabled, and medically indigent, between twenty-one and sixty-five. The medically indigent over sixty-five were also covered by Medicaid. Social workers played a vital role in working with these populations.

Where are We Now? Social workers in the seventies practice a variety of therapeutic techniques including behavior modification, transactional therapy, analytic therapy, ego psychology techniques, crises intervention, and various family treatment models. More emphasis is being placed on preventive programs as in genetic counseling, family planning, prenatal counseling, sex counseling, and prehospital orientation programs. Expansion of social work coverage into hospital emergency programs has enabled social workers to triage patients into appropriate health and welfare programs within the hospital or the community. Provision of social work services at the point of crisis has created opportunities for intervention at a time when the situation maximizes the patients’ and/or families’ potential for involvement in a treatment relationship. The social worker’s role as advocate has done much to protect the rights of patients both within the hospital and in referral to services that they are entitled to in the community. The establishment of a Patients’ Bill of Rights has helped to specify what prerogatives patients have within a health setting and what rights the staff must protect. The Patients’ Bill of Rights sanctions the advocacy role of the social worker.

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However, we still have a long way to go in reorganizing the structure and policies of hospitals to protect these rights. Patient and family reactions to complicated procedures such as transplant surgery, combined chemo-radiation therapy, as well as the potential of death or serious physical or mental disability have opened new avenues for social work practice. Whether in the burn or intensive care unit or the oncology or birth defect clinic, the social worker may provide valuable assistance to staff, patients, and families who face difficult problems and decisions about life and death. In the early part of the twentieth century medical leaders of the stature of Dr. Cabot of Massachusetts General Hospital and Dr. Faxon of Strong Memorial Hospital had been deeply concerned about the complexity of the hospital organization and the medical care system. They believed that these systems lacked individualization and failed to provide humane treatment. Both Dr. Cabot and Dr. Faxon looked to social workers for solutions. Today, some fifty years later, these systems have reached a degree of complexity that would stagger our predecessors. However, we face many of the same problems and threats to humane care that confronted Ida Cannon and Ruth Boretti. We have increased our technological knowledge and created new specialties, but we have failed to achieve continuity of care. Our commitment to treatment after the presence of pathology has distracted from the development of preventive programs. Indifference to patients’ psychosocial needs has produced an alienated clientele and the demand for ombudsmen, advocates, and special representatives.

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In many respects the conservative and reactionary attitudes expressed by politicians, medical groups, and other members of the community represent a reversion back to social Darwinism. Historically, social Darwinism was used to buttress attacks on social reform and resulted in blind support of the so-called natural law that the “strongest and best” survive.35 Unfortunately, in the face of rising costs and limited resources, some politicians, physicians, and hospital administrators have begun to look at the health care institutions as if they were production systems handling inanimate objects. Many have forgotten or perhaps never recognized the impact of psychosocial factors as related to the precipitation and exacerbation of illness. The system is beset by dehumanizing factors. It has become a constant struggle to preserve the humanism essential to proper patient care. Rhetoric touts the “total treatment” of patients, but psychosocial interventions are often given low priority in federal and state legislation and the programs of health institutions. Too often hospital and medical administrators discount the importance of these factors and thereby establish a negative role model for politicians and the general community. While the need for more precise accountability in relation to cost and quality of care is long overdue, regressive political and social forces must not diminish the humane achievements of Cabot and Cannon. Social workers may abhor statistics and audits, but more precision in accounting for what we purport to accomplish is essential to the future of our profession and our impact on health care. Although the field of social work has been concerned with quality review for many years, relatively few evaluative programs have been formulated and carried out. With the 48

advent of the Professional Standards Review Organization (PSRO), a program created by federal legislation, hospitals are now required to establish Utilization Review to make explicit the necessity for hospitalization and Medical Audit to determine the quality of hospital care rendered. These developments have accelerated the need for developing a methodology for assessing social work performance. PSRO allows social work to establish peer evaluation of our professional performance. If social work does not develop these protocols, less relevant criteria will be imposed by others. In order to ensure that the criteria established by local PSROs recognize psychosocial influences, social workers must become active in these organizations or form coalitions with other nonmedical practitioners capable of putting pressure on these groups. Another major issue confronting social work is the development of programs for the licensure of social work, a means for assuring at least minimal standards for practice and potential for securing reimbursement for services rendered. In the health arena we are experiencing increasing pressure by insurance companies and government to supply assurance as to the qualifications of nonmedical practitioners. Certification and licensure offers these assurances to payers. The development of a more stringent program by the Academy of Certified Social Workers as has been recently under way offers one possibility for solving this licensure problem. Finally, social work must concern itself with the language of proposed national health insurance programs. Unless the role and function of social workers are explicitly established it may become difficult to receive payment for social work services rendered within health organizations and in private 49

practice. Thus far, proposed legislation is either vague or silent about social work.

Conclusions In spite of the initial resistance to the inclusion of social workers as members of the hospital team in the early 1900s, social work has made enormous progress during the intervening years. Social workers have helped to break down barriers that separated the physical aspects of patient care from psychosocial factors. Social workers have gained access to the political forces that determine hospital policy and have helped to modify programs and policies so that they reflect the needs and rights of patients. Supported by the policy of the National Association of Social Workers, hospital social workers have advocated on behalf of patients and their families. They have assertively challenged the restrictive practices of community organizations that have limited continuity of care. They have helped their patients obtain services to which they are entitled. The late sixties and early seventies have represented periods in which social workers in health settings have ventured into new programs and have expanded the scope of their operations. They have moved into new areas of health care. They have joined research teams and have engaged in research of their own.36 They have protested inequities. They have challenged abuses. They have helped create more responsive environments. Social workers have expanded their therapeutic repertoires.

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Fiscal problems of federal, state, and local governments will have their impact on the profession. Rising hospital deficits will dictate the availability of funds to support social work staff just as they will have their impact on other staff. Nevertheless, the pressure being placed on hospitals to create effective discharge programs and to justify the reasons for continued stay should increase medical and administrative reliance on social work practice. Although discharge planning is by no means the only area of social work proficiency, it represents an important contribution to the patient’s welfare and the hospital program. It is an area requiring sensitive therapeutic techniques. It often requires a strong advocacy role in order to facilitate the completion of adequate discharge plans. Casework treatment is an integral part of this process. Consumer pressure, the need to maintain high bed occupancy, and increased litigation are pressing hospital administrations to create programs that are capable of increasing patient satisfaction. Patient satisfaction is linked to patient knowledge, patient understanding, as well as the preservation of patients’ rights. These are areas in which social work staff can make positive contributions.

Note Reprinted from Social Work in Health Care, Volume 2(4), Summer 1977.

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References 1. O’Connor, Rubin. “American Hospitals: The First 200 Years,” Hospitals, Journal of the American Hospital Association 50 (January 1, 1976):62-72. 2. Soifer, Margaret Κ., ed. The Autobiography of Benjamin Franklin (New York: Macmillan Co., 1967), pp. 132-34. 3. O’Connor, “American Hospitals.” 4. Brace, Charles Loring. The Children’s Aid Society of New York (New York: CAS, 1893). 5. Encyclopedia of Social Work, Dorothea Lynde Dix, pp. 254-56. 6. 6. Astbury, B. E. “Hospital Almonry: How It All Began,” The Almoner 1, no. 6 (September, 1948). 7. Cannon, Ida M. On the Social Frontier of Medicine (Cambridge: Harvard University Press, 1952). 8. Ibid., p. 273. 9. Ibid., pp. 30-33. 10. Ibid., pp. 48-49. 11. Ibid., pp. 49-50.

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12. Brogen, Margaret S. “The Johns Hopkins Hospital Department of Social Service, 1907-1931,” Social Service Review 39 (March 1964):88-98. 13. Grinker, Roy R. et al. “The Early Years of Psychiatric Social Work,” Social Service Review 35, no. 2 (June 1961):111-26. 14. Briar, Scott. “Social Case Work and Social Group Work: Historical Foundations,” Encyclopedia of Social Work 11, no. 16(1971): 1237-45. 15. Grinker et al., “Early Years of Psychiatric Social Work.” 16. Richmond, Mary E. Social Diagnosis (New York: Russell Sage Foundation, 1922). 17. Jarrett, Mary. “The Psychiatric Thread Running through All Social Case Work” (Proceedings of National Conference of Social Work, Chicago, 1919), pp. 587-93. 18. Richmond, Mary E. What Is Social Case Work? An Introductory Description (New York: Russell Sage Foundation, 1922). 19. Poliak, Otto. “Cultural Factors in Medical Social Work Practice,” Journal of the Amencan Association of Medical Social Workers 3 (July 1954):81-152. 20. Cannon, Social Frontier of Medicine, pp. 64-66. 21. Ibid., p. 88.

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22. Encyclopedia of Social Work, Mary Antoinette Cannon (1884-1962), vol. 1 (National Association of Social Workers, 1971), pp. 91-92. 23. The Quarter Century, 1925-1950 (Rochester: University of Rochester, 1950), pp. 32-33. 24. Cabot, Richard C. “Hospital and Dispensary Social Work,” Hospital Social Service 17 (1928):269-320. 25. The Quarter Century, 1925-1950 (Rochester: University of Rochester, 1950), pp. 32-33. 26. Robinson, Virginia P. A Changing Psychology in Social Work (Chapel Hill: University of North Carolina Press, 1930). 27. Grinker et al., “Early Years of Psychiatric Social Work.” 28. Briar, “Social Case Work.” 29. Perlman, Helen Harris. “Social Components of Case Work Practice,” in The Social Welfare Forum (New York: Columbia University Press, 1953), p. 12. 30. National Commission on Community Health Services, Health Is a Community Affair (Cambridge: Harvard University Press, 1966). 31. Jones, Maxwell. The Therapeutic Community (New York: Basic Books, 1953).

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32. Ackerman, Nathan W. The Psychodynamics of Family Life: Diagnosis and Treatment of Family Relationships (New York: Basic Books, 1958). 33. Cloward, Richard A. & Piven, Frances F., “The Professional Bureaucracies: Benefit Systems as influence Systems,” in Community Organization Practice ed. Ralph W. Kramer and Harry Specht (Englewood Cliffs, N.J.: Prcntice-Hall, 1969), pp. 359-72. 34. Ibid.; Kahn, Alfred, Issues in American Social Work (New York: Columbia University Press, 1959); Martin Rein, “Social Work in Search of a Radical Profession,” Social Work Journal 12, no. 2 (April 1970):13-29. 35. Hofstadter, Richard. Social Darwinism in American Thought (Boston: Beacon Press, 1962), pp. 13-66. 36. Phillippus, M.J., & Nacman, M. “A Psychosocial and Vocational Follow-up Study of Previously Hospitalized Asthmatic Patients,” Psychotherapy and Psychosomatics 14 (1966):171-79; Helen Rehr, “Quality and Quantity Assurance: Issues for Social Services in Health” (Proceedings of Quality Assurance in Social Services in Health Programs, Pittsburgh, March 31-April 4, 1975).

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The Role of Social Workers in Medical Education: A Historical Perspective Mildred M. Reynolds, LCSW At the time of writing Mrs. Reynolds was Adjunct Assistant Professor of Psychiatry and Behavioral Sciences (Social Work) and Chief, Psychiatric Social Work, George Washington University Medical Center, 2150 Pennsylvania Avenue, N.W., Washington, D.C. 20037. SUMMARY. Although the number of social workers participating in medical education is increasing, there is a need to review and evaluate their roles in such educational activities. Information is needed about how social workers participate in medical education in order to plan how to make a more effective contribution. This article describes how the rote of social workers in medical education evolved, and gives examples of what social workers have done in the past and are doing today. A recent study showed that 595 social workers held primary faculty appointments in accredited medical schools as of July 1975. In the articles reporting their findings, Grinnell and his associates present information on the number, characteristics, and status of these social workers (Grinnell et al., 1976; Grinnell, Kyte, Hunter, & Larson, 1976). Although the

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number of social workers involved in medical education is increasing, and many participate in medical education without the formal recognition of a faculty appointment, there is relatively little recent literature about what they are doing. Such information is needed in order to assess their role and plan how to function more effectively in the future. Innovation requires knowledge not only of what is being done now but also of what has been done in the past. This paper presents the ways in which social workers have carried this function so that innovations can be developed on the base of successful programs and methods of the past.

Social and Environmental Factors The role that social workers have played in medical education cannot be adequately portrayed without consideration of some of the developments in medical practice that led to their involvement. Social workers have traditionally been concerned about the influence of social and environmental factors on the lives of people and have worked with them in their homes, communities, and agencies. Over a century ago some physicians who shared this concern began to relate social and environmental factors to the health, illness, and treatment of their patients. This led to the concept that the way in which a patient expresses his symptoms, the manner in which he is treated, and the way in which he responds to treatment are directly influenced by social and environmental factors; therefore it is important to understand them.

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Physicians Pioneer In the 1860s some women physicians, who made home visits as part of both patient care and training of doctors and nurses, pioneered in the area of relating social and environmental factors to illness. Dr. Elizabeth Blackwell, of the New York Infirmary for Women and Children, was one of the first to make home visits with her students. An annual report for 1865 indicated that 334 patients of the infirmary were visited in their homes. Dr. Marie Zakrzewska, who trained under Dr. Blackwell, emphasized the value to medical students of home visits in learning how the poor actually live and how poor food and sanitation can have far-reaching effects on health. Dr. Rebecca Cole, one of the first black physicians, was appointed in 1866 as “sanitary visitor” (Cannon, 1952, pp. 24-27). She made home visits and worked with families, acting as both physician and social worker. Elsewhere, other physicians, recognizing the value of seeing and learning firsthand the conditions in which their patients were living, began to consider how to train physicians to be more aware of the way social and environmental factors influence illness. Drs. William Osier and William Welch promoted the concept at Johns Hopkins University in the 1890s by assigning two 3rd-year medical students to investigate the home conditions of consumptive outpatients to see what factors might be hindering their recovery. In 1903 some Johns Hopkins medical students volunteered their services to the Baltimore Charity Organization Society. The society’s social work staff selected families for the students to visit and discussed the families’ problems with the students afterward (Joint Committee, 1948, p. v).

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Dr. Richard C. Cabot (1919), working with outpatients at Massachusetts General Hospital, was concerned about not being able to give patients the attention they needed. He estimated that of 500 patients seen, at least 50 were disabled because of psychosocial problems. He concluded that treatment in more than half of his cases required understanding of the patient’s background and “all that had brought him to his present condition in which sickness, fear, worry and poverty were found inextricably mingled” (p. xxiv). Since Dr. Cabot did not have time to gather the information needed, he sought funds for a social worker and in 1905 hired Garnet Isabel Pelton to work with patients and their families in both the clinic and their homes. A year later he added to his staff Ida M. Cannon, who trained as both a nurse and a social worker. Her development of the Social Services Department at Massachusetts General Hospital was the beginning of organized medical social work. Dr. Cabot wrote of his concern about cases of nervousness, hysteria, morbid fears, fixed ideas, and insomnia. He believed that such patients needed attention, not only of doctors, but of social workers. He shared these views with Dr. James J. Putnam, chief of Massachusetts General’s Neurological Service. In 1907 Dr. Putnam hired a social worker, Edna Burleigh, to work with the aftercare program of discharged mental patients (Cannon, 1952, pp. 77-78).

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Social Workers Education

Enter

Medical

As medical educators became more aware of the contribution social workers could make to the understanding of how social and environmental factors influence illness and patient care, they asked them to supervise the home visits made by medical students and to participate in case presentations and rounds. Dr. Charles P. Emerson, while dean of the Indiana University School of Medicine, emphasized the social aspects of the patient’s life. In 1911 he asked Edna G. Henry to collaborate in a medical-social teaching program. Miss Henry supervised the home visits made by the medical students in the preparation of their case studies. Dr. Emerson viewed the Social Services Department as being able to contribute significantly to medical education. He said, “If the Social Service Department helps one patient, then one patient has been helped; but if this Department teaches one medical student how best to help the patient, then it has indirectly helped many of the patients whom this student may later treat…. And an even more important function is that it will train the medical students to be more valuable members of boards of health of various cities and towns and leaders in all civic movements for better social conditions” (cited in Bartlett, 1939, pp. ix-x). In 1913, social workers began participating in case presentations when Dr. David L. Edsall, professor of clinical medicine at Harvard, asked Ida M. Cannon, then chief of the Social Services Department at Massachusetts General Hospital, to assist in teaching the social aspects of disease. As physicians lectured about diseases such as tuberculosis, heart 60

disease, and alcoholism, social workers presented illustrative cases (Bartlett, 1939, pp. ix-x). Thereafter, the case presentation method of teaching was used with increasing frequency. In 1928, social workers began to participate in rounds at Beth Israel Hospital in Boston. “Medical Social Ward Rounds” were conducted each week by Medical residents and medical social workers for the purpose of teaching interns about the social component of medicine. The senior intern presented social data from interviews with patients, and the social worker shared knowledge that she had gained from interviews with the family, school, and community agencies. As the social worker and intern worked together, they began to understand and accept each other better and to appreciate the contribution each could make to the study and care of the sick (Derow & Cohen, 1933).

Surveys of Medical-Social Teaching Recognizing the need to stimulate social awareness in medical students, the American Association of Medical Social Workers appointed a committee to study the extent to which social workers were participating in medical education and what they were doing. In 1939 the association issued a 10-year report entitled The Participation of Social Workers in Teaching Medical Students. A joint committee of the American Association of Medical Social Workers and the Association of American Medical Colleges was established in 1943 to study medical-social teaching. A study team spent several days at each of 13 medical schools observing teaching and conferring with the faculty, housestaff, and students.

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Their findings are reported in Widening Horizons in Medical Education (Joint Committee, 1948). The study team found an excellent example of the integration of medical-social teaching and practice at Beth Israel Hospital in Boston. The entire staff, from the Chief on down, seemed to have an unusually high degree of social awareness. This was attributed to a program based on the concept of caring for the whole patient. Instructors correlated the medical aspect of disease with an interpretation of the significance of the disease and its treatment in the life of the patient. The program was developed by Ethel Cohen, Director of Social Services, in collaboration with the Chiefs of the Medical and Surgical Services. Dr. Harry Linenthal was credited with evaluating instruction about social and environmental factors to a status of equality with instruction about physical diagnosis. At Yale the Social Service Department played a very active part in the guidance of medical students in the preparation of their case studies. In pediatrics, where students were instructed in the social and environmental aspects of medicine and the behavior problems of children, a social worker participated in the discussion of problems at weekly medical-social rounds. Dr. William W. Frye of the Department of Pediatrics and Gynecology developed a home delivery service in which he, assisted by a social worker and a nurse, taught the social aspects of obstetrical care. At the Stanford University School of Medicine, the Departments of Medical Social Service and of Public Health and Preventive Medicine collaborated in a course called, “The Patient and His Environment.” Social workers helped select 62

the patients, guided the home visits and consulted throughout the study. The team which conducted the survey on medical-social teaching concluded that social workers had made a significant contribution to medical education by discussing social and environmental problems at rounds and in making case presentations, but that perhaps the most valuable contribution was the direction given the students in the preparation of their case studies. Through frequent, informal discussions the social worker helped the student plan the case study, supervised the home visit, and helped the student examine the social information gathered and evaluate its significance for the patient, (pp. 27, 127, 41)

Expansion of Medical and Social Teaching Social workers’ involvement in medical education expanded in the 1940s and 1950s as they began working with family advisory projects and in training psychiatry residents. In 1949 the University of Pennsylvania Medical School began offering a “Family Health Advisor” course. Although an elective for 1st-year medical students, it continued throughout the 4 years. The director of social service collaborated with the dean of the medical school in the selection of the students, staff social workers selected the families and coordinated the program, and one social worker was on every faculty team that taught and supervised the students (Steel, 1955).

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The contribution that psychiatric social workers could make to teaching in psychiatry was highlighted at a conference in 1950 sponsored by the American Association of Psychiatric Social Workers and the National Committee on Social Work Teaching in Medical Schools. Dr. Bernard Bandler, a psychiatrist, reported that in 1944 a social worker was appointed full-time to the Harvard teaching unit at the Boston Psychopathic Hospital. The social worker participated in the selection and assignment of cases for medical students and in their instruction, taught techniques of making home visits, and discussed with the students the data they had gathered. The social worker helped the students plan and implement a disposition or continued treatment of the patients when the students left. Similar work was done with residents (“Social Work Teaching,” 1951). In 1948 the National Institute of Mental Health gave recognition to the importance of the correlation of social factors and illness and to the contribution social workers could make by granting funds to hire a social worker for the Division of Neuropsychiatry at the Howard University College of Medicine. The social worker, Rose C. Thomas (1952), participated in all aspects of the psychiatric training of the medical students. In the 1950s, social workers became more involved in program planning, small-group teaching, and comprehensive care. When Case Western Reserve University launched a new program of medical education in 1952, one of its stated principles was that the teaching should be done by faculty members who represented a variety of interests and departments. Accordingly, Dorothea Checkering, a social worker, was placed in charge of social and environmental 64

studies, and other social workers were preceptors for the medical students (Harper, 1953). At the University of Pennsylvania’s School of Medicine, Margaret Heyman, associate professor of psychiatric social work, was involved in planning, organizing, and conducting the psychiatric aspect of a course, “Introduction to Clinical Clerkship,” first offered in 1951. Social workers participated in small-group teaching of interviewing techniques and history taking. A social worker was coleader with psychiatrists for each of their nine small-group sections (Appel & Heyman, 1954). Social workers have been active in programs teaching comprehensive care. In 1951 the New York Hospital-Cornell Medical Center established a Comprehensive Care and Teaching Program to teach the application of comprehensive care principles to 4th-year medical students. The hospital’s director of social service served on the interdisciplinary committee that planned the program. A “social service coordinator” assumed responsibility for the selection of cases and liaison with community resources (Ullmann, 1959).

More Recent Developments In the last 2 decades social workers have expanded their role as a result of new types of programs, increased emphasis on comprehensive care and gerontology, and the interdisciplinary team approach. The importance of understanding the social and psychological problems of patients was demonstrated in research by the California Division of the American Cancer Society in 1962. The study

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found that “patients frequently fail to follow medical recommendations because of social and emotional reasons.” In an effort to learn how this failure might be minimized, the Cancer Society funded a “Summer Social Assistantship” at Stanford University’s School of Medicine for selected medical students. Four students worked with cancer patients under a social work preceptor 40 hours weekly for 10 weeks. They studied the psychosocial care of cancer patients and helped them find ways of coping with their psychosocial problems. The importance of the interview as a means of gathering social information and of providing support was stressed. The medical students developed interviewing skills: first, as they observed their social work preceptor conduct an interview; next, as they interviewed with the preceptor; and finally, as they interviewed alone (McGann & Lutzker, 1975). Bracht(1969) described the participation of social workers in a multidisciplinary, comprehensive care program of the Department of Community Medicine at the University of Kentucky. Developed in 1960, the program was required of all senior medical students. It included a 6-week field clerkship involving study of health services in a typical community. Social workers were involved from the beginning of the program and were appointed to the faculty. One social worker conducted a seminar on research interview techniques, and another conducted a seminar with a medical anthropologist on community survey techniques. Social workers who were faculty advisers for the project on epidemiology made site visits where they advised about services and resources available to aid in the provision of comprehensive health care. The authors considered that the project demonstrated that the

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fields of community medicine and social work not only need to work collaboratively but can do so effectively. Ullmann (1976) described an elective, “Stress of Illness and Hospitalization,” offered to 1st-year medical students at the New York Hospital-Cornell Medical Center in 1972. Students were assigned to patients treated by social workers for their difficulty in coping with illness. Social workers taught the course, selected the patients, and supervised the students. As medical educators increasingly recognized the need for interdisciplinary knowledge and skills and their application in teamwork, social workers became involved in teamwork in various ways. They became members of interdisciplinary clinical, teaching, and consulting teams. Tanner and Carmichael (1970) described the interdisciplinary teaching instituted in 1965 in the training program for family practice at the University of Miami’s Division of Family Medicine where a social worker was a member of the health team and of the faculty. Social workers participated in teaching, policymaking, curriculum development, consultation, and research. In 1970-1971 the interdisciplinary concept was extended to having an interdisciplinary faculty team teaching an interdisciplinary student team. A pilot project was developed that provided for 10 student health teams, each composed of medical, nursing, and social work students (Tanner, Linn, & Carmichael, 1972). Each student team was supervised closely by a faculty preceptor team comprised of members of the same three disciplines. The project demonstrated that interdisciplinary learning experiences could positively affect the behavior of students.

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An interdisciplinary consulting team was developed at the San Francisco Veterans Administration Hospital. A social worker served with a physician, a psychologist, and a nurse on a team that provided psychosocial consultations. A member of the team was assigned as primary consultant to each case by a committee comprised of senior staff from each of the four disciplines. Interdisciplinary teaching and communication increased as each discipline chaired case conferences (Kaltreider et al., 1974). Social workers elsewhere taught informally as they served on interdisciplinary clinical teams. Sachs, Henderson, and Beilis (1968) described social workers’ participation in training residents in psychiatry at the Yale-New Haven Hospital Psychiatric Clinic. The team was comprised of a staff psychiatrist, an experienced social worker, and four residents. The social worker was a member of the teaching staff and of the clinical team. The authors concluded that although the training of residents in psychiatry is primarily the responsibility of senior psychiatrists, social workers who participate in such a treatment program can make a significant contribution. They provide the residents with an interdisciplinary experience by demonstrating a psychosocial approach to working with patients and families and by providing information about various resources for meeting the patients’ needs. Graham and Miller (1974) reported that social workers were a part of the medical education staff in the Department of Psychiatry at Cleveland Metropolitan General Hospital. They supervised medical students’ outpatient work which included a psychodynamic evaluation and short-term treatment or other disposition. The authors found that although some medical 68

students expressed disappointment initially in not having a medical supervisor, most indicated in their final evaluation that the social work supervision had been both helpful and effective. In the outpatient psychiatric clinic of the George Washington University Medical Center an interdisciplinary team approach is used. A team, comprised of a staff psychiatrist, a certified social worker, and a 2nd-year resident in psychiatry, is assigned to each day. Others who may be assigned to teams include a 2nd-year graduate social work student, a psychology doctoral candidate, and 3rd-year medical students on their 2-month clinical rotation in psychiatry. The medical students alternate working with the resident and the social worker and are supervised by each on different cases. The work of social workers on the psychiatric ward at the George Washington University Medical Center is similar to the work described earlier by Shively and Phillips (1963) at Eastern Pennsylvania Psychiatric Institute. The casework services at Eastern Psychiatric were developed with a dual focus on services to patients and their families and the training of psychiatric residents in a family-oriented approach to patient care. Likewise, at George Washington the social workers assume responsibility for assessing the family’s psychosocial needs. If treatment is needed, it is done jointly with the resident who is the patient’s therapist. At first the resident may observe the social worker’s techniques but participates increasingly as he acquires skill in working with families.

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One social worker, who is coordinator of education in George Washington’s Department of Psychiatry, works primarily with the psychiatric training program in undergraduate medical education. She plans the content, develops the course outline, recruits the faculty, and organizes the clinical interviewing component of the 2nd-year clinical assessment course for medical students, nurse practitioners, and physician’s assistant students. In addition, she assumes responsibility for the Preventive Psychiatry and Liaison section of the group clinical clerkship for third-year students. Another social worker is the coordinator of the therapy program which provides training in group psychotherapy for residents in psychiatry and others. A social worker is engaged in program development in the field of aging for George Washington University’s School of Medicine and Health Sciences. She has developed a multidisciplinary gerontology program to introduce or to improve gerontological content and geriatric care activities in the various educational programs in the medical school and throughout the university. The social worker, as project director, assumes major responsibility for development and implementation of the program. The importance of collaboration between social workers and psychiatrists has been recognized by the Liaison Committee on Graduate Medical Education. Its “Essentials of Accredited Residencies” states that a significant amount of the work of the resident in psychiatry must include collaboration with social workers, psychologists, nurses, and other mental health personnel (Directory of Accredited Residencies, 1976).

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Social Workers as Faculty Acceptance of the professionally educated social worker has varied among medical schools. Some schools have given official recognition to the teaching of social workers by giving them faculty appointments and by providing for them in their budgets. Vernon W. Lippard (1955), when president of the Association of American Medical Colleges, wrote over 2 decades ago that the social worker had been accepted as a member of the team caring for patients and had been recognized by appointment to the faculty in most medical schools. The Committee on Medical Education of the Group for the Advancement of Psychiatry surveyed teaching in departments of psychiatry in 1960. It found that social workers were the second largest group of nonmedical professionals teaching preclinical students (Pre-Clinical Teaching, 1962, p. 29). A survey of medical schools in 1966 revealed that in 72% of the 81 schools that responded, 241 social workers taught medical students, residents, and nursing students (“Medical Schools,” 1968). The medical schools that were without social workers indicated that they were considering adding them to their faculty. In 1969 the Mount Sinai School of Medicine recognized the contribution of social workers to medical education by appointing a social worker to its Chair of Community Medicine—Social Work (Phillips, 1971, p. 568). Despite the fact that social workers have been participating in medical education for many years and the Grinnell et al. (1976, p. 154) study found 595 social workers with primary

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faculty appointments in 1975, 26 of the 116 medical schools surveyed did not indicate that they had social workers in “primary” faculty positions. Presumably, some of them were new schools that had not yet reached that point in their organization. It should also be recognized that undoubtedly the number of social workers who hold “primary” faculty appointments is far less than the number who actually function in an educational capacity.

Conclusions Social workers’ participation in medical education did not begin in any planned and formalized way, but as medical educators turned to social workers for assistance with teaching. As a result, social workers have participated in a variety of ways. In this review of the literature, it was found that social workers selected patients for medical students’ case studies and for family health advisory and comprehensive care projects. They also supervised home visits, directed case studies, and served as consultants or preceptors. They taught informally as they presented social information at rounds and case conferences. They lectured, did small-group teaching, and interdisciplinary team teaching and consulting. Social workers have assumed responsibility for and have been involved in planning, organizing, and conducting courses that have social and environmental content and that teach interviewing, history taking, and work with families. They have been involved in the education of medical students, residents, interns, physicians’ assistants, and a number of nonmedical professions.

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This description of the participation of social workers in medical education could include only a small portion of what has been done. Examples were selected to illustrate the different ways in which social workers have functioned. Additional accounts of new ways and new areas in which social workers are participating, as well as a more detailed study of what is now being done, are needed. As Abraham Lincoln stated at the Illinois State Republican Convention at Springfield in June 1858, “If we could first know where we are and whither we are tending, we could then better judge what to do and how to do it.” This paper has attempted to shed some light on where we have been and where we are. Next we need to assess more thoroughly where we are and “whither we are tending” so that we may better judge “what to do and how to do it.” May educators from the fields of medicine and social work join forces in this task!

Note Reprinted from Social Work in Health Care, Volume 3(2), Winter 1977.

References Appel, Κ., & Heyman, M. The psychiatric social worker as an aid to group process teaching. Journal of Medical Education, 1954, 29, 38-44.

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Bartlett, Η. M. The participation of medical social workers in the teaching of medical students. Chicago: American Association of Medical Social Workers, 1939. Bracht, N. F. The combination of public health social work in academic departments of community medicine. Milbank Memorial Fund Quarterly, 1969, 47, 73-89. Cabot, R. C. Social work: Essays on the meeting-ground of doctor and social worker. Boston: Houghton Mifflin, 1919. Cannon, I. M. On the social frontier of medicine. Cambridge: Harvard University Press, 1952. Derow, H., & Cohen, E. The training of interns in the social aspects of medicine. New England Journal of Medicine, 1933, 209, 827-831. Directory of accredited residencies, 1975-1976; Chicago: American Medical Association, 1976. Graham, N., & Miller, I. The social worker in undergraduate education. International Journal of Psychiatry, 1974, 20, 265-268. Grinnell, R. M., et al. Social workers teaching in medical schools. Health and Social Work, 1976, /, 152-165. Grinnell, R. M., Kyte, N. S., Hunter, S., & Larson, T. A. The status of graduate-level social workers teaching in medical schools. Social Work in Health Care, 1976, 1(3), 317-324.

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Harper, E. An experiment in medical education. Journal of Psychiatric Social Work, 1953, 22-23, 18-25. Joint Committee of the Association of American Medical Colleges and the American Association of Medical Social Workers. Widening horizons in medical education: A study of the teaching of social and environmental factors in medicine. New York: Commonwealth Fund, 1948. Kaltreider, N. B., et al. The integration of psychosocial care in a general hospital: Development of an interdisciplinary consultation program. International Journal of Psychiatry in Medicine, Spring 1974, 5, 125-133. Lippard, V. W. Foreword to The family as a device in medical school teaching. Journal of Psychiatric Social Work, 1955, 24, 70-78. McGann, L. M., & Lutzker, M. A new dimension in medical teaching. Journal of Rehabilitation, March-April 1975, 41, 35-36. Medical schools respond to NASW teaching survey. NASWNews, February 1968, p. 16. Phillips, B. Social workers in health services. In R. Morris (Ed.), Encyclopedia for social work (16th ed.). New York: National Association of Social Workers, 1971. The pre-clinical teaching of psychiatry (Rep. 54). New York: Group for the Advancement of Psychiatry, 1962.

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Sachs, L., Henderson, M., & Beilis, E. C. Social worker participation in training residents in psychiatry. American Journal of Orthopsychiatry, 1968, 38, 25-30. Shively, L., & Phillips, W. A. Family oriented training for psychiatry. Archives of General Psychiatry, 1963, pp. 419-426. Social work teaching in medical schools—A round table of psychiatrists and psychiatric social workers. Journal of Psychiatric Social Work, 1951, 20, 88-89. Steel, E. H. A four-year study at the University of Pennsylvania Medical School. Journal of Psychiatric Social Work, 1955, 24, 86-89. Tanner, L. A., & Carmichael, L. P. The role of the social worker in family medicine training. Journal of Medical Education, 1970, 54, 859-865. Tanner, L. A., Linn, M. W., & Carmichael, L. P. An interdisciplinary student health team project in comprehensive family health care. Journal of Medical Education, 1972, 47, 656-658. Thomas, R. C. Psychiatric social work in a medical school. Mental Hygiene, 1952, 36, 286-293. Ullmann, A. The role of the social worker in teaching fourth-year medical students. Journal of Medical Education, 1959, 34, 239-246.

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Ullmann, A. Teaching medical students to understand stress in illness. Social Casework, November 1976, 57, 568-574.

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Hyman J. Weiner’s Use of Systems and Population Approaches: Their Relevance to Social Work Practice in Health Care Today Sylvia S. Clarke, MSW, ACSW At the time of writing Sylvia S. Clarke was Editor, Social Work in Health Care, and Consultant, Department of Social Work Services, The Mount Sinai Hospital, One Gustave L. Levy Place, New York, NY 10029. SUMMARY. In the course of his creative career, Hyman J. Weiner August 22, 1926-December 2, 1980) exerted a particularly profound, distinct and dynamic influence on social work practice in health care settings. This tribute to him reviews the theoretical perspective and action guides he formulated to help social workers in these settings apply systems and population approaches to the shaping of their missions, functions and services. Their current applicability is discussed.

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To prepare for this meeting, I revisited two three-year periods of my professional life. During these six years, separated by a 10 year interval, Hy Weiner served as a consultant and teacher to me and the staffs of the departments for which I carried leadership responsibility. The circumstances, the institutions, their resources and hazards were dramatically different, but what Hy brought had a functional relevance to each situation and setting that fit like a glove. Like Proteus in his many forms, the protoplasm shaped to the need. As I browsed through several feet of files, some of his, some of my own, my quest was to grasp better Hy’s legacy to us in order to be able to speak to you about our use of it. The manner of the man, Hy Weiner, the quality of his mind and of the way he worked are indelibly etched on each page, and in dimmer outline on us who absorbed his teachings. Hy’s heritage to us is both content and method; the way we work is influenced by the way he worked. In the perspective of this review, I saw that the remarkably synthesized knowledge base he gave us had been synthesized further in various times, places and personalities. It seemed to me that up until now we have been uneven in applying and integrating Hy’s perspective of social work function in health care settings. A gap exists between what he taught us the place of social work in health care could be and what it is. Depending on the setting, its pressures, the capability of its leadership and external constraints, the gap may be broader or narrower. I will try in the next few minutes to remind you of Hy’s vision in terms that may enable us to further narrow that gap. From the microcosm of my 79

experience, I shall try to recapitulate how he thought our role in health care could be modeled; and to highlight some of the lessons we learned from him about how to make theory come alive by applying population and systems approaches in the modeling process. This integrally connects with ecology and the ecological approach that we have been hearing and learning about since the early 60s. Carel Germain, Alex Gitterman, Ann Hartman and others have contributed to the development of a social work framework for its use. Hy’s view was also ecological, another point of synthesis in our legacy. He called for social work to be active in three main systems: the patient and family system, the hospital system and the community system, as each interacts with the other to shape the nature of medical care. Hy derived specific social work mission and roles from this perspective with social work placed among the three to help the fit between the patient and the health care system and between these two and community systems. It is a very exciting perspective for action because the areas to be assessed are increased; the options for intervention or what Hy called “leverage points” are increased in turn. We have not always been sure we wanted to enter this larger universe. In an early meeting with Hy, two workers asked why social work should take it upon itself to work in this expanded arena, where after all, we are only “guests.” Who, indeed, gives us such a mandate? This question is still operative for many of us. Though I doubt that Hy bought the guest status, his “answer” still applies. The guest can often influence the host. The position of guest lends us neutrality. 80

There is a unique advantage in not being central to the direct provision of medical care. He valued the stranger-within-the-gates status that made negotiable service to the system, service to those using the system and service to those defending the system. Our skills in understanding behavior, in lending empathy and in helping people work on their problems are serviceable, not only with patients and families but for work with nurses, physicians, administrators, community representatives and the host of others who make up the health care system. Our ability to look at the whole and to partialize for action spoke to power—not victim mentality, which Hy deplored.

A Different Way of Seeing Function Hy respected the sophistication of the good clinician but he thought the term “generic” applied to a worker versatile in methods was a semantic facade. He called for a new model of social worker. This spoke to a kind of chronic nagging discomfort about our contribution and gave us the “itch” to work on the issues, problems and possibilities he laid out. Out of a knowledgeable orientation and commitment to offer service, whether by individual, or family or group method or all three, came a new conceptualization for our effort; social work programs that address problems of a population, of a system. Thus, systems work, mediating work and advocacy work become integral to and intertwined with clinical work. This has helped us move off the case-by-case approach to a population approach, to redefine what we do in the ecological context.

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He called the first style the buttonhole approach, that of a coat created with more concern for the buttonhole than for its cut and fit. The caseworker’s close attention to inter and intrapsychic detail represented the working of the buttonhole, a sophisticated effort he highly valued. But he wanted us to professionalize not only the making of the buttonhole but of the entire garment. Most of us subscribe in theory to the concept of our role being to help the hospital reach out and be responsive to the patient and helping the patient and his family use the hospital and be more adequate in the patient role. We have heard his functional message that we examine what the hospital and the social work department are in business for; that we link our work and mission and function to that business, making our services integral to it. The patient and the hospital need each other to exist. Social work, then, needs to improve the detente between them. We do believe our goal is to help each be more responsive to the other, and we do know we have expertise in the cutting edge of their interaction with each other. But how do we put this grand notion into action?

Population and Systems Studies Hy Weiner wrought changing perspectives to systems, milieu and public health approaches which he put to the use of social work function. Theoretician in action, he worked with practitioners to test his every concept: modifying, retesting, modifying again. In this he was like that valuable clothing worker he so admired, the one who “worked on velvet,” the craftsman with the most delicate fabric.

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Hy gave us keys that opened many doors, and as each door opened new vistas and understanding emerged. He taught us how to look at patients’ and families’ problems and at institutional problems at the point in time when the two come together to transact health care business so we can search out the universal elements which impair, aid or impinge on the transactions. We looked with him at the hospital as a small society and viewed patients’ behaviors as affected not only by their personalities but also strongly influenced by the culture of this small society. In each setting we spent a few hours a week for several years in a kind of anthropological field work with Hy as our expedition leader. Indeed, he used to say that when anthropologists ran out of islands, they moved into hospitals. We looked at selective dimensions of the institutional climate for their influence on patient and family behavior. We viewed such elements as the floor and clinic as an environmental system—physical layout, waiting rooms; messages these impart to patients, behaviors evoked. How were patients admitted? registered? What was the waiting time? We identified the social interaction or absence of it among patients; patient cliques and sub-cliques. What roles are prescribed for patients by various professions? Differing behaviors encouraged by them? We observed physician, nurse and other provider communication with patients. What was the nature of the professional’s relationship with patient and family: recipients or partners in care? Who were considered “good” patients? “Bad” patients? What was the impact on patients of the illness, the hospital environment, the 83

interprofessional systems? We become sensitive to group and sub-group reactions and patterns. This led us to look at patients’ natural groupings and whether they could be harnessed for mutual aid or for what we now call self-help networks. We went on individual forays to study hospital sub-populations such as specific clinics and in-patient services. High risk sub-populations surfaced as staff members assessed how institutional workings and care delivery were experienced by patient and family and vice-versa. Here, too, we came away with study guides to patient culture. We used the concept of life-space and translated it to the hospital setting. Patient-to-patient interaction emerged as we located the patient in the social network of floor or clinic. Some of the questions we raised about the average patient’s appraisal of the treatment process, the discharge process, the receipt of medical information were harbingers of today’s quality assurance protocols. Hy thought that various professional life forms had to be studied with objectivity. Important islands on our journey of exploration of the hospital archipelago were varieties of multi-discipline cultures, the stuff which makes or breaks inter-professional work. This was the logical next step. We had seen the effect of the hospital milieu on patients and families. Now we were pinpointing whence it came. We tracked primary, secondary and contradictory goals of services; whether the goals of teaching and research were consonant or dissonant. In connection with the varieties of the interprofessional work, roles, teams and divisions of labor, we 84

identified overlapping and underlapping functions, conflicting and synchronous expectations, status and hierarchy pressures. We saw how group cohesion, degrees of commitment, identity with the service and its goals, conflicting values and professional allegiances could either galvanize or disrupt. What leadership styles were we seeing? authoritarian? laissez faire? What were favored communication pathways? memo? team meetings? rounds? catch as catch can? Who usually initiates communication? Who had ultimate responsibility for decision making about psychosocial problems? We learned to “read” how conflict of interest among professionals was resolved; and we always looked to see how and how not the social work role was integrated with the medical purpose. Within this overview of systems and structures, sometimes supportive, sometimes non-supportive to patient care, we focused on the social work system, still· playing anthropologist. How were our services meshing with the problems flashed up? How were patients accessing the social work system? In our individual workloads we looked at how much attention we paid to family systems. Was our family focus for real or in name only? We bravely looked at our working hours and days. He asked us to visit our services on weekends and evenings and we experienced the lonely Saturday night on an in-patient service and the hectic counterpart in the emergency room. As I journeyed back through these significant and sometimes difficult years, I continued to marvel at how theoretical knowledge was implemented into actual programs. Hy Weiner’s concepts translated into program changes—they made real things happen. I will try to summarize four 85

powerful “how-to” principles that seem to me treasured gifts from Hy to us. They become ours by their continued applicability and relevance. We can use them every day.

1. Working From Priority-Consciousness Is a Constant, Substantive Part of Our Practice We began to know more about priorities when we looked at what we were doing with our own social work resources. By way of locating its “center of gravity” we looked at our practice to see whether we were mostly meeting emergencies; maintaining adaptive patterns; modifying them? We looked for our preventive work and were disappointed that we were doing so little. Should the center of gravity be shifted? If so, what obstacles must be dealt with? Hy asked us to cease giving service for a day or two to our usual “caseload” and to interview a large sample of patients who would not ordinarily come to our attention. The alive and objective data that came out of this comparison were dramatic and unforgettable. We found that, like other professional life forms within the hospital, we also had our preferred patient. We did a lot of hard swallowing when we compared the clusters of problems of patients who came to our doors with those we were not serving. The problems were the same. Our priorities differed. The study of these two groups flashed up social work systems problems about methods of case finding; consequences of our referral system became visible. In giving us ways of studying our programs, Hy helped us face the sometimes surprising and painful realities of how we establish our service priorities

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and how we use the resources at our disposal. High Risk Screening was on his drawing board from the beginning.

2. We Must Study and Write Down Our Findings to Legitimatize Action. When We Can Believe Our Assessments, We Can Act on Them with Credence and Credibility The data we gathered were not obscure. We did not have to dig deep to search it out. Social workers see problem patterns stirred up by institutional procedures for clusters of patients every day all day long. But what happens is that after the first few months in a health setting, we start not to see what our eyes behold or to listen to what our ears hear. They are dimmed by the veil of familiarity or by natural self protection because some of the things we observe and hear are unbearable. Also, some feelings of helplessness lie beneath our murky vision. How can we affect change in this vast, multiple-interest institution? Too, we want to belong to our working community so we shut out what we have seen. Or we emphasize the pathology we see in these systems and call them hopeless. Hy used to say that social workers’ penchant for seeing pathology was so great that it made him wonder how we or other professionals were ever able to be of any help to any patient. The institution must be doing something right! So we learned we had to examine what worked well for the patient and family and put this in assessments. The disciplined overview, observing and recording findings, commits us to seeing what is there and to not sidestepping what we see. The analyses prevent premature decisions. They

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pull us away from the too narrow therapeutic approach and save us from imbalance. They determine how the coat will be cut along with the placement and the finish of buttonholes.

3. Applied Ecology Calls for a New Model of Social Worker We now see, as Hy did, how important it is to envision the line social worker today not only as there for his patients and families and professional staff, but as an “in charge” person for ordering the social work activities in his service. Population approaches and systems analyses give him a technology for the vital piece of management work we call program development. This ties into the concept of ecological balance, of how finely adjusted each subsystem is to the others. We learned and saw how the entire ecology could be affected by one part of it. On a medical service of more than 200 beds, the housestaff rotated from one sub-specialty service to another on the same day every three months. This left patients with no physician familiar with their medical situations for the time it took for the entering housestaff to get on top of its work. It was clear here that the goals of teaching and service, both excellent in themselves, were conflictual. The worker was able to use the observations to influence a rotation change that better tuned in these several systems to each other. On psychiatry service, we found that the psychiatrists and psychoiogists

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were working only with the so-called “interesting” patient. The central issue on that service was that the less articulate, non-“interesting” patient was receiving little or no direct services except medication. In-patients were to improve via the daily activities program. When we flashed up social work activities on the service, we found that we were working primarily with the families of patients. We shifted our priorities and began to give direct services to the non-preferred patient himself. This flagged the interest of other disciplines in this under-served group and the overall program balance shifted. When our priorities changed, the shift had a ripple effect on the entire service program. A change in one part of the system will impact on another, sometimes constructively, sometimes not. So this impact has to be forecast. Since method is function in operation, decisions about methods are contingent first, on analyses of these three systems; and second, on formulations of social work mission and functions which are consonant with the needs they surface. Too often social work programming consists of adding a group or two, if groups are “in,” or behavior therapy or patient education or sex therapy to the workers’ activities in individual counseling. The worker needs, indeed, to have a repertoire of methods skills but their use has to flow out of function modeled to fit patient and system problems, not by accretion of methods one on top of the other.

4. We Can Always Work from Strength The study process always concluded with a plan for action as Hy asked us to identify what had major impact on patients. The primary targets for action became visible very quickly.

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“Make three or four recommendations for change,” he would say, and “give each its priority.” “Now,” what are the impediments, obstacles to implementing them?” What made it all do-able for us was that he showed us how to find the leverage points for change. It was as if we had contour maps in position when we began the process of melding the perspectives of our studies into plans for action. This planning requires what Hy called political strategies for change. The needed skills can be developed. They are not mysteries. Start where some degree of success is possible: that helps set target priorities. Shift the focus from the “problem” to an issue in which other professions can have a stake; make the issues visible amongst many constituencies; (and we do have more constituencies than we think); negotiate and tradeoff; interject low level conflict: this tests involvement; recognize that others besides social work have a stake in good care; ensure that coalitions and alliances support the plan with their own investment in a piece of the action. As the concept of interprofessional interdependence takes root and the strength of knowing that we have multiple constituencies feels real, we are neither lonely nor powerless. These forces infuse strategies with vitality and the stage is set for change. The analyses may show that a high priority target is helping other professionals to expand their services to patients or family populations. There probably is not a cardiac or oncology service anywhere in the world where the patients’ primary need is not for an ongoing relationship with his physician for discussion of the illness and its implications. On such services, some social work energy and resources might be better reallocated from individual work to the development of an institutional program which meets this universal need. 90

How different this is from hounding the doctor to talk to patient A, B and C! Hy taught us to see the broad picture. It was a way of making our brush strokes count on the hospital canvas. Seeing the broad picture, looking at systems as well as patients, helps us plot out and sequence our programs of service, to actively build our delivery model.

How Can a Department and Its Staff Use These Approaches? Looking and studying take time. So does eating, sleeping, stopping for gasoline, scrubbing for surgery, reading a road map. This may be seen as a stumbling block. How can we risk lowering productivity or income offsets when we are already short staffed and facing cutback? But if we don’t sleep or eat or stop for gas, we get into real trouble. It may be difficult to take this stance and to take this chance. The motivation to struggle with this seeming time obstacle comes from the conviction that the more we deal with universal needs of populations of patients, the more integral our services can become to the life and business of the institution, to its patients and to its community mandates and expectations. Hy saw these approaches as the only way to lay down deeper, stronger roots in the health care delivery system. He admonished us to “live dangerously!” I see them as indispensable survival tactics that work in hazardous times and battle conditions. Social workers in health worry about turf, about having our functions threatened 91

by liaison psychiatry, by clinical nurse practitioners, and indeed, by all those who want to help people and who are getting more sophisticated about doing it. Population and systems approaches can increase our territory, give us more actual acreage to plow and better tools for their cultivation. Most important, working with universally experienced phenomena offers the potential for affecting the lives of many more patients and families than we now reach. It makes social work more relevant to the human condition. It is clear to me that most of use some parts of this approach some of the time. The gap I noted earlier is in consistently applying this way of working as we program our services. Institutionalizing this approach, ingraining its common use is possible. Individuals can use it on their own. It can also be supported by the entire department when the message is given that this work has high priority. There are skills to be developed, too. When departmental commitment and sanction is in place, all levels of management and line staff have to learn the knowledge base and the techniques for the study of systems and strategies for change. This entails a lot of hard work, exciting work, learned only by doing. We cannot learn to swim, to play the piano, to make shoes or to make love without practice. Neither can we learn to move within multiple systems without practice. It helps to have a teacher like Hy Weiner who made these studies exciting adventures of discovery. But a consultant can never develop the program itself: we need to do this ourselves. Some impediment, some reluctance may exist but this will be counterbalanced by those who have conviction about its necessity and its value. Its excitement sparks momentum. 92

There is not a better curriculum for staff development and continuing education programs. It will tie diverse staff together. As staff members look at their services and their patients together, they learn from and help each other. The steps in studying ingrain the perspective on how to program our services. The process diminishes what Hy called the sense of helplessness deriving from “status deprivation” and our place in the institutional hierarchy. We are in control of our own work at least and this makes our sense of professional identity stronger, firmer, and at the same time elastic and resilient. Is this view of social work role realistic? It calls for more than method expertise which is hard enough to attain anyway. How real is it to also expect expertise in systems studies, in collaborative influence, in power accretion and in social change? Are we looking for a rara avis? For the protean professional? When I mentioned this thought to a colleague, he said, “no, it’s asking for a social worker!” In the notes I reviewed, the same themes appear over 20 years but each time the perspective shifts a bit and the content is changed, rather like in the paintings of Monet who, as you know, spent many years painting the countryside near his home at Giverny. He said that all he had to do to change the view and have another subject was to shift his chair five degrees to the right or the left. This gives us the essence of the legacy Hy left us—its unending applicability to changing vistas and times. There was sorrow in the journey of revisit I made. But there was also elation and exhilaration in knowing how alive and real and relevant and usable today is Hy’s message to shift our chairs. Whether we shift them volitionally or they are tilted by hazard, we can use his vision 93

and teachings to carve out dynamic social work roles in health care.

Notes This paper was presented at the Hyman J. Weiner Memorial Conference held in New York City on October 18, 1982 under the joint auspices of the Columbia University School of Social Work and the New York City Metropolitan Chapter of the Society for Hospital Social Work Directors. Because its format derived from a personalized presentation of professional issues, the first person style is retained for publication. The author thanks Ms. Grace Fields for her valuable help in its preparation. Reprinted from Social Work in Health Care, Volume 9(2), Winter 1983.

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An Ecological Perspective on Social Work Practice in Health Care Carel B. Germain, DSW At the time of writing Dr. Germain was Professor, Columbia University School of Social Work, 622 West 113th Street, New York, NY 10025. An earlier version of this paper was presented at Augustana College, Rock Island, Illinois, October 11, 1976. SUMMARY. The ecological perspective conceptualizes the social work “case” as the patient and relevant features of his life space, including the health organization itself. The perspective requires a dual and simultaneous focus on the coping tasks of patient and family and on the coping supports that must be provided by the health organization. Four prescriptions for humanizing health care are suggested, and their congruence with social work purpose, roles, and practice domain is developed.

Shaping Role and Function Florence Nightingale is said to have written home from the Crimea that while she wasn’t yet able to say what a hospital should be, or how it should care for patients, she was quite sure it should not make their condition worse. Out of her 95

awareness of the potential power of the environment, Florence Nightingale was making an ecological statement. Ecology’s concern is with the relationships between organisms and environments. It thus offers a useful metaphor for social work practice. Like other helping professions, social work is giving more attention to the influence of social and physical environments on the adaptive and coping behaviors of people. We are beginning to understand that the environment is more dynamic and complex than we had realized, and is more important in coping and other life processes than we had thought. The challenge now is to develop ways that we can use, modify, or support people’s environments with the same devotion we gave to developing ways to mobilize, modify, or support people’s psychological functioning. Health organizations and other social institutions on which people depend are significant features of the environment in an urban, industrialized society. When we apply ecological thinking to social work practice in any field, we must look first at the environmental context of practice itself. Here the rate of social change in health care and its impact on social work are striking. New knowledge and technologies, new social designs, and new service responsibilities affect the social work task. The rising costs of health care and dissatisfaction with the quality of services create additional pressures. These and other forces in the social context of health care bear upon social work’s professional purpose, its roles and functions, and its practice domain. The ecological perspective suggests that our social purpose is to improve the quality of transactions between people and 96

environments so there is a better match between people’s adaptive potential and environmental qualities (Gordon 1969). Arising from that purpose, our roles and functions are directed to supporting and enhancing the adaptive capacities of people and to influencing the immediate environment to be more responsive to human needs. Our practice domain is then conceived as the interface area that includes both the coping behaviors of people and the qualities of the impinging social and physical environments. This interface position assumes that person and environment are reciprocal parts of a transacting system whether we look at an individual and her social worker, a patient group and the hospital ward, a satellite clinic and its neighborhood, or aged residents and the geriatric facility. Each shapes the other, and the social work domain comprises both. Life being what it is, the adaptive interchange between people and environments is rarely continuous or smooth. Upsets in that interchange are conceptualized as stress. The stress of illness or disability represents a transactional process between inner and outer events that disturbs the goodness-of-fit between person and environment. What is perceived as stressful, and what is experienced as stress, varies with age, sex, genetic endowment, previous experience, cultural norms, vulnerability to particular kinds of stress, and the present state of the person. Coping refers to capacities and skills people use to handle stress. Such attributes include: motivation; cognition and problem-solving skills of planning, judgment, and anticipation; a modicum of self-esteem and self-confidence, and sufficient defense against anxiety and depression so that problem solving can begin (Mechanic 1974; White 1974). 97

Successful coping leads to the mastery of stress or at least to its reduction. Less successful coping results in the persistence or even the increase of stress. Social work practice too often focuses primarily on coping behaviors and overlooks their environmental context. The ecological perspective continues this focus but adds a simultaneous emphasis on environmental nutriments that effective coping requires. Coping may be ineffective, for example, if the past environment has not provided opportunities for learning coping skills, or if the present environment, including the health organization itself, docs not provide opportunities for taking action, making decisions, and having an effect upon one’s own situation, however small that effect might be. Additionally, where one is located in the social structure governs access to these opportunities, so that the stress experienced by poor people-whether the stress of illness or of other life events-is compounded by a greater discrepancy between tasks and resources. Coping is also apt to be ineffective if the environment does not reward motivation and coping efforts, or does not furnish social and emotional supports necessary for maintaining self-esteem and controlling some of the anxiety and depression. Coping may also be ineffective if the environment fails to furnish the necessary information on which coping depends (White 1974). People’s ability to think and to deal with information from internal and external sources has sometimes been overlooked out of our understandable concern for the emotional components in coping. Like stress, coping is conceived as a transactional process between person and environment. The environmental 98

nutriments required by patients for effective coping with the stresses of illness and disability may be summarized as: (a) opportunities for taking action, exercising judgment, and making decisions to the degree allowed by the nature of the illness; (b) staff behaviors and patient services that support patients’ self-esteem and reward patients’ coping efforts; (c) organizational procedures and policies that respect patients’ life-styles, cultural values, and social supports; and (d) the provision of information in the appropriate amount at the appropriate time. These environmental qualities are, in a sense, prescriptions for humanizing health care. They also fit the professional purpose of social work, influence its roles and functions, and shape its practice domain.

Action and Decision Making Prescription No. 1 refers to opportunities for action and decision making, and it immediately confronts the role definition of “patient.” Some of the passivity inherent in the role of patient is necessary for treatment. Some, however, may derive more from organizational needs and staff convenience, so that patient action and decision making are discouraged from the outset. The rapid erosion of the patient’s sense of identity and self-regulation begins at admission when she leaves her accustomed life space and separates from family, friends, and treasured possessions. The patient must relinquish her previous action roles and assume a new role, with different expectations, in which she will be directed and managed by authority figures and strangers. Yet, it is possible for even very ill patients to engage in forms of action and decision making as in the seemingly simple processes of 99

menu selection and choosing the color scheme of linens. Perhaps greater flexibility in waking, bathing, and eating schedules might also be arranged for a better fit with patients’ biological and accustomed temporal cycles (Brown 1961; Germain 1976). Some hospitals have provided for greater action and participation on the part of the patient and family members, particularly on obstetrical and pediatric services, and these important innovations need to be considered for extension to other services where possible. A medical anthropologist has suggested that patients be given their own appointment books for a sense of control over the schedule of events requiring their participation. He also has made the radical suggestion that patients be given their own personal medical record that would approximate the hospital record with respect to specific facts, important medical interpretations, and predictions (Kennedy 1975). There are policy and procedural issues in this, yet the idea may not be too different from the patient’s and family’s presence in diagnostic and treatment conferences at various medical and psychiatric centers. In many health settings, patients are now asked to evaluate social work services. This is a very important patient action that can have an effect on the organizational environment, and enhance patients’ self-esteem and sense of competence.

Self-Image Prescription No. 2 requires services and staff behaviors that reward patients’ coping efforts and support their sense of dignity. Yet the patient who wants answers to his questions

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and insists on his dignity as a total human being is often defined as a problem patient. The process is clearly pictured in the recent book A Coronary Event, written jointly by a patient and his physician (Halberstam and Lesher 1976). All attempts by the patient, Stephen Lesher, to influence or change staff procedures in his care so that he could maintain control over certain areas of his life and functioning were misperceived by staff as acting-out behavior and were responded to on those terms. The coping significance of these efforts in supporting identity, dignity, and self-regulation was overlooked and thus not supported. Sometimes a patient is regarded as an object and not as a whole person, as in the following case example: A social worker on the pediatric-surgical service received a call from an anxious mother about her ten-year-old daughter. The child had been discharged two days earlier after open-heart surgery. She seemed afraid to move or to do any of the things for herself that she had been able to do in the hospital. She wept uncontrollably whenever her mother attempted to leave the room, yet she refused to tell her mother what, if anything, was wrong. The social worker visited the home and found Sally lying rigidly in bed, tearful, and refusing to talk. Ultimately, by “talking” with Sally’s dog, the worker learned the following from Sally: During rounds just prior to discharge, the child had heard the resident refer to her leaky valve. For the past two days she had been terrified of moving or in any way tilting the valve so as to cause all her blood to fall out. After giving Sally some reassurance, the social worker returned to the hospital and told the resident of the child’s fears. 101

Horrified, the resident visited his patient and, with pictures and a story, helped correct her misunderstanding. In this hospital, like many others, the social worker is not a member of medical rounds, and he could not help until after the damage had been done. Where the social worker serves on rounds, he can draw attention to psychosocial features in the patient’s situation pertinent to diagnostic and treatment issues. But he can also add a concern that the patient be protected from experiences that injure the sense of dignity, affect the self-image, and weaken coping. Serving on rounds is an important means by which the social worker can help to humanize the hospital milieu for all patients, and for staff as well. By heeding the second prescription, social work departments may also make more creative use of various levels of social work personnel, including volunteers. In one acute treatment center, the social work department organized and trained volunteers to visit elderly patients. After the patient was discharged to a nursing home, the volunteer continued to serve as a friendly visitor to the patient, with mutual benefit in increased self-esteem and a sense of identity and competence.

Life-Styles Prescription No. 3 refers to respect for patients’ life-styles, cultural values, and their social relationships; it confronts directly the dominance of organizational norms in patient care. The patient is expected, for example, to follow medical orders even though she may not understand them, and even if they violate her cultural norms. In one urban clinic, staff

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perceived their Puerto Rican patients, who failed to keep appointments regularly, as irresponsible and uncooperative. Yet none of the personnel spoke Spanish, nor were directions written in Spanish, so many patients had difficulty understanding the instructions of doctors and nurses. In many health organizations, little account is taken of other sources of treatment that some patients find more helpful than scientific medicine. The influence of spiritualists as folk physicians and the botanicas (herb shops) as folk medical pharmacies has been largely overlooked in the provision of medical care (and social work services) to Puerto Ricans. These resources may be competitors of scientific medicine, but they could also be collaborators. If physician and pharmacy were to prescribe and dispense herbal remedies along with pharmacological remedies, the “combined therapy” might help the patient understand her illness and the basis of medical treatment, and encourage her to follow medical orders (Fisch 1968). The presence or absence of these resources can also become part of the social work assessment and intervention processes to enhance their congruence with life-styles, cultural norms, and social relationships. Poor people are often alienated by complex screening procedures, dismal surroundings, and long waits. In an adolescent medical clinic, staff noted that most patients did not take advantage of the varied programs offered by the clinic. Instead of viewing the patients as hard-to-reach ghetto youth whose attitudes toward services were to be expected, the social worker looked at what could be done to reach the patients. She created a waiting room group in order to provide an immediate service while the young people were waiting to 103

see their physicians. She hoped to make the waiting room more pleasant and to overcome the dead time that waiting often represents and the lack of respect it often communicates. In the process, the worker discovered the effectiveness of helping the young people use their availability to one another, rather than to her. Soon, the patients also began to use other services within the clinic (Silverstein 1973). Social workers in health care have long known the value of group services in the coping tasks faced by the ill or handicapped. As role models, patients help one another to cope more successfully with anxiety and depression and with the real-life tasks connected to the illness or disability. The group process of people helping people is a natural life process of great power. More recently, interested patients on such disparate services as oncology and psychiatry have been enlisted by social workers to help newly admitted patients become oriented to the service. The helper-patients meet with the social worker to discuss means of helping. Not only does the service become more supportive to new patients, but the sponsor-patients experience an increased sense of competence and self-esteem. Patients themselves can become natural helping networks in the health setting (Collins and Pancoast 1976). Families, too, provide important supports to the patient’s coping efforts. Here, again, it is a mutual process because the patient can provide significant support to his family as they cope with his absence. Occasionally, however, the hospital makes it impossible for the patient to help his family with their adaptive tasks. A second-year student who is working

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with a forty-three-year-old man who suffered a cerebral vascular accident two months ago stated in her record: He is paralyzed and can neither write nor speak. As if these losses weren’t enough, he is prevented from acting in his role of father to his two sons, age 8 and 10, whom he misses deeply and who need him. The hospital does not permit children under 14 to enter hospital grounds, so children can be seen, even in cold weather, standing alone by the bus stop which is as close as security guards let them get to their father. (Brodsky 1976) The student, however, takes the social work purpose of improving environments very seriously, and is seeking to establish a family lounge in the hospital. Patients medically able to do so can then visit with their families. This will not only strengthen the coping of the student’s own patient and his family, but it will improve the environment for all patients. The student points out that this will not be an easy task. Space is at a premium, security might become more difficult, even the hospital’s insurance rates might be raised. Yet, there are positive forces on the side of change. Luckily, the student is competent, well liked, and respected. Second, all staff have a professional commitment to good patient care. Third, physicians approached about an objection that children might bring in infections have said that their patients’ lowered morale from not seeing their children might be more dangerous than the possibility of infections. They have agreed to discuss the proposal with their chiefs. Through the informal system, the social work staff have made allies of the psychologists, and are seeking to persuade them 105

to introduce the proposal through their own staff channels. The student is also gathering data about other hospitals’ experience with visiting privileges for children to help support the change effort. A change in policy may not be achieved, of course, yet the staff have become concerned enough so that effort is likely to continue when the student leaves.

Information Prescription No. 4 requires the environment to provide necessary information on which successful coping often depends. Research evidence indicates that patients cope with stress more effectively when they have information. Surgical patients, for example, who were told about procedures in advance, and what their experience would be like following surgery, suffered less anxiety and were able to leave the hospital 2-1/2 days earlier than control groups without such information (Howard and Strauss 1975, p. 251). One researcher refers to information as emotional inoculation (Janis 1974). He and others caution, however, that such emotional inoculations must be administered with care. In some patients, information in advance about procedures and regimens may lead to increased rather than reduced anxiety. Clearly, patients require and deserve information. It is less clear about how much and when such information is best given. The social worker on the team, working with the patient and the family, is in a position to help with decisions about information on the basis of his assessment of ego functioning and situational supports. He is also available to help patients and families use and cope with information, a

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concern that is often the basis for the physician’s reluctance to provide information.

Physical Environment Thus far, the analysis of the suggested prescriptions for humanizing health care, and their relationship to social work practice, has been directed to the social environment provided by the health organization. But the physical environment, because of the complex ways it interacts with the social environment, also affects patients’ coping with stress. Architectural design, for example, can support or inhibit coping efforts of patients and of staff. In London, Saint Christopher’s Hospice is an architectural form designed specifically to support the reciprocal coping tasks of the patient, family, and staff in achieving a humane death as a part of life and to facilitate the grief process. The more patients and staff participate in design and spatial arrangements, the more likely it is that the resulting structure will provide a nutritive environment. Thus the planning process becomes a significant point of entry for social work intervention. A satellite dialysis program was located in an attractive building with a pleasant interior. The machine was on the ground floor, however, while nursing and social work were located on the floor above. There were no facilities for social work interviews or group sessions on the first floor, and patients did not have the energy for climbing the stairs. This arrangement was the result of poor planning by the architect and the hospital consultant, but social workers did not seek a role in the planning process or suggest that patients

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participate in the design and location of facilities on which their lives depended. Ward geography—spatial design and the arrangement of furniture—has been shown to affect the social behavior of patients in mental hospitals, geriatric facilities, and even obstetrical services. It may support or frustrate patients’ territorial needs for privacy, on the one hand, or their needs for social interaction on the other (Esser 1971; Rosengren and DeVauIt 1963; Sommer and Dewar 1963). Elements of the natural world are also pertinent to coping efforts. The care of a plant or a bird often brings a sense of relatedness to an isolated patient in a chronic care facility, or to a lonely old person, or to a child. Ohio State University’s School of Medicine recently reported therapeutic success in providing pet dogs to regressed mental patients who had not responded to more conventional forms of therapy. These research and clinical experiences suggest that the physical environment is an appropriate point of entry for social work intervention. They further suggest that elements of the natural world can be utilized as environmental instruments to support adaptive processes.

Redefining the “Case” These prescriptions for humanizing health care, and their relationship to social work purpose, roles, and practice domain, reflect the ecological perspective’s dual focus on adaptive capacities and environmental nutriments. Ultimately,

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their feasibility depends on an ecological reconceptualization of the “case” as the service, or the ward, or the clinic unit. This implies relinquishing the prevailing pattern of waiting for referrals from non-social work staff who do not always understand the full scope of social work function. It suggests that the social worker take professional responsibility for screening all patients on the ward, the service, and so forth. She then makes the preliminary decision about the need for social work service and engages the patient and/or family in an informed decision about using the service, including its reliance on mutually agreed-upon needs, goals, and actions. In most instances, this initial process will include consultation with the patient’s physician, and often with other staff as well. Finally, if they are to help patients and families maintain their sense of competence, identity, and autonomy to the degree possible under the stress of illness, social workers must themselves possess professional competence and a sense of professional identity, and they must seek appropriate professional autonomy and accountability. Only then can social workers respond to patient need effectively, responsibly, and flexibly—moving with ease across individual, group, family, and organizational levels of service as the patient’s needs require.

Note Reprinted from Social Work in Health Care, Volume 3(1), Fall 1977.

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References Brodsky, Betty. Unpublished case material, Columbia University School of Social Work, 1976. Brown, E. L. Newer Dimensions of Patient Care. Part I: The Case of the Physical and Social Environment of the General Hospital for Therapeutic Purposes. New York: Russell Sage, 1961. Collins, Alice H., and Pancoast, Diane L. Natural Helping Networks: A Strategy for Prevention. Washington, D.C.: National Association of Social Workers, 1976. Esser, Aristide H. Behavior and Environment. New York: Plenum Press, 1971. Fisch, Stanley. “Botanicas and Spiritualism in a Metropolis.” Milbank Memorial Fund Quarterly 46, no. 3 (July 1968), pt. 1, pp. 377-88. Germain, Carel B. “Time: An Ecological Variable in Social Work Practice.” Social Casework 57, no. 7 (July 1976):419-26. Gordon, William E. “Basic Constructs for an Integrative and Generative Conception of Social Work.” In The General Systems Approach: Contributions toward an Holistic Conception of Social Work, edited by Gordon Hearn, pp. 5-11. New York: Council on Social Work Education, 1969.

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Halberstam, Michael and Lesher, Stephen. A Coronary Event. Philadelphia: J. B. Lippincott Co., 1976. Howard, Jan, and Strauss, Anselm, eds. “Overview.” Humanizing Health Care. New York: John Wiley & Sons, 1975. Janis, Irving L. “Vigilance and Decision Making in Personal Crises.” In Coping and Adaptation, edited by George V. Coelho, David A. Hamburg, and John E. Adams, pp. 139-75. New York: Basic Books, 1974. Kennedy, Donald. “Adaptation to More Humanizing Forms of Health Care.” In Humanizing Health Care edited by Jan Howard and Anselm Strauss, pp. 189-213. New York: John Wiley & Sons, 1975. Mechanic, David. “Social Structure and Personal Adaptation: Some Neglected Dimensions.” In Coping and Adaptation, edited by George V. Coelho, David A. Hamburg, and John E. Adams, pp. 32-44. New York: Basic Books, 1974. Rosengren, William R., and DeVault, Spencer. “The Sociology of Time and Space in an Obstetrical Hospital.” In The Hospital in Modem Society, edited by Eliot Freidson. Glencoe, III.: Free Press, 1963. Silverstein, Sandra. “The Adolescent Waiting Room.” Social Work 18, no. 6 (November 1973): 105-7. Sommer, Robert, and Dewar, Robert. “The Physical Environment of the Ward.” In The Hospital in Modem

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Society, edited by Eliot Freidson. Glencoe, III.: Free Press, 1963. White, Robert W. “Strategies of Adaptation: An Attempt at Systematic Description.” In Coping and Adaptation, edited by George V. Coelho, David A. Hamburg, and John E. Adams, pp. 47-68. New York: Basic Books, 1974.

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Social Work Settings

in

Health

Hans S. Falck, PhD At the time of writing Dr. Falck was Regenstein Professor of Social Sciences, Menninger Foundation, Topeka, Kansas. Reprint requests may be directed to the author at the Virginia Commonwealth University, Richmond, VA 23320. SUMMARY. The distinctiveness of social work in health settings is that people served are clients rather than patients; that the focus of work is on the social effects of illness, not illness; that problem formulation and intervention rests on clear understanding of social cause, social manifestation, and social intervention as group phenomena. This paper is primarily, yet not exclusively, addressed to health care social workers. Although it is true that such workers’ practice is influenced and guided by the setting in which they work-hospital, clinic, community mental health center, and others—the vicissitudes of such work strongly suggest that they need a clear link also to their profession, its methods, theories, assumptions, and values. Beyond the clear advantages morale-wise lies a great need. That need is to spell out how such work is social work, not only attitudinally but also theoretically and, by extension, practically. The work is not automatically social work because social workers do it. More than that is needed.

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It stands to reason as common sense that in a health care setting one needs to learn all one can about the illnesses that afflict the patients. No graduate school can teach more than a small portion of that; most of it is acquired in practice, from colleagues and especially from patients. But what cannot be taught by non-social work colleagues is the social work aspect of helping clients who are there because they are patients, too. That part must rely on social workers who can conceptualize the social work role, who spell out the logic and the reasoning of social work, as well as the goals and ideologies of the profession. Each worker can then make his/her own adaptations befitting the work, his ideas and preferences, and, above all, the needs of his clients. The thesis of this paper is that medical social work will play its most effective role to the extent that medical social workers display and confirm their identity by what they know and by what they can do. In the absence of either or both, university credentials as well as professional credentials (ACSW or licenses) work to the detriment of workers and the profession; and most of all to patients; and lastly, in relation to other professions. What this paper will not do is to berate social workers. This is not the proper occasion to compare social workers with physicians or other occupational groups. All professions display a whole range of qualities; and there is no evidence to the author’s knowledge that any one of them distinguishes itself from all others in its achievements and its failures.

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The Problem Medical social workers are expected and are committed to render social services to hospitalized patients. Much of what is being said here also applies to social workers in mental health settings. The term “medical” is convenient but could to some extent be expanded to cover workers in psychiatric settings, inpatient as well as community mental health. Secondly, medical social workers almost always work as part of treatment groups in which they play but one role. They are expected and are committed to perform as such and usually at a level of unspecified quality. In the first case, the patient treatment level, the usual assumption is that the social worker, as others, is an assistant to the physician who is in charge of the patient. The patient is “his” patient, and, as is true of other ownership processes, he exercises control over who works with the patient, toward what ends, if indeed he does so at all. A great many social workers either accept this situation as it is because they agree with it, or they submit more or less unwillingly and resignedly, or they rebel and leave. Few rebel and stay. Many develop an interpersonal modus vivendi that satisfies them, the physicians, and other members of the treatment group. A cursory review of social work journals suggests, however, the changes that are taking place in social work. One of these is the increase in research work, another is the increasing sophistication of social workers in terms of their knowledge, still another their increasing political sophistication which makes them much less willing than heretofore to take orders

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from non-social workers, and fourthly, the opportunity to join the widespread disillusionment with physicians, the quality of medical practice, the increasing costs, and the general reduction of confidence in the medical establishment. Unquestioned reliance on things and persons medical is on the decline, and the opportunity for more equal participation by social workers in medical work is on the increase. Yet, for fear of overstating the brightness of the new sun, it is still true that hierarchy and authority play extraordinary roles in the allocation of personnel and services to patients. Yet all of this is not enough. The insufficiency in our own argument lies in the fact that social workers continue to function by the leave of others, rather than autonomously, and would thus continue to react rather than act. To be sure, there is an important qualitative difference between being “let” to work with the patient and not being so “let.” The hierarchy may be benign or venal, but it is still hierarchy without collegiality. That, then, is another way of stating the problem before us. Hierarchy alone results in restricted and constricted practice. Its central feature is the inability to serve the patient in ways deemed qualitatively desirable (if not necessary!) by those best qualified to make judgments about it. In medicine that is the physician; in social service it is the social worker. Yet, when the major emphasis in the administration of treatment is on hierarchical considerations, the tendencies are very pronounced to let power rather than expertise rule, and at that power uninformed (if not antagonistic on ideological or other grounds) to that over which it is exercised. The choice before us is not between administrative or clinical power as such; instead it is that hierarchy when standing by itself is insufficient to achieve the desired result, namely, services of quality. All professions teach their students that central to 116

responsible practice is the exercise of autonomous judgment. Autonomous judgement in the professions consists of data collection, informed decision making regarding the meaning of the data, plus decisions about interventions. The word “autonomous” can be taken to mean independent, but it need not be. It can also be taken to imply and mean that workers exercise their functions by the light of their own profession while at the same time exercising their responsibility, that is, with due consideration of the needs, the rights, and the knowledge and skills of others. Autonomy can be conceptualized in the context of others’ functions and rights, as well as one’s own. That, then, is also how I would define collegiality. It rests on the commitment to let the patient have his multiple needs met. It recognizes that colleagues with different interests, skills, as well as attitudes are able to offer help with the enormous complexities of being both alive and sick. That places great responsibilities on all members of the treatment group. A corollary to the thesis with which the paper began is that physicians (as others) will play their most effective role to the extent that they display and confirm their identity by what they know and by what they can do. The mutual recognition of the universal validity of that statement is both the basis for true teamwork and for autonomous practice. One does not confirm one’s competence by attempting to practice what one does not know or by exercising noncollegial control over Junctions not one’s own.

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The Nature of Social Work in Medical Settings Rather than list all the functions social workers perform in medical settings, it will be more useful (if not more instructive) to talk about the logic of social work. The assumption is that one can identify the underlying logical structure of many activities considered part of social work, and that one can also suggest generalizations that could be studied further to see whether or not they stand the test of experience. The identification of logical structure enables us to find integrative principles, which in turn make it possible to view the work holistically rather than episodically, or in terms of single events. The systematic application of principles or generalizations also has the virtue of defining what makes for a profession. Not all structures are logical. For example, it seems illogical to define groups in the language of personality. To cite one example, groups are sometimes said to “feel,” or they are said to “resist.” Groups are at times described as possessing an unconscious. All these are terms not made to explain collectivities. One author suggests that social workers mediate between clients and society (Schwartz, 1961, 1976). He never explains what he means by the implication of “mediate,” that is, to be located “between.” How is one to take that when we are not really told? Could one not just as well—and probably more logically—argue that by virtue of people’s interdependence all are members of society; and that social problems arise precisely because we are all members and yet not treated fairly, or evenly, or justly? Or, for that matter, how can one expect to help professionally if the prerequisite be 118

that one stands not as part of but outside (if indeed that were imaginably possible) of the society we wish to change? These considerations are not mere word quibbles; they go to heart of how we think, by what logic, and from where come our claims to goal, competence, function, and method. When we make single cause statements about groups, we fail to understand the complexities of human networks. When social workers in medical settings conceptualize their clients as patients they imply that they treat illness; but that also prevents them from doing what they ought to be doing, namely, to maximize their functioning abilities in their social situation. That social situation may be concomitant with illness but it is not the same, so that in one sense people are patients and in the other (social work) they are clients who are ill. The latter, then, is a consequence of the illness (for example, unemployment, loss of pay, compromised self-esteem), but it is not illness treated by social workers. I said in another context (Falck, 1977) that social workers who can diagnose in a social work way declare their competence by taking responsibility for reasoned judgment, and by devising intervention plans, I believe that this is the heart of the issue for medical social work as for all other social work. The statement is intended to point to the heart of the issue of disciplinary (and therefore interdisciplinary) practice. Thus viewed, interdisciplinary practice is also seen as a variant of disciplinary practice. If one does not know his discipline, he has nothing to be interdisciplinary about!

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Disciplinary Social Work I should like to begin this section with a listing of what I believe to be the essential aspects of social work logic, and therefore social work practice. 1. The problems to which social workers address themselves are social in nature and encompass a high degree of probability that they can be alleviated by changes in social arrangements. Social means that their causes have to do with behavior involving more than one person, both present and future. Arrangement means action(s) by several persons in relation to each other. 2. The method of problem alleviation and resolution is social, that is, persons acting in relation to each other such that the outcomes are more desirable than the conditions giving rise to the requirement for help. Participants in that process are client(s) and social worker. It should be noted that in a situation that is social there are frequently clients, namely, in group work, in family work, in institutions, who help each other and therefore also themselves. 3. The social worker brings the resources available to him, and it is part of his function to make these available to his clients through the way both clients and workers employ them. The following is a list of such resources: 1. Knowledge of human life and development in general terms, that is, what is common to most people.

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2. Knowledge about the particular client(s) in the specific situation (problem) under discussion. 3. Specific skills (and techniques) assumed applicable to this situation, and based on past experiences with others. 4. The worker’s ability to control the quality of his performance by self-observation in action, related to ongoing awareness of what is happening to the client(s) in the process of being helped. 5. The ability of both client(s) and social worker to evaluate the results of their mutual work. All these dimensions are descriptive of social work practice. They explain why social workers are necessary in health settings. I think it is necessary now to say more about the use of the term “social.” It is obvious that the word has become so all-inclusive that it is difficult to render it specific meaning. That becomes clear when one considers that it is used for everything from what happens in any given family or other group to vast problems such as unemployment and poverty, to say nothing of mental illness. From the vantage point of its most general use, everyone and anyone who addresses social concerns would be doing social work. It would include schoolteachers and policemen, welfare workers and top-level government officials. The need exists, therefore, to delimit the use of the term—at least for social work purposes—where it stands somewhat apart from its most general meaning in

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order to communicate with some degree of precision. This can be accomplished in two ways. The first of these is by problem conceptualization and the second by problem resolution. But even then we will not be totally satisfied, and we will be unconvincing that only social workers deal with social problems and through social work methods. We shall be unable to claim uniqueness (or monopoly) of function even in the doubtful case that this were desirable. 1. A problem is conceptualized as social when by cause or effect more than one person would experience gain or loss by its nature, its consequences, or its resolution. 2. The work is considered social work when methods of problem resolution (or alleviation) are utilized that emphasize the behaviors of people toward each other as means toward the achievement of desired results. This includes the reciprocal behavior of workers and clients, as well as clients among themselves. The fact that most social workers view social problems as social is not to be taken too lightly, although self-evident to social workers themselves. We do live in a society, after all, that holds the ideal of individualism in very high esteem, as well as in one beset by profound doubts about the collective responsibility for the poor, for children, for minorities. Individual achievement is as important to social workers as to other Americans, and a mature view of communalism is largely absent in American society to this very day. Torn by dissent, philosophically and politically, it should hardly be surprising to read that even in the “people” professions there is little

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understanding of the relation of person and community, that is, the meaning of social (Falck, 1969, 1971, 1973, 1976).1 Of particular importance in this connection, and particularly to psychiatric and medical social workers, is the strong inclination to think and talk of patients as having “the social environment” as if it were something outside of them, as an additional consideration regarding a personally held illness. That may be true in the medical tradition. I submit that it has no place in a social work view. From a social work standpoint illness is not a medical event; it is a social event. The members of the patient’s social context are as affected by the person’s illness as they are by all else he/she does. They are affected, they are responsible, their lives are influenced by it, they in turn influence the course and often the nature of illness: The situation is social, the event is social, the intervention is social. All of this defines and spells out our social work values, which deny American individualism, in its isolating forms; and they acclaim the interdependence of man, not only as ideal but as scientifically demonstrable fact. My reading of the social work ethic says that social work believes in the sacredness of the person in the social context, rather than in individualism apart from it, or at most marginally related to it. That is how and why illness is a social event, perhaps not even really illness as social work would sec it, but social dysfunction along with or in addition to illness. It is also the place where our values and our knowledge merge, yet are clearly identifiable. From a social work standpoint, I submit, the needful unit is always a group (the meaning of social), although it is also true that the medical and psychiatric worker may talk with one person at a time. But what they talk about, what they focus on, what is of the essential concern is the person as part of others. That is a social view as I see it, and I recommend it in this context in 123

order to delineate what social—irreducibly—ought to be about. The term “irreducibly,” to emphasize my point further, means that man as part of the social context is not a part that one puts in and takes out, as it were, but that he is to be seen as individuated within the social situation, not separated from it and individualized. It would be beyond the scope of a single paper to elucidate at length the linkages between social man and psychological man, or the relation of sociological and psychodynamic thought. Various attempts have been made in that effort (Falck, 1976; Parsons, 1958; Poliak, 1956). I shall confine myself here to a brief consideration of psychodynamically oriented work in a social framework. Every helping (or therapeutic) interaction is social, simply because it presupposes two or more people, active in some relationship to each other. What makes it social or psychological (it is always both anyway) is the problem conceptualization which emphasizes the one more than the other. When the emphasis is primarily psychological the work is conceptualized as reflecting how by use of the client’s personality he/she experiences himself/herself, and presumably, how modification in personality dimensions would lead to different and presumably more satisfying behavior. Social work is problem solution, both in the conceptualization of it as social and, therefore, in its method. It emphasizes not what the personality produces, but the options (choices) clients have that are realistically available in order to cope (behave) more effectively. The test in both personality- and behavior-oriented work is more desirable behaving. It is not in whether one or the other is better or deeper. It lies in what is needed by the patient and what 124

works. Deeper is not always better, and coping more efficiently may engage so much energy and spell so many difficulties for the client that it would often be far better to try a more psychiatrically centered approach. There need be no conflict, therefore, between social workers, psychologists, and psychiatrists when the issue is viewed from the standpoint of resource availability. The problems arise primarily over power, domination, and envy. They are pushed under the rug when role blurring takes the place of making multiple methods and resources available. The discussion, then, leads back to a logical extension of the concept social as here given. That in turn suggests that the medical concept patient (in distinction to Parsons’ sick role formulation) ought to be revised to client. Client has the advantage of being consistent with the rest of social work, resolves the confusion over whether nonmedical people “treat” patients, clarifies that social workers help clients cope socially by invoking the client’s family and/or other social structures, and thereby dampen the individualistic bias that underlies everything from medicine to education, social work, religion, and business. Medical and psychiatric social work should come to terms with the fact, as I see it, that the central logic of its work is social, that is, group related. This does not suggest that “one-to-one” work is not as legitimate as it ever was, but that the point of view workers bring to it is determined by the individuality-groupness dimension which irreducibly describes man to social workers. I think that the educational implications of this intellectual attitude need to be spelled out, but not in this piece. May it be 125

sufficient to point out that they lie primarily in the area of how man is viewed psychologically and sociologically, and by derivation how this affects the formulation of intervention theory.

Conclusions The concept social has its own logic in both problem conceptualization and in intervention management. It is the central intellectual building block for social work practice. It does not need to stand in conflict with other approaches, either in problem conceptualization or in methodology of helping. Social work and social workers are defined as persons committed intellectually, attitudinally, and methodologically to the understanding and practice of social intervention. If the tone of this article is “editorial,” this is my intention. There are issues where the facts should lead one to suggest, also, how they ought to be changed.

Notes Reprinted from Social Work in Health Care, Volume 3(4), Summer 1978. 1. The author’s main points have to do with viewing individuation as a result of and a contributor to groupness, referred to as the individuality-groupness (l-G) effect, rather than continuing to distinguish between individual and group.

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References Falck, H. S. Thinking styles and individualism. Bulletin of the Menninger Clinic, 1969, 33(3). Falck, H. S. Individualism and the psychiatric hospital system. Bulletin of the Menninger Clinic, 1971, 35(1). Falck, H. S. Magic in the perception of the self-made man. Menninger Perspective, 1973, 4(6). Falck, H. S. Individualism and communalism: Two or one? Social Thought. Summer 1976. Falck, H. S. Interdisciplinary education and its implications for social work practice. Journal of Education for Social Work, 1977, 13(2). Parsons, T. Social structure and the development of personality: Freud’s contribution to the integration of psychology and sociology. Psychiatry, 1958, 21(4). Poliak, 0. Integrating sociological and psychoanalytic concepts. New York: Russell Sage Foundation, 1956. Schwartz, W. The social worker in the group. Social Welfare Forum 1961. New York: Columbia University Press, 1961. Schwartz, W. Between client and system: The mediating function. In R. W. Roberts & H. Northen (Eds.), Theories of social work with groups. New York: Columbia University Press, 1976.

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Commentary Social workers writing of the history of our profession’s work in the health care field sought to deepen our understanding of the present and our ability to prepare for the future (Siefert, 1983; Weick, 1983; Kerson, 1979; Lurie, 1977). Concurrent with external forces, evolving trends within the social work profession itself have influenced health care social work, i.e., the shift in the conceptualization of social work practice away from medical, expert, or curative models toward those that presuppose clients’ rights to service and their capacities for change. For example, Schwartz (1976) conceptualized the interactional model, which positions the social worker in a mediating, negotiating role to enable the provider and consumer (client) to come together. Many treatment perspectives such as crisis theory, behavior modification, stress management, grief work, family treatment, and systems theory have influenced concepts of role and methods of intervention with individuals, families, and groups. The ecological perspective of Germain (1973; 1979) broadened the arena for social work intervention to include those aspects of the health care system’s delivery that are noxious influences on patients’ health. The expanding parameters of what comprises the “psychosocial” in the biopsychosocial perspective broaden the possibilities of new approaches to practice and program development.

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References Germain, Carel. “An Ecological Perspective in Casework Practice,” Social Casework 54(7), July 1973, pp. 323-330. ______ Social Work Practice: People and Environments. New York: Columbia University Press, 1979. Kerson, Toba Schwaber. “Sixty Years Ago: Hospital Social Work in 1918,” Social Work in Health Care 4(3), Spring 1979, pp. 331-343. Lurie, Abraham. “Social Work in Health Care in the Next Ten Years,” Social Work in Health Care 2(3), Summer 1977, pp. 419-428. Schwartz, William. “Between Client and System: The Mediating Function,” in Robert Roberts and Helen Northen (Eds.), Theories of Social Work with Groups. New York: Columbia University Press, 1976, pp. 171-197. Siefert, Kristine. “An Exemplar of Primary Prevention in Social Work: The Sheppard-Towner Act of 1921,” Social Work in Health Care 9(1), Fall 1983, pp. 87-102. Weick, Ann. “Issues in Overturning a Medical Model of Social Work Practice,” Social Work 28(6), November-December 1983, pp. 467-471.

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Additional Readings Bartlett, Harriett. Fifty Years of Social Work in a Medical Setting. New York: National Association of Social Workers, 1957. ______. Social Work Practice in the Health Field. New York: National Association of Social Workers, 1961. ______. “The Widening Scope of Medical Social Work,” Social Casework 44(1), January 1963, pp. 3-10. ______. “Ida M. Cannon: Pioneer in Medical Social Work,” Social Service Review, 49(2), June 1975, pp. 208-229. Berkman, Barbara. “Innovations for Social Services in Health Care,” in Francine Sobey (Ed.), Changing Roles in Social Work Practice. Philadelphia: Temple University Press, 1977, pp. 92-126. Bracht, Neil F. “The Scope and Historical Development of Social Work,” in Neil Bracht, Social Work in Health Care: A Guide to Professional Practice. New York: The Haworth Press, 1978. Butrym, Zofia. Social Work in Medical Care. London: Routledge and Kegan Paul, 1967. Cannon, Ida. Social Work in Hospitals. New York: Russell Sage Foundation, 1913.

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______. On the Social Frontier of Medicine: Pioneering in Medical Social Service. Cambridge: Harvard University Press, 1952. Caputi, Marie A. “Social Work in Health Care: Past and Future,” Health and Social Work, 3(1), February 1978, pp. 8-29. Hirsch, Sidney, and Lurie, Abe. “Social Work Dimensions in Shaping Medical Care Philosophy and Practice,” Social Work 14(2), April 1969, pp. 75-79. Kerson, Toba S. Medical Social Work: The Pre-Professional Paradox. New York: Irvington, 1981. ______. “Responsiveness to Need: Social Work’s Impact on Health Care,” Health and Social Work 10(4), Fall 1985, pp. 300-307. Lewis, Harold. “The Emergence of Social Work as a Profession in Health Care: Significant Influences and Persistent Issues,” in Helen Rehr (Ed.), Milestones in Social Work and Medicine. New York: Prodist, 1982, pp. 25-41. Rehr, Helen (Ed.). Milestones in Social Work and Medicine. New York: Prodist, 1982. Siegel, Doris. “Social Work in a Medical Setting,” Social Work 2(2), April 1957, pp. 70-77. Stites, Mary A. History of the American Association of Medical Social Workers. Washington, D.C.: American Association of Social Workers, 1955.

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Thornton, Janet. The Functions of Hospital Social Service. Chicago: American Association of Hospital Social Workers, 1930.

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Part 2 Working with Patients and Families

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Introduction A diversity of functions characterizes social work practice in health care settings. The articles included in Part 2 as well as Parts 3 and 4 illustrate their multiple and complex nature: they give us a range of perspective about what social workers do and why they do what they do, along with what they need to know to work in these settings. This section examines the eclectic knowledge bases needed to provide direct services to patients and families. From this panorama, a view emerges of what it is like to be a health care social worker today.

The Distinctive Knowledge Base for Health Care Social Work Practice The essential knowledge base for practice in health care is generic to all professional social work. Social workers must understand the multiple facets of human growth, the psychodynamics of behavior, and the influence of cultures, systems, and organizations that encompass the lives of clients and within which services are provided. For practice in health care settings, they add specialized, finely tuned knowledge of the psychological, interpersonal, social, and economic impact of illness and disability; of the effects of crises on individuals and families; and of the organizational and political contexts of hospital

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and social systems that directly affect health care delivery and the services it provides. Changes and additions occur continuously both in the core knowledge base underlying social work practice and in specialized knowledge of health and disease. As medical care and technology change, social workers learn about new treatment modalities and assess their implications and consequences for patients’ lives. Life-saving technological advances such as dialysis and organ transplant have wide social and psychological ramifications for patients and caregivers alike. Similarly, in vitro fertilization, genetic counseling, and sterilization techniques offer patients new opportunities and choices but also add complications and stress on individuals and families. Social workers acquire current information and take responsibility for the continuing expansion of their knowledge in the medical and psychiatric advances that affect their clients in order to be in a position to effectively help them as they experience the benefits and costs of these new technologies. Lilliston’s article on traumatic physical disability illustrates that health care social workers need and use a sophisticated, dynamic knowledge of normal affective functioning, of coping patterns, and of the complex interplay of environmental, social, and psychological factors that determines an individual’s responses to marked disability. Mailick writes about the impact of severe illness on the individual and family. She underscores the value of in-depth knowledge of coping and adaptation for work with the chronically ill and their families and caregivers; reviews how

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their needs differ at the various stages of adaptation; and identifies stage-specific social work functions. Bracht writes about the social nature of chronic disease and disability. He provides a comprehensive overview of their social epidemiology and social consequences and defines the significant roles social workers can play in alleviating their impact.

Direct Services to Individuals and Families An enduring core component of direct social work practice in health care, identified as continuity of care or “discharge planning,” has taken on increased significance in the past decade. Cost containment efforts directed toward decreasing length of hospital stays have reemphasized the critical importance of helping patients plan effectively for their discharge from acute in-patient care to home or other levels of care. The four articles included here highlight these direct service functions. Dillon portrays the nature of the problems that confront families with a sick member and reviews approaches to helping them. Written as a response to an article reaffirming social work’s role with families in health settings (Caroff and Mailick, 1985), Dillon’s article provides an independent perspective. It explores the unique role of the social worker in aiding the “illness family” and the health care “team family” in their vital interactions on the patient’s behalf. Palmer’s article on social work in a home dialysis program is generalizable to other patient populations. Palmer 136

delineates the multiple social work functions through which clients are enabled to cope better with their long-term illness and treatment. The editorial by Fields and the article by Davidson are responses to questions about social workers’ traditional function and roles in planning with patients and families for continued care after discharge from the hospital. Fields reasserts the raison d’être of this vital function. Davidson reviews the process in which the traditionally low-status functions of the “discharge planner,” notably the social worker, took on new value in face of competition by other disciplines for the responsibility and power potential of these functions in a climate of strong fiscal controls.

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Psychosocial Responses to Traumatic Physical Disability Barbara A. Lilliston, MSW, CSW At the time of writing Barbara A. Lilliston was social work supervisor, The Burke Rehabilitation Center, 785 Mamaroneck Avenue, White Plains, NY 10605. SUMMARY. Victims of traumatic physical disability experience disruptions of normal affective functioning. The sense of body image and body ego are altered in ways that are frightening or confusing to the patient. The subjective experience of time becomes present-oriented, with lime moving slowly. Grief or depression, clinically distinct responses, may further debilitate the individual. Anxiety, guilt and rage are additional emotional responses. Patients use previously existing coping patterns to manage the crisis of sudden disability. It is not the nature or the severity of the injury that exclusively influences the psychological response, but rather, it is the interaction of the person and the total environment that determines behavior. Each year, thousands of people incur traumatic injuries or illnesses that disrupt or destroy their manner of living. This paper discusses the psychosocial responses to such serious

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injuries as: spinal cord injury, amputation of a limb, stroke, or traumatic head injury. The experience and response of an individual who incurs traumatic physical loss is influenced by his unique characterological, cultural, and biological self. It is not the severity or nature of the injury alone that determines the psychological response of the victim. Rather, it is the person, his environment (meaning the social, physical and biological environment) and the ecological fit between them that determine behavior. This paper elaborates upon this thesis by discussing four independent clusters of affective/perceptive responses that may occur when a person experiences a catastrophic, sudden physical loss of functioning. Common coping strategies and implications for clinical intervention with the hospitalized client are briefly reviewed.

Affective/Perceptive Responses Disruption of Body Image and Body Ego Body image refers to the mental representation of one’s own body at any moment. It emanates from the visual perception and tactile exploration of the surface of one’s body, the sensations from the inner organs, skeletomuscular system, and skin (Moore, Fine, 1968). There is a general consistency in the mental representation of one’s body, even though the body image may be biased by psychological defensive needs. Sudden physical trauma affects the sensory response to parts of one’s body. The physical self feels less familiar in ways 139

that may be physically painful, frightening, or anxiety producing. This often constitutes the person’s first realization that he has undergone a profound crisis. While such examples of disrupted body image as the phantom pain of the amputee, or the phantom sensations of the spinal cord injured patient, are familiar to the health care professional, they are usually an unexpected and unaccountable phenomenon to the patient. Patients may not discuss these sensations, fearing them to be indicators of psychotic mentation or some form of character weakness worthy of disrespect from the staff (Stewart, 1977). The sense of mastery over one’s body and its functioning, a developmental accomplishment of early childhood, is frequently shattered by sudden injury and subsequent loss of physical function, and an effected person is vulnerable to feelings of shame, anxiety, and doubt. Preoccupation with bodily functions and with the physical self are indicators of this phenomenon. A young patient with spinal cord injury was receiving an initial bedside physical therapy evaluation. The therapist accidentally bumped into a nightstand and an object fell to the floor with a small crash. Inexplicably, the patient cried out when this happened. When the therapist asked him what was the matter, he replied that he thought the crash was his hand hitting against something. He had no ability to sense where his hand was in space, and no sense of belonging to, or controlling, the random motions of his body.

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Orientation to Time; Subjective Experience of Time The awareness of time represents a developmental milestone for all humans. Each person develops a characteristic way to experience and utilize time. Most people normally integrate a sense of past, present, and future temporal experience into their functioning, with the future orientation thought to be the most significant aspect of psychological existence (May, 1958). Persons hospitalized for sudden severe physical injury are especially prone to temporal disorientation if they are experiencing severe pain, if they are heavily medicated, and also if they experience persistent disruptions of their normal sleep/wake cycle. These factors tend to interrupt the synchronizing effects of the environment with the individual’s innate, rhythmic oscillations of mood and mentation. Such interruptions correspond with observable changes of moods (Dement, 1972). The subjective experience of time is the way time feels to an individual: whether it moves slowly or quickly; whether it is enriched or empty; whether there is a sense of past, present, and future; whether the individual has mastery and control over his manipulation of it, or feels harassed and out of control by the constant passing of time. Personality and mood greatly affect the subjective experience of time (Wessman, 1973). Time moves slowly for the depressed person. Suicidal individuals, for example, are found to be more present than past and future oriented. Binswanger (cited in Neuringer, Levinson and Kaplan, 1971) observed

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suicidal individuals as having a “congealed past” and “an aborted future.” Pain and altered body image also induce a strong present temporal orientation for the patient. His future perspective may be only as lengthy as his next round of medication that manages pain. His preoccupation with present bodily sensations and bodily functions absorbs his total attention. Furthermore, pre-existent ways of managing time (i.e., to be in control of it, to plan for the future) may now be impossible due to the severity of the disability, and the constraining nature of the institution. For most patients, the sphere of temporal focus is predominantly upon the present. The patient’s subjective experience of time is significant because of its usual incompatibility with the temporal orientation of family and staff. Many patients experience time as moving painfully slowly, and they become bored, restless, and unhappy. The staff, however, tends to experience a more dynamic sense of time. Their involvement with the institution and with the patient is compressed into an eight hour, usually hectic, work shift. Staff members involved in discharge planning introduce future perspectives to patients who may be severely restricted in their ability to relate to such matters. Family members, themselves severely affected by the patient’s sudden disability, frequently review the past and leap to the future. Feelings of nurturance and support for the loved one, and a wish to relieve the pain of the present, are especially conducive to fantasies of a happier future for the relative and his disabled loved one. Thus, the temporal orientation of patient, family, and staff, three groups of people 142

supposedly working toward a common goal, may be disparate. What is often unappreciated is the excruciating sense of imprisonment in time that the patient experiences. A quadriplegic patient complained bitterly that he was neglected by the night nursing shift. He claimed that he was never turned in bed but, rather, was abandoned for long periods of time. His physical condition showed no evidence, however, of such neglect. The nursing shift was amazed upon hearing of the patient’s complaint. They stated that they felt utmost compassion for this young man and, because of this, they actually spent more time providing services to him than to anyone else. They were hurt and indignant that their efforts were unrecognized. These two parties were functioning with entirely different temporal experiences. For the disabled patient, time moved very slowly, with nursing visits sporadically dispersed into hours that seem to last for days. To the nurses, time moved rhythmically and much more swiftly. A five minute hourly check on the patient seemed to come up so frequently, the hours moved so fast. A 55-year-old man had emergency brain surgery and was in a coma for five days. Restless and grief-stricken, his wife sat beside his bed throughout the time of his coma. In her mind she recounted their courtship and the years of their marriage. She recorded her thoughts daily in a journal. By the time her husband was discharged, she had concluded a soul-searching review of her relationship with him. She vowed that she would treasure each moment with him, and she looked forward to an intimate, loving future relationship. The patient, however, was irritable and sarcastic following his discharge. 143

He lashed out at his wife, thwarting her hopes for the future. In desperation, she read to him aloud the pages of her journal, pleading that it was now time to treat each other tenderly, as they had both been through so much, and it was time to turn the leaf on a new life. When her husband could not share in this hopeful view towards the future, the spouse called him “cry baby.” The experience of time had actually been quite different for this couple. The wife had experienced a rather lively flow of past and future orientation while her husband was either unconscious or experiencing time in only the present sphere. She was eager to launch into the future at a point in time when the patient was only beginning to understand his present. His scope of temporal experience encompassed only the immediate after-effects of his operation and the limitation imposed on his style of living. As he said in an individual counseling session “every day is a time in which I take this painful inventory of all I have lost.” After several months, he stated that he finally felt that the inventory was complete, and at that time he began to speak spontaneously of his hopes and fears of the future. He and his wife began then to share a more similar temporal perspective, and their relationship improved.

Grief and Depression The undisputed presence of loss encourages one to assume that grief or depression automatically follows severe injury. However, this position pays little consideration to the fact that affective responses are the end product of the integrative functions of character constellation. To presume depression or grief is to minimize the extraordinary capacities of coping

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strategies and characterological styles that exist in every individual. It is actually possible for an individual to experience acute physical loss, and not become clinically depressed or grief-stricken (Cook, 1976). It is also important to distinguish grief from depression. Grief can be described as the sorrow that follows deprivation or loss of a cherished person, a form of functioning, or an idea or set of hopes and expectations (Freud, 1960). Lindeman (1944-45) describes the characteristics of grief as follows: 1. Sensations of somatic distress, occurring in waves lasting from twenty minutes to an hour. A feeling of tightness in the throat, with choking or shortness of breath. A need to sigh, and an empty feeling. Waves of distress may be brought about by mental representation, or by verbal discussion with others. 2. Lack of strength. 3. Loss of appetite. 4. A slight sense of unreality, a feeling of increased emotional distance from other people. 5. Preoccupation of feelings of guilt, especially regarding negligence, wrongdoing, etc., at the time of the crisis event. 6. Often a disconcerting loss of warmth in relationships with people and a tendency to respond with irritability or anger, a wish not to be bothered by others. 7. A push of speech, a restlessness, inability to sit still, moving about in aimless fashion, continually searching for something to do, but a concurrent incapacity to initiate and maintain organized patterns of activity. 145

8. Former, unresolved grief responses may be precipitated in the course of the discussion of the recent event. Depression is characterized by a sense of low mood, variance in appetite resulting in either weight loss or weight gain, insomnia or hypersomnia, physical agitation, loss of energy and fatigue, and diminished ability to think fully or to concentrate (Diagnostic and Statistical Manual of Mental Disorders, 1980). A tremendously significant factor that distinguishes grief from depression is that a fall in self-esteem is absent in grief, but predominant in depression (Freud, 1960). The importance of distinguishing between these two emotional responses may be illustrated by the following examples: (A) A young woman, the victim of an automobile accident, abruptly began sobbing when questioned about her accident during the initial social work interview. The suddenness and intensity of the outburst surprised both the client and the worker. The client said that she felt fine before the interview, and was presently feeling overwhelmed only because of the social worker’s questioning. She associated the waves of tearfulness and despair to the emotional response she had had when her father died of cancer two years ago. She angrily refused continued social work services. Despite continued tearful outbursts throughout the course of hospitalization, as well as isolated, withdrawing social behavior, this patient was motivated and active in her rehabilitation program. She made suggestions to the social 146

worker for more humanistic hospital policies, and she left signs at night on the door of her room instructing the nurses not to rearrange the placement of her wheelchair, as she had positioned it for an independent transfer in the morning. Clearly, her self-esteem was intact. Her restlessness was more related to grief than depression. (B) A forty-year-old single parent of three adolescent daughters sought counseling, stating she had not been able to resolve her grief over the permanent, severe brain damage suffered by her oldest daughter three years ago, when the girl was sixteen years old. For the past three years, the mother had experienced fits of crying, a sense of helplessness, and extreme sympathy for her daughter’s limited functioning. She had taken a one year leave of absence from her job in order to provide more support for her daughter, and she dreaded leaving her daughter to return to work, which she had to do for financial reasons. This woman reported how she herself had been a child of great promise. However, she had impulsively married a man who was alcoholic and irresponsible. She believed she had married him out of fear that no other man would find her attractive. She also felt that her miserable marriage had ended all opportunity for personal achievement and accomplishment, excepting motherhood. In motherhood, the client felt gratification and success. Her oldest, now disabled daughter, had reminded her the most of herself as a girl, as this daughter was intellectually gifted, successful in school, and possessed many friends.

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What became apparent was the low self-esteem that the client had felt throughout her life. Her compensation for being what she felt was such a failure as a woman was that she could raise daughters who could be more successful women than she. This defensive position crumbled when the oldest daughter, the one with whom the client was most closely identified, became hurt while a passenger in a car driven by an intoxicated young man. The daughter had been victimized by an alcoholic male, just as the client felt she had been. In this situation, the client’s emotional distress was assessed to be chronic depression, not grief. Casework focused on the client’s personal adaptation and functioning. Not all people will experience severe grief or depression following an injury, but many people do. When the response is acute and prolonged, suicide is the risk of either emotion. The severely physically disabled may lack the physical ability to actively commit suicide, but passive suicide, in the form of medical noncompliance, is certainly available and there is clinical evidence of a high suicide rate in the spinal cord injured population (Trieschmann, 1980). Understanding some of the predispositions to depression is therefore essential. One of the more significant factors affecting the likelihood of depressive responses is the sense of locus of control perceived by the individual. Locus of control refers to the degree of belief that one’s behavior controls the rewards of the world. Persons with an external locus of control believe in fate, luck, chance, and the power of others. Those who have an internal locus of control believe that their own behavior controls the reward. Research of victims with spinal cord injuries shows that those who possess an external locus of control tend to be 148

more depressed following injury, while those who have an internal locus of control tend to be less depressed, or not depressed at all (Trieschmann, 1980). Another matter greatly affecting the person’s predisposition to depression is the way in which he previously gained his self-esteem (Stewart, 1977). If the person’s character style was such that he attained self-esteem from “doing” rather than “being,” and if the activities from which he derived his self-esteem are now impossible to continue because of a physical disability, then the likelihood of depression is greater.

Fear, Anxiety, Guilt, Rage A serious injury and sudden onset of disability may uproot a person’s beliefs and attitudes in ways that are extremely stressful. For instance, many people believe that the world is a place where good people are rewarded and bad people are punished; there is justice in the world and people get what they deserve (Rubin and Peplau, 1975). This “belief in a just world” is well documented by social psychological research. The belief may be viewed as an attitudinal continuum, with people’s beliefs falling between the two extremes of total acceptance or total rejection of the idea. Belief in a just world is one of the attitudes needed to support an internal locus of control. Such an individual feels confident that his own behavior can determine his rewards. The extent to which people believe in a just world has potential significance to their psychological response to the injury. A suddenly disabled person who was the victim of accident or

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disease is given a horrifying and permanent reminder of the world’s injustice. If the person formerly believed in a just world, he must somehow harmonize the dissonance between what he expected life to be, and what it now has revealed itself to be. One typical response is outrage at the precipitant. In these situations, legal litigation may become tremendously significant to the victim, who sees litigation as a means to retaliate and right the wrong. Great amounts of psychic energy may be funneled into these efforts, and the patient may become totally preoccupied with legal transactions. Another response of a patient in this situation is anxiety. It is frightening and stressful to learn that one has misperceived the world. Trust is shattered and, with it, equanimity and security. For all patients, regardless of their position on the just world belief, anxiety is related also to their fears about the outcome of the disease or the disability, and their ability to cope with the future (Taylor and Taylor, 1980). Anxiety is also related to the symbolic meaning of the affected part of the body (Stewart and Rossier, 1978). For example, incontinence may symbolize disgusting regression to the patient, or facial disfigurement may represent loss of identity and worth. A thirty-two-year-old single woman with an MBA and a well-launched career as a corporate executive was the victim of a car accident that produced a gait disturbance and slight cognitive impairment. She was unable to return to her previous employment, but maintained hope that rehabilitation would enable her to do so. She became completely preoccupied with a liability law suit, keeping extensive journals of her pain and suffering, calling her attorneys daily, and becoming frantic and enraged when she felt the attorneys 150

were not extraordinarily interested in her case. She admitted to feeling she should be certain to demonstrate each of her symptoms to her physical therapist during her therapy sessions, in order to supply additional documentation that her difficulties were chronic. She reported that she had lost her trust in experts whom she had formerly respected, and that the world was now a nightmarish place. She experienced episodes of acute anxiety and fears about her future, and rage for having been repeatedly victimized, first by the automobile accident, and subsequently by lawyers, doctors, and friends. Perhaps the most excruciating psychological response of the injured person who formerly believed in a just world is the guilt that he feels for somehow failing to earn the good reward, and for somehow having done something to deserve the bad punishment. More likely to possess an internal locus of control, such a person is prone more to guilt and anxiety than depression. The affective response is painful and reduces the person’s otherwise capable self-reliance and autonomy. Guilt may be experienced, also, in the obvious instances where blameworthy events led to the patient’s present dilemma (Taylor and Taylor, 1980). In instances where drugs and alcohol, or serious errors of judgment occurred, the victim’s guilt is understandable, but potentially overwhelming. A serious complication is the debasement of these victims by others (including medical and rehabilitative personnel) who see the person’s condition as being a deserved consequence of bad behavior. (Thus their own belief in a just world is supported.) Frequently, this induces the patient to play the role of “repenter.”

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Coping Behaviors It is important to understand the difference between defense mechanism, coping, and adaptation when developing assessments and treatment plans. This section will define these terms, enumerate several strategies for coping, and briefly discuss conceptualizations of the process of coping. Defense mechanism refers to a specific method of the ego to ward off danger. The danger arises because of the threat of eruption into consciousness of a repressed wish which has become associated with some real or imagined punishment (Moore, Fine, 1968). Defense mechanisms operate to avoid anxiety and pain often related to long-standing instinctual conflicts (Stewart, 1977). Coping is an adaptive response to abrupt change and emotional discomfort. Perlman (1975) defines coping as the effort to deal with new and problematic situations, or to deal in a new way with an old problem. White (1976) states that coping refers to adaptation under relatively difficult conditions. He describes coping as response to a drastic change or problem that defies familiar ways of behaving, requires the production of new behavior, and induces uncomfortable affects. Caplan (quoted in Moos and Tsu, 1976) views coping as two related tasks. One task is to respond to the external situation and the other is to respond to one’s feelings about the situation. Both tasks are handled independently and not simultaneously. Therefore, there may be an acute phase in which energy is directed at minimizing the impact of the

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stress and feeling may be denied while attention is directed at practical matters. A reorganization phase occurs when the new reality is faced with a more complete affective response. Defense, mastery and coping belong to the greater category of adaptation. “Adaptation is something that is done by living systems in interaction with their environments” (White, 1976). Using a military metaphor, White states that adaptation may call for delay, strategic retreat, regrouping of forces, abandoning of untenable positions, seeking fresh intelligence, and developing new weapons. Adaptation is most likely the desired goal of those who cite acceptance of disability as the ultimate goal of adjustment. Clinicians working with the hospitalized patient will most likely be observing the coping mechanisms used by the individual to relieve the pressures of the uncomfortable feelings of fear, anxiety, anger, grief and depression. General coping strategies that serve to maintain comfort are required at all times, and the suddenly physically injured person will be most likely to use strategies previously developed and incorporated into living at earlier times of life (Mailick, 1979). Weissman (1974) defines 15 coping strategies used by cancer patients, but the same coping patterns have been applied to other types of disabling physical processes (Stewart, 1977): 1. Rational/Intellectual: Seek additional information regarding stressful situations. 2. Shared Concern: Talk with others about problems. 3. Reversal of Affect: Laugh it off. 4. Suppression/Isolation/Passivity: Don’t worry, close off feelings, wait and see. 153

5. Displacement: Distract yourself with activities. 6. Confrontation: Take positive concerted actions based on present understanding. 7. Rationalization/Redefinition: Accept, rise above it, make a virtue out of necessity. 8. Fatalism: Accept stoically; prepare to accept the worst. 9. Acting out: Do something (ambiguous, impractical, reckless). 10. Repetition: Use plans made in similar situations in the past. 11. Tension Reduction: Eat; smoke; use drugs. 12. Stimulus Reduction/Avoidance: Withdraw socially, get away. 13. Projection: Blame other, externalize. 14. Compliance of Authority/Role Modeling: Do what you are told. 15. Masochistic Surrender: Seek blame, atonement, sacrifice. The ubiquitous nature of guilt responses merits special consideration of three coping mechanisms frequently used to defend against this emotion (Gordon, 1983). The first is projection of blame. The person who feels guilty about his own dilemma will sometimes blame someone else or something else for his difficulties. Two examples of this are the patient who blames the highway department for not marking the road on which he had an accident, despite the fact that the person was intoxicated and speeding at the time of the event, or the person who claims that a better physician could have corrected his disability.

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A second way of defending against guilt is getting mad at the displeased person. In this instance, the individual feels guilty when he believes that his injury or disability has upset another person. He responds by directing anger at this person, frequently generating punitive rebuttals from him. Such dynamics are operative when the patient behaves in a provocative manner to family or staff. A third strategy for coping with guilt is sharing the guilt. The guilt ridden person attempts to dislodge guilt by having others become guilty. This is frequently the dynamic occurring when staff or family members find themselves feeling guilty and miserable for being healthy, in light of the patient’s disabilities. Successful coping strategies are only one critical factor to the adjustment to sudden loss. Family support, financial resources, internal psychological factors such as the character trait of creativity and preference for interpersonal support, and position in the life cycle, contribute greatly to the response of sudden loss. For injuries that are permanent, time plays a critical factor: for example, it may take two to four years to learn to live with the disability of spinal cord injury with some amount of comfort and satisfaction (Trieschmann, 1980). While there is no objective evidence to support popular stage theories of adjustment, many theorists do conceptualize a process of adaptation to the various psychological responses evoked by sudden loss. Lindeman (1944-45) describes grieving as a process of emancipation from the deceased object, readjustment to a new environment, and formation of new relationships. Bowlby (1961) views the adjustment to 155

loss as a process of detachment, mourning, and reattachment to a new object. Cogswell (Trieschmann, 1980) describes the process of adaptation of spinal cord injured patients to their new role involving: (1) abandoning the old role; (2) identifying the new role; (3) overly emphasizing the new role of mastery, and (4) integrating the new role into one’s total constellation of roles.

Implications Intervention

for

Therapeutic

Realizing that not all people react to an event in the same manner requires one to individualize each assessment of psychological response. Such an assessment needs to consider the individual’s psychological development, his style of coping, his way of interpreting his world, and his style of learning new material. One also needs to consider the nature of family involvement and their capacity to be supportive. These factors will have as much bearing upon the individual’s psychological response to the injury, as does the nature or severity of the injury itself. Interventions must take into consideration the observable affective responses of the patient or family and the preferred patterns for coping used by these people. This may be accomplished by ascertaining what were the formerly preferred coping techniques, and encouraging their utilization in the present situation (Stewart, 1977). For instance, a grief stricken family member, unable to initiate meaningful activity but restless and filled with energy, might be requested to obtain medical information, etc., if that

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person’s preferred coping strategy has been to seek information, or to distract oneself with activities. An anxious patient may benefit from peer involvement and group interaction if talking with others about problems has been a preferred coping strategy. Consideration needs to be given to the inordinate amount of fear and anxiety that hospitalized individuals may be experiencing. Some amount of anxiety avoidance must be considered nonpathological and must be tolerated (Taylor and Taylor, 1980). There is frequently a surge on the part of the staff and family to “help the patient to accept his disability.” While appearing to be a worthy goal, it often is not. The urgency towards a patient’s acceptance of disability more frequently reflects the staff’s or family’s need to restrict the patient’s affective response, and to shortcut painful issues. As such, it constitutes an unfair attack on the patient’s response, and it places the patient in the position of being the passive recipient of others’ treatment plans. The clinical tools of analytic neutrality seem to be unfortunately abandoned when dealing with those who have incurred acute loss. Sanctions to confront the patient with “the reality of his situation and force him into a period of depression, while he works out his acceptance of his losses” (Nemiah, cited in Cook, 1976) fail to explain why such a radical departure from the generic principle of neutral, empathic interaction between patient and mental health practitioner must occur. One of the greatest clinical services a social worker can offer is the highly therapeutic technique of nonjudgmental listening. Anderson (1979) states that therapists are more 157

likely to do active, nonjudgmental listening when they maintain a flexible frame of reference and are able to be free of preconceived assumptions or theory that must be proven.

Conclusion People of all ages, ethnic, cultural, biological, and psychological compositions incur acute physical loss. The determinants of their response to acute loss are much less related to the disabling condition than to their own individual style of functioning. This individual style, when brought to and incorporated into the crisis event, constitutes the psychological responses to severe loss. Some frequently occurring responses have been delineated in this paper. Patients may experience some or all of these phenomena.

Notes This paper is an adaptation of a presentation at the Department of Social Work, Hospital for Joint Disease, New York, January, 1984. Reprinted from Social Work in Health Care, Volume 10(4), Summer 1985.

References American Psychiatric Association. Diagnostic and statistical manual of mental disorders (3rd ed.). Washington, DC: Author, 1980. 158

Anderson, G.D. Enhancing listening skills for work with abusing parents. Social Casework, 1979, 60 (10), 602-608. Bowlby, J. Process of mourning. The international Journal of Psycho-Analysis, 1961, 42(4-5), 317-340. Cook, D. W. Psychological aspects of spinal cord injury. Rehabilitation Counseling Bulletin, 1976, 19 (4), 535-543. Dement, W. Some must watch while some must sleep. New York: Norton, 1968. Freud, S. Mourning and melancholia. In J. Strachey (Ed. and Trans.), The standard edition of the complete psychological works of Sigmund Freud (vol. 14, pp. 237-258). London: Hogarth Press, 1960 (original work published 1917). Gordon, P.E. Development of conscience. Unpublished manuscript, Institute for Contemporary Psychotherapy, New York, 1983. Lindeman, E. Symptomatology and management of acute grief. American Journal of Psychiatry, 1944-45, 101, 141-148. Mailick, M.D. The impact of severe illness on the individual and family: an overview. Social Work in Health Care, 1979, 5 (2), 117-28. May, R. Contributions of existential psychotherapy. In R. May, E. Angel, & H. Ellenberger (Eds.), Existence. (pp. 37-99). New York: Simon & Schuster, 1958.

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Moore, B. & Fine, B. (Eds.). A glossary of psychoanalytic terms and concepts. New York: The American Psychoanalytic Association, 1968. Moos, R.H. & Tsu, V.D. Human competence and coping: an overview. In R.H. Moos (Ed.). Human Adaptation, (pp. 3-16), 1976. Neuringer, C., Levenson, M. & Kaplan, J. Phenomenological time flow in suicidal, geriatric and normal individuals. Omega, 1971, 2 (4), 247-251. Perlman, H.H. In quest of coping. Social Casework, 1975, 56 (4), 213-225. Rubin, Z. & Peplau, L.A. Who believes in a just world? Journal of Social Issues, 1975, 31 (3), 65-89. Stewart, T.D. Spinal cord injury: a role for the psychiatrist. American Journal of Psychiatry, 1977, 134(5), 538-541. Stewart, T.D. & Rossier, A.B. Psychological considerations in the adjustment to spinal cord injury. Rehabilitation Literature, 1978, 39 (3), 75-80. Taylor, M.E. & Taylor, D.C. Disability, fear and anxiety. In D.S. Bishop (Ed.), Behavioral problems and the disabled: assessment and management, (pp. 52-70). Baltimore: Williams & Wilkins, 1980. Trieschmann, R.B. The psychological, social and vocational adjustment to spinal

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cord injury. In E.L. Pan, T.E. Backer, & C.L. Vash (Eds.), Annual Review of Rehabilitation, vol. 1 (pp. 304-318). New York: Springer, 1980. Weisman, A.D. (1974). The realization of death. New York: Aronson, 1974. Wessman, A. Personality and the subjective experience of lime. Journal of Personality Assessment, 1973,37, 103-114. White, R.W. Strategies of adaptation: an attempt at systematic description. In R.H. Moos (Ed.), Human adaptation, (pp. 3-16). Lexington: Lexington Books, 1976.

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The Impact of Severe Illness on the Individual and Family: An Overview Mildred Mailick, DSW At the time of writing Dr. Mailick was Associate Professor, Hunter College School of Social Work of the City University of New York, 129 East 79th Street, New York, NY 10021. This paper was presented at a seminar for social workers sponsored by the Brooklyn Tuberculosis and Lung Association, Inc., June, 1978. SUMMARY. The course and outcome of severe chronic illness are decisively affected by social and emotional variables. The conceptual approach of this article emphasizes an understanding of the individual, the family, and health care personnel as all facing a series of adaptive tasks in relation to the illness. Each of three phases of the illness—the diagnostic, chronic, and end stage—poses special tasks and requires different defenses and coping capacities from the patient, family, and health care personnel. These are discussed as interdependent factors in a holistic framework. It is common to begin a discussion on severe, long-term, or chronic illness by referring to the importance of considering the patient as a whole person. Social work has long advocated this position, and by now, everyone agrees that it is no longer

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acceptable to treat a person as if his or her illness were a separate entity which can be dealt with segmentally without consideration of the individual in whom the disease is lodged or of those in his or her social surroundings. The purpose of this paper is to expand on the view of the individual suffering from the impact of illness, providing for consideration a conceptual model that emphasizes ideas of coping and adaptation, and setting the individual within a framework which includes the family and other social communication networks as well as the non-human environment.

A Revised Psychosocial Framework Since the 1930s a voluminous literature has been produced about psychosomatic medicine, a term that has been so expanded as to be overinclusive, and therefore significantly reduced in precise meaning. The idea advanced by those interested in the psychosomatic approach, however, that the mind and the body do not function as two separate sectors, but as a unitary whole, and that the individual is best viewed as a biopsychosocial entity, has been widely accepted (Travis, 1976). Few question that there are some psychosocial factors in the etiology of disease. Research efforts directed at finding a causal (linear) relationship between specific emotional conflicts and somatic illnesses (Lazarus, 1977), or at establishing a mediating mechanism by which the body defends itself against stress, have thus far been largely unsuccessful (Selye, 1956). There was early optimism engendered by the hope that the discovery of a psychological

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etiology for some somatic illnesses would lead to the alleviation of these diseases by psychoanalysis and other forms of psychotherapy (Wittkower, 1977). This optimism has dissipated, only to reappear sporadically in speculative, poorly documented studies, such as those relating personality structure and cancer, heart disease, etc. What has been more validly accepted is that emotional factors to play a predisposing and precipitating role in the onset of illness, but they are only a part of the mosaic of variables that contribute in varying amounts to the genesis of an illness. There is a growing recognition that more fruitful avenues of exploration may lie not in the investigation of psychological causation of somatic illness, but in the way in which the course and outcome of illness are affected by psychosocial variables once it has taken hold. Social and emotional factors may exert a decisive effect on the way the somatic illness develops, the degree of impairment that is engendered, and the way in which the individual and family adapt to it. This area of inquiry is an appropriate and fruitful one for social workers. It requires, however, a conceptual model that emphasizes an understanding of the individual as facing a series of adaptive tasks necessitated by the illness. The foundations of this conceptual approach are to be found in Helen Harris Perlman’s (1968) emphasis on the capacity for personal change and growth in adulthood, the crisis intervention theorists (Parad, 1965), the attention to situational variables as important in behavior and change (Kaplan, 1962), and the more recent focus on the ecosystems approach of Carel Germain (1977).

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Emphasis on Coping and Adaptation Much of the literature of medical social work in the past drew on a psychoanalytic base for understanding the behavior of people faced with illness. It assessed patients and families in language of defense mechanisms such as regression, denial, and dependency, rather than in terms of coping and mastery. For example, in case record after case record, patients who have suffered cardiac problems have been labeled “cardiac deniers” or “cardiac cripples” and are described as using excessive denial or being overly dependent. These defenses are often related to the patient’s premorbid personality. In one study, about 35% of the surviving heart patients and their families were judged to need ongoing psychotherapy for problems not specifically related to their medical condition. The onset of their difficulties were seen as having occurred at an earlier stage of life, and were only exacerbated by the cardiac crisis (Bromberg & Donnerstag, 1972). It is important to recognize regression, dependency, denial, and other defenses as attempts to protect the self from ego disorganization under the impact of illness. However, they should not constitute the sole unit of attention of the social worker or other health worker to the exclusion of recognition of patterns of adaptation or efforts to deal with the environment and to restructure the life style of the patient and family. It is likely that a patient and family will use a mix of defensive and coping mechanisms (Adams & Lindeman, 1974). Since the definition of the problem usually affects the type of treatment offered, excessive attention to pathology, premorbid behavior, and personality defects might eventuate in less than

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active attention to helping the patient and his or her family to find a new way of living. The distinction between defenses and coping is sometimes considered to be semantic. At one level all defensive operations of the ego are an attempt to adapt, either to internal or external pressures that create threatening anxiety. At another level, the concepts can be at least partially separated, with the defensive functioning involving a protection of self from the threat of disorganization of the ego and the coping strategies referring to those in which attempts are made to master the environment, to redefine the life tasks, and to resolve problems created by the illness (Adams & Lindeman, 1974). Emphasis on coping suggests an approach which encourages a delineation of tasks created by the illness for the individual and the family. These are complex and changeable and may be divided into three main stages. The first set of tasks are connected with the onset of the illness, the diagnostic phase; the second group is associated with adaptation to the long-term or disabling nature of the illness; and the last group deals with the ending of the illness episode, either through cure, remission, or death. While for heuristic purposes each phase will be described separately, it is recognized that they do not represent three compartmentalized time periods, and that patients often go back and rework the tasks of earlier stages over and over again.

The Diagnostic Phase The use of crisis theory has been helpful in identifying a series of tasks that the affected individual and the family must 166

accomplish at the onset of the illness. The first of these is dealing with a period of uncertainty during which the symptoms of the patient have been noted but not definitively diagnosed. Whether the diagnostic procedures are performed in the doctor’s office or in a hospital or clinic, the patient and family must handle together and separately the anxiety of not knowing, the fantasies and fears about what may be wrong, the guilt, and the physical and emotional strain of tests, often involving strange machines or painful procedures. Perhaps most stressful is the time element. There are often considerable lapses of time before the diagnosis is definitive, and the patient and family must balance hopefulness with some preparation for the possibility of a feared diagnosis. The diagnostic period is quite variable in time, ranging from almost immediate diagnosis to a process lasting over a number of years, as is the case in multiple sclerosis. The stress of this period is exacerbated for clinic patients if they encounter a different physician or other health personnel at various stages of the diagnostic period. Many people cope with the crisis of diagnosis as an upset in the relatively “steady state” of their lives. They employ the problem solving mechanisms that have worked in the past for them with greater or lesser success, depending on the severity of the illness, its implications for the future in the patients’ and the family members’ minds, and on the social supports available to them. The diagnosis of some types of illness may be met by initial avoidance of its full and realistic meaning, by employment of tactics of delay, cognitive distortion, and even some resignation.

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Robert W. White suggests three important and interrelated variables in adaptive behavior: the procurement of an appropriate amount of information to guide action, the maintenance of internal balance and organization so as to allow the individual to engage in purposeful and volitional activity, and the preservation of enough autonomy to allow for flexibility of options (White, 1974). Applying this model to the diagnostic phase would require attention first to regulation of information about the diagnosis of the illness and implications for its course and outcome. Adaptive behavior requires the right amount of information so that the person is neither flooded with too much input nor forced to seek vainly for enough knowledge to use in keeping distressful affect within manageable bounds and acting to ensure bodily integrity and self-esteem. The regulation of information and its utilization by the individual and family is a crucial task of the diagnostic phase, and one in which the individual may need the sensitive assistance of all members of the health care team. Avery Weisman discusses denial and acceptance as two complementary processes by which his patients with cancer regulated information. While the patient might begin by denying the diagnosis of malignancy, he or she might go on to accept the diagnosis of the illness, but deny the feared implications of it (Weismann, 1972). This process is in the service of preventing the paralyzing sense of loss and depression that would be disorganizing to the individual if information were not regulated. However, slowly the individual and family must integrate the diagnosis, its meaning, its course, and its outcome. The concept of autonomy is closely related to the regulation of information. Whose responsibility is it to regulate the 168

information available to a patient? Can we trust to the psyche of the patient to take full burden for the monitoring of input? Will the patient only ask what he or she is able to tolerate, and will he or she only take in on a cognitive level what is bearable? Is it the family who must make such decisions? Or is it incumbent on the health care professional to control the availability of information? These questions are disturbing and difficult and raise ethical issues for all. What seems important is that the patient be able to sustain the maximum amount of freedom and autonomy. In order to exercise the freedom, the patient must have the necessary information for decision making. The current attention to the rights of patients—e.g., the right to know or not know about his/her medical condition, the right to informed consent, the right to choose to have or not to have treatment—are all implicated by this idea. Also, the idea of autonomy implies the presence of alternatives among which to choose. Attention must also be given to the level and quality of services available to patients so that the right is not a pretense. The third variable in adaptive behavior during the diagnostic phase is the maintenance of the internal organization of the individual and family. The individual and the family must both perform certain tasks in order to maintain their balance. The blame, guilt, and shame that are sometimes engendered by the illness, as well as the anxiety and depression, must be dealt with. These are not pathological responses, but reactive to the crisis of diagnosis. The family may respond by a temporary change in patterns of communication. For a period of time its patterns of interaction may become rigid, decrease or increase in quantity, or come to lack spontaneity. Family members may become temporarily less productive and creative as a family and may withdraw from contacts with 169

outside social networks. These are responses to the danger to the individual and family balance. Until they can reintegrate adapting to new roles and relationships, their main efforts are toward survival and the integrity of the family and of the individual. A temporary breakdown is not predictive or diagnostic of individual or family pathology. In most cases it is followed by a period of emotional recovery. How this takes place is dependent on a series of factors. The nature of the individual personality structure and the nature of the diagnosis are very important, but many other variables affect individual and family integration. Families with a cushion of emotional and material resources have a better chance of making an effective recovery. Recovery for families who before illness lived close to the poverty line, were relatively socially isolated, were structurally inflexible, or had poor communication patterns and affectual relationships may have more difficulties. However, the pre-morbid history of the family is not an exact predictor of its capacity to cope and even to grow as a result of the impact of the diagnosis. The altered view of the family member who is diagnosed as ill sometimes allows for a disruption in the old patterns and the possibility of restructuring of relationships. E. James Anthony describes a family in which the alcoholism of the husband was severely straining the marital bond. When he was diagnosed as having tuberculosis, he was described as “coming to his senses.” The marital relationship improved, more positive affect was communicated, and different patterns of nurturance were adopted (Anthony, 1970).

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The role of the social worker during the crisis of diagnosis is critical. In times of stress individuals and families are more open to intervention, so the opportunity exists to help initiate or encourage an adaptive process. The social worker should be ready to provide services that will support the patient and the family’s social functioning without taking away their autonomy. During the diagnostic period the patient and the family may require help in meeting emotional and material needs. The social worker facilitates the expression of feelings, provides and/or helps the patient and family to seek appropriate information, encourages their active involvement in the diagnostic process, suggests resources that might be useful, and helps them to understand and accept the diagnosis. Perhaps most importantly, the social worker encourages the maintenance of the self-esteem and emotional integrity of the patient and the family. This sensitive and difficult work requires a high level of self-awareness of social workers. They must know their own reactions to disruptive illnesses and respond to the patient and family without losing their own sense of balance or identity. They must have enough emotional distance from the patient so as not to be inundated by the patient’s fear, shock, shame, or anger, yet remain close enough to provide empathy and support. They must help the family accept the diagnosis and begin the work of reorganizing their lives.

Adaptation to Long-Term Illness Sooner or later, the diagnostic phase draws to a close. The individual and family have dealt with the crisis of diagnosis

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and must go on to deal with the ongoing tasks of the seriously or chronically ill or disabled person. A successful resolution of the first stage provides the potential for later successful adaptation to the second, but in some cases the coping mechanisms that were most useful in the initial diagnostic period need to shift or change. This is especially so when the expectation is that of a lengthy illness or of relatively irreversible disability in which the individual’s capacity to cope with the physical and social environment is impaired. While every effort is made to encourage the restoration of the physiological and psychological functioning of the individual to his or her maximum level, there should be a concomitant attempt to evaluate the physical, social, and emotional environment for obstacles that might prevent the individual and the family from coping as normally as possible (Adams & Lindemann, 1974). Alterations in interpersonal relationships, role expectations, and physical space that allow the greatest amount of self-sufficiency need to be considered. Even after efforts to encourage as normal functioning as possible are made, the patient is faced with the task of adapting to ongoing discomfort, pain, and loss of physical control as well as changes in physical appearance. The family on its part must deal with its feelings in tolerating the patient’s suffering and anguish, its sense of powerlessness (especially difficult for parents to bear), and its ambivalence, anger and guilt, as well as its fear for the patient and for themselves. A further set of skills often overlooked is that which the individual utilizes in learning how to interact and respond to physicians and other health personnel. He or she must learn how to take 172

as active a role as possible in planning for his or her own care, find a way to be active in his or her own care, and deal with the attitudes and behavior of health workers (Moos & Tsu, 1977). Especially difficult for the patient is finding an appropriate way to be assertive and even to express anger without endangering the relationships with physicians and other health personnel. The family, as a group, must also form relationships with health personnel, sometimes making plans on behalf of the patient. The family must find a way of balancing the demands made upon them for rearranging their lives, so as to be able to provide special care to the patient that is often the expectation of health personnel, and to advocate for the other needs of family members for continued growth and differentiation. Another task for the individual and family is the management of role shifts. For the family this requires the delicate balance of managing to take over and perform the former functions of the patient while not shutting him or her out of the family life. For the patient there is a major task in the acceptance of a revised self-image. In contrast to the temporary assumption of a sick role described by Talcott Parsons (1958), the patient with a chronic illness or disability must integrate a permanent change in perception of self, of body image, and of personal aspirations. The family, the health care workers, and other members of the social network of the patient are very important contributors to the process of revision of self-image. To the extent that they provide response and feedback that encourages the self-esteem of the patient at the same time as it reflects acceptance of him or her as a person, they promote potential for healthy coping.

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Finally, the importance of communication for the patient and family must be emphasized. A major fear of chronically ill people is loneliness. Isolation, whether caused by the withdrawal of the patient or the disengagement of those around him or her, is difficult to bear. The maintenance of communication is not easy to manage; the patient may be ambivalent, fearing that he may lose the tolerance of others if he communicates his or her concerns about illness, pain, etc., to others, and the family members may not be free to share their negative feelings with the vulnerable patient. The social worker has a uniquely important set of tasks during this stage of the illness. The patient and family may need help with age-specific conflicts exacerbated by the chronic illness. These may have been deferred during the diagnostic phase, but must be faced once it is clear that a long period of illness or disability can be expected. Problems related to self-image, sexuality, identity, peer relationships, work roles, autonomy, and authority are commonly dealt with. Material resources may be provided and referrals made to a whole network of social and financial services. The social worker may work intensively with the patient and/or the whole family to help them to accept the reality of the ongoing illness. Implications for all members of the health team of this second stage of illness are important for the social worker to explore. Beyond the necessity for each staff member to be technically competent in his/her own field, all must understand the importance of the quality of their interactions with the patient and family. All health care workers interacting with the patient and family evoke responses far out of proportion to what might be expected in other kinds of social interactions. Since the health care workers are often in positions of 174

authority or are perceived as having some kind of power over patients, they sometimes assume symbolic as well as realistic importance. What they do or say has great significance in the promotion of the mastery over the tasks facing the patient and family. This requires of the professional not only perceptivity to his/her own feelings and attitudes about chronic illness and disability, but some level of concordance in approach of all of the team members of basic values in relation to the patient and family. These include the view of the patient as a whole individual, his or her right to as much autonomy and opportunity for growth and development as possible given the parameters of the disability and the right of access to society’s benefits and services. The social worker often takes an active role in monitoring the collaborative process of the health care team, ensuring that they all work toward helping the patient adapt productively to his or her illness.

The Ending of the Episode of Illness The cessation of an episode of illness may be a result of cure, of remission, or of terminality. Much has been written about the adaptive tasks for the patient and family as death becomes imminent. It is strange that the concept of coping and adaptation as opposed to defenses and pathology has received more attention in relation to the period of terminality than at any stage of illness. Freud, in Mourning and Melancholia, clearly differentiated between normal grief experienced after a loved one’s death and pathological depression. Erich Lindemann (1965) described the grief work of the normal individual, delineating the intrapsychic tasks of “working through” the loss. Family tasks of grieving have also been outlined (Goldberg, 1973). These include facilitating the

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process of mourning for all members, assigning the proper role to the memory of the deceased, reassigning roles and expectations among the remaining members, and establishing new or altered relationships outside of the family. A different set of tasks is required if an episode of illness is followed by a remission. Very little attention has been paid to this phase, which can best be characterized as requiring the participants to develop the capacity of balancing opposing emotional tasks. Expectations of both the individual who was ill and the family must again be altered, roles reassigned, and a new balance established. In essence, “remission” is a retrospective word. It is only at the end of a remission that there is certainty that it was a temporary cessation of illness rather than a permanent “cure.” A major task for the individual and the family is dealing with this uncertainty and the regulation of hopefulness. To gain no relief from even a temporary respite from illness and to focus only on the likelihood of its recurrence despoils a period which would otherwise allow for a replenishment of emotional and physical resources. Yet to completely deny the possibility of another episode of disease may lead to renewed crisis and despair when it occurs. Thus, balancing requires that the family as well as the patient hold both possibilities in mind, assigning more importance to present improvement and capacities to return to normal functioning, and yet accepting the inevitability of further possible episodes of illness. The individual may be required to maintain special health procedures during the remission in order to prevent the recurrence of symptoms. These may include continued 176

medication, trips to the physician’s office or clinic, special exercises, or other regimens. He or she must monitor his bodily responses so as to be alert to new signs or symptoms which may be a portent of further illness, and do this without becoming hypochondriacal. The difficulty in engaging in these tasks at the same time as one is reestablishing relationships and reengaging with life is great. The family has similar tasks. It must balance its image of the patient as presently well, but eventually ill again. It must allow the patient back into its midst, facilitating the reacquisition of as many of the old roles and responsibilities by the patient as possible. This can be a very difficult readjustment as the family may in fact have found a new way of functioning without the patient, and some members may be reluctant to relinquish their new roles. They may have engaged in anticipatory grief work, and have largely accomplished the task of working through the loss of the patient. It is difficult then for them to cathect with him or her except as a sick, disabled person. A major task facing the family is the management of positive and negative affect between members. Under the stress of illness, personal animosities, angers, and disappointments may often need to go unexpressed. During a remission, they are reactivated. The family must cope with the paradox that just when things are going better, there is an increase of conflict and hostility toward each other. Each may feel that, in the absence of crisis, he or she should be able to meet his or her own deferred needs and gain restitution for earlier sacrifices. A flexible family structure can allow for conflict and the expression of anger as well as the redevelopment of

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positive, but appropriate affect toward the patient in remission. The social worker can offer significant assistance during this period. Sometimes, however, the family may wish to be rid of all possible reminders of the patient’s illness and reject contact with members of the staff. Social workers and other staff members may have a great investment in the patient and family and may need to deal with their real need to stay in touch with them. To the extent possible, it is important for social workers to demonstrate continued interest in the patient and family, and to facilitate sufficient communication so that there is easy access if problems arise. If this is not done, the family may feel that they cannot bother the health care team and may be unwilling to recontact them without definite signs of a recurrence of illness. This creates an obstacle to services that are sorely needed. Balancing is thus required of the health care workers, allowing the family and the patient autonomy and the right to be independent at the same time as they demonstrate continued interest and support.

Conclusion Strong emphasis has been placed on the concept of adaptation to illness as a whole process, ecological in nature, involving the patient, his or her family, and the health care staff in a process that occurs over time. The concept of collaboration is of critical importance, not only in improving the quality of life and enhancing the fullest possible adaptation for the patient, but in dealing with the enormous emotional and physical drain on the staff that is associated with caring for

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sick people. All of the staff are interdependent, and all are under pressure to meet the needs of the patient. Social workers can play a key role in helping the staff to develop mutually supportive relationships so that they can tolerate the rage, pain, depression, regression, and fear of patients and families. Each member of the health care team has his or her own special knowledge base, value system, and methods of communication that can create barriers to collaboration. A lack of firm control or understanding of professional function adds to the ambiguity and role strains. Just as it is important to identify adaptive tasks for patient and families, it is also important for staff to gain mastery of skills in working together in an interprofessional group. What should emerge from the conceptual framework presented in this article is a holistic approach to social work practice with severely and chronically ill patients and families.

Note Reprinted from Social Work in Health Care, Volume 5(2), Winter 1979.

References Adams, J., & Lindeman, E. Coping with long term disability. In G. Coelho, D. Hamburg, & J. Adams (Eds.), Coping and adaptation. New York; Basic Books, 1974, 127-138, 134-137. Anthony, E. J. The mutative impact of serious mental and physical illness in a patient on family life. In E. J. Anthony, &

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C. Koupernik (Eds.), The child in his family. New York: Wiley-Interscience, 1970, 131-163. Bromberg, H., & Donnerstag, E. Counselling heart patients and their families. Health and Social Work, 1977, 2 (3), 159-172. Germain, C. B. An ecological perspective on social work practice in health care. Social Work in Health Care, 1977, 3 (1), 67-76. Goldberg, S. Family tasks and reactions in the crisis of death. Social Casework, 1973, 54, 398-405. Kaplan, D. M. A concept of acute situational disorders. Social Work, 1962, 7 (2), 15-23. Lazarus, R. Psychological stress and coping. In Z. Lipowski, D. Lipsitt, & P. Whybrow (Eds.), Psychosomatic medicine, New York: Oxford University Press, 1977, 16-17. Lindeman, E. Symptomatology and management in acute grief. Crisis Intervention. New York: Family Service Association of America, 1965. Moos, R., & Tsu, V. D. The crisis of physical illness: An overview. In R. Moos (Ed.), Coping with physical illness, New York: Plenum Medical Book Company, 1977. Parad, H. J. Crisis intervention: Selected readings. New York: Family Service Association of America, 1965.

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Parsons, T. Definitions of health and illness in the light of American values and social structure. In E. G. Jaco (Ed.), Patients, physicians and illness. New York: Free Press, 1958. Perlman, H. H. Persona, social role and personality. Chicago: University of Chicago Press, 1968. Selye, H. The stress of life. New York: McGraw-Hill, 1956. Travis, G. Chronic illness in children: Its impact on child and family. Stanford: Stanford University Press, 1976. Weisman, A. On dying and denying, New York: Behavioral Publications, 1972. White, R. Strategies of adaptation: An attempt at systematic description. In G. Coelho, D. Hamburg, & J. Adams (Eds.), Coping and adaptation. New York: Basic Books, 1974, 47-68. Whittkower, E. Historical perspective. In Z. Lipowski, D. Lipsitt, & P. Whybrow (Eds.), Psychosomatic medicine, New York: Oxford University Press, 1977. 7

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The Social Nature of Chronic Disease and Disability Neil F. Bracht, MA, MPH, ACSW At the time of writing Mr. Bracht was Director and Professor, School of Social Work, University of Minnesota, 400 Ford Hall, 224 Church Street S.E., Minneapolis, MN 55455. A revised version of this paper was presented at the Johns Hopkins Hospital Margaret Brogden Symposium on September 30, 1977. SUMMARY. Recent epidemiologic data on the changing scope and distribution of chronic illness and disability in the United States is analyzed in terms of medical, social, and economic costs. Research findings regarding current gaps in health and social service delivery systems for patients and their families are reviewed. Implications and recommendations for public policy and program changes are discussed, including practice directions for social workers. The prevention and treatment of social conditions associated with chronic illness and disability pose complex problems for health care professionals and social policy leaders. The increase in chronic illness and accompanying medical, social, and economic costs have highlighted serious gaps in both the delivery and financing of social and health services. In their

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study of chronic illness and the effects of continued care, Katz and his associates state that few if any communities in the United States are prepared to meet the simplest needs of the existing population of chronically ill persons who live at home. In spite of vigorous efforts at demonstration and innovation, the development of ambulatory clinics, day care centers, home care and homemaking services has been slow. For the disabled patient confined to his home, modern medicine tends to become more remote and his contact with it more episodic and haphazard. (Katz, 1972) As the number of disabled and aged persons increases, alternative public policy options must be reviewed and their impact assessed. While models (Morris, 1972; Nielsen, 1972) exist for the successful linkage of health and social support systems necessary for quality care of the chronically ill, several factors inhibit needed actions to improve long-term care. First, the lack of strong federal initiatives (e.g., increased home health benefits under Medicare) provides little incentive for local area reform efforts. Second, there is a deeply engrained penchant among professionals for the practice arenas of acute care and treatment. Third, obvious differentials in status, rewards, and financial reimbursement exist between professionals who work in the more visibly exciting and technologically advanced world of acute care and life saving treatment and those who labor among the chronically sick and infirm. Fourth, part of the problem in directing adequate resources to chronic patients occurs because the health system has no effective way of controlling the introduction of costly 183

new technologies or evaluating their total cost-benefit to society. A recent advocate of coronaryartery bypass graft operations (38,000 in 1973 costing $400 million) said the U.S. should prepare to do 80,000 coronary arteriograms a day. Dr. Hiatt (1975) of the Harvard School of Public Health comments on this forecast: Rough calculations indicate that radiologic assessment alone would cost $10 billion a year. If today’s ratio of arteriograms to by-pass surgery were to prevail, the cost of the resultant surgery would exceed $100 billion a year [a figure almost equivalent to today’s total health dollar resources]…. By contrast, an equal number of miners, some 77,000, currently receive disability benefits for chronic black lung disease, yet follow-up and continuity of health care for their condition is largely neglected. For each new CAT scanner purchased, yearly estimated operating costs range from one quarter to one-half million dollars. In analyzing some of these paradoxes of modern health care, one physician recently remarked, “Medicine’s highpowered technology and quick-cure image differs considerably from the reality of what most needs to be done, that is, care of chronic illness, personal counseling services, and social support networks” (Airie, 1975). Disease patterns of contemporary industrial societies have changed considerably. Unlike the diseases that devastated and decimated large numbers of our population in the early 19th century, today’s new “social diseases” are largely chronic in nature. They are insidious, developing over time, and disabling significantly large but seldom seen populations in this country. The new “social diseases” of hypertension, lung 184

cancer, heart disease, obesity, and yes, even child abuse, are closely linked to the stresses and life style of our affluent nation. Despite the advances of medical science, no modern industrialized country has, through its health system, been able to cope effectively with the complex chronic and social illnesses that predominate. There is much evidence to indicate that health status is determined more by social environmental factors than by health care services (Syme, 1975). In order to more fully explore both the problems as well as the opportunities for change in the care of those with chronic illness, an examination of the following areas is required: 1. The social epidemiology of chronic illness and disability—its scope and distribution; 2. The social and family adjustments associated with chronic illness; 3. The social costs of chronic illness and disability; and finally 4. Social policy changes indicated in order to meet the needs of the chronically ill.

Social Epidemiology of Chronic Illness How serious is the problem of chronic disease and disability? The following statistical overview gives us some idea of the breadth and depth of the problem we confront. In providing this data the definition of terms used includes: (1) Disease, which refers to the presence of some morbid physical or mental state which is either latent or manifest; (2) Illness, which means a disease with manifest clinical

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symptoms; and (3) Disability, which refers to a demonstrable loss or limitation of normal function from whatever cause and lasting three or more months. In this latter category we usually refer to limitations of activity. These can either be major activities, such as going to school or housekeeping, or they can be restricted activities in such areas of mobility as walking, wheeling, eating, bathing, etc. A disability is said to be either total or partial, depending on how much work a person reports being able to do. To illustrate the use of these terms: in one community 20% of the population showed some evidence of heart disease, 7% reported they were ill because of their disease, and only 1% was judged as having a moderate or severe disability due to the disease. Overall, it is estimated that 50% of the American population has one or more chronic conditions. Some 23 million persons, or 14% of the population have chronic conditions which cause activity limitation. Three-fourths of these, or 19 million, are limited in major activities, that is, working or going to school; and 6 million are simply unable to carry out their major activities. Another 1.8 million people need help in moving about; many of these are elderly. Interestingly, 1.6 million of those who cannot carry out major activities are children and over half of those are mentally retarded. In 1972, 23% of the children under 17 years of age had chronic conditions. The EPSDT screening program for low income children showed that between 20 and as high as 40% of the children screened had chronic conditions. Less than half of these were receiving routine medical care for their condition. Major chronic conditions causing activity limitation by age are shown in Figure 1.

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The chronic diseases which affect Americans can cause serious disability and impairment. The proportion of the population with activity-limiting chronic conditions is shown in Figure 2 with striking differential rates by income levels. It should be noted that the percent of population with activity limitation is 14.1%. Figure 3 shows the average number of disability days per person and days of restricted activity and work loss days. Table 1 illustrates that nearly 3.2 million people have limitation in mobility, that is, are either confined to their house, need help in getting around, or have trouble getting around alone. In 1974 there were 2.6 million persons receiving disability insurance benefits under Social Security. By 1977 this number had doubled to 4.6 million. About half of these are disabled

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FIGURE 1. Incidence of selected chronic conditions causing limitation by age: 1972 (Rate per 100,000 population). Source: U.S. Department of Commerce, Bureau of the Census, Statistical Abstract of the United States: 1974 (Washington, D.C.: U.S. Government Printing Office, 1974), Tables 135, 3.

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FIGURE 2. Source: Health Interview Survey, 1974, National Center for Health Statistics, U.S. Department of Health, Education, and Welfare.

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FIGURE 3. Source: Health Interview Survey, 1974, National Center for Health Statistics, U.S. Department of Health, Education, and Welfare. 191

TABLE 1 . Percent of all persons of all ages with limitation of mobility by selected demographic characteristics: United States, 1972.

workers. The total number of disabled persons is estimated at between 8 and 14 million. The leading diagnosis for those receiving disability payments under the age of 40 is schizophrenia. After the age of 40 it is heart disease, followed by emphysema and arthritis (after the age of 55). Other data reveals an enlarged picture of the impact of disability and chronic conditions: • –Approximately 2 million handicapped children require care in the United States. Another 1.5 million 192

• • • •

have asthma and 50,000 children have sickle cell anemia. –Approximately 200,000 mentally retarded individuals reside in our institutions. – Some 20,000 people are residents in homes and training facilities for the blind. –State rehabilitation agencies accept annually over 100,000 persons below the age of 21. –Five percent of live born infants have a significant abnormality, of which 50% will die by the age of 5. For those living beyond that age, their need for long-term care is substantial.

Certain rates of chronic disease are increasing. Leading the group is chronic respiratory diseases. Diabetes is said to be increasing at about a level of 6% and cirrhosis of the liver, which had a death rate of 9.2 per 100,000 in 1950, has now risen to 15.7%. This is in large part due to increased rates of alcoholism. Emphysema and chronic bronchitis combined had a 12.6 per 100,000 death rate in 1960. By 1970 the death rate for emphysema alone was 19 per 100,000. Seventy thousand males will die of lung cancer this year, a largely preventable chronic disease. Recent hospital discharge reports from V.A. hospitals found that hypertension among hospitalized veterans had increased from 25,229 in 1971 to 52,206 in 1976. Chronic ischemic heart disease accounts for more than half of the diagnoses of heart disease during this five year period. Even our pets from the animal world are showing symptoms of the American life style:

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Both man and his domesticated animals are exposed to similar environmental stresses. The same polluted air is inspired by both man and his pet dog. Many household pets prefer table scraps to pet foods and thus share man’s diet. With improved nutrition, housing protection and veterinary medical care, pet animals are experiencing a longer life span … time in which to develop diseases associated with aging. Thus, an increasing prevalence of atherosclerosis has been reported in zoo animals. Various forms of cancer are being reported with increasing frequency among animals. All of this increase in frequency cannot be attributed to a longer life span. Automobile accidents is one of the leading, if not the leading cause of death among adult dogs in cities. One of our larger cities recently reported that about 180 animal carcasses are removed from city streets daily. The list of chronic diseases reported in animals is growing annually. Animals are being utilized today to serve as monitors for human diseases such as air pollution, for comparative pathologic studies of chronic diseases, and to evaluate the efficacy of treatment of diseases. (Trainer, 1973) Today, there are as many persons being treated in nursing homes and related institutions as in general hospital beds. But this is not the whole picture. As Strauss (1975) says so poignantly: Even cursory scrutiny shows that most patients visiting the hospital for specialized treatments are not there because of acute diseases but because they currently suffer from an acute phase of one or another chronic disease: cancer, cardiac, kidney, respiratory and the like.

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Traeger prefers the term intercurrent illness. She says, “Chronic disease states, in general, are not characterized by an unbroken state of extreme ill health and incapacity which begin at the moment of diagnosis and ends in a custodial bed” (Traeger, 1975). And what about the chronically ill in boarding homes? Roberts (1974) found in a study of 334 homes in Pennsylvania that almost all 589 residents required medical care and 50% should have been in an intermediate nursing care facility or hospital. There are distinct differences in the way chronic disease and disability affects the population … differences according to age, sex, marital status, ethnicity, and education. For example, black persons are twice as likely to be disabled. Also, lower levels of educational attainment are correlated with higher degrees of disability and impairment. Looking at other variables we find:

Age As we know, old age is not synonymous with chronic disease. Shanas (1974), in her studies of the elderly both in this country and abroad, notes that in all countries nearly three-quarters of the elderly population are ambulatory and healthy. On the other hand, the elderly do have more chronic illnesses than other age groups of the population. For those over 65, 39.6% will have chronic conditions as contrasted with 14.2% of those between 45 and 65. Those over the age of 75 are growing at a faster rate than those between the ages of 65 and 75. It is now projected that nearly 11 million individuals (75 years of age or over) will require long-term services by 1990. Two to four percent of the aged are bedfast,

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12 to 14% are homebound, and 48% need help with simple tasks. Shanas’ (1974) study also shows that of those over 65, nearly one-fourth who live in the community require home care services. Pfeiffer’s community study provides evidence of significant impairment (either moderate to complete) among the elderly at 41%. A study from Philadelphia places this percentage at 27%. Older people in institutions differ from their non-institutional peers. They are advanced in years (average age 82) and have a higher incidence of chronic physical and mental impairment resulting in functional disability (perhaps as much as four disabilities per person). Some studies indicate that 10-20% of the elderly living in urban areas are mentally impaired. Moving to a different aspect of the age differential, it is important to point out that from one-sixth to one-third of all chronic illnesses is estimated to originate in childhood (Travis, 1975). Some chronic conditions are preventable. In Figure 4, the findings from a study conducted by Gordis (1973) in Baltimore demonstrated that (over a three-year period) in an urban area which offered comprehensive medical care services, rheumatic fever rates were about one-third lower than comparable parts of the city without comprehensive health care services. These census tracts were predominantly black. The implications for reductions in valvular heart disease and nephritis are apparent and long-term economic savings could probably be demonstrated if such prevention programs were expanded.

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Ethnicity Space is not adequate to summarize the voluminous data on ethnic differences in chronic disease categories. We need not dwell on the striking differences in disease rates between blacks and whites which have long been available for study and action in this country. Richardson (1969) has documented these statistics and concludes that the poor in the United States are sicker than the non-poor and use fewer ambulatory health services. “If anything, however, these crude value measures of utilization applied to a national sample tend to understate both the severity and complexity of the problem.” The relationship between social and economic conditions in health status are clear. Thirty-eight percent of American Indians have incomes below the poverty level. Thirty-five percent of blacks and 23% of Hispanics live below the poverty level. Data from the national health survey consistently show race-related differences in the utilization and receipt of health care services for these groups. Life expectancy for Indians is approximately seven years less than that of the nonwhite population. Interestingly, the rate of cardiovascular disease among Indians is lower than the rest of the population. There is among Asian-Americans an upward trend in certain kinds of cancers and heart diseases, much of which is associated with anglo diets (Keys, 1966; Matsumoto, 1971).

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FIGURE 4. Incidence of rheumatic fever and the effect of eligibility for comprehensive care programs (Baltimore, 1970). Source: Gordis, L. Effectiveness of comprehensive-care programs in preventing rheumatic fever. New England Journal of Medicine, 1973, 289(7), Table 3, p. 333. Variations by occupational status are also interesting. Overall, chronic conditions affect 3.7% of professional and technical workers versus 9% of farmers, farm managers, and other blue collar workers. It is also important to note that significantly large proportions of the disabled are unemployed or out of the labor force.

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Personal and Family Adjustments Associated with Chronic Illness What do all of these statistics add up to and what are the implications? Simply stated, many individuals suffer from chronic illness. Some will experience serious psychological assault to their body image. They may lose a sense of mastery and autonomy over their lives. In some instances there will be substantial loss of self-sufficiency. The needs of the chronically ill and their families are frequently quite complicated and their total adjustment to life may be altered. Suchman (1958) found that one out of five patients reported that their current diagnosis called for changes in eating, drinking, or smoking. In addition: • –50% were concerned about carrying on normal activities; • –22% about loss of independence; • –37% about the cost of treatment; • –30% the loss of work; and • –15% concerned about the interruption of personal plans. Half a million AFDC families have one incapacitated parent and there are 37,000 families where both parents are disabled. “Studies of morbidity in families reveal a tendency to chain-reaction-like responses; other members may become sick or disturbed. The ultimate catastrophe under these circumstances may be that the whole family breaks up” (Engel, 1962). In a recent study of the impact of disability on family structure, Franklin (1977) found that more marriages

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among the disabled end in divorce than among the non-disabled. She also states: The educational, geographic and economic resources available to these families, especially those of the severely disabled, were less abundant than for the general population. The extended family generally provided no greater support to the disabled than to the healthy population. So the nuclear family was forced to cope with its problems as well as it could. Men and women withdrew at a slower rate from their sex-assigned roles. Decreased participation in most aspects of living highlighted the patterns of the disabled in their family settings. Chronic poor health impoverished not only those it afflicted but also those living with them. In a recent report by Kaplan (1976) it was found that 89% of the families studied could not cope adequately with the consequences of childhood leukemia. Strauss (1975), in his excellent book on Chronic Illness and the Quality of Life, gives some insight into what parents face with a chronically ill child. He says: When life may hang on proper carrying out of a regimen through machinery, that anxiety may be almost unbearable during the early phases of learning to use and live with a machine. One family, whose child had cystic fibrosis, remarked that they no longer went out at night (I don’t even trust my sister to do the right things.) Both parents were so acutely anxious about the mist-tent pump and the possibility of its going bad, that they constantly listened for any change in noise or rhythm and also constantly checked the water bottle to make certain it was not empty.

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Sexual dysfunctioning following chronic illness conditions is often neglected in both the assessment and the treatment of the condition. Both diabetic and myocardial infarc patients show increased rates of sexual dysfunction. One hospital study found that: Although patients and physicians focused upon physical disease, personal and social attributes produced disability as great as that caused by physical disease. Of the 155 patients discharged alive, 14% were not disabled, 24% were disabled from physical disease, 44% were disabled from psychosocial disturbances, and 18% were disabled from a combination of these causes. (Duff & Hollingshead, 1973) Clearly, the social-psychological aspects of care for the chronically ill are growing in importance, yet the provision of such services strain existing budget resources.

Social Costs In a study of the Workman’s Compensation program, Brinker and Murdock (1973) found that severely injured workers suffered a substantial drop in income, forcing them to move to poorer housing. Their children were also adversely affected; they had a lower rate of college attendance and held poorer jobs than children in the control group. The economic costs from premature disability or death have been studied but it is, of course, difficult to estimate the entire cost of work days lost, school days lost, and other activities that are curtailed because of illness. The average income of the totally disabled is half that of non-disabled persons.

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Several recent studies have directed attention to the potential of increased mortality rates in the relocation of elderly from one level of care to another. In speaking of the elderly we cannot escape the implications of the increased population projections for those over 75. Already two and a half times more of our medical care dollar is spent on the elderly than on the 19-64 age group. Between 1960 and 1970, long-term beds increased by 30%. Nursing home care costs are now estimated at $9.5 billion, up $1.5 billion from the previous year. Many families with moderate incomes cannot cope with the catastrophic nature of certain chronic illnesses. A recent study of 115 families by the National Cancer Foundation revealed that average costs for a cancer patient who died in these families during the past year and a half was approximately $19,000. Health insurance only covered, on the average, $8,000. Similar problems exist among the severely or totally disabled adult. In general their medical bills are twice those of the non-disabled and they possess less health insurance coverage. This is especially serious since the disabled are two to four times as likely to be hospitalized. In these families the need for home health and other social support and family counseling services grows, yet the need for these services emerges at a time when concern over the already burgeoning costs of health care are causing many medical leaders to call for a retrenchment in the scope of medical care services. Simply put, many are calling for a tighter boundary around medicine and a retreat from a broader concept of health benefits in which professional results are harder to measure. This move toward narrow medical intervention, especially as

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it concerns chronic and long-term illness, is doomed to failure. As Bess Dana (1973) has said: The prevention of disease and disability, whether physical or mental, is intimately connected with the conditions of human life. Thus, a retreat from the vigorous pursuit of a social mission for health and medical care delivery is a denial of both science and society.

Public Social Policy Implications and Recommendations The needs of the chronically ill and those requiring long-term care must receive renewed attention by the American public and health care policy makers. From a professional point of view, it is clear that unnecessary physical deterioration to large numbers of people will result if a “second-class” level of care continues for the chronically ill. As noted, the chronically ill are the young, middle aged, black, white, single, married, and elderly. Efforts to erase stereotypes which connect only the elderly with perceptions of chronicity and disability must occur. What can be done? First, committed professionals must personally advocate for programs that place equal attention on care as opposed to cure, on prevention as opposed to treatment. In individual clinical work, assessment of the impairment of individual function must supercede the heavy focus on the existence of pathology. Second, Medicare and Medicaid were never, unfortunately, designed to deal with long-term care. Services have been 203

inpatient, acute-care oriented. Less than 1% of Medicare funds are spent on home health care services. It is deplorable to note that some elderly couples have had to obtain divorces in order to qualify for Medicaid eligibility (so as not to go into major debt over long-term nursing care). The new Federal Bureau of Health Care Financing must vigorously address new policy options and abandon those regulations that are deleterious to the “health” of recipients. Third, it is incumbent upon providers and consumers to be actively involved in the new Health Systems Agencies. Not only do HSAs set health planning priorities at local and regional levels, but they must review and approve a wide range of federal grants that come into a particular region. The lack of effective and coordinated services for the long-term patient and the chronically ill must be assertively brought to the attention of those professional and public citizens who help determine health care policy. For example, only one of every four disabled persons actually receives rehabilitation services. The chronically ill themselves must be involved in decision-making processes. The development of a long-term care resource unit in the National Health Planning Office which provides references and referral services is a welcomed addition to federal resources. Fourth, renewed efforts in the training of health professionals to be skilled, knowledgeable, and sensitive to the needs of the chronically ill are called for. Recently, Dr. Butler of the National Institute on Aging was quoted as saying that less than 15 of some 25,000 medical faculty in this country have genuine expertise in geriatric medicine.

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Fifth, new funding resources become available to support program linkages between health and social service delivery systems. Rhetoric about continuity of care and use of social support services must be replaced by concrete programs, personnel, and budgets to engineer services already known to be successful in rehabilitation and prevention. Medical services are but one force to improve the health status of the chronically ill and disabled. As new innovations in health care prevention are realized, the public can hopefully expect that the scope of disability and chronic illness will be more successfully addressed in this country. Additional optimism comes from the increasing progress being made in scientifically validating the relationship between psychosocial factors, especially those of stress (Brown, 1977; Gunderson, 1974) and the development of the disease process. Helping patients alter unhealthy life style behaviors (Stuart, 1975) will place the social-behavioral disciplines in a key position in health care delivery structures of the future.

Note Reprinted from Social Work in Health Care, Volume 5(2), Winter 1979.

References Arie, T. New Society, 1975, 5.

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Brinker, P., & Murdock, W. Children of the severely injured. Journal of Human Resources, 1973,8, 242-244. Brown, B. Stress and the art of biofeedback. New York: Harper & Row, 1977. Dana, B. Health, social work, and social justice. In B. Ross & C. Shireman (Eds.), Social work practice and social justice. National Association of Social Workers, 1973, 123. Duff, R., & Holiingshead, A. Sickness and society. New York: Harper & Row, 1968, 378. Effects of long-term care. Center for Health Services Research, Publication No. HSM-73-3010, 1972, 2. Engel, G. Psychological development in health and disease. 1962, 220. Franklin, P. Social Security Bulletin, May 1977. Gordis, L. Effectiveness of comprehensive-care programs in preventing rheumatic fever. New England Journal of Medicine, 1973, 289(7), 332-335. Gunderson, E., & Rahe, R. Life stress and illness. Charles C. Thomas, 1974. Hiatt, H. Protecting the medical commons: Who is responsible? New England Journal of Medicine, 1975, 293(5), 235-240.

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Kaplan et al. Predicting the impact of severe illness in families. Health and Social Work, 1976, /(3). Keys, A. American Heart, Spring 1966, 6. Matsumoto, Y. S. Social stress in coronary heart disease in Japan. In P. D. Hans (Ed.), The social organization of health. New York: McMahon, 1971, 123-149 Morris, R., & Harris, E. Home health services in Massachusetts, 1971: Their role in care of the long-term sick. American Journal of Public Health, 1972, 62(8), 1088-1093. Nielsen, M. et al. Older persons after hospitalization: A controlled study of home aid service. American Journal of Public Health, 1972, 62(8), 1094-1100. Richardson, W. Poverty, illness and the use of health services in the United States. Hospitals, 1969, 43, 249. Roberts, P. Human warehouses: A boarding home study. American Journal of Public Health, 1974, 64(3), 277-279. Shanas, E. Health status of older people: Cross-national implications. American Journal of Public Health, 1974, 64(3), 261-264. Strauss, A. Chronic illness and the quality of life. C. V. Mosby, 1975, 3, 23. Stuart, R. A three-dimensional program for the treatment of obesity. In R. C.

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Katz & S. ZIunick (Eds.), Behavior therapy and health care: Principles and applications. New York: Pergamon Press, 1975, 585-600. Syme, L. Behavioral factors associated with the etiology of physical disease. American Journal of Public Health, 1974, 64, 1022-1055. Traeger, B. The community in long-term health care. Paper presented at Symposium on Human Factors in Long-Term Care, National Conference on Social Welfare, 1975. Trainer, D. Wildlife as monitors of disease. American Journal of Public Health, 1973. 63(3), 200. Travis, G. Chronic illness in children. Stanford University Press, 1975.

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Families, Transitions, and Health: Another Look Carolyn Dillon, MSW, LICSW At the time of writing Carolyn Dillon was Associate Professor and Director, Health Subconcentration, Boston University School of Social Work, 264 Bay State Road, Boston, MA 02215. SUMMARY. This paper critically reviews the Caroff-Mailick classification of families seen around health care crises, and of reciprocal roles suggested for health social workers depending on severity and trajectory of illness and on family’s functioning levels. As balance, transitional crisis theory, holistic health concepts, and team approaches to the mobilized family as the unit of caregiver attention are discussed. Newer alternative family styles are reviewed which challenge middle class caregiver mores and practices. Family forces which may prejudice worker assessment are reviewed, and the need to mitigate unhealthy and constricting environmental conditions is stressed. Caroff’s and Mailick’s paradigm (1985) for the classification of families who come for care in health settings is part of a continuing professional effort to define and systematize social work roles in health at a time when these roles are beset with budgetary and turf pressures.

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Their work is also consistent with the historic interest of social work in families. Especially since the development of crisis theory in the 1960s (Caplan, 1965; Parad, 1964), health social workers increasingly have viewed illness and disability as transitional crises impacting on the entire family as a sensitive ecosystem, and not just affecting the designated patient. Thus, identifying, relating with, understanding, and assisting this system of significant others become the primary tasks of the health team social worker. Caroff and Mailick propose to classify families’ effectiveness in managing certain affective, communicative, and instrumental tasks of everyday life as a measure of how well the family will cope with the exigencies of illness and adaptation to ensuing life conditions and demands. A family effectiveness rating is then related to the severity and trajectory of the illness of the family member under medical care. These combined assessments then help determine how the social worker best can assist the family in adapting to illness. Types and increments of social work activities are matched with types and increments of family needs, strengths, and vulnerabilities. An underlying assumption of the model is that most illnesses have well-identified courses or trajectories with fairly typical associated responses, roles, and tasks for both team and family. Caroff, Mailick, and other writers (Kaplan, 1982; Sands, 1983; Weick, 1983) suggest that through “anticipatory guidance” techniques, health social workers can teach families coping skills and roles to strengthen post-discharge adaptation. In spelling out other system-supportive interventions, Caroff’s and Mailick’s work is closely related 210

to earlier work by Nelsen (1980) on support as a necessary condition for change, and to familiar social work theory regarding enrolling the worker as auxiliary ego in human systems under stress.

Problems with the Model Inherent in the Caroff-Mailick language is a temptation to think more traditionally of patient and family as separate diagnostic entities with many things in common, rather than as inseparable parts of an interacting system. They list, for example, parameters for assessing family members individually or as a group, and speak of the illness’s impact on the patient as having “reverberations for the family, who must tolerate and respond to the patient’s process in dealing with the illness.” A family systems perspective might suggest something quite different, viz., that prior family system problems may have had reverberations for all members, one of whom consequently developed symptoms or sustained injuries as an articulation of these subtle reverberations. Worker attunement to these system dynamics and subclinical manifestations might be impossible if workers chose to assess identified patients apart from their systems of significant daily life relations. Moreover, to reverse further the paradigm, one might state that the impact of the illness on the family has reverberations for the patient, who must tolerate and respond to the family’s process in dealing with the illness. Because a whole system becomes ill when one of its members does, due to shifts and breakdowns in interlocking obligations and role reciprocities, independently assessing elements of that system runs the risk of missing crucial features such as

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hidden loyalties, subsystems, and cues; illness in more than one member which may need attention; secondary gains of the sick role; and idiosyncratic definitions of the meaning of illness and wellness as they affect family identity and functioning at the time of assessment. The concept of “illness family” may be more useful to the assessment process, since it keeps social work focus on the ecology of illness and wellness (Coulton, 1981; Germain, 1973). The Caroff-Mailick model does not address the problems which also arise for team and consumer when the family designated by the patient is not the traditional kinship or biologic one, but is a mutually designated alternative family group such as a congregate living group, a gay couple with children, or a tightly bonded cult, religious sect, or artisans’ collective. What of a divorced couple, both of whom wish to bring their new spouses and stepfamilies to visit their child in the hospital, and all of whom wish to participate in decision-making because outcomes will affect all? These are all examples of the newer “family” styles developing as support networks within high-stress or isolating industrial environments. A newly arrived immigrant extended family may show up at the care facility in groups of eight or ten, all insistent on staying near the patient, participating in the care, applying traditional remedies, making decisions for the ill member because “autonomy” and “confidentiality” are not relevant concepts in that subculture’s experience of illness. Health care providers, including social workers, may be unfamiliar or uncomfortable with some of these alternate family styles and health behaviors, and be unable to find a paradigm which describes transcultural experiences, 212

adaptational patterns, or appropriate reciprocal professional responses which do not under mine nontraditional coping patterns. Anxiety about this potential unpreparedness of professionals to relate to new social forms has frequently been voiced by homosexuals fearing they may be excluded from care planning for significant others because of homophobia on the part of the team. Such anxieties remind us that while these nontraditional family arrangements may appear to some to be far removed from the 4.5-person nuclear procreative unit on which a good deal of professional planning and thinking is based, these are illness families also, and warrant the same sensitive attention, assessment, and collaborative welcome as the traditional kinship systems around which we are accustomed to build theory. Hence, social work assessment must rapidly determine with patient and visitors who the illness system includes in the widest definition of its supportive and reciprocal parts. Such a definition may include traditional family members as well as other significant persons in the fabric of the whole daily life, including pets, workmates, secret allies, clergy, outside caregivers, and the like. This system might exclude kinship family altogether although the latter wish and insist on inclusion against the stated wishes of the identified patient and the alternative family group. Indeed, an evolving and rarely articulated new role for health social workers may be that of mediator between competing groups who appear at the care site self-identifying as significant to the well being of an ill member (Ahrons and Arnn, 1981).

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Illness Event vs. Adaptive Continuum The Caroff-Mailick model does seem to view illness as an event which happens to people and to which they react in families of varying strength and competence. Recent developments in holistic health challenge social workers to conceive differently of illness, to think of illness and wellness as a continuum sensitively related to the state of inner life and of environmental conditions and ongoing stress. Thus, illness and wellness are viewed as transitional phases of whole being: natural, expectable developments in the human life cycle but highly resonant with inner and outer context. If illness and wellness are more subject to volition and proactivity than formerly understood (Cousins, 1979; Weick, 1983), then a family-oriented role for the social worker not discussed by Caroff and Mailick would be the public health, preventive role of educating large numbers of families and support groups as to how they may actively mitigate illness-engendering conditions such as poverty, unemployment, pollution, and poor health practices (Germain, 1983). A public health perspective broadens the Caroff-Mailick definition of “anticipatory guidance” to include alerting large numbers of people as to how to reduce their overall and ongoing vulnerability to illness by paying serious attention to the quality and safety of their inner and outer daily lives.

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Oversimplification Dividing families into those who function well or poorly risks too-simple polarities in situations in which most families do some things well and others poorly, living out much of life in the middle ranges of competence, depending on who is making the value judgement under what life conditions of the moment. Another hazard in thinking of families as functioning as well or poorly by set professional measures is the observed need of some systems to appear to outsiders to function poorly in order to maintain intrasystemic balance not understood by the outsiders. Thus, getting well or functioning well (exchanging the rights and obligations of the sick role for the rights and responsibilities of the well role) can be more traumatic for certain families than remaining disabled and permanently dependent and disempowered (Goffman, 1963). Further, does not “good functioning” depend a great deal on economic status, the power to control outside stressors, the availability and accessibility of external supports to case crisis in the absence of extended family? Will we come to confuse “poorly” with “the poor”? One must also take care not to confuse apparently poor communication between the family and the health care team with poor communication within the family generally, in the absence of ample other data. It is the rare provider who gets to see how people really behave on their own territory away from the regressive pull of the health care environment. It is the rare health care consumer who is not rendered inarticulate and passive by the authority and expertise of providers, a phenomenon not unfamiliar to social workers who have been

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hospitalized or who have attempted to be involved in the institutional care of friends or relatives. It is also important to remember that family skills and confidence can be diminished by the shock and exigencies of illness. These demands may have already altered the appearance of family functioning before the social worker even meets the family and begins to assess its role structure, communication patterns, affective and instrumental potential. The family will thus appear less well put together than it would under more propitious circumstances. It is thus complicated—and possibly misleading—to put values upon family functioning in the brief 3-10 days now typical of the time span in which rushed, stressed teams assess rushed, stressed families. Such encounters may provide us with unrepresentative cross-sections of regressed family functioning on which to base hypotheses and generalizations about customary functioning. Use of the term “poorly functioning” may also lead some workers to return to traditional approaches of diagnosing individual personalities and then adding up the sum of the neurotic parts to form a “family assessment” emphasizing individual dynamics and pathology and team skills and roles as opposed to identifying family strengths and role potentials and emphasizing these. Recent research (Belle, 1982) suggests that ongoing life conditions outweigh premorbid personality diagnosis and early developmental traumas in determining how well systems will cope with stress. Important social factors noted in how well families cope include the extent of new situational demands placed on the family and the presence or absence of support systems to help with crises (Kaplan, 1982). Others have emphasized the 216

disabling effects of impinging or limiting environments such as barriers to access or hostile attitudes of staff on family adaptation to illness (Coulton, 1981): an important focus for the environmentally alert social worker would thus be that of attempting to change constricting health care environments rather than attempting to change family affective or instrumental styles when these conflict with or offend those environments. When assessing family coping skills, weight also needs to be given to the quality, range and affordability of home support services available in disparate areas of the country; on these services might hinge a family’s sense of choice, autonomy, and dignity in regard to frail or chronically ill family members. Family depression, guilt, and impaired functioning at point of worker assessment may be great due to lack of community resources and the unwanted need to place a member in an institution. Some families may never recover previous spirited levels of functioning should a member die following resisted placement, the family permanently blaming and punishing itself in observable or covert ways. Conversely, “well-functioning” families might elect to take a member home ill-advisedly, to cramped physical or emotional space with the end result of more members becoming stressed and ill in time. Since human beings behave with differential competence in different contexts, but often transfer learning from one problem-solving situation to another when the latter are similar, it seems useful to take a crisis-management history from the family instead of a premorbid personality history or general developmental history containing more information than one will ever need to assist with current health crisis 217

management and future planning. The crisis history should include details of previous crises; descriptions of who mobilized to carry out which adaptational tasks; how all members felt about the evolving experience of crisis and crisis resolution; who may have resisted or sabotaged coping, and why; and how situations and roles ultimately resolved themselves. It would also be important to compare the family’s experience of the current illness demands and resources vis-à-vis aspects of similar crises in the past. Players may change according to the demands and rewards inherent in each situation. Indeed, they may have changed already since the last crisis, so that important, formerly reliable resources are no longer available and need to be replaced. Who may now be counted on to help, when, for how long, with what problems? As Caroff and Mailick affirm, family members may be asked to delay or forsake personal or group gratifications in order to provide for the needs of a disabled loved one. The family’s capacity to tolerate such sacrifices over time needs assessment so that reality, not fantasy, may inform both team and family planning and activity. Interpretation by the family of an illness transition as a crisis will depend in large measure on the way this illness does or does not throw the family “off time,” or out of sync in its progress towards culturally determined group developmental goals when compared with similar families striving towards similar goals at this point in time. Neugarten (1979) has conceptualized three kinds of time to which people relate in order to orient themselves and their expectations and develop a sense of worth and pride: historic time (“I live in the age of kidney transplants”); biologic time (“I am at the age of risk 218

for a kidney transplant”); and social time (“Recovering from a transplant may delay my promotion in the company”). Which family expectations or maturational events such as marriage, childrearing, and advanced education may be derailed by illness, so that the family feels a social time setback and increased sense of crisis or failure, are important to identify promptly. It may be that a crucial role of the social worker will be to help the family reset its social time clock or examine its cultural values in light of transitional crisis so that the family does not feel so defective or stigmatized compared to its own idealizations. Some mourning of lost hopes and dreams may need to take place with worker’s help (Tomko, 1983).

The Team as Family Team countertransferences and processes can also undermine social work objectivity in assessment of family functioning and the assumption of complementary roles, as noted by Caroff and Mailick. The team itself can replicate a family system in the way it distributes power, roles, expectations, and rewards. In many instances it observably creates around itself a working boundary only permeable by approved others. The sanctions and proscriptions, the loyalties, tensions, and complications of these team families are familiar to health social workers and an increasing subject of interest in the literature (Nason, 1983). Teams may provide a model for and invite the collaboration of illness families in problem-solving; or they may control, divide, and distance families, treating them as intrusive aliens or errand boys to be “dealt with” by the social worker. The team, as any family, establishes the home environment (style of the treatment unit) 219

with its space, regulations, and structured communications. While more humane than in the past, most treatment domains are still organized chiefly around the needs of the team family and its schedule and roles instead of around the roles and schedules of the consumer families: the message to all parties about the priorities of the health team are seldom missed and will add to family stress and sense of powerlessness in crisis just when a mobilizing sense of empowerment would most benefit all members of the process. Furthermore, team families can be quite young, especially in teaching hospitals, so that team members may never have experienced traumatic loss or separation, may never have been hospitalized or subjected to invasive procedures, and may only understand from books the many human sequelae of illness and disability. They may be dealing with patient families of the age of their parents or grandparents, and will have to be assiduous in avoiding youthful idealizations, infantilization, or scapegoating of older persons in their care, especially those habitually compliant with authority of whatever age. Unresolved family conflicts may be reawakened by the contact between young caregivers and older families; assessment of functioning could be very colored by these unconscious forces. At the least, the differences in ages can lead to intergenerational misunderstandings, overcontrol, and sharp differences of opinion about roles and goals. Old sibling rivalries and struggles with parents for autonomy can as subtly be replayed with illness families. In other instances, social workers whose charge it is to talk with families may come from families in which it was taboo to talk in front of children or outsiders about such subjects as 220

family debt, conflicts, unhappiness, wish to live apart, or death. Workers may thus experience old discomforts when eliciting these old forbidden themes from the families assigned them for assessment. They may at times be forced to assess as “poorly” or “well” functioning families very like their own, and respond subjectively rather than according to assessment paradigm. Administrators and supervisors of health social work departments need to be sensitive to the fact that some of the emotional attrition commonly experienced by health social workers may be due to the constant stimulation and reworking of family conflicts in the presence of powerful forces operating in the team and in the illness families, or between them, the social work profession, the institutional administration, and the larger community family with an investment in health care process. Workers may need much support as they are pulled by loyalties to all of these families. They may also need much relearning and undoing of old family process patterns shaping their information-gathering, assessment, and communication styles. Supervisors and senior colleagues can be fine corrective models for this learning provided they have experienced it themselves over time. Because of the frequent pressure and isolation of all staff in busy health settings, workers may have difficulty finding regular, sufficient, renewing emotional support to compensate for the stress and frequent demoralization attendant to low-status roles in biomedical hierarchies. Caroff and Mailick aptly suggest that workers may at times compensate by overidentifying with or overinvesting in illness families in 221

their care. It may be that rescue impulses are also acted out to balance the disregard or devaluation experienced by workers in especially hierarchical team settings. Isolation in large, decentralized or impersonal departments can also contribute to forming one’s major attachments with clients or community groups. The ongoing task of social work administrators in health must be tirelessly to defend staff support needs and provide for these in dependable ways. A strong, cohesive professional identity in a unified department forms a protective barrier against the encroachments upon self-esteem experienced by workers in so many health settings wherein social work functions are poorly articulated, understood, valued, and rewarded.

Conclusion Health crises bring together many people who might never choose to keep each other’s company in real life due to differences, biases, or antipathies. Illness forces the team family and the illness family to share domain and experience for a time; it also offers many opportunities on both sides for healing interchange in a new climate highly charged with an overarching wish to help. Like the illness family, the team family will have to invest intensely in, then as quickly decathect from, the illness family. The effect on both groups of these serial attachments-divestments is bound to be wearying and in some cases, productive of emotional detachment as a survival mechanism in the face of so much potential change and loss. In teaching settings, staff turnover adds to the sense of instability and “poor functioning” on the part of the

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caregivers as well as the illness families. While still reacting to the departure of colleagues rotating off the service, those who remain, both treaters and treated, have to welcome and orient new caregiver-learners. If team and illness families had one of Neugarten’s social clocks, this clock would have to be reset in the most disconcertingly inexorable and untimely ways with each teaching rotation in each discipline. Indeed, over the life of a long illness or chronic disability, caregivers will come and go by the dozens, with family carrying the only unbroken memory of the problems and of the care experience over time. It is widely remarked that contemporary caregivers new to the illness family’s care all too seldom bother to ask the family about its experience in care receiving, an experience which can positively or negatively condition the family’s current responsivity to caregiver expectations. In all this, the health social worker is in a unique position to observe how the illness family and the team family meet in moments of crisis and stress, thus sometimes responding to and assessing each other in regressive and regressing ways. The worker often stands on the painful emotional interface of these family systems, bearing inside a third family, that of personal experience and memory. Such a worker often feels the pull of conflicting loyalties and identifications, of conflicting definitions of how people should appear and behave under stress. The social worker with sufficient confidence, self-awareness, family systems understanding, and institutional support for replenishment and protection is in a very good position to play a major facilitating role in negotiating between groups and building consensus for positive collaborative action. Such a worker can model and foster much “re-familying” in both 223

the team and the consumer group. This is less likely to happen where the worker is stuck unconsciously in old inhibiting family transferences and afraid to speak up or take leadership lest disfavor or punishment result. Nor will it happen well where in their families of origin workers have learned to be passive, helpless, or self-abnegating in the presence of authority. Skilled inservice training can help workers identify through role play and mock teaming which personal ghosts most often attend family and team meetings, affecting professional use of self in the service of improved process with client families. In the end, classifications notwithstanding, social workers recognize that the fate of humane, family-centered health care may well rest on the ability of caregivers to identify and empathically respond to complex family-like forces arising when large numbers of disparate people converge to interact around issues of health and illness, life and death, competence and vulnerability. Social work’s historic affiliation with families well prepares the health social worker to act as skilled amicus curiae in the ensuing process.

Notes An earlier version of this work was presented at the Beatrice Phillips Sachs Symposium on Family Adjustment to Illness sponsored by the Social Service Department of the Beth Israel Hospital, Boston, MA, October 1983. Reprinted from Social Work in Health Care, Volume 10(4), Summer 1985.

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References Ahrons, C. & Arnn, S. When children from divorced families are hospitalized: issues for staff. Health and Social Work, 1981, 6(3), 21-28. Belle, D. Lives in stress. Beverly Hills, California: Sage, 1982: 35-79. Caplan, G. Principles of preventive psychiatry. New York: Basic Books, 1964. Caroff, P. & Mailick, M. The patient has a family: reaffirming social work’s domain. Social Work in Health Care, 1985, 10(4). Coulton, C. Person-environment fit as the focus in health care. Social Work, 1981, 26(1): 26-35. Cousins, N. Anatomy of an illness as perceived by the patient: reflections on healing and regeneration. New York: Bantam Books, 1979. Germain, C. An ecological perspective on social work practice in health care. Social Work in Health Care, 1977, 3(1): 67-76. Goffman, E. Stigma. Englewood Cliffs, N.J.: Prentice-Hall, 1963: 10. Kaplan, D. Interventions for disorders of change. Social Work, 1982, 27(5): 407.

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Nason, F. Diagnosing the hospital team. Social Work in Health Care, 1983, 9(2): 25-45. Nelsen, J. Support: a necessary condition for change. Social Work, 1980, 25(5): 388-391. Neugarten, B. Time, age, and the life cycle. American Journal of Psychiatry, 1979, 136:889-891. Parad, H. (ed.) Crisis intervention: selected readings. New York: FSAA, 1965. Sands, R. Crisis intervention and social work practice. Health and Social Work, 1983, 8(4): 253-261. Tomko, B. Mourning the dissolution of the dream. Social Work, 1983, 25(5): 391-392. Weick, A. Issues in overturning a medical model of social work practice. Social Work, 1983, 25(6): 467-471.

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Social Work in Home Dialysis: Responding to Trends in Health Care Sally E. Palmer, MSW At the time of writing Ms. Palmer was a social worker at London Psychiatric Hospital, 850 Highbury Avenue, London, Ontario, Canada. She was previously a social worker in the Home Dialysis Training Centre, Victoria Hospital, London, Ontario. SUMMARY. This paper describes the author’s 2-year experience as a social worker in a home dialysis training center. The experience is viewed in relation to current trends in health care: greater recognition of the patient’s emotional response; more patient responsibility for treatment; increased communication among various professions and between the health care team and patients; rehabilitation of chronically ill patients; and decentralized delivery of services. It is concluded that the social worker can provide leadership in responding to these trends. The basis for this leadership lies in the development of good working relationships in the interdisciplinary team and between professionals and patients. For this purpose the social worker must acquire skills in dealing with the conflicts arising from these more complex relationships.

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This paper proposes to provide a perspective of social work in health care by describing the author’s experience in a training center for home dialysis patients. First some general problems of social work in health care will be considered, then the present trends in health care that have implications for social work. The description of the author’s experience that follows will illustrate the possibility for enhancing the social worker’s contribution to the health field.

General Problems of Social Work in Health Care The literature indicates that there is a major problem for social workers in being recognized by other members of the health care team. Social workers commonly complain that physicians fail to refer patients for help with their emotional reactions to serious illness or traumatic forms of treatment (Moon et al., 1965, pp. 21,37, 39, 41). Although this should be changing with more progressive medical education, indications are that such referrals are not noticeably increasing. A study in one hospital showed no increase over a 10-year period (Phillips et al., 1971). Further evidence of nonacceptance by the medical profession is the negative reaction of some doctors when the social worker initiates contact with their patients. This contribution often goes unrecognized and occasionally meets with strong disapproval from doctors (Smith, 1973). Thus it appears that the ambiguous position of the social worker among health care professionals is unlikely to be resolved without a change in the traditional process of social 228

work involvement. It is important that social workers take advantage of current trends in health care to broaden and consolidate their role vis-à-vis the other professionals with whom they work.

Some Current Trends in Health Care Recognition of Emotional Reactions Until recently, patients who showed little emotion were considered by the medical profession to be well adjusted to their illness. This attitude has changed, due largely to the findings of Kiibler-Ross about the feelings of dying patients. Now patients who seem to be remarkably stoic in the face of serious illness are more likely to be assessed as denying their underlying feelings. There is increasing recognition in health care literature of the patient’s emotional reaction to illness. This is particularly evident in students of dialysis patients. The most commonly discussed reactions are anxiety and depression. Anxiety is viewed in the literature as a normal reaction to stress. Anxious patients have been found to be better educated (Kaplan De-Nour & Czaczkes, 1974); also, no correlation was found between anxiety and the patients’ physical status (Fishman & Schneider, 1972). Depression was found to be a significant problem, with the level of depression approaching that encountered in psychiatric patients (Finkelstein, 1974). The prevalence of denial among dialysis patients has been frequently documented (Abram, 1974, p. 67; Hagberg, 1974; 229

Pierce et al., 1972). Abram and Hagberg view denial as essential in coping with stress, which suggests a need for skillful intervention to deal with feelings. In general, the increasing recognition of these emotional reactions points to the need for social work intervention to enable patients to deal with this aspect of their situation. The social worker is better situated than other health care professionals to deal with patients’ negative feelings. Other professions usually take an active part in the medical treatment, which requires a positive, encouraging attitude. As a result, patients who want to be cooperative may be reluctant to express negative feelings (Kress, 1975, p. 45). The social worker is in a position to encourage such expression without detracting from another form of treatment. Social workers can also be facilitators of interaction between patients with a common illness. Such interaction may take the form of mutual education, ventilation, and mutual support (Leff, 1975, p. 35). The benefits of this arc also evident from the finding that social interaction has an effect on psychiatric problems arising from illness (Malmquist, 1973a). Another aspect of illness that draws on social work expertise is sexual dysfunction. This is a particular problem for dialysis patients (Levy, 1973), as might be expected with any chronic illness. The implications for patient morale and self-esteem suggest the need for counseling to help the patient and his/her partner to adjust. Counseling may even alleviate part or all of the sexual dysfunction, as much of the problem may be psychological. Dialysis patients who experience sexual problems often do not improve even though their physical condition improves with the onset of dialysis treatment (New, 230

1975, p. 80). This suggests that a psychological problem has been added to the physical dysfunction, and sexual counseling may be the treatment of choice.

Increased Patient Responsibility for Treatment A second major trend in health care is the increase in patient responsibility for treatment. This has come about due to economic constraints on professional services as well as the recognized value of greater patient involvement for the success of treatment. A home dialysis program exemplifies patient responsibility for treatment; patients are taught to dialyze themselves, usually with the aid of another family member who is trained as the assistant. This new approach has implications for social work. First, the dependency of the patient on health care professionals is diminished, which may create intrapsychic conflicts for the patient concerning dependency/independence (Abram, 1974, p. 69; New, 1975, p. 79; Snow & Clark, 1976). Such conflicts may also be experienced by the health care professionals who must adjust to the change. Thus the social worker, who can be more objective, can help to identify and resolve the resulting patient-staff ambivalence. Another aspect of greater patient involvement is education. In order to participate in treatment, the patient must be taught the essentials about his condition and the medical regimen he must follow. It can be expected that learning problems or emotional resistance may impede the educational process. In relation to this, the social worker can be a resource person to nurses or technicians who are training the patients, helping

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them to assess and handle the resistance or blocks to learning. This topic has been given little attention in the literature.

Emphasis on Communication with Patients A third trend in health care is the emphasis on more open communication between the medical team and patients. This is a natural outcome of increased patient responsibility, as the patient becomes part of the team working on his own treatment. Successful treatment depends upon mutual trust; thus, patients must be willing to reveal their fears and failings, and professionals must be frank with patients about their condition and the pitfalls of treatment. The social worker can be a facilitator in this by helping patients and staff to recognize and deal with feelings tending to interfere with communication. Communication problems are not limited to staff and patients. Often the patient’s entire family is involved. In one study it was found that the partner assumed the major responsibility for treatment in 9% of cases, despite staff efforts to prevent this (Baillod & Moorchead, 1974). Thus the medical team must be prepared to deal with the entire family system. The social worker, with training in family dynamics and family therapy, can help to resolve communication problems as they arise, at the same time educating the other team members in these areas. Another important area of communication is between patients. This is particularly relevant to home dialysis, as the patients become acquainted during training, at the regular clinics, and at retraining sessions and tend to initiate discussion about their experiences. This interest can be 232

channeled into an effective source of mutual support, as shown by experiences reported in the literature (Leff, 1975, p. 35).

Rehabilitation in Chronic Illness A fourth trend in health care is a more positive approach to chronic illness. New treatment methods allow many patients to live for years with a serious condition. Thus the emphasis has moved gradually from keeping the patient alive to rehabilitating him to a relatively normal life-style. Rehabilitation is a particularly appropriate field for the social worker because it involves emotional acceptance of a new status by the patient and his family. The literature identifies some of the emotional reactions to chronic illness. Among these are the reinforcement of the patient’s dependency by the continued necessity of medical treatment (Snow & Clark, 1976) and the patient’s diminished self-concept causing him to fear rejection by society (Reichsman & Levy, 1972). These two factors inhibit the patient’s return to a normal life-style. Among renal patients it has been found that attitude is a large factor in the return to work. Studies show that one-quarter to one-third of renal patients function at reduced work levels after commencing dialysis (Baillod et al., 1968; Winokur et al., 1973). The level of functioning has also been found to be related to the premorbid attitude of the patient. Those who responded negatively to life changes before the onset of renal failure were less likely to return to work during the first 6 months (Malmquist, 1973b). It has also been found that patients’ capacity for rehabilitation varies according to

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social rank (Huber et al., 1972) and according to the emotional energy they have available (Kress, 1975, p. 46). The family’s response to illness must also be considered. The literature discusses a variety of family systems that may inhibit rehabilitation. These include overprotectiveness by the family (Baillod & Moorehead, 1974), manipulation by the patient for secondary gains (Malmquist & Hagberg, 1974), the development of parent-child marital relationships, and the spouse’s repression of negative feelings which are then expressed as overconcern for the patient (Marshall et al., 1975). Such distorted family relationships can have an adverse effect on treatment. For the health care team working toward rehabilitation, it is essential to have a member who can assess the influence of the family and intervene when this is counterproductive.

Decentralization of Service In an effort to bring services to the consumer, decentralized programs have been set up outside the large hospital settings that traditionally dispensed health care. Decentralized units are conducive to interdisciplinary communication, as team members are close to each other and relatively isolated from colleagues in their own professions. The difficulty for the social worker is in maintaining professional identity when there is little contact with other social workers. In summary, there are a number of trends in health care that present a challenge for social workers. There is growing interest in the patient’s emotional response to illness; greater involvement of patients with their treatment; more open

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patient-staff communication; more attention to rehabilitation in chronic disease; and a trend toward decentralized programs. These trends provide opportunities for social workers to participate more effectively in health care.

The Social Worker in a Home Dialysis Training Center The possibilities outlined above for the social worker in health care can be illustrated by a description of the author’s 2-year experience in a home dialysis center. The center is located near a large general hospital from which it is administered. During the 2 years, it was staffed by six nurses, a secretary, and a social worker. The doctor, who was the director, or his resident visited daily to see the patients in training, two to four couples at any one time. The center served about 35 families, which allowed the social worker to have regular contact with all of them. Contact began with an initial assessment of the family’s suitability for home dialysis, including an office interview with the patient and prospective partner followed by a home visit. Throughout the training period of about 8-12 weeks the patient and partner were seen regularly in the center during dialysis. Following training, the patient was seen every 2 months at the clinic and families about twice a year. These were routine, preventive interviews; contact became much more frequent whenever difficulties arose in the family’s adjustment to home dialysis.

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The general approach of the social worker was to assume that home dialysis would create stress for the family. Thus the focus of contact was on supporting their adaptation to the program and helping them to resolve any problems that inhibited this.

Emotional Reactions of Patients The growing recognition by health care professionals of emotional responses to illness was reflected in the center. The nurses often identified emotional problems and referred them to the social worker. The most common feelings noted were anxiety and depression. Some patients who showed neither of these appeared to be defending against their normal reactions by denial. Others developed psychosomatic symptoms or physical complications with emotional overtones, such as sexual dysfunction.

Anxiety It is understandable that dialysis patients should experience anxiety. Chronic renal failure is a life-threatening condition, and dialysis treatment is traumatic and complicated. In home dialysis these conditions are aggravated because the patient and partner are expected to administer their own treatment away from a medical center. The social worker’s approach to those experiencing anxiety was a combination of catharsis and reality therapy. First, patients were encouraged to express their fears by techniques such as probing and universalizing. Then reality therapy was used to help them place these fears in perspective. The reality 236

was that the patients’ outlook for life expectancy and quality was better than many of them fantasized. Thus patients fearing imminent death were encouraged to approach the doctor, who could reassure them on this, and quality of life could be demonstrated by the relatively normal lives of long-term patients. A patient who benefitted from this approach was Mr. B.: Mr. B.’s physical condition began to be unstable after he began training for home dialysis. He was admitted twice to the hospital for chest complications. Upon recommencing training, he appeared very depressed and unable to concentrate on the task. The social worker spent some time with Mr. B., probing for his feelings. He finally revealed his suspicion that he had terminal cancer. With encouragement he was able to question the doctor about this and receive reassurance. Subsequently Mr. B. was more relaxed and began to involve himself constructively in the training process. As the above example shows, patients’ anxieties can be reduced by a combination of expressing feelings and testing them against reality. This brings anxiety within normal limits so that the patient can function adequately in the dialysis program.

Depression A similar approach was used with patients who were depressed. It is expected that dialysis patients will experience some depression. The requirements of dialysis limit their life-style, particularly in relation to travel and leisure time. 237

The patient’s self-image is also affected by the loss of body function and by increased dependency on others. The initial sense of loss and helplessness may be profound. The social worker’s assumption was that patients had to mourn the losses they experienced before they could achieve a state of acceptance. Accordingly they were encouraged to talk about their depression, sharing their sense of loss with the worker. This approach complemented the work of the medical staff whose orientation was to positive treatment measures. In addition to handling depression by catharsis, the social worker engaged patients in helping each other. Families who were considering dialysis were introduced to others who had integrated it into their lives. During training each couple was visited by another experienced pair who could answer their questions about daily life on home dialysis. Patients were also encouraged to join a patients’ organization which was set up with the social worker’s help. The value of mutual help in dissipating depression was illustrated by its positive effect on Mr. H., one of the most active patients: Mr. H. pioneered the formation of the patients’ organization. Under his leadership the organization provided financial help to families during their training period and purchased a portable dialysis machine for traveling patients. Mr. H. had been very depressed at the onset of dialysis and needed much encouragement in the beginning stages of the organization. The effect of the above accomplishments on his

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attitude was remarkable. His depression lifted and he became more positive toward dialysis and the staff of the center. Patients were encouraged to become involved in educating health care professionals and the general public about home dialysis. The social worker arranged to have patients included in speaking engagements with renal dietitians and medical students. Their organization was asked to participate in a public display of the care provided by the hospital and later arranged displays on their own initiative. Another depressed patient who benefited from helping others was Mrs. B.: Mrs. B. was a married woman of 51. She had been very depressed about dialysis during her 2 years on the home program. Despite an above-average income, she had allowed her life to become circumscribed by dialysis. She adhered to a rigid routine and refused to take holidays or travel with her husband because this would necessitate dialysis away from home. The social worker invited Mrs. B. to participate in a professional conference in another city, presenting her views about home dialysis. For the first time, she changed her dialysis day in order to attend, and she subsequently began going away regularly with her husband. Mrs. B. also participated increasingly in the patients’ organization. After initial ambivalence, she chaired a committee to visit patients in the hospital and became coeditor of the patients’ newsletter. Initially she had been 239

pessimistic and occasionally sarcastic about her situation; this changed to dry humor which brought laughter from other patients about their mutual tribulations. The extent of depression in the patients mentioned was within normal limits as a reaction to dialysis. There were a few (3 of about 35 patients) whose depression was much more persistent. It seemed to be brought on by the dialysis but did not improve with the above methods. It appeared that these patients had a preexisting tendency to depression, and they would require more intensive intervention. The methods used with this latter group were environmental manipulation and behavior modification techniques. Environmental manipulation was mostly related to employment; these patients lacked motivation for returning to work. One patient preferred to go on a pension, but it proved possible to negotiate a part-time job with his employer. A less employable patient was given work at the center delivering supplies. Behavior modification involved reinforcing the rehabilitative efforts of the patient and extinguishing behavior characteristic of the sick role. These patients tended to seek attention by continual complaints about physical symptoms. The staff ignored their complaints but responded with positive attention to any constructive behavior. Two of the depressed patients showed improvement after about a year of regular contact and support. The third did not improve, but contact with his family was limited by distance and by the patient’s very ambivalent wife. Also, this patient had been on dialysis for 2 years when behavior modification 240

and environmental support were attempted. This suggests that such treatment should begin before patients are entrenched in the sick role and overwhelmed by the pessimism which feeds their depression.

Denial A group of patients who could not be given direct help with their feelings were those who persistently denied that they were upset about dialysis. They presented the attitude that renal failure was a relatively minor problem, and they tended to avoid other patients. At first the social worker had difficulty accepting such extreme dental as consistent with a satisfactory adjustment to dialysis. It was expected that these patients would break down in a crisis when they could no longer maintain their defense of denial. Thus it was considered important to reach their underlying feelings during training, while they were still in contact with the staff. These patients were urged to take part in group discussions where negative feelings about dialysis were freely expressed and accepted. The results indicated that confrontation with the negative feelings of others was not effective with this group of patients. They complained of being burdened with the problems of others, expressing the fear that such feelings were contagious. They still did not admit to any anxiety or depression. Moreover, the social worker’s fear that denial might not be an adequate defense in a crisis was not borne out by experience. Patients who were high in denial were able to cope with medical crises, in two cases the loss of a kidney transplant. 241

Finally the social worker adopted a policy of nonintervention with this group of patients.

Psychosomatic Symptoms Some patients responded to their situation with physical symptoms that appeared to have a psychological cause. The most common symptoms were headaches during dialysis and blood pressure irregularities. Tranquilizers were prescribed by the doctor for these patients but often proved ineffective. The social worker’s approach was to help the patient express his anxiety verbally. Whenever possible the family was included in order to create an atmosphere in which the patient felt free to discuss his anxiety with them. Most of these patients seemed to feel guilty about being tense, that is, not being a good patient; this is probably why they chose physical symptoms as an acceptable way of getting attention. The approach of accepting the anxiety as normal and encouraging its direct expression usually brought good results in one or two interviews. If symptoms were not easily alleviated, desensitization techniques were sometimes employed. The following case is illustrative: During his 1st year on dialysis, Mr. D. complained of recurrent headaches, during the last 3 hours of a 6-hour treatment. Although headaches are common with renal failure, there was no physiological reason for them to occur during dialysis. Thus no medical treatment was offered. With Mr. D.’s permission, the social worker used relaxation techniques with him. A home visit was made during dialysis, beginning at the critical 3rd hour. The worker distracted him 242

by engaging him in a long conversation about the pleasurable early years of his life. This had the desired effect of preempting the onset of Mr. D.’s usual headache, which convinced him that there was no physiological basis for them. He was given a relaxation tape to use during dialysis. In a few weeks he returned the tape, reporting that the headaches had been cured. The treatment of psychosomatic symptoms by encouraging catharsis and providing desensitization was fairly successful. All patients reported some improvement, and some, like Mr. D., reported complete remission of symptoms.

Sexual Dysfunction The emotional aspect of sexual dysfunction is an emerging area of concern for social workers in health care. Generally, patients were reluctant to discuss their sexual functioning with the staff. A few men complained to the doctor about sexual inadequacy, but he could offer no successful treatment. The social worker experimented with group counseling on sexual problems for interested patients, holding two evening groups. Only three couples came for group counseling, but it served the additional purpose of opening the topic for discussion. Several others approached the social worker individually after reading a general account of the problems discussed in the patients’ newsletter. The sessions were a combination of educational and supportive content, with the goal of lowering the couples’ anxiety and teaching them to function better sexually. Initially 243

a presentation was given by the doctor on the physiological reasons for sexual dysfunction in renal patients. He explained the reasons for decreased hormone production concurrent with uremia and reassured patients that this should improve with adequate dialysis. Following this, the social worker presented information on human sexuality, emphasizing the psychosocial aspects of sexual dysfunction as described by Kaplan (1974). The nature of the sexual problem for all three couples was erectile dysfunction in the patient husbands: One experienced unstable erectile patterns similar to that of early adolescence, another suffered from premature ejaculation, and the third had erections without ejaculation. The social worker approached these problems from the point of view that the wives could help by becoming more active in the sexual relationship. The wives found this difficult to accept; either they had never been enthusiastic about sex or they were inhibited about taking the initiative. The social worker attempted to modify these attitudes by demonstrating an accepting attitude toward sexual behavior that would facilitate responsiveness in the husbands. This was done by talking explicitly about oral-genital stimulation to induce erections or to provide an orgasm for the wife. The attitude communicated to the couples throughout was that the sexual dysfunction was a natural concomitant of renal failure, that it would be helped by dialysis, and that the couple could do something to improve their own sexual relationship. There were no immediate results reported from the group who received sexual counseling, but this was understandable in 244

that it requires time to change deeply ingrained attitudes. Also, there appeared to be an absence of motivation on the wives’ part. With all three couples, it was the husband who identified himself as needing help with a sexual problem. There were some indirect benefits arising from this group counseling. Three or four other couples, after learning about the sessions, approached the social worker privately about their own sexual problems. They reported some improvement after counseling in the treatment methods suggested by Kaplan. There was also a change in staff attitudes as a result of sexual problems becoming a topic for discussion with patients. The nurses began to read more on the subject and added it to their regular training program. Some videotapes were made of the staff discussing sexual problems with patients, and these were used for professional education outside the center. As can be seen from the foregoing, the social worker provided leadership in identifying and responding to sexual dysfunction. This encouraged patients to seek help with their problems. It also stimulated the medical staff to provide education on the physiological aspects of sexual dysfunction and created a more open atmosphere for patient-staff exchanges.

Increased Patient Responsibility for Treatment More responsibility is being given to patients for their own treatment of chronic conditions. The success of this approach depends 245

upon the patients’ willingness to take this responsibility and their capability for learning.

Patient Willingness Increased expectations for patients to carry out their own treatment may bring resistance due to the patient’s dependency/independence conflict. The nurses were very sensitive to overdependency on the part of patients and tried to discourage this. They tended to handle signs of dependency by withdrawal, which increased the patients’ anxiety and caused them to behave in even more dependent ways. The social worker noted the escalation of anxiety in this mutually reinforcing system. The nurses were encouraged to combine their expectations for responsible behavior from the patients with recognition of their needs for emotional support. An example of this was Mr. S.: Mr. S., 33, had an inadequate personality. After commencing dialysis, he was ambivalent about going back to work and gained obvious satisfaction from the medical attention he received. He called the center frequently on trivial matters and required home visits to deal with dialysis problems that he created for himself. The staff responded with frustration and a cool attitude toward Mr. S. He in turn pressed for more attention, becoming argumentative and hypersensitive to slights. The problems were resolved when a job was found for Mr. S. delivering supplies to the home patients. He was able to get attention by constructive activity, and his other requests diminished to a normal level.

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The above was an extreme form of overdependency, but other patients manifested this to a lesser degree. It was generally handled by recognition of the feelings behind the demands; response by the staff on the feeling level tended to diminish dependency much more effectively than withdrawal on the part of the staff.

Educational Issues Some patients were able to move through training easily, with confidence in their ability to manage at home alone. Others were held back by learning problems. Either they were slow learners or they were very anxious which caused them to block on critical points such as cannulation (insertion of needles to begin dialysis). Slow Learners The most important aspect of dealing with a slow learner was to identify this at an early point. This avoided setting goals too high or confusing an emotional problem with an intellectual one. The social worker made the initial assessment of the patient and took an educational history. If the patient had not progressed far academically, the reason for this often indicated whether it was related to lack of ability. For example, a woman who left school after Grade 4 in Italy due to social custom might be much more educable than a man who reached Grade 8 in Canada, having been promoted because of his size in the days when special classes did not exist.

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Slow learners could also be identified by their approach to training. There was a tendency for them to cover up their inadequacy by pretending to understand more than they did, probably because of anxiety about past failures. Slow learners often had poor memories. They might learn a procedure during one dialysis, but on the next would appear to have forgotten almost everything. The social worker referred one such patient to the hospital psychologist for testing, and his memory problem was confirmed. With this knowledge, the training nurses were able to provide the extra help the patient required, repeating procedures many times over until he could retain them. The reaction of the nurses to learning problems sometimes made it difficult to assess the patient. They were inclined to compensate for their patients’ weaknesses, probably due to their own frustration and overidentification with the patient. This would become apparent when the nurse was absent and another took over the training. In order to avoid such pitfalls, nurses were encouraged to share all their concerns about patients’ progress with the team. The social worker responded to such concerns initially by observing a training session with the patient in question. Sometimes it was found that the partner colluded with the patient in counterproductive behavior. The social worker as an observer was able to identify this and help the nurse to deal with it. A later method used was the taping of training sessions by nurses experiencing difficulties. This allowed the team collectively to diagnose and treat the problem. Another advantage was that nurses were more open to suggestion from their

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colleagues who had experienced similar training problems than to advice from the social worker alone. Emotional Blocks to Learning There were other patients in the center whose blocks were emotional rather than intellectual. Sometimes these reflected a marital relationship in which one partner resisted learning dialysis because this would lead to greater involvement in a direction he or she was trying to resist, as in the following cases: A woman with strong hysterical elements to her personality was reluctant to take on the role of assistant to her passive, dependent husband. The evidence from her behavior suggested that she viewed this as a threat to her own dependency needs in that she would be assuming a parent role with him. The social worker, after analyzing this relationship, was able to meet some of the wife’s needs by therapeutic interviews with her. This enabled her to be more giving to her husband and enhanced her participation in training. Family therapy was attempted with this couple and their children, but the patient resisted so strongly that it could not be continued after three sessions. Another example of anxiety inhibiting learning was a wife who had been used to a subservient role with her domineering husband. He was very critical of her during training, accusing her of being “stupid,” especially when none of the staff were present to overhear this. The wife reacted by behaving as though she were slow or stupid, whenever she was uncertain about procedures. This seemed to be an emotional reaction, as

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she had no trouble initially learning the procedures and was quite intelligent in general conversation. The social worker attempted relationship therapy with this couple but found the husband to be highly defended against changing the relationship. It seemed that patients who were already anxious about their physical condition were tenacious in clinging to neurotic family relationships because any change in this area would initially increase their anxiety. Thus the social worker had to focus on the assistant, providing her with the support and reassurance that the patient was unable to give. Some patients had personality traits that were incompatible with the assumption of the responsibility involved in home dialysis. The major one was irresponsible behavior on the part of the patient or assistant. Excessive drinking on the part of the assistant sometimes interfered with dialysis. An occasional husband would keep his wife waiting for treatment while he was out drinking or would be present but intoxicated. The social worker found, in working with these husbands, that they had relatively dependent personalities and had coped by letting their wives assume the responsibilities in the home. They resented the expectations made by dialysis and felt threatened by the change in a previously stable relationship. Finally, there were cultural differences between family and staff expectations, especially with North American Indian families. They had difficulty meeting the standards of time and measurements involved in dialysis, as these were not important considerations in their own society. Indian families might learn the regime easily but follow it casually, in

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keeping with the easygoing and fatalistic orientation of their own culture. The social worker was able to identify the reasons described above for conflicts between patients’ needs or values and medical expectations. This helped reduce the frustration of other staff members. Families were given recognition of the feelings that made cooperation difficult for them and were encouraged to express their resistance verbally; at the same time, the consequences of continued resistance by lack of cooperation were pointed out. In most cases the inevitability of dialysis treatment reinforced the social work intervention, and the family behavior was modified to an acceptable degree.

Communication Another area in which the social worker functioned was communication. Problems arose when families and staff did not meet each other’s expectations. Patients often felt they were not receiving adequate support, and staff were frequently dissatisfied with the way patients carried out their responsibilities. Such conflicts were aggravated by treatment crises from time to time and by physical deterioration in the lack of response. A patient had persistent mechanical problems with his machine that were difficult to correct. Poor communication between nurses and service personnel resulted in delays, and the family was left with the impression that no one cared about their predicament. They tried to hide this, but the nurses sensed something wrong and referred the patient’s wife to the

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social worker. She eventually dissolved in tears, admitting her feeling of having been abandoned and her fear that such an expression was not acceptable to the staff. Some patients became frustrated because they felt they were doing their best to adhere to the medical regimen yet they were continually reprimanded for their shortcomings. The social worker, being somewhat removed from medical responsibilities, could encourage patients to express their negative feelings, listening to them sympathetically and accepting them as valid. As a result, they gained the confidence to discuss how they felt with the medical staff. The social worker also encouraged patients to consider the staff’s point of view, focusing on the common goal which was the patient’s well-being. This helped to lower the patient’s emotional barrier and facilitated discussion with the appropriate staff person. Sometimes concurrent discussion with the medical staff was necessary to modify their reactions to patient anger. They were helped to see the patients as frightened rather than aggressive or stubborn as they might appear. Usually with greater understanding on both sides, patients and staff were able to sort out their differences and move on to a better working relationship. Communication was likely to be a problem when the dialysis partner took major responsibility for dialysis. Such a situation existed in about three or four families of those involved with the center. It seemed to develop in relationships where the partner already dominated the patient. The chronic illness and dependency of the patient tended to increase the imbalance, 252

with the result that the partner assumed major responsibility for treatment which had been delegated to the patient. The above situation understandably created problems in communication because the patient became an intermediary between the staff and the partner who was in charge of treatment. New procedures or medication might be explained to the patient but misunderstood by the partner who did not receive the information firsthand. Or dialysis problems that upset the partner might not be reported to the staff because the patient, being less aggressive, was hesitant to do so. Eventually the partner would become frustrated to the point of an outburst, either with the patient or the staff. On the other hand, the patient sometimes dominated the partner. In relation to dialysis this could result in a “master-slave” relationship, with the patient giving the orders and showing little appreciation for the partner’s efforts. Resentment tended to build up in such situations, with the partner complaining to the staff about the patient’s behavior and often becoming quite depressed because of unexpressed anger. The nurses usually recognized that communication problems with these families were sabotaging treatment, but they were uncertain how to resolve this. The social worker facilitated discussion with the couple, with the goal of convincing the assistant to lei the patient take more responsibility for treatment. The difficulties created by the imbalance were pointed out. Usually the partners had some motivation to change because they were uncomfortable about carrying responsibility while lacking the necessary information. Sometimes they had feelings of pity or guilt toward the 253

patient because he was ill and they were not. Sometimes they were overly dependent on the patient, which made them very anxious about the future. In discussion with the social worker they gained some insight and thus could relinquish some of the responsibility that their feelings had led them to assume. In summary, communication was hindered by disappointed expectations on the part of both patients and staff, as well as by imbalance in family relationships. The social worker intervened by helping patients and staff to understand the basis of the communication problems, to gain insight into their own feelings, and to begin communicating more openly.

Rehabilitation in Chronic Illness The rehabilitation of the patient becomes of prime importance in chronic illness. This refers to vocational rehabilitation as well as to the already discussed psychosocial adjustment of the patient and his family to the changed circumstances. Problems of vocational rehabilitation were found to be quite extensive in that 25% to 30% of the male patients in the center functioned at reduced levels after commencing dialysis. Not all of these patients were viewed as presenting rehabilitation problems. Some were older patients who retired early or changed to part-time work. Due to their age it seemed reasonable for them to reduce their work loads at this time. There were men, however, who considered withdrawing from their jobs due to negative attitudes from employers or their own fear of failure. The role of the social worker became one

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of patient advocate, interceding with the employer to ensure a positive attitude or requesting modification of the job to the patient’s capabilities. As a result several men who would probably have retired as “disabled” or faced the difficulty of seeking new employment were able to return to their previous jobs. The most difficult group to rehabilitate proved to be a few younger men who had never been stable in their employment. After commencing dialysis they tended to use illness to rationalize their continued absence from the job market. In spite of continual efforts, the social worker was unable to effect any change with these men. Thus it seems worth considering why these efforts were unsuccessful. A common characteristic of these men with chronic employment problems was that their families tended to be overprotective and supported the patient’s view of himself as handicapped. The case of Mr. C. illustrates this: Mr. C., 33, had worked at various unskilled jobs before his renal disease became apparent in his late 20s. During a period of unemployment after his first hospitalization, he was given a retraining course under government sponsorship. He then undertook a factory job suited to his training but left this when he was feeling unwell prior to commencing dialysis. He never returned to this job and had been on a government disability pension for 3 years when the social worker met him. Intervention began with a formal referral to the social worker from the doctor, who assured Mr. C. that he was well enough to return to work. Contact was made with his former 255

employer who agreed to see him; but Mr. C. made a poor impression at the interview, probably reflecting his lack of motivation. When it was recognized that Mr. C. was resisting employment despite his expressed wish to work, the social worker focused on getting support for a return to work from the pension office and from his family. The social worker from the pension office was seen with the C.’s to educate her to the potential of dialysis patients to lead a normal life. Until then she had considered Mr. C. to be a sick man, and her efforts on behalf of the family had been to provide them with all possible benefits. As a result this reeducation, the social worker arranged for Mr. C. to see the job placement officer in the pension office; again he resisted moving toward employment. Attempts were made to involve Mrs. C. in counseling from the beginning, but she resisted coming to the center and home visiting was infrequent due to distance. A picture gradually emerged that showed her to be the greatest block to Mr. C.’s returning to work. Although she was often demanding and hostile toward the people close to her, she also needed the family for security. As a result, she kept Mr. C. in an emotional bind alternately offering a warm, seductive relationship, then rejecting him as not supportive enough to her. As a result he had no energy left to resume a normal work life. In addition, her recurrent message to him was that he should stay home to meet her emotional needs. The C. family was firmly entrenched in a neurotic system in which illness was used to support other needs. Other families were less neurotic, but in each case where a relatively young 256

man resisted a return to work it was found that the family colluded in this. Experience with the above patients suggests that it is important for the social worker to identify such cases early and to work with the total family. Some families will be too resistant to respond even to the total approach; but time spent with the patient alone, when the family is giving a contradictory message, seems in retrospect to have been a waste of effort. Generally the social worker found rehabilitation to be a fruitful area for work with dialysis patients who had a stable employment history and a number of working years left. Intervention with employers helped them to return to work. The few cases where vocational problems had always existed proved unsuccessful, probably due to family support for the sick role.

Decentralization of Service The center was physically separated from the hospital to which it was related. There were six nurses, a secretary, and the social worker but no permanent doctor in the center. In the absence of other professions, close relationships developed between the social worker and nurses. The advantage of this was that all the problems each staff member encountered with the patients were known to the others. Thus all staff tended to address themselves to the patient with similar goals in view. For example, if a patient was careless with his dialysis routines, all the staff knew about this. Thus, he could not try out various people and

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receive different responses, following the one closest to his own wishes. On the other hand, there was a tendency for close staff relationships to reinforce negative views of a patient: If a nurse had a disagreement with a patient, the other nurses always knew about it and supported their colleague. Patients recognized this and sometimes expressed a fear of coming to the center because they felt “everyone was angry” with them. Some of the tension described was probably related to the increased sense of responsibility created by decentralization. In a hospital setting, the nurses would have felt that responsibility for ongoing treatment rested with the doctor. Because there was no doctor located in the center, the nurses felt a heavy load of responsibility for the well-being of the patients. Underlying their concern that treatment be well conducted was a realistic fear that a mistake by the patient or assistant could be fatal. This created an atmosphere in which nurses and patients alike became easily upset, so that disagreements were not uncommon. The uniqueness of the social worker’s position in the center had some disadvantages, illustrating the difficulty for professionals isolated from colleagues. Because the nurses were viewed by the patients as carrying the medical authority, the social worker became a natural confidante for the patients in disagreements about treatment. In subsequent discussions with the nurses, the social worker would express the patient point of view or suggest reasons for his behavior, which might be interpreted by the nurse involved as support for the patient and implicit criticism of her.

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The social worker found this aspect of decentralization difficult to resolve. It was aggravated by professional insecurity, this being the social worker’s first experience in a secondary setting and the nurses’ first experience with this kind of decentralization. It was felt that the goal should be for all staff to feel secure enough to offer support and constructive authority to patients. The social worker could facilitate this goal by encouraging the expression of concerns and frustrations in team meetings so that these were not projected onto dealings with patients. Although this goal was not achieved, there were some individual successes. An example of this was the work mentioned earlier in helping the nurse to deal with a slow learner. The nurse expressed her frustration, she was given help in assessing the patient’s ability and in adapting her teaching to this. As a result her concern did not result in a poor relationship with the patient. It was more difficult to deal with the medical staff’s long-standing feelings toward patients who were seen as jeopardizing their own treatment. Often tensions had been built up over years of interdependency, causing hostility when treatment did not go well. The nurses became angry with patients who were careless about treatment, feeling that their work was being undermined; concurrently the patient and partner, under the strain of dialyzing at home, tended to interpret the staff reaction as overly critical and felt similarly undermined in their task. The social worker attempted initially to deal with the feelings on each side separately, but this created interdisciplinary tension as noted above. Eventually a form of patient-staff 259

therapy was tried, in which all those concerned sat down together to discuss their interactions. Feelings were elicited that showed the family that the team was concerned about their welfare, and the team gained some insight into the reasons why patient and partner were not cooperating with treatment. The experience of sharing feelings also minimized the need for patients to complain to others about the staff and for the staff to unload on each other about problem patients. As can be seen from the foregoing, work in a decentralized unit demands skills beyond those usually required in social work. Interdisciplinary relationships are close and may result in the reinforcement of negative as well as positive thinking. The sense of increased responsibility causcs anxiety, which tends to escalate disagreements with patients and among team members. The social worker needs confidence and skill to serve as a mediator and to facilitate the expression of feelings while retaining the trust of both patients and staff.

Conclusion Recent changes in the provision of health services have broadened the area in which a social worker can contribute to patient care. In direct relation to the patient, the increased recognition of emotional reactions allows the social worker to treat these, and the emphasis on rehabilitation calls for other social work skills. Indirectly, the social worker has an important role in facilitating patient-staff communication and in handling interdisciplinary relationships. Social work in health care has thus become more complex and demanding, but the social worker has the opportunity to be a central

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member of the health care team by meeting the above challenges.

Note Reprinted from Social Work in Health Care, Volume 3(4), Summer 1978.

References Abram, H. S. Psychiatric reflections on adaptation to repetitive dialysis. Kidney International, 1974, 6. Baillod & Moorehead. Review of ten years’ home hemodialysis. Proceedings of the E.D.T.A., 1974, 11, 70. Baillod et al. Social and psychological aspects of regular hemodialysis treatment. Proceedings of the E.D.T.A., 1968, 5, 100. Finkelstein, S. H. Dialysis marriages. Journal of the American Association of Nephrology Nurses and Technicians, Fall 1974, 1(1), 14. Fishman & Schneider. Predicting emotional adjustment in home dialysis patients and their relatives. Journal of Chronic Diseases, 1972, 25, 102. Hagberg, B. Psychological factors of importance in adaptation to home dialysis. The Gambro Symposium on Home Dialysis, Opuscula Medico-Technica Lundesia, 1974, 13, 32. 261

Huber et al. Factors affecting rehabilitation in dialysis patients. Proceedings of the E.D.T.A., 1972, 9, 259. Kaplan, H.S. The new sex therapy. New York: Brunner/ Mazel, 1974. Kaplan De-Nour & Czaczkes. Adjustment to chronic hemodialysis. Israel Journal of Medical Science, May 1974, 10(5), 501. Kress, H. Adaptation to chronic dialysis: A two-way street. Social Work in Health Care, Fall 1975, /(1), 41-46. Leff, B. A club approach to social work treatment within a home dialysis program. Social Work in Health Care, Fall 1975, /(1), 33-40. Levy, N. B. Sexual adjustment to maintenance hemodialysis or renal transplantation: National survey by questionnaire: Preliminary report. Trans-American Society Art Int. Organs, 1973, 19, 142. Malmquist, A. A prospective study of patients in chronic hemodialysis. I. Method and characteristics of the patient group. Journal of Psychosomatic Research, 1973.17, 336. (a) Malmquist. A. A prospective study of patients in chronic hemodialysis. II. Predicting factors regarding rehabilitation. Journal of Psychosomatic Research, 1973.17, 341. (b) Malmquist, A. & Hagberg. A prospective study of patients in hemodialysis V. A follow-up study of 13 patients in home

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dialysis. Journal of Psychosomatic Research, 1974, 18(5), 321. Marshall et al. Characteristics of couples with poor outcomes in dialysis home training. Journal of Chronic Diseases, 1975, 28, 375-376; 379. Moon et al. (Eds.) The first two years, 1962-64. London: Swale Press, 1965. New, D. Dependency in a hemodialysis patient: Leading cause of anxiety. Journal of the American Association of Nephrology Nurses and Technicians, 1975, 2(2). Phillips et al. Social work and medical practice. Hospitals, February 1971, 45, 76-79. Pierce et al. Hemodialysis and denial psychopathology or realism. Vinculum, 1972, 4(4), 1. Reichsman, F. R. & Levy, N. B. Problems in adaptation to maintenance hemodialysis. Archives of Internal Medicine, 1972,130, 859-864. Smith, C. R. The medical team. British Medical Journal, August 1973, p. 443. Snow & Clark. Understanding patient learning and performance capabilities for home dialysis training. Journal of the American Association of Nephrology Nurses and Technicians, 1976, 3(1), 23.

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Winokur et al. Intelligence and adjustment to chronic hemodialysis. Journal of Psychosomatic Research, 1973,17, 31.

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The Anatomy of Discharge Planning Grace Fields, MSW, ACSW At the time of writing Grace Fields was the Associate Editor of Social Work in Health Care. The care of human life and happiness, and not their destruction, is the first and only legitimate object of good government. —Thomas Jefferson People caught in a medical cure system that has not been able to effect the total cures they need are defined by Utilization Review mechanisms as discharge problems. People are not discharge problems. They have discharge problems. The plight of being unable to leave a hospital on one’s own when physical treatment there is at best demoralizing, and at worst, disastrous. It is difficult to envision a time when the intervention of a social worker is more needed than when an individual is unable to exit from an institution he would like not to have entered in the first place. A family’s inability or unwillingness to absorb its incapacitated member is also a statement of limitation, if not actual trouble. Are family members so burdened already that they are also at risk? Have interpersonal relationships 265

deteriorated? Are interlocked human needs conflictuel? Who can better assess and work with a family’s resources and limitations than a social worker? The collective incapacity of many persons to transit smoothly back to accustomed life styles after illness and hospitalization is a societal stress. This is the product of our mobile, competitive culture. Advertisements do not sell us on meeting common human needs. They convince us that we can continue to work and play and buy and make love. The universality of aging and disability has not been reckoned with. And who understands the cost of defending against stark reality better than social workers? That is how we got into discharge planning. Individuals, families, and society need us at this point, because we know the complexity of grappling with the problems. Three articles in this issue deal with this work. We believe they reflect our growing, though sometimes uncertain, pride in owning this responsibility and our increasing concensus about its human and professionally tactical significance. To the extent that we help patients leave the hospital, because “the doctor wants the bed” or “UR is pushing us,” we act as demeaned instruments of a system we neither understand nor can hope to impact. To the extent that we look behind those “presenting requests” and identify the sources of pressures, assessing their nature, strength, and legitimacy, we will be able, trustworthy helpers to patients and families, and responsible colleagues to physicians and administrators.

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To view discharge planning as low status, is to miss its significance. How we plan for those who need care reflects our societal as well as our social work value system. What is important? Who decides what is overpriced and why? How we identify needs, expose care deficits, propose alternatives, and mobilize human monitoring systems, will shape our human value system about the quality of life. Accountability is reciprocal between managers and managed, between provider and consumer, between regulators and regulated, and between taxpayers sometimes turned patients and healing institutions sometimes turned expedient. Hearings in the courts of common sense and public opinion are still possible through the press, political process, and other methods of public enlightenment. Discharge planning is where medical care interfaces with quality of life concerns. It is where human care needs clash or mesh with our technical cure capability. It is where institutions must validate their mission and raison d’être. It is where the action is, and we belong there. Let us hold that territory with courage, compassion, resourcefulness, and pride.

Note Editorial reprinted from Social Work in Health Care, Volume 4(1), Fall 1978.

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Evolving Social Work Roles in Health Care: The Case of Discharge Planning Kay Wallis Davidson, MS, CSW At the time of writing Ms. Davidson was Assistant Director, Social Work Department, Lenox Hill Hospital, 100 East 77th Street, New York, NY 10021, and was a doctoral student at Hunter College School of Social Work. The author thanks Professor Mildred Mailick of the school for her assistance in the development of this article. SUMMARY. This paper examines changing definitions of social work’s role in health care and the continuing struggle for professional autonomy, in the context of the profession’s responsibility for discharge planning. Planning for posthospital care is seen to be a major function of social work today and of traditional importance since social work’s inception in the hospital setting. Major role and value conflicts are highlighted in a review of social work’s traditional ambivalence toward the role of discharge planner and current recognition of the initial contribution of the profession to the continuing care of hospitalized patients. During the last 50 years services offered by hospitals have reflected major scientific and technological advances.

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Concurrently, social work has expanded its knowledge base and scope of practice. Social workers in the changing hospital world have frequently needed to redefine their tasks and role. This paper reviews evolving definitions of social work’s role in health care and examines the linkage of such role changes to hospital social workers’ ongoing struggle for professional autonomy. Both the issue of changing roles and the quest for professional autonomy are examined in the context of social work’s relationship to and responsibility for patient discharge planning. Discharge planning has been an accustomed function since medical social work’s earliest days, and has long been institutionalized as a primary role of hospital social workers with patients and families (Berkman & Rehr, 1972). Indeed, the main impetus for social work’s entry to hospitals was the need of discharge planning assistance for patients. However, new accountability structures and constraints on hospitals, patients, and social workers have led to a reexamination of the tasks involved in the process of planning for discharge of patients from acute care hospitals and the conceptual rationale for this work. The central role and value conflicts confronted by social workers, as they address the complex interrelationship of service to clients, survival needs of hospitals, and constraining regulations, are examined in the context of social work’s historic relationship to discharge planning.

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The Early Roles of Social Workers in Health Care Although the first almoners, appointed in London in 1895, perceived their role as providing services to needy patients, employing hospitals were more interested in their ability to assess the need for medical relief and prevent abuse of voluntary hospitals. Butrym (1967) suggested that the ensuing ambiguity of the role of hospital social worker thus became “a continuous feature of the history of the profession” (p. 22). Social work participation in planning for patients’ posthospital care, as in all aspects of planning, since its inception, has rested on the good-will and decision making of physicians. Berkman and Rehr (1970) note that after Dr. Cabot’s establishment of the Social Work Department at Massachusetts General Hospital, antagonism of physicians led to limitation of social work assignments to those specifically requested by a physician. They suggest that whereas other aspects of social work practice have changed, the patient referral system has not altered significantly. Such a system fosters dependence on physicians both for selection of clients to be served and for the choice of time of intervention. To the extent that social work accepts this system of placation of physicians, it “relinquishes its right to set its own priorities.” At the outset of medical social work, priority was given to alleviation of social problems that interfered with medical care. Discharge planning was an integral part of this thrust, as is exemplified in Cannon’s (1913) concern that a patient

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leaving hospital care too soon or without convalescent plans risked “grievous results of an incomplete recovery.” By 1940 hospital social work had begun to address problems of patient needs being determined by doctors and hospital administrators (then overlapping roles). Bartlett (1957, pp. 35-36) pointed out that no social work department was able to meet all social needs of all patients and that selection of priorities rested with the institution. She referred to constant pressure to discharge patients and reported that referrals consisted “largely of requests to arrange removal from the hospital.” Such an emphasis on mechanical procedures was perceived as pushing out the “subtle aspects of the casework approach” (Bartlett, 1940). Vital as the procedures for admission and discharge were to hospitals and their patients, they were ancillary and had low status in relationship to the central treatment purpose of the institution.

Expanding Frontiers and Evolving Roles As increasing technology and a climate of medical discovery have led to eradication of some diseases, arrest of others, and consequent extension of life expectancy, there has been an increase in the population of chronically ill and elderly. Thomas (1976), pointing out that the nation’s health has improved, but that medical science has not achieved the special wisdom with which it is endowed in public mythology, states that “we are, in a sense, stuck with today’s technology, and we will stay stuck until we have more scientific knowledge to work with.” Nevertheless, public

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expectations of medicine have become high and, together with the spread of public knowledge of entitlements, have led to anticipation of high-quality medical care in hospitals and its continuation in the community. There are, however, fewer resources to provide such community care as new social and family patterns diminish public availability and readiness to nurse the old, sick, and dying at home. As stated in the credo of Social Work in Health Care, “The ability to help with the psychological, sociological, and physical consequences of illness has not kept pace with the technological ability to sustain and prolong life” (“The Humanization of Health Care,” 1975, p. 5). Although the need for discharge planning services increased in scope and complexity with medicine’s progress, it is remarkable that social work has not rated its own professional achievement in this area highly. Two factors appear to have contributed to hospital social work’s definition of discharge planning as detracting from the profession’s appropriate role. First, there was a change in the focus of the profession. At a time of professional uncertainty and exploration, social workers’ earliest roles and tasks in hospitals in fulfillment of doctors’ requests were mostly for direct, instrumental and visible services to individual patients, and were not unwelcome. For the first 2 decades of the century, there was little conflict with social work’s own emphasis on morals and character building through casework. Since the 1920s, however, after the impact of Freud and social work’s recognition of the inner drives motivating behavior, the profession’s focus moved to addressing intrapsychic causes of problems and suffering. Inevitably, as the early proponents of social work struggled to overcome its 272

label as a nonprofession, social workers in hospitals joined the mainstream effort to be identified as experts and full professionals. In hospitals, the search for professionalization led to new goals for social workers, such as those of establishing themselves as experts on psychosocial aspects of health care and a concurrent withdrawal from purely administratively useful tasks of hospitals. It was hoped that as a treating professional, the social worker might stand as a peer of doctors and function with more recognized autonomy. Secondly, by virtue of the delegation to social work of the task of arranging discharge plans, the social workers felt that they were assigned the physicians’ “leftover” tasks, not requiring diagnostic and therapeutic skills. As discharge planning was not rated by other professionals as requiring skills and knowledge, it became to social workers an unwelcome chore that detracted from the image of professionalism they were striving to achieve. In 1915 when Flexner discounted social work from the narrow ranks of the professions, he described social workers as less experts than mediators whose concern was to summon experts (pp. 576-590). Levy (1975) has commented on social work’s long-term response: “Social workers as a group have not had a restful moment since. Much of what they did as an organized group between the 1920s and 1950s was calculated more to satisfy Flexner’s criteria than to achieve substantive growth as a helpful occupation” (p. 33). For the total profession, efforts to professionalize involved development of a firm knowledge base of systematic theory. The timely influence of Freudian theory offered such a base and enabled social work to abandon its moralistic stance in 273

favor of a psychotherapeutic model. Perhaps less fortunately, much that was abandoned with the moralistic tone was crucial to social work’s unique contribution in helping clients to cope with the realities of economic, material, and physical distress. Many services were abandoned or labeled nonprofessional in the rush to develop professional authority. Nowhere more than in hospital social work was the medical model of treatment of clients more welcomed as a source of professional status and respect. As social work’s efforts were to reach clients’ inner problems and engage them in psychotherapeutic relationships, the role of hospital social worker was redefined as psychosocial treatment of patients. Patients were helped to explore their psychological reactions to problems, and physicians were offered social work’s newfound psychosocial expertise as consultation. Diminished was the response to environmental problems and their impact on people that had characterized the efforts of the forerunners of professional social workers. Some hospital social workers lost sight of patients’ material and emotional difficulties in coping with illness and its ramifications. Yet discharge planning continued as a social work function, if for no other reason than that it was of primary importance to doctors and administrators who controlled social work jobs. In addition, some social workers had conviction about the importance of the professional’s unique contribution in planning aftercare for patients. Nonetheless, little was written to document such awareness during the entire period from 1920 to 1960. A more recent statement by Stein (1975) upholds the approach of those who maintained the professional validity of social 274

work involvement and leadership in discharge planning: “Sound discharge planning of patients, concerned with a person’s future way of life frequently calls for the greatest of professional security and skill in helping other health professionals to delineate the patient’s need, and in aiding individuals and their families in their decision reaching process” (p. 114). Social work retained the discharge planning function (a) because of a commitment to assist patients with developing adequate discharge plans and (b) because it was a major institutional need to implement successful bed turnover. For many years, for many hospital social workers, it was the “stepchild” function thrust upon them by dependence on doctors for case finding. The tasks of planning discharge were always complex, some demanding skill and some suitable for delegation to less skilled personnel. This mix made the process unwelcome to social workers eager to portray their professional skills. Hence, there was dichotomy between institutional medical expectations and those of social workers. Ullmann and Kassebaum (1961) report a study in which it was found that doctors “tend to conceive of the social worker’s role more in terms of planning for medical care and environmental help, whereas social workers see it more in terms of casework.” The potential role conflict arising from such divergent views was confirmed in a study by Olsen and Olsen (1967) which identified that doctors perceived arrangements for posthospital care and referrals for community services as the most appropriate tasks for social workers. Social workers thought they should assume greater responsibility and a wider 275

range of roles than doctors would concede. Social work “continually must demonstrate the value of its services to the medical profession and to the hospital which places it in a perpetually defensive position.” A British study reported that hospital social workers found discharge planning the most unsatisfactory aspect of their work, and that other staff did not accept the worker’s judgments about whether patients should be discharged (Carter & Jinks, 1972). Heyman (1962) categorized discharge planning as a nonprofessional task to be undertaken by lesser trained staff of social work departments, although acknowledging the need for skilled staff in special situations when disturbed relationships interfered with routine planning. In the late 1950s and 1960s Bartlett and others predicted and promoted the evolution of hospital social work roles from the early model of individual direct services to a broader concept of consultation to the institution and its professions and of social work participation in social policy and program formulation (Bartlett, 1962, 1963; Cowin, 1970; Hirsch & Lurie, 1969; Weiner, 1959). A fine example of an expanded range of social work activities in relation to discharge planning for elderly patients was undertaken in the 1960s at Massachusetts General Hospital (Clark, 1969). In other settings, although hospital social workers continued to meet institutional expectations by providing services for discharge planning, many failed to count such services as part of the new and growing expansion of social work roles.

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Bureaucratic Constraints Professional Autonomy

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Hospital social workers in the 1970s confronted a new version of the ambiguity traced to the profession’s origin. Such professional conflicts are identified by Teague (1971) as follows: At present there is widespread alarm among social workers in the health field who feel that their professional service goals are being thwarted and denied by administrators with the power to impose bureaucractic controls. Pressing demands are being made on hospital social service departments to modify their psychosocial counseling activities and get on with such critical institutional concerns as patient discharge planning, arrangements for patient transportation services, and referrals to community agencies. Bureaucratic control by employers and lack of professional autonomy are long-standing problems for medical social work. According to both Carr-Saunders (1955) and Etzioni (1969), social work, because of its limited autonomy, is classified as a semiprofession. Greenwood (1957), in recognizing social work as a profession—“it has too many points of congruence with the model to be classifiable otherwise”—did not focus on the crucial issue of autonomy. Constraints over its roles and tasks may not eliminate social work from the professions, but they present recurrent dilemmas and conflicts.

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Studies by Billingsley (1964) and Scott (1969) examined the potential conflict of the professional in a bureaucratic role, and Billingsley concluded that “in spite of the social worker’s intellectual and emotional commitment to meeting the needs of his client, it is apparent that these needs must be met within the framework of structured approaches imposed by the agency and the profession, even over the worker’s own estimation of the needs of the client” (p. 402). The conflict experienced by social workers may be reduced for those with greater training and professional orientation than those studied by Billingsley and Scott. Meyer (1966) suggested that professional identification can reduce the effects of bureaucracy on a social worker. He has also suggested that although professional autonomy is circumscribed within the bureaucratic organization wherein most social workers work, a sense of autonomy is achieved through training, supervision, and professionally consonant definition of organizational goals (Meyer, 1959). Within the bureaucratic structure of a hospital, however, distinctions between full professions and less autonomous semiprofessions are becoming blurred. Physicians today are increasingly held accountable for such things as community to be served, services to be provided, and quality of service. Although the impact of Public Law 92-603—the Professional Standards Review Organization (PSRO) amendments to the Social Security Act (1972)—was diluted by strenuous efforts of doctors to control and dominate the PSROs, an element of public control and scrutiny, previously unthinkable, came to intrude upon physician autonomy.

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Autonomy, as a primary feature of the establishment of a profession, is problematic for hospital social workers whose employers or fellow professionals determine and limit the services that social work provides. Nowhere have such constraints on autonomy been more greatly felt than in discharge planning, where traditional dependence on others for referrals made hospital social work specially vulnerable to the label of medical “handmaiden” (Pfouts & McDaniel, 1977). In hospitals, as elsewhere, social workers’ claims to autonomy were weakened by the lack of development of a fund of knowledge through research. The absence of strong accountability systems and controls within the profession also weakened efforts toward its autonomy (Goode, 1969). In the midst of social work’s recent struggle to develop accountability systems and to establish self-definition of appropriate roles, public controls have entered the health field. Vastly escalated costs of medical care and of public programs led to development of stringent Utilization Review and PSRO regulations. Bureaucratic controls are both the scourge and incentive for greater accountability of discharge programs. Social workers have seen in PSRO an opportunity for the profession to be included in quality objectives and to pursue professional accountability (Rehr, 1975). Constraints on professional roles are great as government steps in with a program of quality control, heavily geared to cost containment and bed utilization, and lacking provisions to ensure adequate care. Ever-increasing constraints and a lack of appropriate facilities and resources for aftercare continue to make discharge planning less attractive a role to hospital social workers than that of improving patient 279

interaction with the hospital milieu during the in-hospital phase of care. Yet several parallel events—government intervention and PSRO—reduced resistance to identification of discharge planning as a professional role.

What is Discharge Planning and Who is a Discharge Planner? In 1974 the American Hospital Association stated in its manual on the subject that discharge planning, as primarily an administrative responsibility, might be undertaken by any one of several professions, including social work. The possibility of losing responsibility for discharge plans presented a dilemma for the profession. Although social workers had sometimes complained about this task, many had recognized the complexity of discharge services and the degree of skill needed to accomplish plans in the patient’s interest. Despite the complexity of the task and despite social work’s long commitment to its assumption, discharge planning was not explicitly defined until its recent emergence as a crucial factor in hospitals’ compliance with regulations and financial survival. Discharge planning must be done in order to enable the central purpose of the hospital to continue. From the viewpoint of social work, discharge planning is the professional service that helps patients to cope with their illness and its effects and to move through the hospital system and experience to a return to the community with all necessary supports (Rossen, 1977). This service encompasses 280

assessment of individual needs, formulation of an adequate and acceptable plan, and implementation of the plan that ensures the safety, well-being, and continuing care of the patient. For many years social workers provided this service without regarding it as of special merit, and hospitals, glad to relinquish such a role to social work, gave little thought to discharge planning as the task of the total institution. The now mandated role of discharge planning coordinator takes on new power within the hospital system as cost reimbursement is dependent on utilization compliance. Although emphasis on bed utilization and discharge planning has in part resulted in recognition of social work’s contribution to the continuing functioning of hospitals, in some instances hospital administrators yield values such as continuity of patient care to those of organizational solvency. The dilemma of social work’s historical rejection of discharge planning as a primary role was resolved by the recognition that if social workers did not grasp discharge planning as their appropriate professional role, others were ready and willing. As it became evident that an effective discharge program was vital to financial survival of hospitals, there was competition for the role. Nursing and new occupational groups developed self-definitions encompassing discharge planning and other roles claimed by social work (Gonnerman, 1968; Mullaney, Fox, & Liston, 1974). Without a major role in the discharge function social work might find itself without a firm basis from which to ensure services to 281

patients based on social work values, knowledge, and skills and from which to combat what has been termed “the aspect of shuttle service shifting individuals in a Kafka kind of way from facility to facility” (Phillips, 1972). Social workers have been impelled to redefine discharge planning as a professional role and to create new programs to address professional role and value conflicts. Once the “stepchild” function of hospital social workers, discharge planning has moved to primacy not only because of the number of patients served in this capacity but also by virtue of the profession’s changing self-image. Whereas discharge planning was frequently defined as a nonprofessional task and assigned to non-MSW staff, it is now being redefined, invested with dignity and importance, and thereby becoming an appropriate role for professional social workers. Nonprofessional tasks within the discharge planning function are delegated to lesser trained personnel, with MSW workers retaining primary responsibility for evaluating and formulating a satisfactory aftercare plan with the patient.

Role and Value Conflicts The many constraints upon hospital social workers in fulfilling the discharge planning role raise conflicts in both roles and values. Bureaucratic rules, together with lack of adequate resources, impinge on professional freedom to apply knowledge and skills according to judgment and convictions. Toren (1969) perceived the main threat to professional autonomy as interference of the organization with application

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of knowledge or with the service orientation—“with the professional commitment to place the client’s interest above all others” (p. 184). The urgent need of hospitals to comply with regulatory agencies and to meet constraints in order to obtain reimbursement makes pressure for early discharge high. This furthers the notion of discharge planning as a role in service of the institution rather than of the individual client. In order to make the discharge role acceptable to professional values of client self-determination and rights to quality health care, the social worker must redefine the “administrative” role of discharge planner so as to be in the interest of the client and not to serve the institution at the expense of the client’s well-being. Levy (1975) discussed the difficulties of serving two masters with conflicting interests—a frequent situation for the worker providing discharge services. In the current fiscal crisis of hospitals there is support for the assertion that “employing agencies sometimes devote more energy to and hence apply more pressure on social workers in the cause of their own survival than in the service of their clienteles” (p. 166). Certainly social workers, when constrained to assist patients to select one of several equally bad discharge plans because they must leave the hospital, experience what Levy (1975) suggested: there are times when the agency’s action is not inconsistent with its own purposes, but the social worker perceives it as a violation of the professional ethics to which he feels committed. This manifestation could be an occasional or a 283

recurring one. Either way, the social worker feels pressed to make his ethical choice or to survive with his internal dissonance. Whether or not he acts in response to what he regards as his ethical responsibility to the agency and to those who are affected by its actions, he is apt to feel conflict. The more a “captive” of his agency he feels, the more conflict he feels and thus the less ethical, (p. 174) The current employment situation makes many social workers more “captive” than ever before. At times the need of the hospital to discharge the patient and the need of the patient for care that does not exist produce irreconcilable interests and a basis for continuing role conflict. The role of discharge planner continues to present a dilemma. When the interest of the institution and that of the client are in conflict, the social worker has a crisis of ethics. Levy (1975) suggests that in such a critical conflict social workers, mindful of working for, not against, the agency, advise clients of the limits of social work influence and at the same time continue to gather assessments of clients’ needs and channel them to administration in the hope of effecting change. Thus, it is not sufficient that a worker assist a particular patient, delaying discharge from the hospital until appropriate and necessary services can be obtained. Social action to document, publicize, and seek to rectify the inappropriateness of a regulation or the scarcity of essential resources is a parallel and necessary social work responsibility both within the agency and wider community.

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Note Reprinted from Social Work in Health Care, Volume 4(1), Fall 1978.

References American Hospital Association. Discharge planning for hospitals. Chicago: Author, 1974. Bartlett, H. M. Some aspects of Casework in a medical setting. Chicago: George Banta, 1940. Bartlett, H. M. Fifty years of social work in the medical setting. New York: National Association of Social Workers, 1957. Bartlett, H. M., Frontiers of medical social work. Social Work, April 1962, 7(2), 75-83. Bartlett, H. M. The widening scope of hospital social work. Social Casework, January 1963,44 (1), 3-10. Berkman, B. G., & Rehr, H. Unanticipated consequences of the case-finding system in hospital social service. Social Work, April 1970, 75(2), 63-70. Berkman, B. G., & Rehr, H. The sick-role cycle and the timing of social work intervention. Social Service Review, December 1972, 46(4), 578.

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Billingsley, A. Bureaucratic and professional orientation patterns in social casework. Social Service Review, December 1964, 38(4), 402-403. Butrym, Z. Social work in medical care. London: Routledge & Kegan Paul, 1967. Cannon, I. M. Social work in hospitals. New York: Russell Sage Foundation, 1913. Carr-Saunders, A. M. Metropolitan conditions and traditional professional relationships. In R. M. Fisher (Ed.), The metropolis in modem life. New York: Doubleday, 1955. Carter, D. T., & Jinks, J. A. The next step in medical social work. Social Work Today, January 1972, 2(19), 4-8. Clark, E. Improving post-hospital care for chronically ill elderly patients. Social Work, January 1969, 14(1). Cowin, R. Some new dimensions of social work practice in a health setting. American Journal of Public Health, October 1970, 60, 860-869. Etzioni, A. (Ed.) The semi-professions and their organization. New York: Free Press, 1969. Flexner, A. Is social work a profession? Proceedings of the National Conference of Charities and Corrections, Chicago, 1915.

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Gonnerman, A. M. Introduction of planned discharge coordinators in hospitals. Hospital Forum, January 1968, 10, 4-25. Goode, W. J. The theoretical limits of professionalization. In A. Etzioni (Ed.), The semi-professions and their organization. New York: Free Press, 1969. Greenwood, E. Attributes of a profession. Social Work, July 1957,12(3), 45-55. Heyman, M. Effective utilization of social workers in a hospital setting. Chicago: American Hospital Association, 1962. Hirsch, S., & Lurie, A. Social work dimensions in shaping medical care philosophy and practice. Social Work, April 1969, 14(2), 75-79. The humanization of health care: A statement of scope and credo of Social Work in Health Care. Social Work in Health Care, Fall 1975, /(1), 5-6. Levy, C. Social work ethics. New York: Human Sciences Press, 1975. Meyer, H. J. Professionalization and social work. In A. J. Kahn (Ed.), Issues in American social work. New York: Columbia University Press, 1959. Meyer, H. J. The effect of social work professionalization on manpower. In E. E. Schwartz (Ed.), Manpower in social

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welfare: Research perspectives. New Association of Social Workers, 1966.

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Mullaney, J. W., Fox, R. A., & Liston, M. F. Clinical nurse specialist and social worker-Clarifying the roles. Nursing Outlook, November 1974, 22(11), 712-718. Olsen, K. M., & Olsen, Μ. E. Role expectations and perceptions for social workers in medical settings. Social Work, July 1967, 12(3), 70-78. Pfouts, J. H., & McDaniel, B. Medical handmaidens or professional colleagues: A survey of social work practice in the pediatrics departments of twenty-eight teaching hospitals. Social Work in Health Care, Spring 1977, 2(3), 275-283. Phillips, B. Hospital discharge by plan or by chance? Hospital Progress, February 1972, 53(22), 23-26. Rehr, H. Quality and quantity assurance: Issues for social services in health. Proceedings of Quality assurance in social services in health programs for mothers and children. Pittsburgh, March 31-April 4, 1975. Rossen, S. Discharge planning—social workers play an important role. Social Work Administration, September-October 1977, 3(5), 4-5. Scott, R. W. Professional employees in a bureaucratic structure: Social Work. In A. Etzioni (Ed.), The semi-professions and their organization. New York: Free Press, 1969.

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Stein, F. Summary of the institute. Proceedings of Quality assurance in social services in health programs for mothers and children. Pittsburgh, March 31-April 4, 1975. Teague, D. Social service enterprises: A new health care model. Social Work, July 1971, 16(3), 68-69. Thomas, L. On the science and technology of medicine. Daedalus, 1976, 6, 44. Toren, N. Semi-professionalism and social work—A theoretical perspective. In A. Etzioni (Ed.), The semi-professions and their organization. New York: Free Press, 1969. Ullmann, A., & Kassebaum, G. Referral and services in a medical social work department. Social Service Review, September 1961, 35(3), 263-264. Weiner, H. J. The hospital, the ward and the patient as clients: Use of the group method. Social Work, October 1959, 4(4), 57-64.

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Commentary Social workers face many difficult ethical issues and dilemmas that emerge as medicine’s breathtaking advances create new and unanticipated complex choices for patient, family, and professionals (Abramson, 1981). Patients and families turn to social workers for assistance as they face awesome decisions about experimental chemotherapy, intrauterine surgery, prenatal diagnosis, hereditary disease, life-support systems for the comatose, lumpectomy and mastectomy, organ transplantation, requests to donate organs, and many other dilemmas, the full consequences of which are often unpredictable. Weick (1984) has pointed out that changing societal values about the concept of responsibility for one’s health can have dramatic effects on patients and their health care. She challenges social workers to reevaluate assumptions of causality and to reshape practice. Our professional values and ethics provide a beginning point from which to develop principles to guide social work activities related to current medical practice.

Direct Services to Individuals and Families Social work practice focuses on the psychosocial etiology and consequences of illness and disability. Because the majority of health care social workers are employed in acute and long-term care settings, the articles cited reflect functions carried out at the tertiary level rather than on a primary or

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secondary level of treatment. In providing direct services to patients and families, social workers seek to strengthen their coping abilities and social functioning as these are affected by troubling illness and taxing situations. They aim to reinforce patients’ and families’ abilities to deal with illness, to make optimum use of medical care, to maintain or resume their best possible level of biopsychosocial functioning, and to adapt to drastically changed circumstances, new statuses, and new roles. Any of these adaptations provide opportunities to help clients develop better mastery of the intrapsychic, interpersonal, and environmental consequences of illness and medical care. Recognizing the vital role that families and other social networks play in the continuing care and support of the client, social workers promote the linkages that help maintain these supports through crisis episodes and longer term chronic illness (Bergman, 1979).

References Abramson, Marcia. “Ethical Dilemmas for Social Workers in Discharge Planning,” Social Work in Health Care 6(4), Summer 1981, pp. 33-42. Bergman, Anne S.; Lewiston, Norman J., and West, Aleda M. “Social Work Practice and Chronic Pediatric Illness,” Social Work in Health Care 4(3), Spring 1979, pp. 265-274. Caroff, Phyllis, and Mailick, Mildred D. “The Patient Has a Family: Reaffirming Social Work’s Domain,” Social Work in Health Care 10(4), Summer 1985, pp. 17-34.

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Weick, Ann. The Concept of Responsibility in a Health Model of Practice,” Social Work in Health Care 10(2), Winter 1984, pp. 13-25.

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Additional Readings Knowledge and Value Base Abramson, Marcia. “A Model for Organizing an Ethical Analysis of the Discharge Planning Process,” Social Work in Health Care 9(1), Fall 1983, pp. 45-52. Aronowitz, Eugene, and Bromberg, Eleanor M. (Eds.). Mental Health and Long-Term Physical Illness. New York: Prodist, 1984. Babcock, Charlotte G. “Inner Stress in Illness and Disability,” in Howard Parad and Roger R. Miller (Eds.), Ego-Oriented Casework. New York: Family Service Association of America, 1963, pp. 45-54. Berkman, Barbara. “Knowledge Base and Program Needs for Effective Social Work Practice in Health: A Review of the Literature,” paper commissioned by The Society for Hospital Social Work Directors of the American Hospital Association, 1978. Blacher, Richard S. “Reaction to Chronic Illness,” in Bernard Schoenberg; Arthur C. Carr; David Peretz, and Austin H. Kutscher (Eds.), Loss and Grief: Psychological Management in Medical Practice. New York: Columbia University Press, 1970, pp. 189-198.

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Butler, Robert, and Lewis, Myrna. Aging and Mental Health: Positive Psychosocial Approaches. St. Louis, MO: Mosby, 1977. “Care of the Chronically Mentally 111.” Practice Digest 6(2) Autumn 1983, pp. 3-18. Callahan, Daniel. “Health and Society: Some Ethical Imperatives,” in John H. Knowles (Ed.), Doing Better and Feeling Worse. New York: W.W. Norton, 1977, pp. 23-33. Carlton, Thomas Owen; Falck, Hans S., and Berkman, Barbara. “The Use of Theoretical Constructs and Research Data to Establish a Base for Clinical Social Work in Health Settings,” Social Work in Health Care 10(2), Winter 1984, pp. 27-40. Dana, Bess. “Health, Social Work and Social Justice,” in Bernard Ross and Charles Shireman (Eds.), Social Work Practice and Social Justice: Selected Papers. Washington, D.C.: National Association of Social Workers, 1973, pp. 111-128. Dean, Ruth G. “Understanding Health Beliefs and Behavior: Some Theoretical Principles of Practice,” in Elizabeth L. Watkins and Audreye E. Johnson (Eds.), Removing Cultural and Ethnic Barriers to Health Care. Chapel Hill: University of North Carolina, 1979, pp. 49-67. Dubos, Rene. Mirage of Health. Garden City, N.Y.: Anchor Books, 1978.

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Ehrenreich, Barbara, and English, Deidre. Complaints and Disorders: The Sexual Politics of Sickness. Old Westbury, N.Y.: The Feminist Press, 1973. Engel, George L. “The Need for a New Medical Model: A Challenge for Biomedicine,” in Arthur Caplan; H. Tristam Engelhardt and James J. McCartney (Eds.), Concepts of Health and Disease: Interdisciplinary Perspectives. Reading, Mass: Addison-Wesley, 1981, pp. 589-607. Fox, Renee. “The Medicalization and Demedicalization of American Society,” in John H. Knowles (Ed.), Doing Better and Feeling Worse. New York: W.W. Norton, 1977, pp. 9-22. Gerson, Elihu M., and Strauss, Anselm. “Time for Living: Problems in Chronic Illness Care,” Social Policy 6:3, November-December 1975, pp. 12-18. Harwood, Alan. Ethnicity and Medical Care. Cambridge, Mass.: Harvard University Press, 1981. Hidalgo, Hilda; Peterson, Travis L., and Woodman, Natalie J. (Eds.), Lesbian and Gay Issues: A Resource Manual for Social Workers. Silver Spring, Md.: National Association of Social Workers, 1985. Holmes, Karen A. “Euthanasia: A Social Work Perspective,” Health and Social Work 5(4), November 1980, pp. 5-12. Kassebaum, Gene G., and Bauman, Barbara O. “Dimensions of the Sick Role in Chronic Illness,” in E. Gartly Jaco (Ed.), Patients,

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Physicians and Illness, 2nd ed. New York: The Free Press, 1972, pp. 131-144. King, Lester S. “What Is Disease? in Arthur Caplan; H. Tristam Engelhardt, and James J. McCartney (Eds.), Concepts of Health and Disease: Interdisciplinary Perspectives. Reading, Mass.: Addison-Wesley, 1981, pp. 107-118. Levy, Charles S. “The Value Base of Social Work,” Journal of Education for Social Work 9(1), 1973, pp. 34-42. Macklin, Ruth. “Ethical Issues in Treatment of Patients With End-Stage Renal Disease,” Social Work in Health Care 9(4), Summer 1984, pp. 9-20. Moody, Philip M., and Gray, Robert M. “Social Class, Social Integration and the Use of Preventive Services,” in E. Gartly Jaco (Ed.), Patients, Physicians and Illness, 2nd ed. New York: The Free Press, 1972, pp. 240-251. Moos, Rudolf H., and Tsu, Vivien Davis. “The Crises of Physical Illness: An Overview,” in Rudolf H. Moos and Vivien Davis Tsu (Eds.), Coping With Physical Illness. New York: Plenum, 1977, pp. 3-21. Parsons, Talcott. “Definitions of Health and Illness in the Light of American Values,” in E. Gartly Jaco (Ed.), Patients, Physicians and Illness, 2nd ed. New York: The Free Press, 1972, pp. 97-117. Reamer, Frederic G. Ethical Dilemmas in Social Service. New York: Columbia University Press, 1982.

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Rehr, Helen, Ethical Dilemmas in Health Care: The Professional Search for Solutions. New York: Prodist, 1978. Richardson, W. “Poverty, Illness and the Use of Health Services in the United States,” in E. Gartly Jaco (Ed.), Patients, Physicians and Illness, 2nd ed. New York: The Free Press, 1972, pp. 230-239. Ross, Judith. “Ethical Conflicts in Medical Social Work: Pediatric Cancer Care as a Prototype,” Health and Social Work 7(2), May 1982, pp. 95-102. Sammons, Catherine. “Ethical Issues in Genetic Intervention,” Social Work 23(3), May 1978, pp. 237-242. Sedgwick, Peter. “Illness-Mental and Otherwise,” in Arthur Caplan; H. Tristam Engelhardt, and James J. McCartney (Eds.), Concepts of Health and Disease: Interdisciplinary Perspectives. Reading, Mass.: Addison-Wesley, 1981, pp. 119-129. Sheridan, Mary S., and Kline, Karen. “Psychosomatic Illness in Children,” Social Casework 54(4), April 1978, pp. 227-232. Solomon, Barbara Bryant, “Value Issues in Working with Minority Clients,” in Aaron Rosenblatt and Diane Waldfogel (Eds.), Handbook of Clinical Social Work. San Francisco: Jossey-Bass, 1983, pp. 866-887. Sontag, Susan. Illness and Metaphor. New York: Farrar, Straus and Giroux, 1977.

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Direct Services to Individuals and Families Bailis, Susan S. “A Case for Generic Social Work in Health Settings,” Social Work 30(3), May-June 1985, pp. 209-212. Bergman, Anne Sturmthal; Contro, Nancy, and Zivetz, Nancie. “Clinical Social Work in a Medical Setting,” Social Work in Health Care 9(3), Spring 1984, pp. 1-12. Blazyk, Stan, and Canavan, Margaret M. “Therapeutic Aspects of Discharge Planning,” Social Work 30(6), November-December 1985, pp. 489-496. ______ “Managing the Discharge Crisis Following Catastrophic Illness or Injury,” Social Work in Health Care 11(4), Summer 1986, pp. 19-32. Blumenfield, Susan, and Lowe, Jane Isaacs. “A Template for Analyzing Ethical Dilemmas in Discharge Planning,” Health and Social Work 12(1), Winter 1987, pp. 47-56. Carlton, Thomas Owen. Clinical Social Work in Health Settings. New York: Springer, 1974. Clark, Eleanor. “Improving Post-Hospital Care for Chronically 111 Elderly Patients,” Social Work 14(1), January 1969, pp. 62-67. Cohen, Sarah N., and Egen, Bernadette. “The Social Work Home Visit in a Health Care Setting,” Social Work in Health Care 6(4), Summer 1981, pp. 55-67.

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Germain, Carel B. Social Work Practice in Health Care. New York: The Free Press, 1984. Hancock, Emily. “Crisis Intervention in a Newborn Nursery,” Social Work in Health Care 1(4), Summer 1976, pp. 421-432. Noble, Dorinda, and Hamilton, Adrianne K. “Coping and Complying: A Challenge in Health Care,” Social Work 28(6), November-December 1983, pp. 462-466. Sands, Roberta. “Crisis Intervention and Social Work Practice in Hospitals,” Health and Social Work 5(4), Fall 1983, pp. 253-261. Schreiber, Hanita. “Discharge-Planning: Key to the Future of Hospital Social Work,” Health and Social Work 6(2), May 1981, pp. 48-53. Schwartz-Borden, Gwen. “Grief Work: Prevention and Intervention,” Social Casework 67(8), October 1986, pp. 499-505. Willard, Susan G., and Winstead, Daniel K. “Treating Bulimia: A Combined Therapy Approach,” Clinical Social Work Journal 12(3), Fall 1984, pp. 225-232. Yudkowitz, Elaine. “Bulimia: Growing Awareness of an Eating Disorder,” Social Work 28(6), November-Dccember 1983, pp. 472-477.

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Part 3 Research and Evaluation

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Introduction In general, social work practitioners feel that their work is separate from research, for which they see themselves as having neither time nor skills. As they critique their practice, workers do identify how they helped or failed to help clients, but they do not think of this kind of practice assessment as research. The three research articles included in this chapter study direct social work practice with clients in health care settings. The practitioner research reported in Allison, Gripton, and Rodway’s article on social work with terminal cancer patients illustrates the potential for practitioners’ use of readily available technology (in this case, single-system design) to explore and demonstrate the effectiveness of their services to clients. Dhooper’s research is on how families cope with their members’ heart attacks. Dhooper explores the critical impact of the illness on family functioning and identifies appropriate interventions for social workers. The great majority of the families Dhooper studied did not receive social work services; this highlights the need for studies that examine the differences in the adjustment of families who do and do not receive social work help. Comparative studies of this kind require the involvement of social work practitioners in their design and implementation.

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Peterson and Anderson provide a comprehensive review of research studies undertaken in health care social work and present a cogent argument for greater use of single-system designs. They demonstrate the feasibility of practitioner research studies that use these designs. Their clarity can help practitioners who have been reluctant to undertake research consider new ways of systematically evaluating their practice.

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Social Work Services as a Component of Palliative Care with Terminal Cancer Patients Helen Allison, RN, MSW James Gripton, DSW Margaret Rodway, PhD At the time of writing Helen Allison was Social Worker, Psycho-Geriatric Day Hospital, Dr. Vernon Fanning Centre, Calgary, Alberta, Canada T2E 6V7. James Gripton was Professor, Faculty of Social Welfare, University of Calgary, Calgary, Alberta, Canada T2N 1N4. Margaret Rodway was Associate Professor, Faculty of Social Welfare, University of Calgary, Calgary, Alberta, Canada T2N 1N4. SUMMARY. This paper describes a social work service to critically ill non-hospitalized cancer patients based upon Heimler’s theory and method of Human Social Functioning. Despite severe constraints arising from the physical deterioration and emotional distress of the patients and certain aspects of the treatment setting, efforts were made to validate the effectiveness of the service through pre- and post-intervention measures of patients’ moods and single system experiments. The findings indicate that the Heimler method was effective in helping patients overcome their sense

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of helplessness and distressing emotional reactions to terminal illness. A quality assurance program and a multidisciplinary health care team are proposed as the means of establishing palliative care for terminally ill patients that incorporates social work services. Terminally ill patients are living persons in the process of dying who may require palliative care to sustain both their physical and emotional integrity. The term palliative care implies alleviation of distressing or painful symptoms associated with physical deterioration and infirmity. Palliative care combines empathic care and professional understanding directed towards the physical, emotional, and spiritual needs of both patient and family (Hinton, 1967; Saunders, 1978; Simpson, 1979). The focus of medical intervention is to keep the patient alert, comfortable and pain free in a supportive caring environment. The principles and practice of palliative care extend beyond the familiar patient/doctor/nurse relationship and the more or less closed system of the hospital. Palliative care services are less rigidly defined, and the boundaries of care are more diffuse. In general, it is an open health care system which promotes the idea of home care and integrates community resources as a vital extension to hospital services. Pain control is an essential component in palliative care, hence the management of intractable pain associated with some forms of advanced cancer is vital. The enormous contributions of Saunders (1978) and others in the management of severe pain have made it possible to address the psycho-social aspects of terminal illness as these affect the patient and his or her family. Without these medical advances, the alleviation of emotional distress in dying 304

patients and the promotion of their independence would be impossible. Thus, palliative care is an idea whose time has come. While the cost implications of palliative care have yet to be determined, it unquestionably involves substantial reorganization of health care services and redefinition of professional roles. It is important, therefore, that the effectiveness of palliative care be demonstrated. Consequently, despite severe constraints, an attempt was made to provide empirical validation of the social work services described below through pre- and post-intervention measures and single system experiments.

Psychosocial Aspects of Cancer Cancer patients usually experience heightened states of anxiety, fear and depression induced by physical pain and psycho-social distress. A number of factors contribute to these emotions: imminent separation from all that is meaningful in life; treatment regimes of radiotherapy and chemotherapy; experience of physical deterioration; and lack of optimistic communication between patients and staff in an environment of technical competence. These dysfunctional emotions reduce the ability of patients to cope with their difficult life situations. Unwittingly, society assigns those suffering from cancer to a marginal, deviant or minority status. Persons with cancer remind each of us our physical frailty, and the disease is usually presented morbidly by the media. The abhorrence of cancer leads to stigmatizing and exclusion of those who suffer

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from it. Enforced membership in this minority reinforces patients’ negative feelings, increases their sense of helplessness and dependency, and reduces their coping capacity. When the disease progresses to the terminal stage, patients may find themselves in a situation over which they exercise little control, and their fear and sense of dependency may be greatly magnified.

Social Work Services in Palliative Care Professional caregivers may unwittingly deny patients and their families the right to participate in decisions concerning their care. Simpson (1979) has commented that many patients “… are treated as the passive and incompetent recipients of other people’s intermittent attention.” Thus, the terminally ill and their families often lack services designed to enhance coping mechanisms and to maintain their quality of life. Such services emphasize social acceptance and independence for the patient. The provision of palliative care to the terminally ill is a natural extension of social work, which has traditionally provided supportive services in times of crisis. The multi-faceted aspects of palliative care involves the social worker in the following activities: identification of problem areas in the patient’s present life situation; sharing relevant information concerning the patient with his family within the limits of confidentiality; liaison with community resources to provide necessary supplies and equipment for home care; assisting the patient in purposeful planning for living; helping the family deal with disrupted relationships;

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and helping the patient with dysfunctional emotional reactions to illness. Kastenbaum and Aisenberg (1972), Glaser and Strauss (1965) and Foster (1965) have commented on the importance of reducing terminal patients’ emotional stress and helping them to more constructive perceptions of their situation. The relationship between the patient and social worker is crucial in providing these services. Palliative care implies creating an environment where physical and emotional distress is reduced by caregivers who have both the time and the ability to discuss and be responsive to the many sided aspects of life’s terminality. Pilsecker (1975) has suggested that “… sensitivity and awareness of the dying person; allowing but not contributing to his denial of reality; inviting and acknowledging the expression of deep feelings are basic aspects of the relationship.” Feifel (1977) and Saunders (1976) propose that the dying person be “welcomed as a living person with special needs.” Above all, the working relationship must be free of rigid professional role prescriptions that may create an emotional gulf between the living and dying.

Method The clients in this project were referred for social work services by medical specialists of the Southern Alberta Cancer Clinic and the nurses of the Victorian Order of Nurses, a community nursing service. The referring criterion was the degree of dysfunctional reactive emotions manifested by patients. Sixteen patients were referred. Three died before intervention could begin, and five declined to participate in

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the study, although one of the latter continued to receive social work services. Eleven clients were referred by physicians and five by nurses. Two instruments were administered to all participating subjects at the pre-intervention stage, the Heimler Scale of Human Social Functioning (1967) and the Profile of Moods States (McNair, Lorr and Doppleman, 1971). Heimler (1975) has described his Scale of Social Functioning (H.S.S.F.) as: a social work instrument which evaluates and measures the individual’s perception of his satisfaction and frustration as they affect him in the present. It was developed initially to test the possibility of devising objective criteria for the evaluation of social work practice. It is comprised of 55 questions which are divided into three parts: a Satisfaction or Positive Index, a Frustration or Negative Index, and a Synthesis Scale. The Positive Index, which was derived from Heimler’s work with the long-term unemployed, consists of five main life areas. These are: work, interests, family relationships (primary and secondary), friendship and social contact, and intrapersonal. The Negative Index, largely developed through Heimler’s clinical experience, consists of the following five areas: energy, personal influence, moods, health, and habits. The Synthesis Scale provides a capsule view of a person’s feelings and thoughts of his past, present and future life, and can be used to check on the present life situation as evidenced in the Positive Index. The Profile of Mood states (POMS) is: “A factor analytically derived inventory … which measures six identifiable moods 308

or affective states: Tension-Anxiety; Depression-Dejection; Anger-Hostility; Vigor-Activity; Fatigue-Inertia; and Confusion-Bewilderment” (p. 5). The latter was administered by Clinic staff, and again at post-intervention. The Heimler Scale, administered independently by a practitioner in Human Social Functioning, was used by the senior author as an assessment tool to guide her interventions, while the POMS was used to supplement other measures of dysfunctional behaviors or emotional states taken during the baseline and intervention phases. The reliability and validity of these two scales have been reported in a number of studies (Griswold and Rodway, 1977; McNair, 1971). Hcimler’s Human Social Functioning (1975) was chosen as the model of social work intervention because its unique features appeared particularly well suited for this study. The principles and practice of palliative care as outlined by Saunders (1976) are similar to Heimler’s. Both approaches emphasize helping people achieve a functional balance between frustration or distress and satisfaction, so that life is more meaningful. Additionally both are concerned with empathic and non-judgmental care for the individual in his present situation. The psychodynamic aspects of Heimler’s method integrate the concepts proposed by Butler (1979) and Pilsecker (1975), which includes considering how the patient’s past life experience influences periods of distress. Heimier’s method also involves respect for the individual’s defenses, which has been stressed by Mount (1974) and Saunders (1978). The salient feature of the Human Social Functioning approach is that it provides a framework within which the professional and client can use each other in a therapeutic partnership 309

which is nonjudgmental and not obscured by the customary social distance of a professional-client relationship. Five phases of the method are evident in the initial and continuing interviews. These are: the individual’s own statement of his or her present life situation; the clinician’s summarization of what has been stated by the client; a subsequent client summarization of his or her own statement; the client’s initial steps toward self-observation; and, finally, the formulation of the client’s plan to change the frustrating areas in his or her life. Through this five-phased process, the clinician helps the client crystallize his or her situation. When this point is reached, the need for action arises and plans for effecting change and tapping unused resources can then be jointly considered. Most importantly, the use of Human Social Functioning with these clients was expected to guide them toward both meaning and purpose to their lives. A brief description of a case that illustrates this method of intervention follows: Client 1, a 74-year-old married woman of middle class background, was referred to the therapist by the Victorian Order of Nurses (V.O.N.). She was not bedridden and was alert and lucid. Although attentive to her care, her family and friends were unable to comfort her. Her continuous crying episodes proved disruptive to both herself and her caregivers. Initial interviews focused on those aspects of her life she felt were frustrating and debilitating. The insight gained from her life review was facilitated by the H.S.S.F. She summed up her situation thus: “I kept a good home and always served my husband’s meals on time. But now my family make all the decisions, and they never

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ask my advice.” The implication of this statement was: “I feel useless, and no longer contribute to the running of my home.” Moreover, her family’s desire to manage her total care was a source of extreme frustration for this client. Having identified her loss of independence, the therapist encouraged the client to outline some goals and objectives. This was a prerequisite to taking some control of her life and regaining her sense of independence. This led, in turn, to a course of action which included: an interest in her family’s activities; a demand to be consulted regarding her personal care; choice of diet; and the time and duration of therapist’s visits. Supported by her family, this client’s goals and objectives were achieved. Crying was no longer problematic, and the client remained at home until her demise. Both the therapist and the V.O.N. were present and in attendance at her death. It should be noted that the five phases of the Human Social Functioning method were utilized throughout all interviews with the client.

Evaluating Social Work Services in Palliative Care by Single System Experiments One obvious advantage of single system experiments over group experiments is that the number of available subjects is not an important issue. Secondly, neither the practice nor ethical difficulties of establishing a control or comparison group have to be faced. In the case of terminally ill patients, even a deferred treatment comparison group strategy would be unacceptable. The single system experiment can also be adapted to the unique person-problem-situation configuration of the individual client. There were, however, a number of serious obstacles encountered in applying a single system design. Postponing intervention in order to conduct adequate

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baseline observations was not possible. Hence, in some cases, a single measure taken at the time of the assessment or the first intervention interview had to suffice. Occasionally, this single measure was supplemented by client’s retrospective reports, or those of physicians, nurses or family members. Even this compromise of a single point or reconstructed baseline was often made difficult because the client was in a state of acute emotional distress at the time of referral for social work service. Furthermore, it was often not possible to obtain the cooperation of physicians and nurses in reporting observations on the psychological status of clients. Systematic efforts to enlist their participation were largely unsuccessful. Perhaps acknowledgement of a terminal condition may represent professional failure to physicians and nurses. Consequently, in some instances, engaging actively in a program of palliative care may represent repeated confirmation of failure to effect a cure or remission of the illness. Members of the health professions, by and large, are not yet well trained and socialized to perform an effective supportive role in relation to the terminally ill and their families (Millet, 1979). The patients in the study sample were referred to the social worker late in the course of their illness. Patients must be referred following diagnosis for social work intervention to be of optimal value. The delay was often due to postponement by some physicians of the extremely difficult task of telling patients and their families about the nature of the patient’s condition, the decision to discontinue active treatment, and the prognosis. Sometimes such information was conveyed to patients in ways that intensified rather than alleviated their 312

anxieties and fears. Physicians and nurses were also hesitant to involve the social worker at this stage, perhaps because of inaccurate or stereotyped perceptions of the social work role. Moreover, physicians were dealing with the fact that their patients were not responding to some of the most sophisticated treatment technology available to medical science. Because of these considerations, the proposition that social work intervention might effect some improvement in the psychosocial status of patients and their families was not readily granted. It must also be noted that these patients were receiving outpatient treatment, and pain management was essentially the responsibility of their family physicians. This circumstance accounted for poor pain management and fragmentation of health care. In this context physicians and nurses could not be counted on to cooperate in maintaining conditions that facilitated carrying out the single system experiments. Reliance for recording client feelings and behavior remained primarily with the clients themselves, through self-report scales. This was a formidable expectation, since clients were often overwhelmed with feelings of helplessness and hopelessness, fear, anxiety, and concern about bodily changes; or were combatting such physical symptoms as pain, sleeplessness, nausea, difficult breathing and fatigue. Finally, there were no adequate facilities for completing reports at the clinic. In some cases, however, keeping records was a constructive activity for the clients and family members. It gave them a feeling of hope and something concrete and positive to do about their condition. It was for clients a way of affirming and confirming that they could improve important aspects of 313

living even in the face of a deteriorating physical condition. From a research perspective, such reactive measurement procedures serve to invalidate an experiment. In this instance, the clinical benefits of these obtrusive measures were deemed to outweigh this methodological disadvantage. It was evident from this study that stronger single system designs would have required much earlier referral of clients to the social worker. This would, in turn, have required a greater understanding and commitment on the part of all health care givers to the philosophy and objectives of palliative care. The mechanism for realizing this condition is a multidisciplinary health care team for which the goals of patient care and the roles of team members are clearly defined.

The Results The results of the interventions with the eight participating patients are summarized below. In three cases, where a single subject experiment was conducted, the results are presented graphically. In these instances an AB design was the only feasible procedure, and in one case, only a single measure was taken prior to intervention (Bloom, 1975). Differences in pre- and post-intervention scores on the Profile of Mood States are described for each participating client, and for the group. The raw scores of the participants were transposed to standard scores computed for large samples of psychiatric out patients and for college students. The standard scores presented in Table 1 were based upon the former, although there would have been no difference in the interpretation if the norms for college students had been used instead. If the

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difference between a client’s pre- and post-test scores for a given mood was greater than one TABLE 1 Changes in Mood States of Eight Clients with Terminal Cancer

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standard deviation but less than 1.5 standard deviations, then the difference is described as “improvement” or “deterioration.” Any difference less than one standard deviation is considered “no change.” Any difference greater than 1.5 standard deviations is considered “marked improvement” or “marked deterioration.” The eight clients and their changes in mood states from pre-intervention to post-intervention are shown in Table 1. All eight clients showed improvement over their pre-intervention score in at least one mood. The client who did least well showed improvement in Fatigue-Inertia, marked deterioration in Anger-Hostility, and no change in any other mood score. He was the only client to show a change in Anger-Hostility. The client with the most positive changes in mood, showed marked improvement in all scores except Anger-Hostility. Intervention was most effective in reducing Tension-Anxiety. Improvement or marked improvement occurred for six clients. Improvement or marked improvement was observed in Depression-Dejection and Fatigue-Inertia for five clients in each dimension. Four clients showed marked improvement in Confusion-Bewilderment scores. Given their severe and deteriorating physical conditions, it is remarkable that only one client showed deterioration in Vigor-Activity mood scores. The one client who actually showed improvement in this mood, given the deterioration in his Anger-Hostility score, was probably expressing denial of his condition. It appears that the mood of Fatigue-Inertia, in contrast to Vigor-Activity, may be relatively independent of the individual’s physical condition. No explanation is offered for the relative stability of Anger-Hostility scores. 317

Pre- and post-intervention means for three of the six POMS scores show significant positive differences. These are for Tension-Anxiety, Depression-Dejection and Confusion-Bewilderment. These results are shown in Table 2.

Single System Experiments Client #1 was crying excessively at the time of referral, and this was seriously interfering with her coping ability. Reduction in crying became a goal of social work intervention. Her husband was asked to keep a daily record of the number of times that she cried during a baseline period of 14 days, and an intervention period of 36 days. The results are shown in Figure 1. The proportion of days during the baseline period when the frequency of crying was at the desired level (one or less times a day) was 14 percent. The proportion during the intervention period rose to 67 percent. This improvement was significant at the .001 level of confidence. Table 2 Profile of Mood State Scores for Eight Cancer Patients Before and After Social Work Intervention

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Client #6 was deeply depressed at the time of referral, and alleviation of depressed moods was an important goal of intervention. The client kept a daily log of the frequency of depressed moods. Baseline measures were kept for five days, and intervention period measures for 33 days. The results are shown in Figure 2. If one chooses as the desired level any daily frequency of the problem behavior less than the maximum observed frequency of 5

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Figure 1 Client 1-Recorded daily frequency of crying

Figure 2 Client 6-Recorded daily frequency of depressed mood

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as representing the desired level, then the improvement observed during the intervention period is significant at the .001 level of confidence. Visual inspection of the baseline data indicated that a downward trend in frequency of daily depressed moods was already operating at that phase. Unfortunately there were too few baseline measures to apply a celeration line test in order to determine whether changes that occurred during the intervention period were an extension of a trend already established during the baseline period (Gingerich and Feyerherm, 1979). By the time client #8 was referred for social work services, the senior author recognized the positive value of incorporating psychological measurements in the intervention, both in direct benefit to the client, and for guiding the counseling effort. Consequently, additional measurements were taken. Over a period of seven weeks, beginning with the initial interview, the POMS and three other scales were administered weekly. The latter, developed especially for clinical social work practice by Hudson (1978) and associates, were the Generalized Contentment Scale, a measure of depression, the Index of Self-Esteem, and the Index of Peer Relations. Scores for the Hudson scales range from zero to 100, with low scores representing the positive end of the scale. A score of 30 represents a clinical cutting point for each scale. Scores above 30 are characteristic of clinical populations. These three instruments were not administered at the end of Week 2. They were chosen not only because of their established reliability and validity and ease of administration, but because, at the time of referral, this client was reported to be depressed and feeling worthless and unhappy about how she was relating to others.

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The results are presented in Figures 3 and 4. Because intervention could not be deferred until multiple base line measures had been taken, determination of whether the change during the intervention period represented a statistically significant difference from the pre-intervention condition was not possible. A visual inspection of Figures 3 and 4 indicates that there was gradual improvement in POMS factor scores from Week 1 to Week 8. This was also true for the three Hudson scales. In the case of the Index of Peer Relations, scores were at the sub-clinical level at the outset, but had fallen still lower by Week 8. With the Generalized Contentment Scale and the Index of Self-Esteem, the initial scores were well above the clinical cutting point, but had fallen below 30 by Week 5. There was also consistency to the pattern of change across measures. All showed improvement from Week 1 to Week 3. All scales with the exception of Vigor-Activity then showed a sharp deterioration at Week 4, a return to about the Week 3 level at Week 5, a modest deterioration at Week 6, and further modest improvements at Weeks 7 and 8. These negative changes in index scores at weeks four and six are attributed to the fact that a male hormone was prescribed at these times and the client was distressed at the virilization effects that she believed the hormones might have and what she felt to be inadequate explanations for the treatment.

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Figure 3 Client 8-Profile of mood states over eight weeks (Standard scores-psychiatric outpatient norms)

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These data point up how the social worker’s efforts to evaluate the effectiveness of intervention are frustrated when referral is delayed until the patient is in an emotional crisis and the opportunity for collecting baseline data is lost.

Figure 4 Client 8-Scores on generalized contentment (depression), self-esteem and peer relations over eight weeks. The findings present in Figures 3 and 4 are consistent with the hypothesis that social work intervention was effective in countering the negative mood states of this client, enhancing her self-esteem, and helping her to perceive her relationships with peers more positively. These changes could also be attributed, however, to many other factors influencing the client during the intervention period. They could have been artifacts of referral at a time of acute emotional upset. As the crisis subsided, test scores would have improved. On the other hand, the improvement in the POMS scores for the group of clients shown in Table 2 lends plausibility to the attribution of change in Client #8 to social work intervention.

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Implications of the Study for Social Work in Palliative Care The Heimler Scale proved to be an efficient and non-demanding procedure for identifying those aspects of a client’s functioning that were the locus of greatest stress; and for directing the social worker’s efforts to help the client exert a greater measure of independence and control over his or her life. The Heimler method of intervention was also found to be applicable to the needs of terminal cancer patients across a variety of disease conditions and life situations. Once engaged in this therapeutic process, most clients in this study were able to mobilize diminishing energies and surmount considerable obstacles in order to sustain a positive sense of self to the end of their lives. This merits further testing of Heimler’s scale and treatment methods with terminal cancer patients. The adaptability and efficiency of single system designs in providing empirical evidence for the effectiveness of social work intervention were also demonstrated. The results of this study challenges the position that single system designs are not compatible with social work practice (Thomas, 1979). The frustrating aspects of the experience of conducting this study that have been described above led to several conclusions about the organization of palliative care and the roles of care givers. These proved to be consistent with the views that others have expressed about the hospice, palliative care, and social work with terminal patients.

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1. Palliative care requires more than a commitment to the concept on the part of health care professionals. Physicians, nurses, social workers and other health care personnel must also re-examine and re-define their care giver roles toward patients receiving palliative care. 2. The interdisciplinary team appears to be the most effective way to organize palliative care (Axelrod, 1978; Berns, 1978; Bernstein, 1980; Foster, 1979; Houghton and Martin, 1976). Hinton (1967) and Saunders (1978) have also emphasized that services to the terminally ill must be planned and delivered in concert by all those who can contribute to the different dimensions of supportive care. Without the integrating mechanism of an interdisciplinary team, palliative care is likely to be undermined by fragmentation and discontinuities of service. Furthermore, team members can lend each other support in dealing with the highly stressful situations that arise in working with the terminally ill and their families. 3. Palliative care and the role of the social worker are best introduced to a health care system in which a quality assurance program has been established. The quality assurance protocol provides a mechanism for assigning tasks and responsibilities, defining treatment goals, and specifying service standards (Coulton, 1979). A quality assurance program facilitates the pooling of diverse knowledge and skills and the fuller utilization of both health care and community resources by the terminally ill patients and their families (Ferguson et al., 1977). 326

Note Reprinted from Social Work in Health Care, Volume 8(4), Summer 1983.

References Axelrod, T. B. Innovative roles for social workers in home care programs. Health and Social Work, 1978, 3(3), 48-66. Berns, J. Team approach lo chronic pain. Health and Social Work, 1978, 3(2), 182-192. Bernstein, B. Legal needs of the ill: The social worker’s role on the interdisciplinary team. Health and Social Work, 1980, 5(3), 68-72. Bloom, M. The paradox of helping. New York: Wiley, 1975. Butler, R. L. The need for quality hospice care. Death Education, 1979, 3(3), 217. Coulton, C. J. Social work quality assurance programs. New York: National Association of Social Workers, 1979. Feifel, H. New meanings of death. New York: McGraw-Hill, 1977, 276. Ferguson, Κ., Bowden, M. L., Lachinet, D., Malcolm, N., and Morgan, G. Initiation of a quality assurance program for social work practice in a teaching hospital. Social Work in Health Care, 1976-1977, 2(2), 205-217. 327

Hudson, W. W. A measurement package for clinical workers. Unpublished manuscript. University of Hawaii School of Social Work, 1978. Foster, Z. How social work can influence hospital management of fatal illness. Social Work, 1965, 10(4), 30-42. Foster, Z. Standards for hospice care: Assumptions and principles. Health and Social Work, 1979, 4(1), 117-128. Gingerich, W. J., and Feyerherm, W. H. The celeration line technique for assessing client change. Journal of Social Service Research, 1979, 3(1), 99-113. Glaser, B. G., and Straus, A. L. Awareness of dying. Chicago: Aldine, 1965. Griswold, M. J. Validity and reliability of the scale of social functioning: Research conducted through the University of Washington, In L. Dick and G. A. DeCocq (Eds.). Proceedings of the First Conference on Human Social Functioning. Calgary: University of Calgary, 1977. Heimler, E. Mental illness and social work. Bungay, England: The Chauccr Press, 1967. Heimler, E. Survival in society. London: Weidenfeld and Nicolson, 1975. Hinton, J. Dying. Baltimore: Penguin, 1967.

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Houghton, L., and Martin, A. Home vs. hospital: A hospital-based home care program. Home and Health Care, 1976, /(4), 89-103. Kastenbaum, R., and Aisenberg, R. The psychology of death. New York: Springer, 1972. McNair, D. M., Lorr, M., and Doppleman. L. F. Profile of mood states manual. San Diego: Educational and Industrial Testing Service, 1971. Milieu, N. Hospice: Challenging society’s approach to death. Health and Social Work, 1979, 4(1), 130-150. Mount, B. M. Death and dying attitudes in a teaching hospital. Urology, 1974, 4(6). Pilsecker, C. Help for the dying. Social Work, 1975, 20(3), 190-194. Rodway, M. R. Validity and reliability of the scale of social functioning: Research conducted in Canada, the United Kingdom and the United States. In L. Dick and G. A. DeCocq (Eds.), Proceedings of the First Conference on Human Social Functioning. Calgary: The University of Calgary, 1977. Saunders, C. M. Hospice movement. Nursing Times, 1976, 72(26), 3-24. Saunders, C. M. (Ed.). The management of terminal illness. London: Arnold, 1978.

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Shapiro, M. Getting doctored: Critical reflections on becoming a physician. Toronto, Ontario: Between the Lines, 1979. Simpson, M. A. The facts of death. New Jersey: Prentice Hall, 1979. Thomas, E. L Research and service in single-case experimentation: Conflicts and causes. Social Work Research and Abstracts, 1978, 14(4), 21-31. Wilson, P. A. The emerging hospice movement: A challenge to education for social work practice in health care. Paper presented at the Annual Program Meeting of the Council on Social Work Education. Louisville, Kentucky, March 1981.

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Family Coping with Crisis of Heart Attack

the

Surjit Singh Dhooper, MSW, PhD At the time of writing Surjit Singh Dhooper was Service Manager, Surgery Service, Department of Social Work Services, Cleveland Metropolitan General Hospital, Cleveland, OH 44109, and Adjunct Instructor, School of Applied Social Sciences, Case Western Reserve University, Cleveland, OH 44106. SUMMARY. Forty families of patients who had suffered from their first heart attack were studied during the hospitalization and after discharge. Areas of family functioning examined were maintenance of the emotional health of family members, financial management, household management, and dealing with children and their needs. Impacts of this family crisis varied among these areas as well as over time. Families employed different sets of coping strategies in different areas of their life. Implications of these findings for social work intervention in such crises are discussed. Family crises of various kinds have been widely studied (e.g., Angelí, 1936; Cavan and Ranck, 1938; Koos, 1946; Hill, 1949; Bakke, 1949; Eliot, 1955; Clausen and Yarrow, 1955; Jackson, 1956; LeMasters, 1957; Farber, 1959, 1960; Davis, 1963; Caplan et al., 1965; Brown et al., 1965), but there has

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been virtually no empirical research on heart disease as a family crisis. Heart disease is the first among the causes of death, accounting for 38.4 percent of total deaths in the United States. Each year approximately 1,300,000 persons suffer from heart attacks, and about half of these survive the attacks (Vital Statistics of United States, 1973). Heart attack in a member threatens the very integrity of the family. A few studies (Skelton and Dominian, 1973; Tyzenhouse, 1973; Croog and Levine, 1977; Finlayson and McEwen, 1977; Mayou et al., 1978) have touched upon the effect of heart disease on the family, with the following conclusions: 1. Families experienced financial strain, but there were no significant changes in the work role of wives. 2. There were notable changes in the roles of family members toward an increase in the wife’s responsibilities and a decrease in those of the husband, with the subsequent changes in the life-style of the wife. 3. There was an increase in wives’ anxiety, often accompanied by feelings of guilt, loss and depression at the time of husband’s heart attack and lingering on for many months. 4. Reactive illness was reported among the wives of heart attack patients. 5. Personality changes in husbands after the heart attack resulted in worsened family relationships, associated with increased tension and stress in the family. 6. Families that were already highly socially integrated received more assistance from outside sources during the crisis than did others.

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Such findings highlight the areas of family life affected by heart attack in the male spouse, with a focus on the wife. Little is known about what happens to other family members. How does the family as a unit deal with the strains created by such illness? Which areas of family functioning are the most vulnerable to the effects of a crisis of this nature? What is the process of family adjustment to such a crisis? Such questions have remained unexplored. The present study was aimed at understanding the impact of heart attack on the family; identifying areas of family life most vulnerable to this crisis; and learning about the coping strategies adopted by the family, and the process of its adjustment efforts. The focus of the study was upon those families on which a sudden life-threatening illness was likely to have the most unsettling effects. Our study sample was restricted to families of patients 60 years and younger (range being 32-60), with no history of major illness, hospitalized with the diagnosis of first myocardial infarction. We sought families representing a cross-section of social class and ethnic groups in a major metropolitan area. Forty families were drawn from five hospitals* in metropolitan Cleveland, Ohio. They closely reflected the racial composition of the area and included a wide range of socio-economic levels. Nearly two-thirds (62.5%) had children in the home. The specific areas of family functioning studied were: (1) financial management, (2) household management, (3) dealing with children and their needs, and (4) maintenance of the emotional health of family members. 333

In order to follow the family’s experience throughout the duration of this crisis, data were collected at three points in time: during the hospitalization of the sick member, a month after his/her discharge from hospital, and again three months later. Intensive, inperson interviews were conducted with the spouses of the sick members following a pretested schedule. The format included questions about the effects of the illness on the four areas of family life mentioned above, family’s dealing with those effects, the types and sources of help received, and the process of recovery. Preparatory trial-runs with the measurement scales produced evidence of their satisfactory reliability. The Family Adjustment to Crisis scale had an alpha reliability coefficient of .78. The instrument for measuring the source, type and extent of help received had an alpha reliability coefficient of .69. The coefficient for the Recovery scale was .64. The data were collected directly by the investigator himself over a two-year period. Findings of the study are grouped around the four areas of family functioning across the duration of the crisis. Our three contacts with each family are referred to as Times 1, 2, and 3.

I. Crisis and Emotional Health of Family Members The impact of the sudden serious illness on the emotional health of family members was quite marked. The immediate reaction of the spouse to the news of the heart attack was variously reported as shock, disbelief, fear of losing the spouse, anger, helplessness, etc. The fear of losing the sick member and the

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feeling of disbelief were the most common reactions. These spouses also suffered from such symptoms as sleeplessness, loss of appetite or indigestion, headache, trembling, restlessness, shortness of breath or chest pain, irritability, lack of concentration or forgetfulness. Of these, sleeplessness, loss of appetite or indigestion, and headaches were the most common symptoms experienced, lasting from several hours to several days with gradually reduced intensity over time. A week to ten days after the onset of illness the sick member had been moved to the Step-down section of the Coronary Care Unit and was considered to be out of danger. Spouses’ anxieties were still high, which a third rated as “Considerable” and most of the rest rated as “Somewhat.” Anxiety did not seem to be accompanied by an equal degree of insecurity, as only one spouse reported feeling a high sense of insecurity and ten said that they experienced only moderate feelings of insecurity. Twenty-five (62.5%) families had children at home, ranging in ages between 8 months and 19 years. The number of children in these families ranged from 1 to 6. In the case of three families, the children were the sick member’s stepchildren. The children’s reactions to parental illness were described variously as feeling anxious, crying, being quieter, sad, edgy, withdrawn; missing the sick parent; having disturbed sleep; feeling guilty; overeating, etc. The reactions varied with such factors as age of the child, presence or absence of another child in the family, availability of another adult to fill the gap created by the sickness and hospitalization of the one and the preoccupation of the other parent with that sickness, and whether or not the sick member was the child’s real parent. Of these, the child’s age seemed to stand out as 335

the most important factor, with children in the 6-12 age group being the most adversely affected by the parental illness. In spite of high levels of anxiety on the part of the spouse and some children, there was little reactive illness in the family at this early period. Two-thirds of the spouses reported changes in their social life. Of those who reported no remarkable change, a considerable number (36%) described themselves as essentially home-bound and without much social life prior to this illness. Few of the children were reported to be experiencing extensive changes in their social life. A month after the sick member had come home from the hospital, the impact of the crisis on the emotional health of other family members had somewhat lessened. The number of spouses reporting a high degree of anxiety had dropped from 14 at Time 1 to seven. However, those reporting moderate levels of anxiety had grown from 24 to 29. Hence, 90 percent of the spouses were still experiencing at least some anxiety an account of their partners’ illness. In little more than half of the cases, changes in the spouse’s social life were persisting. In contrast, the social life of virtually all the children had essentially returned to normal. In terms of the children’s reaction to the overall family situation, most seemed to be coping quite successfully. The incidence of reactive illness in the family was higher during the first month the sick member was home than when he/she had been in the hospital. In over a fifth (22.5%) of the families, a member other than the sick member had experienced some physical illness that was considered by the family to be secondary to the emotional strain of the crisis. 336

After the sick member had been home for three months, the life for most families seemed to them to have come back to “normal.” However, it had also been changed in some significant ways. Those spouses reporting little or no anxiety had grown from four to 11 over this period. The numbers reporting high levels of anxiety had dropped from seven to one, while those in the moderate category had remained essentially unchanged (29 at Time 2 and 28 at Time 3). These changes in the levels of spouse’s anxiety over time are reflected in Table 1. For most spouses, the realization that the sick member had a permanently damaged heart meant that there would always be some anxiety about his/her health. They were facing the fact that this was something that they would have to learn to live with. There was a drop in reported reactive illness from nine at Time 2 to four at Time 3. In a few cases, changes in the spouse’s social life were still persisting. Impact of the crisis on the spouse’s social life over time is shown in Table 2. Most of the children had resumed their social life completely, and their reactions to the parent’s illness and the family’s situation were unremarkable. TABLE 1 REPORTED LEVEL OF SPOUSE’S ANXIETY AT TIMES 1, 2, AND 3 Time 1 Level of Anxiety No. (%) None or Low 2 (5) Moderate 24 (60) High 14 (35) Total

Time 2 Time 3 No. (%) .No. (%) 4 (10) 11 (27.5) 29 (72.5) 28 (70) 7 (7.5) 1 (2.5)

40 (100) 40 (100) 40 (100) 337

TABLE 2 EXTENT OF REPORTED CHANGE IN SPOUSE’S SOCIAL LIFE AT TIMES 1, 2, AND 3 Time 1 Time 2 Time 3 Extent of Change No. (%) No. (%) No. (%). None or Little 14 (35) 18 (45) 34 (85) Somewhat 21 (52.5) 19 (47.5) 4 (10) Major 5 (12.5) 3 (7.5) 2 (5) Total

40 (100) 40 (100) 40 (100)

In coping with the emotional strain of the crisis the specific strategies employed by most spouses included passive acceptance; expressing feelings by talking to others; seeking information about the medical condition of the sick member and reassurance from physicians and others; and praying. Some reported increased or resumed smoking and overeating. Less than 10 percent needed medication to soothe their nerves. Most families encouraged their children to continue their school and/or social activities uninterrupted, generally played down the seriousness of the parent’s illness, and provided them explanations and reassurance in order to reduce their fears and anxiety. The emotional support that these families received from outside depended on the extent of their prior social networks. Families with adult children found them to be the most helpful. Next in importance were the siblings of the spouses. Of the non-kin, friends and neighbors were the greatest source of emotional support. Formal human service agencies and programs were not helpful; only 12 percent of the families reported receiving any assistance from them.

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II. Crisis and the Family’s Financial Management Questions about the sick member’s life and death dominated the concerns of other family members in the early phase of the crisis. In most cases, no financial strain was yet felt. However, worries about the anticipated or feared financial strain in the near future soon began vying with other concerns for a place in the mind of many a spouse. In almost half of our families, the spouse did not work and the family relied wholly on the income of the sick member. In another 18 families, the spouse had either a full-time or a part-time job or was involved in a family business. These families thus had income available from more than one source. Many of them had never considered the spouse’s income to be a major resource for the family. The financial impacts took a variety of forms. Twenty families had assurances of continuing income due to its source: social security, private retirement plans, or adequate credit for paid sick time. Five of the patients were homemakers whose illness was not perceived as adversely affecting the financial state of their families. In another five families the sick member ran his own business or was in private practice (two were physicians and one a lawyer), and cash flow had not been interrupted yet. Two families were on welfare and were quite familiar with a precarious financial status. Spouses of several other patients were hoping but unsure whether income from their jobs would continue during the illness. One patient had been laid off from work and was receiving unemployment benefits at the time of his attack. This source of financial support also stopped, on the 339

technicality that since he was sick he was not able to fulfill the condition that he look for other employment. In such cases the crisis turned hopes of improved financial condition in the near future into despair. The presence of adequate health insurance coverage is an important issue at such a time. Slightly less than half of the families studied had comprehensive hospitalization and medical insurance coverage, while 19 had insurance policies that provided for varying degrees of illness-related expenses. Ignorance about the extent of coverage provided by those policies was a source of concern for some of these families. Three families had no insurance at all, a fact which had influenced one of these to delay seeking medical help for the sick member. For each of these families, fear of large hospital bills was a major concern for the sick person as well as the spouse. Overall, however, the financial impact of the illness was not felt by most families until later in the process. By the time of the second contact, the financial strain was increasingly present for a larger number of families. Those reporting no financial strain had dropped to 28 by Time 2, while the number reporting that they were feeling the financial consequences of the illness had more than doubled. This was primarily due to the actual loss of income from the sick member’s work and because most families had started receiving illness-related bills from hospital and physicians. The necessity for medicines prescribed for the sick member was a new expense. In about half of the families, the sick member’s income had either completely or partially stopped. Three months after the patient’s discharge from the hospital, over a third of the families were still feeling at least some 340

financial strain. Even in cases where the sick member had resumed his work responsibilities and income had resumed, many reported problems with paying off debts created by the crisis. In those families where the sick member could not go back to work, sick time benefits were being depleted and government agencies were ponderously determining the sick person’s eligibility for benefits. For these families, the crisis was far from over. Overall, the number of families reporting little financial strain at this time dropped from 28 at Time 2 to 25 at Time 3. The number of families which were financially hurting the most had remained essentially unchanged, while those under at least some strain had risen from nine to 12. Table 3 summarizes the data regarding the number of families experiencing financial strain over the period of the study. TABLE 3 REPORTED FINANCIAL STRAIN EXPERIENCED BY FAMILIES AT TIMES 1, 2, AND 3 Time 1 Time 2 Time 3 Degree of Strain No. (%) No. (%) No. (%) Little or None 35 (87.5) 28 (70) 25 (62.5) Somewhat 1 (2.5) 9 (22.5) 12 (30) Considerable 4 (10) 3 (7.5) 3 (7.5) Total

40 (100) 40 (100) 40 (100)

Coping with the financial strain of the crisis took a variety of forms. Families used such strategies as using up savings, putting off paying bills, cutting expenses to the barest minimum, changing patterns of expenditure, seeking help

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from kin, spouse (and in one case teenage children) starting to work, and seeking public assistance. Very little financial help was reported from kin and non-kin sources. Two families already had been receiving public welfare, and three others began receiving assistance from the local county welfare department.

III. Crisis and the Family’s Household Management For most families, the crisis had marked and early effects on household management. The desire of most spouses to be near the sick member in the hospital prompted the greatest change in most families’ routines. A few of the working spouses were able to modify their hours of work to accommodate this priority. Some spouses went to the hospital two to three times a day. One spent whole days at the hospital. Two-thirds of our families suspended regular formal meal times. In nine families household chores were either neglected or postponed indefinitely because of the absence of the spouse from home or members’ lack of motivation to do such work. Four spouses reported spending most of their waking hours at home sitting near the telephone awaiting a call from the hospital or answering inquiries about the sick member’s illness from relatives, friends and acquaintances. Recreational activities both outside and within the home, including watching television, were reported to have been given up by over a quarter of the families. Sleeping hours of 342

the spouse and children had changed for some, while social activities, including voluntary work and church attendance, were suspended in others. Family routines pertaining to children’s needs were neglected or attended to by others in nine cases. Such changes in family routines reflected the sense of strain upon household management reported by a majority (70%) of our families. Those few who reported no strain in this area included those that were composed of the sick member and his/her spouse only. For these, the non-essential household activities were perceived to be easily suspended. The household tasks formerly carried by the sick member were completely suspended in six cases, partially suspended in 10, and completely taken over by others in 24 (60%) families. A month later, the suspension or disruption of household work experienced by most families earlier had been moderated, while for some the household had not yet returned to its former pattern. Almost three quarters of the families had regained either complete or most of the control over their household management during this period. However, the presence of the sick member at home all the time, his/her inability to perform regular household tasks, and his/her special needs had prompted new patterns in family routines and individual responsibilities. Because of the sick member’s need for rest, special diet, some exercise, seven families were not entertaining as much as before; another seven were not going out for meals; while five families were cooking and learning to eat new foods recommended for the sick member so that it would be easier for him/her to accept the change in diet. Two families reported that they were eating at different hours, while three had new sleeping 343

hours. For some, the outstanding feature of this period was a reversal of roles of the spouses. With sick husbands now at home all the time, two spouses complained of feeling disorganized and not accomplishing as much household work as they used to before. One family found their household so thoroughly disrupted that the spouse despaired of any routines or pattern to the tasks. On the other hand, all reported that the heart attack had stimulated an awareness of the importance of proper diet and exercise for everyone. Fourteen families were still using some help from outside. By the third month, most families had regained some control over household management, though the new patterns were not the same as those reported before the crisis. As compared with Time 2, the number of families now reporting no adverse effect of the crisis on the household management had risen from 13 to 30. Effects of the crisis on household management over time are reflected in Table 4. TABLE 4 EFFECT OF THE CRISIS ON THE FAMILY’S HOUSEHOLD MANAGEMENT AT TIMES 1, 2, AND 3 Effect

Time 1 Time 2 Time 3 No. (%) No. (%) No. (%) None 12 (30) 13 (32.5) 30 (75) Minimal 11 (27.5) 16 (40) 5 (12.5) Somewhat 11 (27.5) 9 (22.5) 3 (7.5) Major 6 (15) 2 (5) 2 (5) Total

40 (100) 40 (100) 40 (100)

While 30 families reported no continuing adverse effects at Time 3, they had discontinued such activities as picnics and

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trips, playing golf and bowling, going out to eat, etc. Not only the contents of their meals but also the eating schedules were different now. Some families complained of the neglect of yard work. Such changes were even more extensive for the remaining 10 families. One spouse who did not drive and used to enjoy shopping with her husband before his illness now found herself depending on a son for all their shopping. Nine families felt that some assistance from outside was still needed. Strategies for coping with the effects of the crisis on the household management included: Suspending non-essential activities, mobilizing the family’s own resources, shifting pre-crisis responsibilities and tasks of family members, and seeking help from outsiders. Most outside help utilized was from adult children, friends and neighbors and not from formal social agencies.

IV. Crisis and the Children’s Needs At the time of the heart attack none of the families was so desperate that the children’s physical well-being was in jeopardy. There was disruption of regular meal times in many families and a child might not feel like eating because he/she was sad or concerned about the sick parent; however no child in our study sample went without food or other necessities of everyday life. A child’s need for attention, affection, explanation of what was happening, and reassurance about the safety of the sick parent may be neglected in a situation brought about by a sudden life threatening illness in the family. These non-material needs of the children were explored. In response to inquiries about the children’s

345

reactions to the family situation, the parents gave such answers as: “The family atmosphere is tense”; “Joking and lightheartedness that used to characterize our family have gone”; “The commotion is not there”; “The child has become very patient”; “She is acting more maturely”; “He is urging me (mother) to go to work”; and “There is nothing really remarkable.” Age of the child seemed to be associated with his/her reactions to parental illness. There were 8 children in 0-5 year age group, 16 in the 6-12, and 33 in the 13-and-over age bracket. Nine families had one child, and nine others had two children each, two had three, three had four, and two had five or more children. The pre-schoolers were too young to understand the seriousness of the family crisis, and the presence of the mother or a mother substitute in the home was reported to be sufficient to meet their needs. Most of the children in the teenage category evidenced some initial upset at the onset of the crisis, but functioned adequately in their school, social and household activities. Many volunteered for extra tasks at home and helped the family in many small ways. Children in the 6-12 age group seemed to be the most vulnerable to the family stress. Most of the families felt that they were able to recognize the feelings and fears of their children and to give them the needed attention and reassurance. In most cases, the tasks formerly carried by the sick member regarding the children’s needs were quickly assumed by the other parent, who performed these either single-handedly or with the help of the older children at home. One mother sought the assistance of close family friends, while four families reported receiving 346

help from relatives in caring for the children. In two families, the tasks formerly performed by the sick member were suspended. Overall, the initial impact of the crisis on the family’s ability to meet the children’s need was considered by many spouses as minimal. A month later, the family’s ability to function adequately with regard to children’s needs improved markedly. Most families were able to ensure that school attendance and recreational activities of the school-age children were maintained. Children in their teens were reported to be generally understanding and helpful. They were consciously attempting to avoid doing things that would upset the sick parent, and some of the sick parents reported that (in the interest of their own health) they were responding to the children differently. In a majority of cases the sick member had resumed some of his/her former child-related tasks either singly or with the help of the spouse or someone else. Little help from outside was required in this area by most families beyond occasional assistance with transportation. By the third month, most families reported that their children’s life had returned to its pre-crisis level. No reactive illness was reported in any child. In almost all families children were showing little overt anxiety over the illness. Most sick members were at home and spending more time with their children now. Some felt that they had become more sensitive to and concerned about their children. Concurrently, some families saw their children as having grown more responsible. They were reported to be doing their share of household chores much more willingly. Others were making sure that the ill parent did not undertake any potentially harmful activity. 347

The number of families in which the sick member had resumed his/her child-related tasks him/herself had gone up from 12 at Time 2 to 19 by Time 3. Most families were requiring no assistance from outside in this area. Table 5 summarizes the changes in the felt impacts of the crisis on child care over time. The methods of coping with the effect of the crisis on the children’s needs which most families utilized included reassurance about the safety of the sick parent; playing down the seriousness of his/her illness; taking the children to the hospital to see the sick parent; explanation of his/her condition and treatment; encouraging the children to follow their everyday routines, particularly their recreational activities; and seeking help of outsiders in these strategies as well as for more concrete services especially in the care of smaller children. Middle and upper class families also involved the sick member’s physician in explaining to the children their parent’s medical condition.

V. Recovery from the Crisis TABLE 5 IMPACT OF THE CRISIS ON THE FAMILY’S CHILD-RELATED FUNCTION AT TIMES 1, 2, AND 3 Impact

Time 1 No. (%) None 5 (20) Minimal 12 (48) Somewhat 7 (28) Considerable 1 (4)

Time 2 No. (%) 13 (52) 10 (40) 1 (4) 1 (4)

Time 3 No. (%) 20 (80) 3 (12) 2 (8) -

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Impact Total

Time 1 Time 2 Time 3 No. (%) No. (%) No. (%) 25 (100) 25 (100) 25 (100)

The impacts of the crisis on different areas of family functioning was not uniform. At Time 1, the strongest pressure was felt on the family’s ability to maintain the emotional health of its members. Somewhat less impact was perceived upon household management, and less on its meeting the children’s needs. Financial strains were not evident until later. By Time 2, the emotional impacts of the crisis had somewhat diminished and the focus of concern shifted to the area of financial management. By Time 3, the crisis was generally over for most families. Some effects lingered in the areas of the spouse’s anxiety and the family’s financial concerns. Additional indicators of recovery are seen in the sick member’s resumption of his/her normal activities in important areas of life. Table 6 reflects that picture at Time 2. Over four-fifths of the sick members had not resumed their former work activities at Time 2. The two persons who had resumed full-time work included a lawyer in private practice and a man who had worked for only four months for his new employer and was extremely worried about his family’s financial situation. The three who had resumed work on a part-time basis, included two who were quite worried about sick leave limitations from their employers and one who ran his own business. In most families the sick member had not resumed his/her household duties but had resumed the child-related functions at least partially.

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TABLE 6 SICK MEMBER’S RESUMPTION OF NORMAL LIFE ACTIVITIES AT TIME 2 Level of Work Household Resumption Activities Activities No. (%) No. (%) Complete 2 (5) 6 (15) Partial 3 (7.5) 21 (52.5) None 27 (67.5) 13 (32.5) Not 8 (20) applicable

Child-related Social Life Activities Activities No. (%) No. (%) 12 (48) 5 (12.5) 10 (40) 23 (57.5) 3 (12) 12 (30)

Total

25 (100)

40 (100) 40 (100)

-

40 (100)

Was the family emerging better, as before, or worse from the crisis experience? As an overall outcome, at Time 2, 24 (60%) spouses placed their families in the “Better,” eight (20%) in the “As before,” and eight (20%) in the “Worse” categories. Spouses in the “Better” category gave such reasons as “We are emotionally closer to each other now,” “I have a better feeling for what life would be without her,” “I am less self centered,” “I am not uptight about anything any more,” “We have learned to do with much less,” and “My faith in God has increased.” The reasons for the family life being worse included: “I am still nervous, worried, sleepless,” “She has become very impatient,” “We have no social life like before,” “Financially life is worse,” “Our sex life is not back to normal,” and “We are on the verge of divorce.” By Time 3, most sick members had resumed their normal activities as seen in Table 7.

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As compared to Time 2, the number of families where the sick member had completely returned to his/her work activity at Time 3 rose from two to 20, a tenfold increase. The number of sick members who had partially resumed their work also increased from three to four. The combined number of families in which the sick members had either completely or partially resumed their household activities also rose from 27 at Time 2 to 34 at Time 3. Only in six cases was the sick member doing little or no household work; two of whom had reportedly never done much work at home. TABLE 7 SICK MEMBER’S RESUMPTION OF NORMAL LIFE ACTIVITIES AT TIME 3 Level of Work Household Resumption Activities Activities No. (%) No. (%) Complete 20 (50) 25 (62.5) Partial 4 (10) 9 (22.5) None 8 (20) 6 (15) Not 8 (20) applicable

Child-related Social Life Activities Activities No. (%) No. (%) 19 (76) 25 (62.5) 5 (20) 11 (27.5) 1 (4) 4 (10)

Total

25 (100)

40 (100) 40 (100)

-

40 (100)

Had the crisis left the family better, just the same, or worse? The picture of the family’s overall functioning at Time 3 was not as bright as at Time 2. Although the number reporting their overall condition as “Worse” remained unchanged, the number evaluating themselves as “Better” had shrunk from 24 (60%) at Time 2 to 16 (40%). Many families felt that although life had come back to normal in many respects, it

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was also different significantly, but perhaps not necessarily better. Fewer gave such responses as: “We are emotionally closer and have better communication,” “We have better understanding and appreciation for each other.” Another pattern of thought seemed to have become more prominent, voiced as: “We are trying to enjoy life each day,” “He is beginning to relax more.” Other reflections pertained to the changes in the family’s dietary habits, including non-smoking on the part of the sick member, and the changed life-style. The comments given by families that saw themselves as worse clustered around concerns about the sick member’s health, continuing financial difficulties, and unsatisfactory sex life. Almost two-thirds of the families reported that the heart condition of the sick member necessitated permanent changes in the family’s life-style. Changes mentioned included controlled diet, regular exercise, non-smoking, slowing down overall, learning to relax, planning for early retirement or job change for the sick member, spouse continuing to work or finding full-time employment, family starting a side business, selling the present house and moving to a smaller place, etc. Those families that did not feel the need for future planning generally gave such reasons as: “We hope, everything will be all right,” “We are living from day to day,” “I don’t want to plan,” etc.

VI. Practice Implications This study has sought to understand the impacts of the crisis of heart disease on four vital areas of family life and the subsequent process of family adjustment. The impacts of the

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crisis were explored in four areas of family life at three points in time. The findings have several important implications for social work practice in these and other similar crisis situations. 1. Family members’ emotional health was found to be the most vulnerable characteristic throughout the time period. The overwhelming majority of spouses reported immediate anxiety, which later was seen in reactive illnesses. During the initial acute phase of the crisis, spouses seemed so engrossed in their situation that they tended to ignore or minimize their own health problems. Consistent with the findings of Skelton and Dominian (1973), many wives found the convalescent period after the husband’s discharge from the hospital very stressful. This would suggest a need for social services to such families throughout the duration of the crisis rather than only in its acute phase. 2. Our finding that the child’s age is linked to his/her reaction to parental illness is consistent with that of Inbar (1976). Children in the 6-12 year old bracket seem more vulnerable to crisis in their environment than either younger or older youth. In dealing with the children’s anxiety, most families mobilized their own resources as well as their social support systems. Some also involved the sick member’s physician in explaining the condition of their parent, a method that was reported to be very helpful. Health care providers should incorporate this component into the crisis intervention approach to families with children. 3. Many families experienced severe financial strain. Unlike other areas of family functioning, the impact of the crisis on 353

this dimension worsened with the passage of time. Little financial help from either kin or non-kin sources was available to those families that needed such help. Government agencies’ criteria for eligibility seem to stringent and procedures far too slow for such families in crisis. The need for more responsive emergency financial assistance is apparent. 4. The families which had no health or medical insurance were understandably worried about the financial consequences of the illness. Even those who did have some such coverage were also confused, concerned and worried. Ignorance about the extent of the coverage was an important component of that concern. In the midst of a major crisis, most spouses were not able to obtain the needed information and clarification. Assisting with this need should be included in hospital social services. 5. A range of coping techniques was used by families in this study. For example in the area of maintaining the emotional health of family members, the techniques employed were aimed at understanding and controlling the stress, while those in the area of financial management were directed toward concrete steps to modify the situation. Most of these methods included some form of seeking help from others within their social networks. The help thus received was found to be important. This is consistent with the finding of Finlayson (1976), who concluded that there was a positive relationship between the outside help received by the wives of heart attack patients and favorable outcome in the patients’ recovery. Significant others in a family’s social network do affect its crisis

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resolution efforts. Identifying and mobilizing such networks should be a component of crisis intervention. 6. A crisis is a turning point—a danger and an opportunity in the life of those affected by it. Nearly half of our families emerged out of their crisis feeling stronger and better as a result of it, while a fifth felt that they were worse off in their overall functioning. The great majority of these families did not receive any help from formal human service agencies or programs in dealing with their crisis. Croog, Lipson and Levine (1972) had reported a similar finding. Seventy-two percent of the heart attack victims that they studied had made use of no institutional or professional services aside from contact with their physician. Most of the hospitals which participated in our study had well-established social service departments, yet most of the families were totally unaware of the availability of the services of those departments. Had the needed services been provided the proportion of families emerging from their crisis stronger and functioning better likely would have been greater. A systematic screening for high risk patients would result in greater utilization of social work services. Waiting passively for physician referral, as some of those departments did, is not sufficient. Social work departments should make their services more visible and accessible to patients and families in crisis.

Notes * 1. Cleveland Metropolitan General Hospital, 2. Fairview General Hospital, 3. Lakewood Hospital, 4. Lutheran Medical Center, S. Mount Sinai Hospital of Cleveland.

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The author thanks Dr. Thomas P. Holland, Case Western Reserve University, for his helpful comments in the preparation of this article. Reprinted from Social Work in Health Care, Volume 9(1), Fall 1983.

References Angelí, R. O. The family encounters the depression. New York: Charles Scribner, 1936. Bakker, E. W. Citizens without work. New Haven: Yale University Press, 1949. Brown, H. F., Burditt, V. B. and Udell, C. W. The crisis of relocation. In H. J. Parad (Ed.), Crisis intervention: Selected readings. New York: Family Service Association of America, 1965. Caplan, G., Mason, E. and Kaplan, D. Four studies of crisis in parents of prematures. Community Mental Health Journal, 1965, /, 149-161. Cavan, R. S., and Ranck, Κ. H. Family and the depression. Chicago: Chicago University Press, 1938. Clausen, J. A., and Yarrow, M. R. (Issue Editors). The impact of mental illness on the family. Journal of Social Issues, 1955, 17(4).

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Croog, S. H., Lipson, A. and Levine, S. Help patterns in severe illness: The role of kin network, non-family resources, and institutions. Journal of Marriage and the Family, February 1972, 34, 13-23. Croog, S. H., and Levine, S. The heart patient recovers. New York: Human Sciences Press, 1977. Davis, F. Passage through crisis: Polio victims and their families. Indianapolis: Bobbs-Merrill, 1963. Eliot, T. D. Bereavement: Inevitable but not unsurmountable. In H. Baker and R. Hill (eds.), Family, marriage and parenthood. Boston: Heath and Company, 1955. Farber, B. Effects of a severely mentally retarded child on family integration. Monographs of the Society for Research in Child Development, 1959, 24(2). Farber, B. Perceptions of crisis and related variables in the impact of a retarded child on the mother. Journal of Health and Human Behavior, 1960, 1, 108-118. Finlayson, A. Social networks as coping resources—Lay help and consultation patterns used by women in husband’s post-infarction career. Social Science and Medicine, 1976, 10, 97-103. Finlayson, A. and McEwan, J. Coronary heart disease and patterns of living. London: Croom Helm, 1977.

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Hill, R. Families under stress: Adjustment to the crisis of war separation and reunion. New York: Harper and Brothers, 1949. Inbar, M. The vulnerable age phenomenon. New York: Russell Sage Foundation, 1976. Jackson, J. K. The adjustment of the family to alcoholism. Marriage and Family Living, 1956, 18, 361-369. Koos, E. L. Families in Trouble. New York: King’s Crown Press, 1946. LeMasters, E. E. Parenthood as crisis. Marriage and Family Living, 1957, 19(4), 352-355. Mayou, R., Foster, A. and Williamson, B. Psychological and social effects of myocardial infarction on wives. The British Medical Journal, 1978, 1, 697-701. Skelton, M. and Dominian, J. Psychological stress in wives of patients with myocardial infarction. The British Medical Journal, 1973, 2, 101-103. Tyzenhouse, P. Myocardial infarction—Its effects on the family. American Journal of Nursing, 1973, 73, 1012-1013. Vital Statistics of the United States, 11. U.S. Department of Health, Education and Welfare, Public Health Service, 1973.

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Evaluation of Social Work Practice in Health Care Settings K. Jean Peterson, DSW Sandra C. Anderson, PhD At the time of writing K. Jean Peterson was Assistant Professor and Sandra C. Anderson was Associate Professor, School of Social Work, Portland State University, P.O. Box 751, Portland, OR 97207. The authors thank Barbara J. Friesen, PhD for her valuable comments on an earlier version of this paper. They are indebted to Charlene Rhyne, MSW for the case sample used in this paper. SUMMARY. The purpose of this article is to encourage social workers in health care sellings to evaluate the effectiveness of their practice. Recent studies of intervention outcome in health care settings are reviewed on four dimensions. Because most of these utilize large group designs and social workers in direct practice rarely conduct this type of research, single-system designs are proposed as a complementary and feasible approach to evaluation. Issues in the use of single-system designs within health care settings and a case example will be discussed. The past 10-15 years has seen an increasing interest in research by social workers in the health care field. A major

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impetus behind this research activity was the implementation of quality assurance programs which mandated social workers to start examining their practice in a systematic way. While different typologies of research within the field have been developed, a category which is included in most is that of social work effectiveness or outcome studies. Two recent articles have noted the dearth of research related to effectiveness in health care (Coulton, 1980; Berkman & Weissman, 1983). A recent review and critique of controlled studies evaluating psychotherapy with medically ill patients found only 18 studies published since 1936 (Conte & Karasu, 1981). Of these 18 studies, none had been published in the social work literature. Kane (1982) has called upon medical social workers to become more outcome oriented, stating that “psychosocial factors are acknowledged to be associated with physical well-being,” and that “the immediate agenda for social workers is not to prove the problem but demonstrate and test the solution” (p. 316). Single-system research designs have gained increasing attention within social work in recent years as a means of evaluating the outcome of interventions. Yet, most of the articles dealing with social work intervention in health care question the applicability of this type of research “to most of the work being done in health care settings” (Berkman & Weissman, 1983, p. 233). A review of the social work literature since 1979 revealed only one study related to health care which used the single-system design to measure intervention effectiveness. The remainder of the studies employed traditional large group designs. Bloom and Fischer (1982) suggest that there are complementary roles for these two forms of research, with 360

“single system designs to monitor and evaluate practice with every case/situation, and classical, experimental, control group research to be used as the basis for selecting intervention programs. Based on demonstrated evidence of the effectiveness of the programs or techniques studied” (p. 15). Coulton (1980) has also suggested that small clinical studies using the single-system design may be used to “generate promising hypotheses to be tested later on larger groups using experimental designs” (p. 131). Within health care, the majority of clinical studies have remained anecdotal rather than involving systematic data collection. Many of the studies employing large group designs have methodological flaws which hamper their usefulness. The purpose of this article is to encourage social workers in health care settings to evaluate the effectiveness of their practice. Studies published in the social work literature since 1979 which have addressed intervention effectiveness in health care settings will be reviewed. (For an excellent and comprehensive review of the literature prior to 1979, the reader is referred to Coulton, 1980.) Each study will be systematically reviewed on four different dimensions, with a discussion of the methodological problems which reduce the usefulness of the study for the practitioner. Because most social workers in direct practice do not conduct large group research, single-system designs are proposed as a complementary approach to evaluation. Issues in the use of single-system designs within health care settings and a case example will be discussed.

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Review of Studies A review of the social work literature since 1979 yielded 15 articles which addressed intervention effectiveness in health care related settings. Table 1 summarizes these 15 studies on four dimensions. The studies are categorized according to the research design employed, including retrospective designs, before and after designs, comparison group designs, and single-system designs. While many different dimensions can be utilized in critiques of studies, four of these dimensions have particular importance for the present review.

Dimensions of Review 1. Use of comparison groups. Ideally, within the experimental, control group design at least two groups of clients are randomly assigned to different groups in order to compare outcome. When random assignment is impossible, the experimental group may be evaluated before and after intervention or may be compared with an existing no treatment or comparison group. In any of these situations, the researcher is unable to control for factors which may have influenced outcome. 2. Number of times measures are repeated. In most experimental, control group studies data are only collected a few times, usually before and after intervention has taken place. If a control group has been used, any differences between the experimental and control groups after intervention are assumed to be due to the intervention. However, as noted, control groups are not always available.

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The use of repeated measures can strengthen the large group study if a control group is unavailable. TABLE 1

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364

365

366

367

368

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3. Choice of goals of research. In most experimental, control group studies the choice of goals are defined by the researcher. Subjects are included based on the assumption that they fit a category of need where the goals are relevant. Subsequently, data on the subjects is grouped or averaged to determine the degree of change or difference.

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4. Specificity of intervention. Integral to any outcome research is the need to be specific about the intervention being evaluated. A number of studies have found that social workers tend not to refer to or utilize research findings, especially when faced with practice situations which are difficult (Eaton, 1962; Rosenblatt, 1968; Casselman, 1972; Kirk, Osmalov, & Fischer, 1976). Lack of detail about intervention strategies often makes replication impossible, and reduces the utility of the findings to the individual practitioner.

Retrospective Designs Three studies evaluated the efficacy of their programs in reaching their stated goals by using a retrospective evaluation. West, Mcllvaine, and Sells (1979) used a modified educational support group with parents of children with Williams elfin facies syndrome, while Mahan, Schreiner, and Green (1983) evaluated the efficacy of “bibliotherapy” with a group of bereaved parents. Finally, Johnson and Stark (1980) evaluated the use of an educational support group for cancer patients and their families. In each of these studies, data was gathered through use of a mail survey sometime after intervention was completed. Though each of the authors indicated that the results of their studies showed that the program had been effective in attaining its objectives, the use of the retrospective design and lack of a comparison group mitigated against making any causal statements. All of the studies grouped the data collected, masking any individual differences in outcome. Lack of specification of process in each of these studies makes it difficult to replicate the intervention strategies employed and/or to predict the impact

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of intervention on a given client or group. In general, it might be more appropriate to consider these three studies as measuring consumer satisfaction, rather than evaluations of intervention effectiveness. At the same time, these articles provide the reader with ideas about new intervention strategies or programs. The efficacy of some of these strategies might have been evaluated by employing a well controlled, experimental design or by utilizing repeated measures. For example, West, Mcllvaine, and Sells (1979) used a “parent consultant” as an integral part of their group intervention in order to facilitate discussion in the group meetings. From their description it appeared that considerable time was spent training this parent as a facilitator, but the evaluation of the group gives no indication of how this person impacted group process, attendance, or an increase in knowledge of group members. The impact of this role could have been studied by having a control group in which the parent consultant was not utilized. If a control group was not available, this study would have been immeasurably strengthened had repeated measures been used in the evaluation. One option would have been the A-B-BC design. Baseline data (A) could have been gathered on the group members and then the modified educational support group (B) instituted, with continued data collection. After stabilization of the measures, the “parent consultant” (C) could have been included in conjunction with the modified educational support group (BC). Any changes in the measures between B and BC would have provided some objective indication of the value of including the “parent consultant” as part of the intervention strategy. Possible measures could have included the number of questions members asked during 372

the group sessions, attendance, and knowledge gained from each session.

Before/After Designs Five studies evaluated the efficacy of their programs by gathering data both before and after intervention took place. Selan and Schuenke (1982) measured attitude and knowledge change of a group of caregivers of the elderly who participated in eight group sessions. Ross and Scarvalone (1982) also used an educational group to intervene with nurses and teachers in the schools of pediatric oncology patients. Supiano and Peacock (1982) evaluated the efficacy of a comprehensive program in returning residents of a long-term care facility to the community, while Burnell and Taylor (1982) evaluated the use of psychoeducational groups with members of a health maintenance organization. Finally, Lindenberg and Coulton (1980) evaluated the extent to which post-hospital needs of patients had been met subsequent to discharge. The evaluations of the first four programs indicated that they had been effective in attaining their objectives, but questions of individual client differences in outcome were not addressed due to aggregation of data. In addition, lack of specification of intervention makes it difficult to replicate the strategies used or to predict the impact of the intervention on a given client group. The study by Lindenberg and Coulton (1980) provided more information about how outcome was related to the discharge plans of the individual clients, though there was no attempt made to delineate the intervention used by the social workers 373

in the study. The authors found that a number of identified needs of hospitalized patients had not been met on follow-up. Specifically, the study found that the patient’s post-hospital needs were less likely to be met when the designated provider was the patient’s family or friends. The suggested explanation for these findings according to the authors was that family and friends are designated as providers when community resources are not available. Alternative explanations of these findings might be that the families who adequately met the needs of the discharged patients either differed in some way from the families who did not, or perhaps the families received different types of intervention during the patient’s hospital stay. While the study provides important information about the gaps in meeting the post-hospital needs of patients, the aggregation of data and lack of specification of intervention makes it impossible to determine which of these rival explanations account for the findings.

Control Group Studies Six additional studies compared the efficacy of specific intervention strategies with a control or comparison group. While these studies are similar in the design employed, as can be seen from Table 1, there is a great deal of variation in the amount of detail provided on intervention strategies, individual client characteristics, and the client problem/need under study. Four of the control group studies focused on hospital based programs, while the other two were outpatient/prevention based. Pendarvis and Grinnell (1980) studied the functional health of

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stroke patients who were treated by an interdisciplinary team and compared this group with a no treatment control group. While the results were positive, the authors state that “further study is needed to learn what aspect of team practice is producing the positive results, i.e., whether group process, multiple insights, skills, etc.” (p. 83). The use of repeated measures and the introduction of intervention in phases would address this issue. Kupst and associates (1982) studied the phases of adaptation of families of pediatric leukemia patients over a period of two years. The families were randomly assigned to one of three groups: total, moderate, or no intervention control group. The authors give an excellent description of the intervention strategies employed and how these strategies differed according to the phase of treatment. While significant differences were found between the two experimental groups and the control group during the early outpatient phase of treatment, by the end of two years there were no significant differences in coping in the families whose children were still alive. No data was available about family coping patterns in the families whose children had died. Dillard, Auerbach, and Showalter (1980) evaluated the efficacy of a program for parents of children in a neonatal intensive care unit, comparing the attitudes of these mothers with mothers of healthy term infants. No significant differences between these two groups of mothers were found at the time of discharge of their infants from the hospital on measures of attitudes concerning pregnancy, medical care, future health concerns, or the Broussard Neonatal Perception Inventory. The authors state that intervention was based on a crisis intervention model and give a detailed description of 375

the strategies used in the program. Due to the aggregation of data, however, no information was given which related specific client characteristics or needs to specific intervention strategies and subsequent outcome. Evans and Jaureguy (1981) studied the efficacy of cognitive behavioral group therapy by telephone with a group of visually impaired, elderly veterans and compared this group with a no treatment control group. The results indicated that there were significant changes after intervention for the experimental group on measures of outside social activities, involvement in household chores, and measures of loneliness. The authors also found significant differences within the experimental group on attainment of individual goals, contingent on the expectation by significant others that these goals would be met. This finding is important to the practitioner in modifying treatment strategies, suggesting that assessment and intervention with families may be necessary with some groups of clients to effect outcome. While no differences were found between the experimental and control groups prior to intervention, a serious methodological flaw in this study was the lack of data on the control group after intervention. In essence, this study employed a before/after design because of this flaw. The final two control group studies focused on the efficacy of cognitive behavioral intervention in preventing health related problems. Schinke, Gilchrist, and Blythe (1980) evaluated the efficacy of interpersonal skills training with a group of teenage women at risk for additional pregnancies. This group was compared with a group of women who participated in an unstructured discussion group. The results indicated that the 376

experimental group “showed more convincing behavior, had higher ratings of self-esteem, and viewed themselves as more in control of their lives” (p. 57). The evaluation was based on in-group behavior and the authors acknowledge that long-term follow-up is needed to determine how these new skills affect sexual behavior. The aggregation of data precluded examination of the relationship of individual client characteristics and needs to outcome. Levy, Lodish, and Pawlak-Floyd (1982) also used a social skills and cognitive training model to increase preventive dental care in a group of school children age 11-12. The experimental group was compared with children who received only the standard dental curriculum from the County Department of Public Health. Significant differences were found between the two groups on a knowledge test, but no significant differences were found on role plays of preventive behavior of self-report questionnaires. Again, the authors did not relate outcome to individual characteristics, and no guidelines for modification of the program to enhance effectiveness are provided. Methodologically, these control group studies are much stronger than those previously reviewed in providing evidence of intervention effectiveness in health care related settings. A number of these studies are based on intervention strategies which have been empirically tested with other populations, while others are more exploratory in nature. All of these studies indicate a need for further research.

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Single System Designs The only study which employed a single-system design to study the effectiveness of intervention in a health care related setting was published by Blackman, Gehle, and Pinkston (1979). The purpose of this study was to determine if operant techniques designed to increase self-feeding behavior of the mentally retarded would be effective in increasing self-feeding behavior of institutionalized elderly women. The three women chosen for the study predominantly used their hands to feed themselves, had the ability to raise and lower at least one arm between the waist and nose, and were all diagnosed as having dementia, confusion, disorientation, and some form of sensory impairment. The authors specified the intervention techniques utilized during different phases of intervention, and operationally defined what was meant by appropriate and inappropriate feeding behavior. In order to increase the probability of demonstrating a causal relationship between intervention and change in behavior, the authors employed three different approaches: (a) a multiple baseline design across subjects, (b) a multiple baseline across situations, and (c) a reversal design with one of the subjects. The results indicated that the operant techniques were successful in increasing appropriate behavior and decreasing inappropriate self-feeding behavior for all three women. The use of a multiple baseline design across situations indicated that the behavior did not generalize from lunch to dinner, but that the entire operant intervention strategy was not necessary to increase appropriate self-feeding behavior in new situations. Perhaps of most importance is the fact that the study specified the process of intervention so that any practitioner

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could replicate the strategies employed and predict the impact of this intervention on a given group of clients.

Issues in Employing the Single-System Design Unlike experimental, control group designs which compare groups, single-system designs make comparisons between time periods for the same system. In single-system designs, the client acts as his or her own control. Goals within the single-system design are usually selected by the client system and articulated by the research/practitioner in terms that can be measured. Feedback in the single-system design is immediate, and intervention may be modified if it is not leading to the desired results. As mentioned previously, some authors have questioned the relevance of single-system designs to social work practice in health care settings. Berkman and Weissman (1983) state that “although the results of single-subject research have proliferated and numerous examples are available, this type of research, as yet, has little applicability to most of the work being done in health care settings” (p. 233). The major issues in applicability appear to center around problems in the areas of measurement and design. It should be noted that these issues are not unique to single-system designs, but are problematic in any health care related research.

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Measurement Issues Berkman and Weissman (1983) point out that most outcome studies are based on behavioral change indicators, and that the majority of social work services in health facilities do not aim for behavioral change in the client. When services are directed toward environmental change, measurement cannot rely on the counting of observable behaviors. While these points are valid, there is an inherent assumption that only measures of observable behaviors are appropriate in single-system designs. On the contrary, the method itself is independent of practice theory or techniques, and recognizes that the target of change may be overt behavior, an internal state (thought or feelings), or the client’s environment. According to Bloom and Fischer (1982), “the nature of the problem should be a major determining factor in deciding which measure to use, and … your ultimate selection of a measure should be a direct reflection of the goals you hope to attain” (p. 221). Thus, depending upon the goals, the practitioner may choose to use behavioral observation, existing records, standardized measures, self-anchored scales, or client logs. The latter three types of measures may be more appropriate for goals involving changes in internal states and attitudes. One might also choose a measure for assessing the qualities of the environment, such as those suggested by Moos (1974). (For further discussion of specific measures, the reader is referred to Bloom and Fischer, 1982.)

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Design Issues The major problems in this area center around baselining and the length of intervention in health care settings. Baselining is a critical feature of single-system research, and involves collecting data on the client’s problem/need before intervention begins, typically during the study and assessment phase of treatment. It can be argued that this type of concurrent baselining is quite difficult in health care settings. For example, crisis situations may demand immediate intervention, and total intervention may be limited to one or two contacts. In these cases, instead of aborting evaluation entirely, the worker could consider reconstructing a baseline from agency records or the memories of the client or others. While this type of baseline may not be as accurate as a concurrent baseline, it may be the one of choice in some situations in health care settings (Bloom & Fischer, 1982). A related problem is the duration of intervention in health care settings; some workers assume that single-system designs are not applicable to short-term or single interventions. As pointed out by Bloom and associates (1979), however, “situations in which workers see clients only one time are in as much need for objective evaluation as any social service” (p. 303). These authors suggest that workers in these situations should be evaluating the intermediate goals in the case, those which are necessary but not sufficient for the final outcome. For example, an intermediate goal in health care might be to find an appropriate Hospice placement for a terminally ill patient. The final outcome goal might be for the patient to resolve his/her issues around dying. In essence, the social worker in health care can evaluate his/her

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contributions to intermediate case goals; follow-up research may be utilized to evaluate final goals.

Case Example The client is a 76 year old Black female with degenerative heart disease. She is an outpatient at the Family Practice Clinic of a University Medical Center, and has a ten year history of multiple emergency room and hospital admissions. Typically admitted with a complaint of chest pain, medical workups rule out any evidence of current myocardial infarctions. The client was referred to the social worker for counseling due to her excessive and inappropriate use of the emergency room; she frequently arrived by ambulance in the middle of the night. Social work assessment revealed verbal focusing on physical complaints to the exclusion of all other topics; this constant complaining had apparently “worn out” the few support systems available to her. The worker hypothesized that medical services were being overutilized as a consequence of social isolation; the ER staff had become her only viable support system. Before beginning intervention, the social worker reconstructed a baseline of ER visits with no medical indication for admission; there were 39 such visits in a four-month period. Based upon her assessment, the worker began her intervention by attempting to reinforce conversation not of a medical nature, encouraging the client to discuss topics that would perpetuate social interaction. The worker allowed the client to focus no more than 10 minutes

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on her somatic complaints before introducing another topic of discussion. The worker then reinforced the client’s conversation in other areas by maximal verbal and non-verbal attending behaviors. When the client reintroduced physical complaints, the worker would ignore them and continue with the conversation that had been interrupted. During the intervention period, the client was seen one hour weekly for five weeks; there were only three ER contacts during this period. An unplanned intervention withdrawal occurred at this time as the worker left for a month’s vacation; records indicated that 23 ER contacts occurred during this period. Upon return from vacation, the worker reintroduced the intervention, and ER contacts dropped to zero for the next four weeks. At this point, the client was introduced to a lunch socialization program. The target behavior remained at zero as this program was integrated into the treatment; after one month, all individual contact was terminated. In this case, the use of a single-system design (A-B-A-B-BC-C) allowed the worker to monitor progress with the client and to modify the intervention when indicated. Examination of the graphed data indicated that implementation of a social reinforcement paradigm to non-somatic conversation did contribute to a reduction of overutilization of medical services.

Conclusions In research designed to evaluate effectiveness of intervention, single-system and group comparison, experimental designs

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have different but complementary roles. In using either design, the social worker must be sure that the design and methodology of the study is appropriate for the particular research question under study. At the same time, it is well known that the average practitioner does not read or utilize published research, and is unlikely to conduct large control group studies. Many of the existing group studies are weak methodologically, and could be improved by specification of interventions and utilization of baseline and repeated measures. Practitioners might find the results of these studies more valuable if these issues were considered. The evaluation of practice in health care is becoming increasingly important, and single-system designs are accessible to practitioners and appropriate for evaluating interventions in single cases. Single-system research can be used to monitor progress with every case, allows the worker to change the intervention if indicated, and highlights variations in effectiveness from case to case. Although the nature of social work practice in health care settings may necessitate some modifications in the “ideal” single-system design, in most cases these will not significantly compromise the utility of the design. With agency support and worker creativity, single-system designs can contribute greatly to effective intervention in the field of health care. It is interesting to note that with few exceptions the studies which have been published since 1979 in the social work literature which address intervention effectiveness in health care settings have either been based on work with outpatients or with patients who have a relatively long length of stay within the hospital or institutional setting. Thus, perhaps some 384

of the issues discussed in employing the single-system design in health care settings are inherent to any kind of research in this setting. The advantage of the single-system design to the worker in health care is that institutional support required for large group designs is not necessary. The worker who views the single-system design as integral to his/her clinical practice has already started to attend to Kane’s concern that “the immediate agenda for social workers is not to prove the problem but demonstrate and test the solution” (1982, p. 316).

Note Reprinted from Social Work in Health Care, Volume 10(1), Fall 1984.

References Berkman, B., & Weissman, L. A. Applied social research. In R. S. Miller & H. Rehr (Eds.). Social work issues in health care. Englewood Cliffs, N.J.: Prentice Hall, 1983. Blackman, D. Κ., Gehle, C., & Pinkston, E. M. Modifying eating habits of the institutionalized elderly. Social Work Research & Abstracts, 1979, 15(3), 18-24. Bloom, M., Butch, P., & Walker, D. Evaluation of single interventions. Journal of Social Service Research, 1979, 2(3), 301-310. Bloom, M., & Fischer, J. Evaluating practice: Guidelines for accountable professionals. Englewood Cliffs, N.J.: Prentice-Hall, 1982. _ Burnell, G. M., & Taylor, P. H. 385

Psychoeducational programs for problems in living. Health and Social Work, 1982, 7(1), 7-13. Casselman, B. On the practitioner’s orientation toward research. Smith College Studies in Social Work, 1972, 42(3), 211-233. Conic, H. R., & Karasu, T. B. Psychotherapy for medically ill patients: Review and critique of controlled studies. Psychosomatics, 1981, 22(4), 285-315. Coulton, C. J. Research on social work in health care: Progress and future directions. In D. Fanshel (Ed.), Future of social work research, Washington, D.C.: NASW, 1980. Dillard, R. G., Auerbach, K. G., & Showalter, A. H. A parent’s program in the intensive care nursery: Its relationship to maternal attitudes and expectations. Social Work in Health Care, 1980, 5(3), 245-251. Eaton, J. W. Symbolic and substantive evaluation research. Administrative Science Quarterly, 1962, 6(4), 421-442. Evans, R. L., & Jaureguy, B. M. Group therapy by phone: A cognitive behavioral program for visually impaired elderly. Social Work in Health Care, 1981, 7(2), 79-90. Johnson, E. M., & Stark, D. E. A group program for cancer patients and their family members in an acute care teaching hospital. Social Work in Health Care, 1980, 5(4), 335-349. Kane, R. A. Lessons for social work from the medical model: A viewpoint for practice. Social Work, 1982, 27(4), 315-321.

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Kirk, S., Osmalov, M. J., & Fischer, J. Social workers’ involvement in research. Social Work, 1976, 27(2), 121-124. Kupst, M. J., Tylke, L., Thomas, L., Mudd, Μ. E., Richardson, C., & Schulman, J. L. Strategies of intervention with families of pediatric leukemia patients: A longitudinal perspective. Social Work in Health Care, 1982, 5(2), 31-47. Levy, R. L., Lodish, D., & Pawlak-Floyd, C. Teaching children to take more responsibility for their own dental treatment. Social Work in Health Care, 1982, 7(3), 69-76. Lindenberg, R. E., & Coulton, C. Planning for posthospital care: A follow-up study. Health and Social Work, 1980, 5(1), 45-50. Mahan, C. Κ., Schreiner, R. L., & Green, M. Bibliotherapy: A tool to help parents mourn their infant’s death. Health and Social Work, 1983, 8(2), 126-132. Moos, R. H. Evaluating treatment environments: A social ecological approach. New York: John Wiley & Sons, 1974. Pendarvis, J. F., & Grinnell, R. M. The use of a rehabilitation team for stroke patients. Social Work in Health Care, 1980, 6(2), 77-85. Rosenblatt, A. The practitioner’s use and evaluation of research. Social Work, 1968, 13(1), 53-59. Ross, J. W., & Scarvalone, S. A. Facilitating the pediatric cancer patient’s return to school. Social Work, 1982, 27(3), 256-261.

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Schinke, S. P., Gilchrist, L. D., & Blythe, B. J. Role of communication in prevention of teenage pregnancy. Health and Social Work, 1980, 5(3), 54-59. Selan, B. H., & Schuenke, S. The late life care program: Helping families cope. Health and Social Work, 1982, 7(3), 192-197. Supiano, K. P., & Peacock, N. L. Discharge planning for residents of a long term care facility. Quality Review Bulletin Special Education. Chicago: JCAH, 1982. West, M., Mcllvaine, R., & Sells, C. J. An interdisciplinary health care setting’s experience with groups for parents of children having specific disabilities. Social Work in Health Care, 1979, 4(3), 287-298.

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Commentary Examples of a growing body of research literature are included in Part 6, where issues of accountability, high-risk screening, patient satisfaction, and changing social work functions are discussed. Although research is not firmly institutionalized in health care social workers’ thinking or in their practice, there is a critical need for studies that move on from anecdotal reports to measure effectiveness, test theories, and expand the profession’s knowledge base (Kane, 1983). To integrate practice and research, it is important for social work practitioners to learn ways to undertake independent studies and to participate in multidisciplinary research endeavors. The contribution of a health care social worker to a team endeavor is reported by Krush (1981), who shows how the facilitating and supporting role of social work can help clients enter a difficult project and ensure their continuing participation for the duration of the study.

References Kane, Rosalie. “Knowledge Development for Social Work Practice in Health,” Social Work in Health Care 8(3), Spring 1983, pp. 55-69. Krush, Anne J. “Social Work Role in Research Studies of Families Having Hereditary Cancer and Pre-Cancer 389

Diagnoses,” Social Work in Health Care, 7(2), Winter, 1981, pp. 39-48.

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Additional Readings Berkman, Barbara. “Psychosocial Problems and Outcome: An External Validity Study,” Health and Social Work 5(3), August 1980, pp. 5-21. Berkman, Barbara Gordon, and Rehr, Helen. “Unanticipated Consequences of the Case-finding System in Hospital Social Service,” Social Work 15(2), April 1970, pp. 63-68. ______ “Social Needs of the Hospitalized Elderly: A Classification,” Social Work 17(4), July 1972, pp. 80-88. ______ “Early Social Service Case Finding for Hospitalized Patients: An Experiment,” Social Service Review 47(2), June 1973, pp. 256-265. Berkman, Barbara, Rehr, Helen, and Rosenberg, Gary. “A Social Work Department Develops and Tests a Screening Mechanism to Identify High Social Risk Situations,” Social Work in Health Care 5(4), Summer 1980, pp. 373-385. Boone, Charlotte, R., Coulton, Claudia, and Keller, Shirley M. “The Impact of Early and Comprehensive Social Work Services on Length of Stay,” Social Work in Health Care 7(1), Fall 1981, pp. 1-9 (see Part 6.3 of this volume). Christ, Winifred. “Factors Delaying Discharge of Psychiatric Patients,” Health and Social Work 9(3), Summer 1984, pp. 178-187.

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Coulton, Claudia J. “A Study of the Person-Environment Fit Among the Chronically 111,” Social Work in Health Care 5(1), Fall 1979, pp. 5-17. Coulton, Claudia J., Dunkle, Ruth E., Goode, Ruth Ann, and MacKintosh, Judith. “Discharge Planning and Decision Making,” Health and Social Work 7(4), November 1982, pp. 253-261. Coulton, Claudia J., Keller, Shirley M., and Boone, Charlotte R. “Predicting Social Workers Expenditure of Time with Patients,” Health and Social Work 10(1), Winter 1985, pp. 35-44. Coulton, Claudia J. “Research and Practice: An Ongoing Relationship,” Health and Social Work 10(4), Fall 1985, pp. 282-291. Peterson, K. Jean. “Psychosocial Adjustment of the Family Caregiver: Home Hemodialysis as an Example,” Social Work in Health Care 10(3), Spring 1985, pp. 15—32. Reinherz, Helen, Grob, MoIIie C., and Berkman, Barbara. “Health Agencies and a School of Social Work: Practice and Research in Partnership,” Health and Social Work 5(1): Winter 1983, pp. 40-47. Rossen, Salie, and Coulton, Claudia J. “Research Agenda for Discharge Planning,” Social Work in Health Care 10(4), Summer 1985, pp. 55-61.

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Part 4 Working with Colleagues

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Introduction Collaboration Social work as practiced in acute or chronic hospitals, clinics, nursing homes, and other settings where it does not provide the institution’s primary service is sometimes referred to as work in a “host” setting. This implies that it carries a “guest” role, a shorthand term for the “host’s” variable and varying understanding, acceptance, and integration of a biopsychosocial perspective in the provision of care. This unique characteristic of the setting means that many different perspectives are brought to bear on how care is provided and on what emphasis and value are placed on the contributions of social work to that care. To take root and flourish, social workers in these settings develop a special set of skills that help them secure a mandate for their functions and work jointly with other professionals and administrators who may have, along a quite wide spectrum, differing values, social perspectives, and priorities. These collaborative skills include the strategies of interpretation, negotiation, marketing, education, and the like. Employing these skills, social workers help other clinical and administrative staff members incorporate an understanding of patients’ psychosocial problems and their stressful impact on recovery and adaptation. Both administrative and line social workers can have an impact on health care services and on other staff serving 394

patients as they represent clients’ interests, assist individuals and groups of clients in voicing special needs, and pursue program changes. Social work advocacy and support for clients may influence programs to include families in planning for patients, to ease visiting restrictions, to increase access to services, or to improve the physical environment of the health facility. These functions require the capability to work jointly with others and mesh efforts to improve the quality of care. Although many health care administrators and professionals of other disciplines look to social workers to join them in their efforts to treat and care for patients, issues of teamwork can become controversial in health care settings because the relative status and power of social work is low. The articles included in this section illustrate different models of collaborative practice. They do not show a single “correct” model, but allow the reader to explore adaptations that may be valuable for application in various contexts and settings. Kane’s seminal article, notable for its primary place in the journal’s first volume and its lasting influence, analyzes the application of team concepts and small group theory to hospital practice. Kane provides a base for review and assessment of many professional assumptions about collaboration, and its pitfalls and potentials for the practitioner. Mailick and Jordon’s article studies the collaborative process in the hospital setting. The authors identify different models of collaboration and suggest that health care social workers develop a repertoire of collaborative approaches to use selectively and differentially.

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Nason’s psychodynamic, structural analysis of the care team as a problem-solving resource expands our knowledge and understanding of the complex dynamics that affect the team’s collaborative work and its ability to serve the patient’s interest.

Teaching Teaching others about the psychosocial component of illness and care requires the acquisition of a body of educational and teaching skills. This teaching takes place in varied ways, along a continuum from informal to formal structures. Much social work teaching about individual psychosocial needs and family dynamics takes place on a day-to-day basis in informal patient planning conferences between social workers and physicians, nurses, and other professional staff. Teaching is thus inextricably intertwined with collaborative activities in ongoing interprofessional planning for patient care. Somewhat more formal teaching takes place at scheduled patient care multidisciplinary rounds, discharge planning meetings, and family conferences, where there is an exchange of expertise among those involved in the patient’s care as they contribute different professional perspectives and emphasize different priorities. As in all educational endeavors, social workers who teach psychosocial content to their colleagues are simultaneously learning from those they teach not only the specific,

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specialized knowledge that informs their practice with clients, but also the similarities and differences in the perspectives and priorities of their colleagues in other professions. They become aware of differences in values, methods, and training and, understanding these, learn to present their own with clarity and conviction. Being an educator has the additional benefit for the teacher of crystallizing and refining the concepts taught to others. During the process of thinking through what and how they teach, through informal as well as formal channels, they formulate and refine ever more clearly the uniqueness of their role, functions, and contribution to patient care and also how their knowledge and understanding can be used by members of other disciplines to enrich their own facets of care. Two articles included here describe formal mechanisms for teaching medical students about the psychosocial components in illness and patient care. Hunsdon and Clarke’s article reports on an elective course that is taught by social workers and provides medical students with a tutored learning experience, a teaching model that can be readily replicated in other settings. Ullmann and Ruchlin’s article reports on an internship program for medical students that educates and sensitizes students to many problems of the elderly, while familiarizing them with services available in the community. As co-directors of the program, the authors, a social worker and an economist, both faculty members of a medical school, provide their own example of interdisciplinary collaboration in education for health care.

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The Interprofessional Team as a Small Group Rosalie A. Kane, DSW At the time of writing Dr. Kane was Assistant Professor, Graduate School of Social Work, University of Utah, Salt Lake City, UT 84112. SUMMARY. Conflicts in interprofessional teamwork may be as much explained by group process considerations as by the interaction of professional roles and statuses. This paper examines the interprofessional team as a small group, using a synthesis of sources from social psychology, social group work, T-group literature, management theory, and health team research. Eight issues are considered in relation to the team as a small group, namely (a) the individual in the group, (b) team size, (c) group norms, (d) democracy, (e) decision making and conflict resolution, (f) communication and structure, (g) leadership, and (h) group harmony and its relationship to group productivity. Human services are increasingly planned, delivered, and evaluated by interprofessional teams; the team is often cited as the ideal mode of service in a complex system in which “no professional is an island” and all are interdependent. Teamwork is deemed necessary to ensure competent, coherent, unfragmented, and comprehensive services to people who need help.

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Too often, interprofessional teams are battlegrounds for rivalrous factions, struggling for power, speaking separate languages, or perhaps not speaking at all to teammates of other professions. Alternately, teams may be divided nations in which each profession conducts its function within its own territory, with communiqués taking the place of real communication and joint decision making. Recently the value of interprofessional teamwork has been questioned by critics who see the team as cumbersome, ceremonious,1 tending to conservatism,2 or an evasion of individual responsibility.3 Viewed another way, the interprofessional team is a small face-to-face group,’ subject to the same laws and tendencies as any primary group. Although the various helping professions have some familiarity with group dynamics, the team is seldom discussed in terms of group phenomena. Yet the professional’s behavior on an interprofessional team is a product of group process as well as the interaction of professional roles and statuses.

Sources for Understanding the Team as a Group Much of the data about groups is applicable to the interprofessional team; however, the synthesizer finds overlapping concepts couched in language distinctive to the background of its originator. Thus terms such as sub-actualized heterogeneity,4 ascribed and achieved authority,5 and functional and substantive rationality6 have each been used in recent articles about interprofessional

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teamwork. This turmoil of terminology from the social psychologist, the sociologist, the social group worker, and the management theorist confuses the reader in search of common themes. A rich resource for understanding the small group is the group dynamics literature. The large volume of laboratory research conducted on the workings of the small group has been compiled by scholars into a fairly coherent body of laws and principles.7- 11 The related work emanating from the T-group movement may also be applied to the interprofessional team.12 The National Training Laboratory sponsored specific study of the interprofessional research team,13,14 reaching insights pertinent to other kinds of teamwork. In the last decade social group work, an applied discipline, has evolved theory more characteristically its own15,16 that touches upon the formation of groups, stages of group development, and the nature of the problem-solving process. This theoretical resource is often neglected in application to the interprofessional team. In the health field, discovery that teams have been dysfunctional has led to the employment of management consultants17, 18, 19 or to detailed examination of teams in action.20,21 Some studies of actual team processes have been undertaken in mental hospitals and comprehensive mental health centers.22,25 These research efforts are difficult because of the multiplicity of variables and perplexities of measurement but are helpful in adding to understanding of the team.

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Yet another source, particularly available to the social worker, is the growing literature describing the hierarchical intraprofessional team within the social work profession.24, 25 Although the hierarchical team’s goals are derived from the values of a single profession, it resembles the interprofessional team in its concern with establishing a harmonious and productive work group. The remainder of the paper assembles data from these diverse sources under eight interrelated topics, namely, (a) the individual in the group, (b) team size, (c) group norms, (d) democracy, (e) decision making and conflict resolution, (f) communication and structure, (g) leadership, and (h) harmony and productivity.

The Individual in the Group Team members are first individuals, then professionals, and even later members of interprofessional teams. Individual characteristics, including age, sex, ethnicity, and geographic origin, may be peripheral to the selection of the team member yet may influence his behavior and the behavior of others toward him.26 Some professions are associated with a particular sex or social class, making it difficult to judge whether the professional or personal attributes most explain behavior. In addition, the individual brings to the team the repertoire of roles he has played in other groups to which he has belonged. Although science is imprecise on the subject of selecting compatible individuals to compose a team, some writers have tried to predict how a given individual might interact with

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specific teams. A study of the selection of mental hospital teams concluded that the personality of the staff member, the formal demands of the position, and the strivings for authority of the individual should be balanced in team selection.5 For example, a psychiatrist with a low need for authority might be combined with a social worker with a high interest in leadership. The authors suggest that application of their rather difficult criteria could result in conflict-free teams. A similar but more cynical conclusion was reached in Rushing’s27 detailed study of mental hospital personnel. Noting that psychiatrists tended to expect “a testing function” from psychologists and a “welfare function” from social workers and that these role definitions were unacceptable to high-caliber professionals, he suggested that the organization might find it preferable to hire the average or mediocre individual. When the goals of a professional role are clearly articulated at a minimal level, a less-competent individual might perform the job adequately and experience more satisfaction.

Size of the Team Most commentators indicate a preference for a rather small team. Referring to the social work team, Brieland, Briggs, and Leuenberger24 propose five or six full-time members as ideal. Luszki13 suggests that the interdisciplinary research team should remain rather small and not attempt to incorporate too many disciplines so that conflicting views may receive expression.

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Research suggests that as the size of a group increases, greater demands are placed on the leader but the group tolerates direction from the leader better, the more active members tend to dominate the group, and the more passive members withdraw from participation. Also, the larger the group, the less intimate is the atmosphere, the more anonymous the actions, the longer it takes to reach decisions, the more acceptable become unresolved differences, the more subgroups form, and the more formalized are the rules and procedures of the group.9 This commonsense catalogue of differences related to increasing size has applications to the interprofessional team. Critics who consider the team too large may be reacting to some properties of large groups such as increased formality and anonymity which lead to diffusion of commitment to and responsibility for actions. On the other hand, all advantages do not rest with the larger group; in the smaller team unresolved differences would be less tolerated, yet differences must be permitted to exist if individual professional perspectives are brought to bear on a problem. Perhaps the team should be just large enough to include individuals with all the relevant skills for problem solving. There is some tendency to window-dress the interprofessional team (particularly if ample funding is available) so that it includes representatives of as many professions as possible.

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Group Norms on the Interprofessional Team Norms are the standards of behavior and belief that a group imposes on its membership. When an individual is caught between groups with conflicting norms, he becomes uncomfortable and moves to resolve the conflict in favor of the group to which his ties are strongest.9 It is unclear whether, in the interests of service, it is preferable for the major loyalty of the team member to lie with the team or with his profession. An excessive attachment to a professional reference group could render the team member inflexible and unresponsive in his work situation, yet excessive team attachment might prevent him from applying the distinctive professional viewpoint that justifies interprofessional teamwork in the first place. Certain norms are probably not conducive to good interprofessional teamwork. Norms against conflict or against praise are both dysfunctional; the former impedes team members from making professional judgments while the latter denies members the support they should derive from the group. Another harmful norm is one that calls for a physician to automatically become team leader. An individual’s adherence to norms is linked to his status in the group, and his status may be associated with his professional affiliation. The more eager an individual is to belong to a group, the more he will conform to group norms.9 Thus the profession aspiring for a place on a team may become a conforming profession. The highest ranking and most secure members of a group are willing to disagree with 404

the group publicly and privately, the lowest ranking members tend to disagree privately and conform in public, and middle-ranking members tend to conform both in public and in private. This rule of group dynamics suggests the value of increasing the sense of security of the lower ranked members of the team. The flexibility of a group is also related to group norms. The less definite outside standards (such as science, religion, or morality) are about a matter, the more free a group is to exact its own standards.9 Perhaps this accounts for the team that is strongly committed to an ideology with little evidence to support the stand. As long as no definite opposing standards exist and as long as the group is cohesive, the team is free to exact demands on its membership. When there is no objective basis for judgment and no group standard either, judgments tend to be unstable, and much more group time is required for interaction.9 It almost seems that the group norms can become a shorthand to group process. The more stable a group’s membership, the more established are its norms, the more attached members are to the group, and the harder it is for the group to shift activities.9 Since the team must be a responsive instrument as well as a smooth-functioning one, frequent turnover of personnel may be helpful in preventing group norms from solidifying. But the newcomer on the team faces difficulties. Although social workers are very aware that the new member of a treatment group will require help and support, often it is assumed that a new member of an interprofessional team can take the place of a former member as if he were an interchangeable part. Such a view ignores the fact that the new member brings his 405

unique individual qualities to the group and that the group has already established norms for behavior that cannot be known to the neophyte. Orientations to the team are neglected as a subject in the literature, yet knowledge of group process suggests that they are important. What of the team with dysfunctional norms? One is reminded of Kurt Lewin’s dictum that it is more feasible to change an entire group than an individual within it.” Perhaps the problem is best handled through team discussion, reeducation, and shared decision to change than through efforts to supervise and influence individual members.

Democracy and Team Processes A troublesome ideology of the interprofessional team, which is at times its pride and at times its nemesis, is the democratic ideal which pervades the literature. Many writers29,30,31 take for granted that the team should be a community of equals, each member possessing a vote, as it were, in the deliberations of the team. The democratic ideal shapes the nature of group process in the team, including decision making and communication, and therefore must be examined. Although the official ideology of many teams minimizes status differences between professions, research indicates that both the patients21 and the team members themselves12 accurately perceive where the power lies in the team hierarchy. Democratic leadership, as opposed to authoritarian or laissez-faire leadership, has been considered the preferred leadership style. In terms of research results’ the advantages

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of the democratic style are durability, ability to pursue a task in the absence of the leader, more satisfaction to members, and possibly better productivity. It is also reported that the more persons associate together on equal terms, the more they share values and norms and come to like each other. A democratic process, although slow and producing few decisions, seems to reassure team members during early phases of group development. Later, the “town meeting” approach becomes unsatisfactory, and members crave clearer role delineation so they can proceed with their work.33 Luszki,13 referring to research teams, insists that at the very least each team member requires explicit recognition of status differences in the hierarchy. Bartlett34 also opts for role clarity in pointing out that one of social work’s tasks on the health team is to “recognize the middle-level status of social work.” Group work theorists35 recognize a struggle around equality as a stage in the development of the small group. It is argued that most groups go through an early period in which power and control are crucial issues, and in which problems of status, ranking, and influence are paramount. This stage ends in a period of intimacy and a feeling of belonging, and from there moves to a stage of differentiation, in which group members are able to appreciate each other’s uniqueness. Perhaps teams that constitute themselves as miniature democracies attempt to short-circuit the natural stages of group development known to social group work theorists. Perhaps, too, many interprofessional teams are in a state of “arrested group development” and never leave the stage of grappling over power and control.

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It is useful to differentiate between political democracy, which implies time-limited delegation of powers, and social democracy, which concerns making judgments on the basis of the merits rather than the status of the speaker.36 The team is not a political democracy, and, ironically, a social democracy should accentuate inequalities. If all have a right to speak, individuals will produce ideas of varying merit. One cannot argue against a team process that facilitates participation according to ability and treats each member with courtesy and respect; the use of democratic slogans, however, often leads to a confusion of team processes with political processes and rights. The ambiguity, and sometimes inaccuracy, of the term democracy as applied to the interprofessional team complicates clear, open communication from the outset; probably the term should be abandoned.

Decision Making Resolution

and

Conflict

In an interprofessional team, several persons may have input into any given decision. A common problem, however, is the absence of any planned process for decision making. In a milieu that glorifies the importance of the group, this deficit may lead to premature decisions based on an apparent rather than a genuine consensus. There is some evidence that a group decision is superior to decisions of individuals working separately, especially if the group receives instruction on how to work toward a consensus.” A group’s decision-making skills can, it seems, 408

be learned and improve with practice. In some instances, however, group decisions may be less accurate or perceptive than those of one person uninfluenced by colleagues. Janis38 coined the term groupthink to designate a phenomenon he noted in policy-making groups at a high governmental level. Characterized by strong norms and a firm bond between members, such groups may become impervious to new insights and fail to question the assumptions of an original policy, even when that policy is not working. Interprofessional teams, too, are subject to groupthink as they struggle to implement programs that do not appear to be meeting service needs. As guidelines for reaching decisions on teams, Rubin and Beck-hard18 suggest that in each instance it must be determined who has the necessary information to make the decision, who must be consulted before the decision is made, and who must be kept informed after the fact. Most analysts would concede that work groups do not require unanimity on decisions, nor do they require participation of the whole group on ail matters. Noting that each member is limited in his decision-making participation by the three factors of time, interest, and competence, Binner36 advocates a procedure by which each team member feels a responsibility to actively express dissenting views. With this understanding, a leader who hears no opposition can safely assume general agreement. A useful rule of thumb holds that the entire team should participate in the decisions that affect the entire group.” These might include formulation of new policies or procedures or the hiring of a new team member. Technical decisions should be made by those with expertise and responsibility for that 409

aspect of the work. To help a team reach wise decisions, a leader might borrow techniques from the social group worker;40 he can help members recognize the issues, stimulate a search for tentative solutions, form subgroups to ensure full participation, and ensure that conclusions are evaluated. The team itself should, of course, have real power to make decisions; teams are hamstrung if they need to refer to an external authority, even in the same organization, for day to-day decisions. A decision-making procedure must take into account a way of managing the inevitable conflicts that will (and should) occur. Northen41 put it well when she stated that conflict and cooperation are part of the same phenomenon. Both are aspects of problem solving, and the group is a problem-solving medium. Much of the literature on the interprofessional team is concerned with decreasing tensions and disagreements to arrive at an integrated group. This emphasis on cooperation may, unfortunately, have obscured the fact that honest disagreement is not only permitted but necessary on the team. From the perspective of social group work Bernstein15 has described conflict and its possible resolutions. Rather than compromise or subjugation of opposition, he calls for forging a new and acceptable synthesis. His catalogue of levels of conflict resolution ranges from physical violence to respect for differences. Although the latter is the preferable way to deal with conflict, many of the intervening patterns such as verbal violence, search for allies, diversionary tactics, and appeal to authority are well known to interprofessional teamworkers.

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It may be argued that the complexities that make the team necessary at all also necessitate role differentiation of members and make conflict inevitable. Eichhorn4 evolved a theoretical framework for this differentiation process which she conceptualized in three stages. First, differences are suppressed, conflict minimized, and teams fail to utilize their full range of problem-solving potential. In the second stage, conflict occurs as individuals identify their own interests and needs. Efforts are made to evolve a new structure to accommodate the differences which lead to the final stage when differences are legitimized and utilized as a resource.

Communication and Structure on the Team Communication, in all its forms, verbal and written, formal and informal, structured and unstructured, is the vehicle through which the team members interact and the work gets done. In a broad sense, the term encompasses the kinds of messages transmitted and received, the persons involved in various communications, the language employed, and the structural arrangements that guide the flow of information and feeling. Ongoing communication is a process requiring a commitment of time and energy. To enhance communication, a good secretarial system, a single record, and physical proximity of offices are all useful. Brieland et al.24 advocate that members of the social work team share a large office with small adjoining rooms available for interviewing. Such an arrangement sacrifices members’ status needs but encourages

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accurate communication. Moreover, mutual observation of each other’s work accentuates the ideal of team responsibility to both team members and clients. It has been suggested that team members should not report upward to professional departments,17 contrary to established practices of professions such as nursing or social work. Although professions may have compelling reasons for retaining a strong tie to a professional department, departmentalization does dilute the team focus. The social work practice of providing supervision for a neophyte by means of a worker outside the team has also been shown to be detrimental to team solidarity.20,21 Elimination of esoteric language also fosters communication. Each professional should be able to express his plans in a straightforward way that is comprehensible to other team colleagues. Lack of trust sometimes underlies the reluctance to part with jargon.42 Certain systems of record keeping43 have been suggested as a format that enables all team members to utilize the same record in language all can understand. These records are likely to be resisted until the various professions are wiling to remove some of the mystique from their practice. Research findings9 indicate that one-way communication, as opposed to mutual communication, is less accurate and engenders lack of confidence; feedback increases accuracy. Centralized communication through a single point produces satisfaction at the center of the group but not at the periphery, permits task efficiency and coordination of efforts, clearly identifies the leader, and diminishes member criticism of the group. With centralized communication error is more likely, 412

and there is less chance to correct mistakes. Both the centralized and decentralized patterns have advantages and disadvantages. Centralized communication helps clarify structure and coordinate the task; it establishes the leader in a way consistent with role clarity for teams that do have a designated leader. Yet without safeguards, a team with centralized communication is prone to miscommunication and error. A solution is to structure centralized channels of communication but build in opportunity for feedback; one analyst recommends that each team designate a team manager through whom information might flow.17 The manager would ensure that communication be mutual and two-way, as well as clear and accurate.

Leadership on the Team Leadership, a complex subject that has been studied extensively,8 is here defined as any conscious act of influence over the behavior of others. A given group, then, includes many members who exercise leadership in addition to the designated leader. In order to influence behavior, a leader must understand human motivation. On the other hand, the leader must also understand the task in which the team is engaged and exercise judgment about proposed actions. Leadership ability in the sense of persuasive interpersonal skills may be worse than no leadership at all of exercised on behalf of an ill-judged cause.44 Leadership is a combination of goal-oriented and interpersonal skills. Research suggests that the leader is followed more faithfully if he satisfies the members’ need for guidance as well as for harmony and acceptance.9 In other

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words, both an intellectual and a social leadership is required for a group, and these two facets are rarely equally well fulfilled by a single individual. Team reformers recognize that automatic physician leadership has not enhanced team processes on medical or psychiatric teams. In reaction, other professions have been thrust into titular leadership without preparation for the task. One group, for example, designated public health nurses as team leaders only to find that they were not prepared to assume that responsibility.45 A better suggestion is to choose the leader, not on the basis of professional affiliation, but his understanding of and skill in utilizing the group process on behalf of team goals. A designated leader handles the group process in such a way as to encourage contributions and leadership of others—this is the role of the suggested team manager. It appears that the leaderless team is a myth, and that it is more accurate that many acts of leadership are performed by members of a group at different times, according to the issues facing the team. The titular leader, or team manager, should be able to facilitate each member’s leadership abilities. Clearly many interprofessional teams are in violation of what is so far known about leadership. Responsibility for team process often rests with the most educated member, who also may carry legal responsibility for the task. Sometimes the team is constituted with the fiction that there will be no leader. But Rittenhouse23 examined leadership on such teams only to find that leadership actually resided in the same person across a variety of tasks. It apparently is insufficient to declare that all members shall be leaders in their own sphere

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unless a manager-leader facilitates a process that encourages that result.

Harmony and Productivity: Task and Process on the Team Much discussion of communication and decision making on the team is predicated on the view that the team will perform its task better in a congenial working environment. Some small-group research does suggest that both the effectiveness and the satisfaction of a group increase when members find their personal goals are met.9 Further, it has been suggested that groups with a high degree of intrateam friendships will be motivated to work harder and be more productive.11 Commentators on the team have tended to support the view that a harmonious team spends less energy on conflict and more on goal-directed activity. Certainly a group must attend to its own processes as well as completion of its tasks,7 but too much attention to group maintenance is counterproductive. Drawing an analogy to the maintenance of a car, some routine servicing makes the car run better and prevents future breakdown, but when the car is constantly being maintained, its effectiveness for transportation is reduced. Berrien44 has developed operational definitions for formal achievement (FA) and group need satisfaction (GNS), suggesting that an optimum balance between FA and GNS produces a homeostasis associated with an effective group. Some indicators of this homeostasis are group cohesiveness, satisfaction with the leader’s interpersonal relationships, 415

satisfaction with the leader’s technical skills, satisfaction with tangible rewards, and member pressure to remain in the group. The data on harmony in relationship to productivity are, unfortunately, somewhat contradictory. Certainly a group that places harmony above its task cannot be effective. Underscoring this point, Bass8 evokes the familiar situation of the meeting that postpones complex issues and tackles simple agenda items only: “Solution of these simple items gives a sense of task accomplishment, although the major success occurred in achieving satisfying interaction.” In harmonious work groups, the danger of groupthink38 is ever present. Groups with this problem are characterized by lack of contingency plans, imperviousness to outside input, and inability to reconsider original premises; instead the members are overly supportive of each other. Remedies to avoid this sterile situation call for leader activity in providing outside experts, playing the devil’s advocate, postponing decisions, and refraining from lending his weight to early solutions. Such leader behaviors are necessarily geared toward goal achievement rather than group need satisfaction. The scant empirical research regarding team morale is inconclusive. One study22 found a high association between good morale and time spent in patient interviews and admission workups. Different findings emerged from the Midway study of intraprofessional teams in public assistance47 which found that high productivity in terms of frequent client contact and home visiting was not associated with job satisfaction. A profile analysis of the productive 416

group indicated that they were young, newly employed, and disinterested in a career in the agency; the authors concluded that such workers are better able to resist group norms toward a leisurely pace.

Discussion A number of interrelated components of group process pertinent to the interprofessional team have been discussed. Although more variables might have been considered, the list is already long enough to create practical problems in reaching conclusions about a team’s process. Choice of meaningful variables is a dilemma for the student of small groups; Golembiewski10 challenged researchers with this problem some years ago: “A considerable volume of future work must be accomplished in two general areas. The first area is the clarification of existing concepts and operations and the determination of the degree of overlap of existing variables allegedly tapping the same or similar phenomena. The second area requires that the variables utilized be pared down to a small number. … If small-group analysis is not to bog down in a morass of variables, research tastes must change.” Analysis of interprofessional teams is at an early stage and might profit from Golembiewski’s caution. Study of the team must include variables of profession and team purpose as well as process elements, and the more the latter can be consolidated, the more readily practical conclusions can be drawn. Currently there is little basis for eliminating variables. The present exercise in examining

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the team as a small group is only a first step. In some ideal future, professional students may be taught to analyze teamwork in its group process dimensions so that they may approach their professional careers with some confidence about what makes teamwork work.

Note Reprinted from Social Work in Health Care, Volume 1(1), Fall 1975.

References 1. Ellwood, Paul. “Can We Afford So Many Rehabilitation Professions?” Journal of Rehabilitation 34 (1968):21-22. 2. Eiduson, Bernice. “Intellectual Inbreeding in the Clinic.” American Journal of Orthopsychiatry 34 (1964):714-21. 3. Rae-Grant, A. F., and Marcuse, Donald. “The Hazards of Teamwork.” American Journal of Orthopsychiatry 38 (1968):4-8. 4. Eichhorn, Suzanne. Becoming: The Actualization of Individual Differences in Five Student Health Teams. The Bronx, N.Y.: institute for Health Team Development, 1973. 5. Bernard, Sydney, and Ishiyama, Toaru. “Authority Conflicts in the Structure of Psychiatric Teams.” Social Work 5 (1960):77-83.

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6. New, Peter Kong-Ming. “An Analysis of the Concept of Teamwork.” Community Mental Health Journal 4 (1968): 326-33. 7. Bales, Robert. Interaction Process Analysis. Cambridge, Mass.: Addison-Wesley Press, 1950. 8. Bass, Bernard. Leadership, Psychology, and Organizational Behavior. New York: Harper & Row, 1960. 9. Berelson, Bernard, and Steiner, Gary. Human Behavior: An Inventory of Scientific Findings. New York: Harcourt, Brace & World, 1964. 10. Golembiewski, Robert. The Small Group. Chicago: University of Chicago Press, 1962. 11. Hare, A. Paul. Handbook of Small Group Research. New York: Free Press of Glencoe, 1962. 12. Odhner, Fred. “Group Dynamics of the Interdisciplinary Team.” American Journal of Occupational Therapy 24 (1970):484-87. 13. Luszki, Margaret. Interdisciplinary Team Research. New York: National Training Laboratories, 1958. 14. Sherif, Muzafer, and Sherif, Carolyn. Interdisciplinary Relationships in the Social Sciences. Chicago: Aldine, 1969. 15. Bernstein, Saul. Explorations in Group Work. Boston: Boston University School of Social Work, 1965.

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16. Vinter, Robert. Readings in Group Work Practice. Ann Arbor: Campus Publications, 1965. 17. Beckhard, Richard. “Organizational Issues in the Team Delivery of Comprehensive Health Care.” Milbank Memorial Fund Quarterly 50 (1972):287-316. 18. Rubin, Irwin, and Beckhard, Richard. “Factors Influencing the Effectiveness of Health Teams.” Milbank Memorial Fund Quarterly 50 (1972):317-35. 19. Wise, Harold; Beckhard, Richard; Rubin, Irwin; and Kyle, Aileen. Making Health Teams Work. Cambridge, Mass.: Ballanger, 1974. 20. Banta, H. David, and Fox, Renie C. “Role Strains of a Health Care Team in a Poverty Community.” Social Science and Medicine 6 (1972):697-722. 21. Silver, George. Family Medical Care. 2nd ed. Cambridge, Mass.: Ballanger, 1974. 22. Dickey, Brenda. “Team Morale, Time Utilization, and Treatment Effectiveness.” Journal of the Fort Logan Mental Health Center 1 (1963): 103-16. 23. Rittenhouse, Joan. “The Application of a Modified Balesean Paradigm to the Study of Psychiatric Team Interaction.” Journal of the Fort Logan Mental Health Center 4 (1967):59-74.

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24. Brieland, Donald; Briggs, Thomas; and Leuenberger, Paul. The Team Model of Social Work Practice. Syracuse: Syracuse University School of Social Work, 1973. 25. Gill, David. “Social Work Teams.” Child Welfare 44 (1965):442-46. 26. Horwitz, John. Team Practice and the Specialist. Springfield, III.: Charles C Thomas, 1970. 27. Rushing, William. The Psychiatric Professions. Chapel Hill: University of North Carolina Press, 1964. 28. Hartford, Margaret. Groups in Social Work. New York: Columbia University Press, 1972. 29. Connery, Maurice. “The Climate of Effective Teamwork.” Journal of Psychiatric Social Work 22 (1953):59-60. 30. Eaton, Joseph. “Social Processes of Professional Team Work.” American Sociological Review 16 (1961):707-13. 31. Whitehouse, Frederick. “Professional Teamwork.” Proceedings of the National Conference on Social Welfare, 1957. 32. Oviatt, Boyd. “Role Convergence in a Therapeutic Community.” Journal of the Fort Logan Mental Health Center 2 (1964): 117-29. 33. Kaplan, David. “The Continuous Workshop: A Forum of Interdisciplinary Research.” Social Work 5 (1960):78-82.

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34. Bartlett, Harriet. Social Work Practice in the Health Field. New York: NASW, 1961. 35. Garland, James; Jones, Hubert; and Kolodony, Ralph. “A Model for Stages of Development in Social Work Groups.” In Explorations in Group Work, edited by Saul Bernstein. Boston: Boston University School of Social Work, 1965. 36. Binner, Paul. “The Team and the Concept of Democracy.” Journal of the Fort Logan Mental Health Center 4 (1967): 115-24. 37. Hall, J. “Decisions, Decisions, Decisions.” Psychology Today 5 (1971):51. 38. Janis, Irving. “Groupthink.” Psychology Today 5 (1971):43. 39. Briggs, Thomas, and Van Voorst, Evert. “Teaching and Learning about Interprofessional Teamwork.” Paper read at the 17th International Congress of Schools of Social Work, June 1974, Addis Ababa, Ethiopia. 40. Lowy, Louis. “Decision-Making and Group Work.” In Explorations in Group Work, edited by Saul Bernstein. Boston: Boston University School of Social Work, 1965. 41. Northen, Helen. Social Work with Groups. New York: Columbia University Press, 1969. 42. Bahn, Anita K. “A Multi-Disciplinary Psychosocial Classification Scheme.” American Journal of Orthopsychiatry 41 (1971):830-35.

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43. Kane, Rosalie. “Look to the Record!” Social Work 19 (1974):412-19. 44. Katz, Daniel, and Kahn, Robert. The Social Psychology of Organizations. New York: John Wiley & Sons, 1966. 45. Cowan, David, and Sbarbaro, John. “Family-Centered Health Care—A Viable Reality.” Medical Care 10 (1972): 164-72. 46. Berrien, F. K. “Homeostasis Theory of Groups.” In Leadership and Interpersonal Behavior, edited by Luigi Petrullo and Bernard Bass. New York: Holt, Rinehart & Winston, 1961. 47. Anderson, C., and Carlson, Thomas. “The Midway Project on Organization and Use of Public Assistance Personnel.” In Manpower Research on Utilization of Baccalaureate Social Workers, edited by Robert Barker and Thomas Briggs. Washington, D.C.: United States Government Printing Office, 1971.

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A Multimodel Approach to Collaborative Practice in Health Settings Mildred D. Mailick, MSW, ACSW Pearl Jordon, MSW, ACSW At the time of writing Ms. Mailick was Assistant Professor, Hunter College School of Social Work, 129 East Seventy-Ninth Street, New York, NY 10021. Ms. Jordon was Associate Director, Department of Social Services, Montefiore Hospital and Medical Center, Bronx, New York. SUMMARY. Health care professionals, under growing pressure to improve the effectiveness of their efforts, are giving increasing attention to interprofessional processes. While many aspects of collaboration have been studied, insufficient attention has been directed to the problem of how the characteristics of the organizational environment in which the collaboration takes place shape its form and process. The authors believe that the environment of the hospital indicates need for a multimodel approach to collaborative practice, and provides clues to its implementation. In the past few years increasing attention has been paid to the concept of collaboration. Collaborative efforts have become a necessity in our complex, technologically sophisticated society. While the need for collaboration was first evident to

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those in the scientific disciplines, those providing human services, especially in health care settings, also are searching for effective methods of coordinating the work of a variety of specialists whose work is interdependent. Problems in achieving interprofessional collaboration in health care settings have been well documented in the social work literature.1 In fact, the theme of collaborative effort has run through the entire history of social work in health settings, accented by the frustrations of social workers who recognized its importance but who were impotent in achieving its goals in the health care system.2 Now, health care institutions are coming under pressure to improve the effectiveness of their procedures and are turning more attention to the collaborative process. This pressure for change comes from numerous sources. First, an increasingly more articulate consumer group aided by the media has begun to raise serious questions about the quality and cost of care that they receive. Second, health professions themselves have become concerned about the fragmented, impersonal care provided to patients and some have sought to remedy the problem by developing collaborative team approaches.3 Third, administrative and managerial personnel have imposed new structures for purposes of the more orderly management of the estimated fifty identifiable occupational groups working together in the modern hospital setting.4 Finally, new laws and government directives that place limitations on third-party reimbursement have spurred the system to an understanding of linkages, redundancies, and intradependency, both for purposes of reasonable compliance and effective and necessary defense. 425

Because of the demand for accountability of bed utilization and the uncertainty of reimbursement if the patient must remain in the hospital beyond the estimated length of stay, the need for early social service planning for the inpatient has become institutionally apparent. The advantage of earlier involvement of social workers has the potential for improving the collàborative process. Social workers in health settings have traditionally viewed coordination of service around discharge as a major function. A broader concept of collaboration now emerges under which such activities as consultation and coordination are subsumed and applied based on a professional assessment of what is needed. The word “collaboration” derives from Latin and means working together. Although collaboration can take many forms, there is an implicit assumption that it is an interpersonal process in which members of the working group contribute to a common product or goal. Also implied is the idea that the collaborative group allows members to contribute from their own expertise to the planning and accomplishment of the task, and that there is joint responsibility for the outcome. These assumptions have never been proved and need empirical validation. Many articles have recently appeared in professional journals about the collaborative process. The earliest of these were exhortative in nature, stressing the importance of collaboration of professionals in health settings.5 More recently, the articles have focused on the process of collaboration. The optimal size of the collaborative group, its decision-making process, means of conflict resolution, and its methods of communication have been studied and reported.6

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Sufficient attention, however, has not been paid to how the characteristics of the organizational environment in which collaboration takes place shape its form and process. The authors propose that a closer look at the environment of the hospital will provide some clues to the development of a multimodel approach to collaborative practice in health settings. Without a detailed analysis the modern general hospital can be seen as a highly complex, open system. Charles Perrow, an organizational theorist, described hospitals as being influenced by three interdependent factors: (a) cultural forces which shape goals; (b) level of technology which provides the means of achieving goals; and (c) organizational structure. He suggested that an analysis of organizational behavior within the hospital needs to take all three of these factors into account.7 Other theorists have focused on the relationship between technology and structure, pointing out that as hospitals have developed more complex technologies and have employed larger numbers of occupational groups, their structure for coordination of service has become ineffective and tenuous. Differences between occupational groups in time perspectives, styles of interpersonal relationships, and methods of organizing work create great problems in interprofessional collaboration.8 Litwak, among others, has suggested that organizations of such complexity require multimodel structures.9 A spectrum of collaborative practices must be developed that range from those characterized by formal, defined, and limited communication in which the participants occupy clearly delineated roles to those with an informal, integrated pattern in which roles and responsibilities are flexibly defined according to the needs of the task. 427

Time Perspective While the modern hospital is multifaceted, its overriding image is a lifesaving, crisis-oriented institution. Many of its formal and informal patterns of organization are arranged so as to respond to the emergencies of lifesaving. While indeed this image of urgency reflects a crucial function of the hospital, crisis represents only a part of the reality of its activities. Much of the medical care provided by hospitals and many of its day-to-day activities are relatively slow moving in tempo. Problems develop when collaborative patterns most effective in times of crisis are projected on noncrisis situations as well.

Authoritative Model It is obvious, for example, that in the operating room a team of professionals working together need collaborative skills. However, because of the urgency of the task, they need the clear direction of one individual. Each member of the work group must have a well-defined role, contribute a high level of expertise on the basis of a limited pattern of communication, and respond to the direction of the surgeon without unnecessary challenges to his authority. The patient, whose collaboration is essential but often ignored, also responds to the crisis of surgery by relinquishment of independent judgments and usually of consciousness. Conflict between members of the work group, if they arise, are likely to be resolved by the surgeon’s fiat.10 This could be called a high expertise, authoritative model of collaboration and is appropriate to the task performed.

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Consensus Model However, there are many quite different episodes played out in hospitals. There are task situations where time constraints are less urgent, where a high level of technology is not continuously applied, and where there is no one central occupational group whose competence is most crucial for the patient’s survival. An example is the care of a chronically ill patient for whom physicians, nurses, rehabilitation counselors, social workers, nutritionists, and others might all make important contributions. For this kind of task, the operating room pattern of collaboration would be quite inappropriate. Planning together for the progressive stages of care of the patient might require a more egalitarian, flexible collaborative pattern which could be called a consensus model. Here the role of the patient is also different and must be considered as part of the collaborative process. The patient’s temporary but nevertheless knowledgeable contributions about himself become an important part of the collaborative process. As Taylor points out, “the patient is given a sense of membership in a team of specialists that are caring for him and attempting to cure him,” and within this context the collaborative group is afforded an opportunity to “capitalize on the patient’s temporary membership in the hospital community.”11 Initially, a formal collaborative meeting may be helpful in the development of a treatment plan based on the contribution and expertise of each member. Involvement of all members of the group is useful in achieving consensus and coordination as well as in motivating participation in the treatment plan. Further collaborative meetings will depend on the needs of

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the task. They may occur at regular planned intervals, irregularly as necessary, or not at all; they may include everyone in the health care group, a subgroup, or a dyad. Attention would need to be paid to the strains that might develop along the way within the group. Part of the collaborative process would be directed toward the ongoing resolution of group conflicts as they arise and interfere with the work goals. The consensus model requires that these conflicts be handled by a problem-solving approach although administrative fiat or judgments might be resorted to temporarily, thus differentially using two models.

Matrix Model A third form of collaboration requires even more informal communication patterns. In situations where the patient’s course of illness and time constraints are very unpredictable, where the technology applied to the patient is not highly significant, and where the roles of the health care team are somewhat interchangeable, collaboration may be relatively continuous and informal. An example of such an informal model would be the care of the acute psychiatric patient in a milieu therapy ward or the management of a chronically ill elderly patient on a medical ward. In this task situation the unique quality of each profession’s expertise is likely to be submerged during the day-to-day activities. Interns or residents, nurses, social workers, psychologists, and psychiatrists all engage directly in a process with the patient and his family as a means of ultimately achieving an individualized health care plan. A matrix-like model of organization involves those members of the work group who possess relevant information or skills and 430

are at hand when needed to respond to patient and family need.12 Because the technology applied to the patient is embedded in all of the events in the patient’s daily life, it is dysfunctional to hold planning meetings of a formal type when day-to-day decisions must be made. Frequent face-to-face but selective interchanges including the patient characterize the collaborative process. Conflict among the staff can either be very destructive to the patient13 or lead to increased understanding through the collaborative process which involves a working through of conflictual or complementary recommendations of staff members. Three different forms of collaboration have been presented that can be viewed as falling along a continuum of time constraints. Other intermediary models of collaboration could be developed by analyzing the task environment of the work group. This would avoid the equally unproductive course of having no collaboration at all or participating in a pattern of collaboration that is not suited to the task to be performed.

Work Culture While there is some danger in stereotyping the professions, each does have a culture of its own. In addition to personal differences (age, sex, economic status, and race), the educational and socialization processes of the groups differ, and there is a consequent potential dissonance in their general orientation.14 Differences in knowledge base, value systems, and methods of communication create barriers to effective collaboration. Again, the issue is that a range of models of collaboration should be considered in the light of an assessment of the work culture. At one end of the

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continuum are situations in which a high level of technology is to be applied, where the expertise of a group of health care professionals is well defined, and where the procedures of treatment are relatively predictable (as in the operating room). This form of collaboration can best allow for the maintenance of each profession’s identification with its own expertise and reference group. While collaboration should encourage responsibility for coordinating care, it is most functional when it allows for differentiation of task and role. The contribution of each member of the collaborative group is important. If any one member does not contribute adequately or if there is poor synchronization of services, the lifesaving process may be in jeopardy. At the other end of the continuum in situations where a low level of technology is applied, where none of the health care professions have exclusive expertise, and where treatment procedures are relatively unpredictable (as in the psychiatric ward or with chronically ill patients), collaboration must, of necessity, be different. The goal of service focuses more on quality of life than on life-saving. An increased identification with the overall goal of service is required of each discipline along with a willingness to overcome work culture barriers. Role and function are in danger of being blurred, and there are strains in the identification with professional reference groups. All members of the “team” share responsibility for carrying out the treatment, and each must step in and out of a variety of roles. This model does not, however, assume that all members of the group have equal or identical knowledge and expertise. Rather, it suggests that as the task boundaries of the work group quickly shift, there needs to be flexibility for one or another member of the staff to step into a required role. This is clearly seen in the following example:

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An ambulatory but terminally ill patient whose cancer of the colon rendered him incontinent of feces was resistive to using disposable diapers. The situation was further complicated by his long history of mental illness, which made working and communicating with him quite difficult. Therefore, when discharge planning to a nursing home was begun, a process was set in motion for the social worker to search for a terminal care facility. The unfeasibility of the plan was soon apparent due to the reluctance of any community resource to accept the patient in his “socially unacceptable” condition. Reassessment clearly indicated the need for further planning. While in prior team meetings sharing of expertise took place, each team member saw the problem of the patient as falling within the realm of another’s expertise. Therefore the social worker took initiative in convening a formal meeting through which a conscious decision was made to prepare the patient more adequately prior to his discharge. The above case illustrates both directly and by implication that unless collaborative intervention occurs, the acute hospital system’s automatic response is a series of catalytic actions that extends from the moment of the patient’s admission until discharge. Each discipline responds within its own island of expertise and initiates procedures without adequate integration. Thus in the case examples, while team conferences were held, critical examination of the overall issues of the patient’s needs was not taken into account. Each team member was isolated by his own perspective, and this prevented development of a total gestalt. It was only when the social worker confronted the group with the fact that the patient was unacceptable for a community facility that there was impetus for effective collaboration to reach a goal, low in

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the hierarchy of technical intervention, high in the hierarchy of quality of life achievements.

Implication for Social Work The mere fact that work groups recognize the need to collaborate does not ensure that they will automatically possess the skills to achieve that goal. Collaboration is seldom taught as a specific concept with its own set of principles in schools of social work. Social work staff in hospital settings tend to respond to the need for collaboration by applying their already learned practice skills and frame of reference. Thus, if they are caseworkers, it is not uncommon for many to find that problems around collaboration are defined in terms of a collaborator’s personality difficulties. For example, in one study of a psychiatric inpatient setting social workers saw their problems of collaboration with the residents as arising from the fact that the latter were new to the service and thus insecure, threatened, and defensive.15 In a more recent study of collaborative techniques favored by social workers in medical settings, similar results were found. An overwhelming number of responses of the social workers centered attention on improving interpersonal relationships with physicians, winning them over or educating them. Very few responses focused on changing structural or organizational arrangements.16 A lack of firm control or understanding of professional function and role in medical settings has added to the ambiguity, role strain, and discomfort of social workers in the hospital setting. They are often unclear about what collaboration requires of them. Without attention to or

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understanding of the organizational environment, they may respond dysfunctionally, either by defining their role too broadly or too narrowly.17 When too broadly perceived, they allow referrals from physicians and nurses to shape their practice. Social workers are often angry, for example, when they receive a request for discharge planning just before the patient must leave the hospital. There is no time in this circumstance for a professionally adequate plan to be developed. The dilemma is that interest in providing service to the patient and the pressures from the physician, hospital administration, and third-party insurance regulations impel the social worker to step into the breach and provide some kind of solution. Frustration and erosion of professional self-worth then become obstacles to collaboration. A narrow definition of role also has dangers. A social worker may have a delimited view of what the professional role is, and steadfastly remain within its boundaries. Rule-governed, inflexible behavior is often the product. This is true not only of the social worker at the direct service level but also of the social work department at the level of administration within the context of the larger institutional setting. If its administration can not successfully collaborate with other administrators and medical chiefs, then the department’s mission will also be unrealistically defined, and service expectations will not be aligned to professional capability and constraint. Thus when “last-minute” referrals are made to the social service department and either arbitrarily accepted or rejected by its workers, the department enters into and perpetuates a crisis response that is costly both professionally and administratively. However, when last-minute referrals are refused as a matter of departmental policy, collaborative assessment at the administrative level

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would lead to a change in procedures. This is illustrated in the following case: A forty-year-old man resisted accepting nursing home placement. Review of the situation indicated that the last-minute referral bypassed involvement not only of the patient but of his physician as well. However, because of administrative backup and clear organizational policy, the worker was able to reverse the process, which resulted in a reassessment by both worker and physician. The patient and his family contributed to a new discharge plan. Since this reassessment lengthened the patient’s hospital stay, the financial cost to the hospital for safeguarding the quality of a patient’s life served as an additional pressure point for enforcing departmental policy for early team planning in the discharge process. Either stepping into the breach by responding to last-minute referrals or inflexibly refusing to perform tasks inappropriately requested is dysfunctional on a direct service and on an administrative level. The first approach creates a situation in which accountability becomes diffused, and poor performance by other professionals or gaps in service are not identified. The system continues to function with the social worker stepping in to patch up what could be corrected. Inflexible rejection of poorly timed referrals also creates problems. The social worker in the hospital setting must be able to act flexibly and firmly, keeping immediate and long-range patient needs and service goals in perspective. Two case examples illustrate this: A social worker was walking through an adolescent outpatient clinic when a physician called him to assist with an 436

adolescent allegedly in need of physical restraint. He briefly explained that it was vital for the patient to be given an injection immediately and, in the absence of more appropriate personnel, requested that the social worker hold the adolescent’s legs. The social worker refused, saying that it was not part of his job to do so. A social worker noted that one patient in a long-term psychiatric hospital was the target of many negative comments because of his wild, matted, and uncut hair. No one would wash and cut it, so the social worker undertook to do so. Each of the social workers was uncomfortable with his decision, but neither had any clear guidelines for analyzing the situation or his response to it. In truth, both cases had ambiguities; and arguments could be made for several actions. Attention to the organizational environment, however, might have been helpful to these social workers or to their supervisors to whom the question was posed, “Did I do the right thing?” In the first case, if the worker had assessed the request in terms of a time perspective and identified the situation as urgent and perhaps a crisis, he would have been advised to step out of role and do whatever he could to help. A subsequent task of the social worker would have been to involve the physician and other staff in a discussion concerning the incident for the purpose of evaluating the situation as a means of instructing for future action in similar cases.

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In the second case, the worker, having identified a noncrisis system problem, would have been well advised to intervene first with the staff rather than the patient. He might have been encouraged to discuss the problem of the patient with his collaborative work group so that the patient’s need would be met by an appropriate member of the staff. It is possible that in so doing, staff attitudes would surface and could be handled, gaps in service identified, or communications clarified. It would still have been possible in the absence of a solution for the worker to wash the patient’s hair if out of a sound diagnostic sense the task would serve the patient’s best interest. The worker would have had to be prepared then to deal with the consequences of a range of staff response of apathy, derision, hostility, or even retaliation. In either case professional time and environmental assessments were essential to an immediate and longer perspective treatment plan. In summary, the classic importance of assessment in social work tradition is emphasized in the collaborative process. The nature of the assessment, however, is complex. It requires an ecological approach encompassing the organizational context, the nature of the task, the time perspective, and professional orientation of the collaborative group. This calls for the development of a repertoire of collaborative approaches to be used selectively in effectively meeting patient, organizational, and professional goals.

Note Reprinted from Social Work in Health Care, Volume 2(4), Summer 1977.

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References 1. Helen Rehr, ed., Medicine and Social Work: An Exploration in Interprofessionalism (New York: Prodist, 1974); Rosalie A. Kane, “The Interprofessional Team as a Small Group,” Social Work in Health Care I no. 1 (Fall 1975): 19-32. 2. Harriet M. Bartlett, “Ida Cannon: Pioneer in Medical Social Work,” Social Service Review 49, no. 2 (June 1975):208-29. 3. Edmund Pellegrino, “What’s Wrong with Nurse-Physician Relationships in Today’s Hospitals?” Hospitals, Journal of the American Medical Association 40 (December 16, 1966):70-80. 4. Ruth Ravich, Helen Rehr, and Charles Goodrich. “Hospital Ombudsman Smooths the Flow of Services and Communication,” Hospitals, Journal of the American Medical Association 43 (March 1, 1969). 5. Bess Dana, “Social Work in the University Medical Center,” Johns Hopkins Medical Journal 24 (May 1969). 6. Donald Brieland, Paul Briggs, and Paul Luenberger, The Team Model in Social Work Practice (Syracuse: Syracuse University School of Social Work, 1973); Naomi Brill, Teamwork: Working Together in the Human Services (Philadelphia: J.B. Lippincott Co. 1976); Kane, “The Interprofessional Team”; Sydney Bernard and Toaru Ishiyama, “Authority Conflicts in the Structure of Psychiatric Teams,” Social Work 5, no. 3 (July 1960):77-83.

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7. Charles Perrow, “Hospitals: Technology, Structure, and Goals,” in Handbook of Organizations, ed. J. J. March (Chicago: Rand McNally, 1965), pp. 910-71. 8. Paul Lawrence and Jay Lorsch, Organization and Environment (Boston: Harvard Business School, 1967). 9. Eugene Litwak, “Models of Bureaucracy Which Permit Conflict,” American Journal of Sociology 67 (July 1961): 177-84. 10. Robert A. Wilson, “Teamwork in the Operating Room,” in Patients, Physicians, and Illness, ed. E. Gartley Jaco (New York: Free Press, 1956), pp. 491-501. 11. Carol Taylor, In Horizontal Orbit, Hospitals and Cult of Efficiency (New York: Holt, Rinehart & Winston, 1970), p. 96. 12. Keith Davis, Human Behavioral Work (New York: McGraw-Hill, 1973). 1313. Alfred H. Stanton and Morris S. Schwartz, The Mental Hospital (New York: Basic Books, 1954). 14. Ibid. 15. David H. Banta and Renee C. Fox, “Role Strains of a Health Care Team in a Poverty Community,” Social Science and Medicine 6 (1972):697-722; Quentin Rae-Grant and Donald Marcuse, “The Hazards of Teamwork,” American Journal of Orthopsychiatry 38 (January 1968):4-8.

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16. William A. Rushing, The Psychiatric Professions, Power, Conflict, and Adaptation in a Psychiatric Hospital Staff (Chapel Hill: University of North Carolina Press, 1964), p. 67. 17. Jules Feiman et al., “The Process of Collaboration: A Dual Perspective” (Master’s thesis, Hunter College School of Social Work, City University of New York, June 1975).

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Diagnosing Team

the

Hospital

Frances Nason, MSW, LICSW At the time of writing Frances Nason was Director, Department of Social Services, Emerson Hospital, Concord, MA 01742. This article was presented as the first Hyman J. Weiner Memorial Lecture at the Annual Meeting of the Society for Hospital Social Work Directors (American Hospital Association), Minneapolis, MN, April 27, 1983. SUMMARY. The process of teaming offers an expanded resource for diagnosis and problem solving. The interactions of team members will reflect both system and patient care problems. But those interactions also tend to pull the team apart. In order to survive, the team needs to understand the ways in which its conflicts reflect unresolved contradictions and paradoxes in society, in the patient, and in the health care system. Institutional support for health care teams will depend on the extent to which those in power come to rely on a collaborative process to fulfill their own objectives. As health care increases in complexity, requiring the knowledge and skills of many different disciplines, the need for effective and efficient systems of communication and problem solving becomes increasingly important. Over the past two decades one approach to this problem has been the development of interdisciplinary health care teams (Beckhard,

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1972; Horowitz, 1970; Parker, 1972; Eichorn, 1974). As with many new treatments and new approaches to medical care, the hope that interdisciplinary teams would be a cure for fragmented services soared to a zenith in the mid-seventies (Beloff and Korper, 1972; Wise, 1972; Wise, Beckhard, Rubin, and Kyte, 1974) and is now pushing the boundaries of disillusionment (Kane, 1982). In light of this experience, it is useful to ask, do health care teams work, and if so when and in what ways?

Background The label “team” has been applied to a number of different work groups ranging from the operating room team, where the surgeon assumes authority and others carry out assigned tasks, to large rehabilitation services made up of many providers from a number of disciplines who work together in various combinations for any one patient but who do not consistently share a collaborative practice (Siller, 1971). Decision making styles have ranged from authoritarian leadership to consensus and matrix models (Mailick and Jordon, 1977). In contrast to the surgical model with its specific team leader, a matrix model allows substantial overlap in roles with different members of the team assuming prominence in decision making and patient care according to the importance of their skills for the task at hand. What has distinguished the interdisciplinary model of the past two decades is its allowance for the independence and equality of the contributing professions and its pressure for a consensus about group goals and priorities. Each profession is expected to contribute its own knowledge and skills directly

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to the decision making process. The information is assessed according to its applicability to patient needs rather than on the basis of professional hierarchy. In addition to task-oriented functions, the team also requires group maintenance functions that include regularly sheltered time and space, a shared language, and agreed-upon methods for resolving conflict, making decisions, and allocating responsibility (Kindig, 1975; Rubin and Beckhard, 1972; Szasz, 1979). Although much thought and energy went into developing tools and training programs to maximize the efficiency of health care teams (Baldwin, Royer, and Edinburg, 1976; Plovnick, Fry, and Rubin, 1977; Rubin, Plovnick, and Fry, 1975), most line and administrative teams today do not have the advantage of either team training or consultation. As a result, most function in part by improvising, using a variety of decision making structures depending upon the urgency of the problem, the power base of the primary provider, and the priorities of the parent institution (Banta and Fox, 1972; Bates, 1975; Lee, 1980; Lowe and Herranen, 1978). Unfortunately, such an operating method is not sufficient to ensure effective performance in the face of the typical impediments of daily practice. One of the most serious obstacles is the dualistic split in traditional medicine between psyche and soma and the consequent division of health services into technical versus caring professions. Professional competition and widely held assumptions of a hierarchy of technology, urgency, and importance have complicated the collaborative process. The goals and priorities of the government and of the institutions that teams are affiliated with also reflect a 444

technical bias that does not usually support a team health care focus. To the degree that an institution emphasizes medical care only, a truly interdisciplinary process will be inhibited. Since few institutions have been willing to commit time and resources for training providers to negotiate more effectively with each other, there are times when the team is only an illusion held by the more powerless providers who are dependent upon an integrated practice. Those who have the power often remain uncommitted to collaboration or to a mutual réévaluation of goals and priorities. Given these institutional barriers to interdisciplinary health teams, it is important to weigh the pros and cons of individual versus group decision making. For if teams offer no advantages in achieving the goals implicit in health care, why carry on the struggle? A solo provider can most efficiently delineate the issues he wants to be involved with and decide on his own approach to the problem. When he knows what he wants to do, he has the gratification of being sure the patient gets only the treatment he deems necessary, putting his energy into patients he knows how to treat, and taking charge of the entire process. Teams, on the other hand, are cumbersome. It takes time to let everyone know what is going on. Many team members have their own agendas that may not seem relevant to the problem at hand. Negotiation is hard work; frequently leadership is abandoned and providers bog down because they get overwhelmed both by the range of information that has to be taken into account and by the struggles for control. Obviously if the health care needs of patients were clear cut and did not require skills beyond those of the initial provider, solo practice would be the treatment of choice.

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On the other hand, a team has the potential of gathering in a wider knowledge base, of making decisions that take into account what other providers can realistically do, and of extracting a commitment from each provider who will be participating in the care plan. In contrast to the solo provider who, when confronted with conflicting or overwhelming information, selects mainly those areas that she or he knows how to handle, passing over or referring away patients who are too difficult or situations that are too complicated, a team brings together a range of talents, interests, and coping styles and does not permit the extrusion of less interesting or manageable problems. Thus, even as the range of problems to be dealt with can determine who makes up a team, the disciplines included on the team will also determine who is cared for and the nature of the problems that are perceived and addressed. But there is an even more important reason for putting up with—and even encouraging—teams in a health care setting. By their very struggles and internal conflicts, teams are capable of defining with striking clarity the important issues at work in their patients, and sometimes in the institutions and communities with which they are allied. To illustrate how this works, and to show how the reflected issues change as the team moves farther from the patient and closer to the administrative nucleus of an institution, I would like to look at a ten-year experience in a team-structured primary care practice. Then, by referring to some of the philosophical and empirical team literature, I hope to delineate further both the problems of collaborative practice and some management approaches to these difficulties.

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The Experience of a Team Structured Practice In BIAC, the primary care program at Beth Israel Hospital in Boston, health care providers have used a model of team decision making on both a service and administrative level since the inception of this program in 1972 (Lee, 1980; Nason and Dclbanco, 1976; Rabkin, 1975; Sapienza and Nason, 1981). At that time, BIAC (Beth Israel Ambulatory Care Center) was one of a handful of experimental programs in the country, dedicated to developing a comprehensive, one-class system of care for the indigent populations that turned for help to the hospital based general medical clinics (Bernarducci, Delbanco, and Rabkin, 1975; Delbanco and Parker, 1978). The practice currently employs a staffing complement of 110 health care providers divided into one administrative and four health care teams. The administrative team includes the medical director, administrator, head nurse, and chief social worker. This team has specific responsibility for program planning for the entire unit; each member of this team also has responsibility for the professional performance of his or her own discipline. (See Figure 1.) Thus each of the line staff has two support structures: an interdisciplinary work group that shares a collaborative practice and a professional group of peers that meets regularly to develop programs, increase skill levels, and solve problems in their areas of specialty. Each of the four line teams has an equivalent full time staffing ratio of two physicians, a nurse practitioner, a social worker, a health assistant, and a secretary. In addition, each two teams share a resource specialist, a nutritionist, and a 447

half-time psychiatrist. All staff are full time with the exception of physicians, who carry between two and five patient care sessions and spend the rest of their time teaching and doing research. Medical residents and fellows complete the physician full time complement. (See Figure 2.) BIAC cares for approximately 5,000 patients with 22,400 visits annually on a fee-for-service basis. The patients are 25 percent Medicaid, 32 percent Medicare, 29 percent Blue Cross/Blue Shield, and 16 percent self-paying. They range in age from 16 to 99, with 43 percent under 40, 27 percent between 40 and 60, and 30 percent over 60. They represent a varied ethnic and economic cross-section, but most are poor and many are quite sick. Patients enter the system through initial contact with a physician or nurse. From this point of entry all services are provided only by members of the specific health care team that works with their primary provider. In addition to the full range of medical care, the unit also offers extensive mental health services, including evaluation, crisis intervention, and short and long term individual and family therapy (Lee, 1980; Nason and Delbanco, 1976; Schniewind, 1977). Thirteen percent of patient visits to BIAC are to mental health providers; social workers or psychiatrists. Beth Israel Hospital has a longstanding commitment to excellent

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FIGURE 1.

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FIGURE 2. and compassionate care, and many members of its board of directors and families of its physician staff use the inpatient (but not the outpatient) facilities. The hospital is affiliated with Harvard Medical School and has both medical student and residency training programs. Harvard does not have schools of nursing, social work, or other allied health 450

professions. Social work and nursing interns come from other schools that have no specific relationship with the hospital. BIAC is one of a few ambulatory services in the hospital that have committed themselves to an interdisciplinary practice model. Although the administrative structure of BIAC is based on a team model, the administrative structure of the hospital is based on a physician-administrator dyad. In this setting, there are some important differences in the ways that the line and administrative teams work. The line teams vary significantly in their style of leadership and the nature of referrals, but in general there is a consensus about the appropriate role of each discipline and a willingness to collaborate on diagnosis and treatment plans. By choice, role definitions are flexible, with interests of providers and existing relationships with patients taken into consideration in the care plan. Established weekly team meetings are regularly attended. Decision making generally varies between a consensus and a matrix model. The most significant change that has occurred over time is an increased recognition of psychosocial issues on the patients’ problem lists and the acknowledgment by physicians of the major role played by emotional disturbance in patients’ symptoms and illness. This is in keeping with recent studies that document the high percentage of actual mental health problems in primary care practices (Gardner, 1970; Lipowsky, 1975; Tessler, Mechanic, and Dimond, 1976). Difficult patients get handled effectively and seldom split the system. Most patients are seen by one or at most two providers, with other professions offering mainly consultation, but certain complicated and difficult patients may require direct care by the entire team.

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The administrative team, by contrast, has had more difficulty agreeing about its goals and priorities. Although decision making is in theory by consensus, most important program and resource allocations are determined by the medical director. Turf issues are more prominent, and professional priorities of all disciplines at times override patient care issues. This has been particularly true when resources are limited. Why should this be so? Unless we assume that those who gravitate toward administration are naturally more competitive, egotistical, and biased than other care providers, it is useful to inquire whether there are particular forces acting on the administrative team that threaten its effective functioning from the outset. Since the administrative team has a dual role—effective administration of a health care program and the maintenance of professional standards and staff development—there are times when the team functions as an interdisciplinary planning group for service programs, and there are other times when it becomes a negotiating forum for competing professional interests. The team can shift with disconcerting swiftness, sometimes imperceptibly, from one role to the other. Sometimes both activities go on simultaneously. Effective negotiation, of course, requires equal power among the participants—something beyond the reach of nurses and social workers in a hospital setting. As the program has grown the BIAC administrative team no longer shares a clinical practice. The team has become more closely allied with the hospital administrative structure, partaking of the ambiguous and contradictory service, research, and teaching goals of a tripartite academic health science center (Weisbard, Lawrence, and Charns, 1978). The 452

academic establishment itself focuses primarily on medical education. Although the hospital administrative structure recognizes professional management roles, it holds only the medical director and the administrator, not the administrative team, responsible for the program as a whole. Reimbursement structures also reinforce a medical model. In an acute care hospital with a low reimbursing ambulatory practice, the fiscal departments of the hospital also exert pressure in favor of medical rather than health care. Society itself is again questioning whether it can afford human services. To understand why line and administrative teams differ in their ability to function cooperatively, it is useful to look at the line team’s process of problem solving. As has been suggested elsewhere, the tensions in a patient care team have the potential of being used as a diagnostic tool (Nason, 1981). There will be times when the issues that a patient struggles with belong mainly to the patient but get played out between team members. An example is the borderline patient who needs to treat some providers as all good and others as all bad. This patient consequently shares contradictory and inflammatory information with different members of the team. There will be other times, however, when professionals exercise their competitiveness within the arena of the patient’s specific vulnerabilities. This same borderline patient’s yearning for nurturing and rage at dependency will make any care plan a difficult balance between limit setting and permitted regression in the service of mastery. Struggles for recognition between a first year resident and a staff social worker may accentuate the difficulty of collaborating and undermine an effective and containing treatment process. Frustrated team members may decide that the patient is splitting; they may fail 453

to recognize their own use of the patient as a pawn in an interprofessional power game. The team allows individual members the option of part-object identification, and the team process brings together all the parts. If is not longer possible to unconsciously ignore or extrude patient issues that are in conflict. In the same way that transference and countertransference phenomena allow a therapist to understand the complexity of a patient’s early and repressed traumas, the creative tension of a team’s problem solving process actually parallels the contradictions and paradoxes of a patient’s life situation. Now, when we find even more instances of frustration, anger, and unproductive argument in an administrative team, we might suspect that it too is mirroring issues that each of its members only partly understands. From this point of view it is easy to see the administrative team capturing the dynamics of professional competition and conflicts generated by an economy of scarcity. To the degree to which the team can establish its own priorities and work to integrate patient needs with the institution’s need for fiscal solvency and each profession’s need for autonomy, the conflicts will be an inevitable part of a creative problem solving process. To the degree that community and institutional power structures are beyond the capacity of team members to solve, individually or collectively, the interdisciplinary process will be in jeopardy.

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A Proposed Hierarchy of Systems By recognizing that the team captures both the dynamics of the patient and the dynamics of the health care system, we can begin to sketch a hierarchy of interdependent variables. Effective diagnosis requires an awareness of each of the potential areas of conflict in order to differentiate what belongs to the system, to the provider, and to the patient respectively—the rough equivalent of reality, countertransference, and transference phenomena. To the degree that the system itself is in conflict, team tension may reflect interprofessional biases rather than patient issues. Figure 3 represents the hierarchy of issues that can be captured by the team’s tension. The tension stemming from the patient’s conflicts include: • –intrapsychic ambivalence or splitting (Balint, 1965; Kernberg, 1966), • –psychosomatic variables (Engel, 1980), • –interpersonal discord (Minuchin, 1974), and • –cultural and socioeconomic barriers to health (Fuchs, 1974; Zola, 1979). The tensions outside the area of patient distress include: • –goal and role conflict (Wise et al., 1974; Rubin and Beckhard, 1972; Plovnick et al., 1977), • –professional priorities that are not relevant to patient care (Dana and Sheps, 1968; Gamer, 1979; Gartner, 1975), • –contradictory institutional values (Hastings and Crispell, 1980; Weisbard et al., 1978), 455

• –breakdown between community agencies and community services (Wilson, 1981), and/or • –ambiguities and contradictions in societal values and economic priorities.

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FIGURE 3. Delineating the nature of the conflict that is being picked up by the team will have implications for treatment and management approaches. (See Figure 4.) In exploring this further it may be useful to look first at the ways in which team tension can clarify the patient’s issues and then at the ways in which it will clarify professional and institutional issues. Often, both sets of issues will occur at the same time. The critical point is that key issues not only will be observed but will be articulated in their extremes by different members of the team. The process of clarification and negotiation can allow a reworking of the specific dynamics as they apply to the current situation and will have the potential to permit more effective and appropriate problem solving.

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FIGURE 4.

Patient Issues Psychosomatic Reactions Although much has been known and documented about the psychosomatic nature of disease (Arthur, 1970; Engel, 1977; Rahe, Meyer, Smith, Kjaer, and Holmes, 1964; Parker, Benjamin, and Fitzgerald, 1969), the knowledge base that health professionals bring to bear on the problem has really developed out of western culture’s traditional mind/body split. Efforts to integrate the psychological and physiological components of care are still based on a cause-effect sequence of medical or psychological

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interventions. Recent advances in stress reduction techniques and biofeedback attempt to bridge the gulf, but the team inevitably captures the limitations and confusions of the traditional perspective. The exquisite vulnerability of those patients whose bodies speak their distress and whose advanced physical deterioration leaves no chance to master a physical or psychological trauma can readily cause splitting and distrust between team members. A support group formed for men with chronic obstructive pulmonary disease experienced remarkable success. The group of six men, all of whom had such severe disease that they were expected to die at any point, met on a bimonthly basis to share their depression, discomfort, and efforts at coping. All had lost one or both parents early in childhood, were counterdependent in their personality make-up, and bitter about the emasculating effects of their disease. Two years into the group, the wife of one of the men died of an equally progressive and devastating illness. Her husband became extremely depressed and started to develop increased symptoms of pulmonary failure. Another member of the group who had lost both of his parents before the age of four responded by saying, “At least you know there is someone up there praying for you.” This second patient had been very ambivalent about whether the struggle to keep going was worth it. Within two weeks he was back in the hospital and within another month both men had died of their disease. The best efforts of therapists and physicians had not been sufficient to counter the deterioration that followed the trauma of actual and symbolic loss. The physician on the team raised the possibility that it might have been the group that had killed them. The social worker feared that he was right inasmuch as emotional vulnerability has major consequences 460

with this population. At the same time, it was also clear that the group had provided the support that may have helped the men to survive for as long as they had. It was hard for both providers to accept the psychosomatic reality. When the emotional pain and physical vulnerability were great enough, no one, group, social worker, or physician, could stop the downhill course. Omnipotence has never been an attribute of a professional degree, but the wish to cure is so strong for most professionals that there is always the danger of blaming each other when things go wrong. Each profession has its own concept of “cure”; for the physician it is physical survival, for the social worker it is the capacity to bear affects. The recognition of a patient’s physical vulnerability to psychic stress and his or her use of bodily symptoms to express psychic pain can keep a team sensitive to the very complicated nature of health care. It takes experience and empathy, not only for each other’s capabilities, but also for each other’s limitations, for a team to appreciate the ways in which each profession must deal with the irremediable. Intrapsychic Issues Much has been written about borderline splitting (Groves, 1978). What becomes clear in the process of team care is that all patients share different parts of their feelings with different providers. Some of this comes from role expectations, some from personality styles, and some from the patient’s own need to explore ambivalent feelings first in one direction and then in another. The team that appreciates this phenomenon has the

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capacity to understand and support its patients in a much greater depth than does a solo provider. Interpersonal Issues It is often hard for the same health care provider to identify with an elderly, somewhat senile patient who is being asked to leave his daughter’s home to enter a nursing home, and simultaneously with the daughter who has been caring for her difficult father at the same time that she is coping with the rebellion and acting out of her adolescent son. Different members of the team are in a position to identify with and explore the meaning of specific decisions for patients and their families. The team’s tension will capture the anguish of the human situation. At times the team can bring together resources that will allow the family to do the impossible and at other times the team, through its own process of conflict negotiation, can help a family reach the least destructive conclusion. With an appreciation of the process, team members can support each other, the patient, and the family, sometimes as a team and sometimes by using a planned therapist and administrator split. What is essential, however, is the recognition that the significant others in a patient’s life have to be taken into account (Kress and Nason, 1976). Not only will the family’s well-being be affected by the patient’s problems but the family issues will also be reflected in the patient’s symptomatology. Socioeconomic Issues We know that both culture and economics play a role in the patient’s health status and presentation of symptoms

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(Zborowski, 1952; Fuchs, 1974). Different members of the team can appreciate the cultural meaning of illness, and the ones who understand it the best may not always be filling the traditional professional roles. There are times when non-professional team members have extremely significant contributions to make. In some neighborhood health settings this has even been formalized by the use of indigenous workers (Wise, 1972; Simpson, 1969; Torrey, Smith, and Wise, 1973). The tasks of sharing language and theory and overcoming professional hierarchies are even more complex in this situation (Parker, 1972; Wise, 1972). The health care setting often duplicates the power base and prejudices of society, and the tension between team members of different socioeconomic and cultural backgrounds will mirror the anger, hurt, and frustration of discriminated-against and vulnerable patients.

Provider Issues Goal and Role Conflict Not all the divisive forces affecting a health care team come from the patient. The providers who make up the team represent a variety of skills and perspectives. Although they assume that they understand the reasons for working together, they often have not clarified their shared or unshared objectives. Instead they project their own personal and professional interests and goals onto the team. Although tension and discord will often be experienced as a reflection of incompatible personality styles, these feelings

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usually are symptoms of disagreements about what to do, who should do it, and how it should be done. Rubin, Plovnick, and Fry in their program for health team development (1975) have suggested that there is an actual hierarchy of decision making difficulties. Goal conflict will cause role conflict. Role conflict will play itself out in arguments about procedures. Tensions in all these areas will make people feel bad about each other. They suggest that tension any place in the system usually reflects unresolved goal conflicts. With some effort and willingness to work at it, goals and roles can usually be clarified. If priorities can be agreed upon as well, the rest of the decisions will usually fall into place and team members can work together. It is useful to sort out the demands from other sources that affect each member’s expectations of himself and the program (Plovnick et al., 1977). For example, in a teaching hospital the physician is expected not only to care for patients but also to teach and to do research. An administrator is expected to find a way to make the clinic fiscally viable. The nurse and social workers are expected to be patient advocates and develop their own professional autonomy. Consequently the physician will want to shelter time for research and develop a medical residency training program, while the social worker is interested in developing a mental health clinic and the nurse wants to establish a patient education program. Until the members acknowledge which difficulties are internal, stemming from their values and attitudes, and which are external, such as publish-or-perish demands from the chief of medicine or fiscal solvency demands from the hospital administration, the team cannot deal effectively with its problems. Disagreements that are internal can be 464

negotiated within the term; disagreements that are a reflection of institutional priorities require group efforts at system changes, not interprofessional blaming and name calling. Professional Priorities and Biases Professional identification can also create difficulties. The wish to increase responsibility and authority often leads to unnecessary fights for ownership of the patient. Clausen, Gerard, and Wright (1980) suggest that the hierarchy of professionalism can be equalized by focusing on the task to be done rather than the professional who will perform the task. It is often easier to decide if a patient needs doctoring or counseling first if you are not evaluating the societal importance of the role of doctor versus the role of the nutritionist, nurse, or social worker. Professional biases complicate the picture in other ways. To the extent to which each professional assumes that his or her knowledge base cannot be understood by other professionals and that team members cannot help in decision making, that professional will use the issue of confidentiality as a barrier to collaboration. Identification with the team can extend the area of privileged communication and can be presented to the patient as a normal part of practice. The commitment of social workers to patient advocacy will at times make it hard for them to identify with the needs of the institution and of other health providers (Epstein, 1970). Unless social workers are as accountable for their fiscal viability as the administration, their advocacy for patients who lack reimbursement mechanisms may fail to accord

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fiscal reality an equal place with social idealism. There are times when patient needs come first, but there are also times when team maintenance functions take precedence. Splitting is too easy a way out. There will be a tendency for each profession to want to influence the objectives of the program to permit the expansion of its own professional role. This is an understandable and inevitable process, but it must be understood as having little to do with patient needs.

Institutional Practices Beyond professional issues there are institutional practices. The consonance or dissonance between the team goals and those of the parent institution will have significant impact on the degree to which team members can act in response to their own priorities and their patients’ needs. When these goals diverge significantly, teams members will often find themselves trapped. The administrative structure will enhance or inhibit the ability of the program to solve its problems (Plovnick, Fry, and Rubin, 1977). In the BIAC model, the administrative team paralleled the service team and provided support and reinforcement for their collaborative practice. The hospital administration, however, had a somewhat different set of priorities, in this case acute medical care and a strong affiliation with the medical school. Because the management structure reinforced an authoritarian and medical model with the physician designated as team leader, rather than a matrix health care model, the concept of teaming was often more of an illusion when the toughest decisions about 466

staff cuts, space allocation, and program development were on the agenda. The tensions and disruptions can be understood if we look at where an administrative team fits into the hierarchy of interacting variables. (See Figure 5.) In contrast to a line team that most clearly mirrors the issues of the patient and the professions, an administrative team will primarily reflect the issues of the institution and of the health care providers themselves. The patient’s needs will be a less direct influence. The definition of community will vary depending upon whether the institution is a teaching hospital or a community hospital. Clearly the conflicts most frequently captured by the administrative team are those involving the financial viability of the institution and the power base of the community and the professions. In a teaching hospital, the academic institution that the hospital is affiliated with becomes part of the community pressure. This may well strengthen professional rivalries unless the academic setting itself has been able to evolve a collaborative process of problem solving. In contrast to a line team that is closely affiliated with patient care, the administrative team can become rather isolated from the original reason for its existence—the sick patient. When the patients cared for are important members of the community, the issues of patient need will be reinterpreted through the community board. When the patients represent the disenfranchised members of society, their needs will be represented only by their health care providers. It becomes clear that the values and power base of an administrative team are very much subject to influences outside of the direct care continuum.

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Societal Restrictions Finally, social and economic restrictions form the last set of major influences on team functioning (Mechanic, 1979). When interagency referrals fail to provide expected services for patients, providers

FIGURE 5.

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recognize a need for networking, or the cultivation of interagency teams. Interagency teaming is similar to interdisciplinary teaming. There has to be a joint clarification of goals and objectives and a shared understanding of which problems are internal (e.g., values and attitudes of the agency itself) and which are external (e.g., restricted funding and limited manpower). External problems require external solutions: they cannot all be resolved by the team attempting to allocate resources or make patient care decisions. When social policy decisions severely restrict options for care, the effect will be experienced not only by individual members of society but also by the public and private sector agencies that deal with that particular population. Deinstitutionalization, for example, has led to excessive demands on soup kitchens, shelters for the homeless, hospital emergency rooms, and even state departments of corrections. Both line and administrative teams bear the impact of society’s unsuccessful resolution of economic dilemmas. At these times political action may be the treatment of choice.

Summary: Maintaining the Team In summary, it becomes clear that the process of teaming offers an expanded resource for diagnosis and problem solving. The interaction of the members of the team will reflect both system and patient care problems. But those interactions also tend to pull the team apart. In order to survive, both as a work group and as a collaborative practice, the team needs to have space to work out its issues, time to close out the demands of the rest of the world to protect its own integrity, and institutional support for the vital process that it is engaged in (Baldwin, Royer, and Edinburg, 1976). It 469

also needs certain insights and skills. Techniques of negotiation are useful tools for team members to acquire, and whenever possible there needs to be some cognitive mastery of this process. It is also possible for different members of the team to assume the role of team enabler. This is best done by someone who is not interested in a particular patient conflict or institutional crisis. It is important to remember that teams have thin skins; there are not many forces holding them together in relation to those potentially able to pull them apart. Inevitably there are times when the needs of individual team members have to take precedence over the professional striving for perfection as well as times when the needs of the team have to take precedence over the demands of the institutional hierarchies and professional alliances. Durkheim (1964) has made the point that groups acquire an identity of their own that is greater than the sum of their parts. But they do so when their integrity and purpose as a group are adequately protected. This can occur only when a team has the option of limiting its permeability to the outside at times of crisis. Although in theory terms have been established to facilitate communication and problem solving, there are times when professional and institutional priorities make it impossible for them to function. At their best, tension and discord become diagnostic clues to patient and system paradoxes. At their worst, interpersonal tensions can create an inertia and a depression that undermine what each team member could achieve individually. The forces that hold a team together are patient needs, institutional support, satisfaction with effective work, respect and friendship, and an understanding of the 470

diagnostic process. The forces that tear a team apart include contradictory institutional priorities, professional rivalries, misunderstanding the role of patient splitting, personal competitiveness, and lack of understanding of the collaborative problem solving process. In general, the smoothness with which a team functions will directly reflect the degree to which the power base of the institution supports the teaming process and/or the extent to which those in power come to depend on the collaborative process to fulfill their own objectives. Because teams seldom run smoothly, it becomes important to analyze the divisive forces, to make changes where possible, and to be clear about what and who should be treated. When changes are impossible because of institutional and societal blocks, it is important to recognize the obstacles and focus on what can be accomplished.

Note Reprinted from Social Work in Health Care, Volume 9(2), Winter 1983.

References Arthur, R.J., Extreme Stress in Adult Life and Its Psychic and Psychophysiological Consequences, in Life Stress and Illness, Springfield, III.: Charles C Thomas, 1970.

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Baldwin, D.C., Jr., Royer, J., and Edinburg, M., Maintenance of Health Care Teams: Internal and External Dimensions, in Baldwin, D.C., Jr., and Rowley, B.D., eds., Interdisciplinary Health Teaming: Proceedings of a Workshop, Hyaltsville, Md.: Department of Health, Education, and Welfare, 1976. Balint, M., On Love and Hate, in Primary Love and Psychoanalytic Technique, London: Liveright, 1965. Banta, D.H., and Fox, C.R., Role Strains of a Health Care Team in a Poverty Community, Social Science and Medicine, 6 (1972):697-722. Bates, B., Physician and Nurse: Conflict and Reward. Annals of Internal Medicine, 82 (1975). Beckhard, R., Organizational Issues in the Team Delivery of Comprehensive Health Care, Milbank Memorial Fund Quarterly, 40 (July 1972):287-316. Beloff, J.S. and Korper, M., The Health Team Model and Medical Care Utilization, Journal of the American Medical Association, 219 (January 1972): 359-366. Bernarducci, A., Delbanco, T.L., and Rabkin, M.T., The Teaching Hospital and Primary Care: Closing Down the Clinics, New England Journal of Medicine, 292 (March 1975):3-8. Clausen, R., Gerard, R., and Wright, J., Some Considerations in Developing a Clinical Practicum for Interdisciplinary Student Health Teams, in Baldwin, D.C., Jr., Rowley, B.D.,

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and Williams, V.H., eds., Interdisciplinary Health Care Teams in Teaching and Practice, Reno, Nev.: The School of Medicine, 1980. Dana, B., and Sheps, C., Trends and Issues in Inter-professional Education: Pride, Prejudice, and Progress, Journal of Education for Social Work, 4 (1968): 35-41. Delbanco, T.L., and Parker, J.N., Primary Care at a Teaching Hospital: History, Problems and Prospects, Mount Sinai Journal of Medicine, 45 (1978): 628-645. Durkheim, H., The Group in Depth, New York: International Universities Press, 1964. Eichorn, S., Becoming: the Evolution of Five Student Health Teams, Institute for Health Team Development, 1974. Engel, G.L., The Need for a New Medical Model: A Challenge for Biomedicine, Science, 196 (1977): 129-136. Engel, G.L., The Clinical Application of the Biopsychosocial Model, American Journal of Psychiatry, 137 (May 1980): 535-544. Epstein, 1., Professional Role Orientations and Conflict Strategies, Social Work, (October, 1970): 87-92. Fuchs, V., Who Shall Live? New York: Basic Books, 1974. Gamer, M., The Ideology of Professionalism, Nursing Outlook, (February 1979): 108-111.

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Gardner, E.A., Emotional Disorders in Medical Practice, Annals of Internal Medicine, 73 (1970): 651-653. Gartner, A., Four Professions: How Different, How Alike, Social Work, 20 (September 1975): 353-358. Groves, J.E., Taking Care of the Hateful Patient, New England Journal of Medicine, 298 (1978): 883-887. Hastings, D.A., and Crispell, K.R., Policy-Making and Governance in Academic Health Centers, Journal of Medical Education, 55 (April 1980): 325-332. Horwitz, J.J., Team Practice and the Specialist, Springfield, III.: Charles C Thomas, 1970. Kane, R., Teams: Thoughts from the Bleachers, Health and Social Work, 7 (February 1982): 2-4. Kernberg, D.F., Structural Derivatives of Object Relationships, International Journal of Psychoanalysis, 4 (1966): 236-253. Kindig, D., Interdisciplinary Education for Primary Health Care Team Delivery, Medical Education, 50 (1975): 97-110. Kress, H., and Nason, F., A Perspective: The Interdisciplinary Approach to Patients with Chronic Disease, Journal of the American Association of Nephrology Nurses and Technicians, 3 (1976): 34-41.

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Lee, S., Interdisciplinary Teaming in Primary Care: A Process of Evolution and Resolution, Social Work in Health Care; 5 (1980): 237-244. Lipowski, Z.J., Psychiatry of Somatic Diseases: Epidemiology, Pathogenesis, Classification, Comparative Psychiatry, 16 (1978): 323-330. Lowe, J., and Herranen, M., Conflict in Teamwork: Understanding Roles and Relationships, Social Work in Health Care, 3 (1978): 323-330. Mailick, M., and Jordan, P., A Multimodel Approach to Collaborative Practice in Health Settings, Social Work in Health Care, 2 (Summer 1977): 445-454. Mechanic, D., Future Issues in Health Care: Social Policy and the Rationing of Medical Services, New York: Free Press, 1979. Minuchin, S., Families and Family Therapy, Cambridge, Mass.: Harvard University Press, 1974. Nason, F., and Delbanco, T.L., Soft Services: A Major Cost-Effective Component of Primary Medical Care, Social Work in Health Care, 1 (Spring 1976): 297-308. Nason, F., Team Tension as a Vital Sign, General Hospital Psychiatry, 3 (1981): 32-36. Parker, A. W., The Team Approach to Primary Care, Berkeley, Calif.: University of California Press, 1972.

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Parker, C.M., Benjamin, B., and Fitzgerald, R.G., Broken Heart: A Statistical Study of Increase of Mortality among Widowers, British Medical Journal, 1 (1969): 740-743. Plovnick, M., Fry, R., and Rubin, I., Managing Health Care Delivery: A Training Program for Primary Care Physicians, Cambridge, Mass.: Ballinger, 1977. Rabkin, M.T., The Contribution of Other Members of the Health Team to the Solution of Medical Manpower Problems, Presentation at New York Academy of Medicine, Fourth Annual Symposium on Medical Education, October 9, 1975. Rahe, R.H., Meyer, M., Smith, M., Kjaer, G., and Holmes, T. Social Stress and Illness Onset, Journal of Psychosomatic Research, 8 (1964): 35-44. Rubin, I., and Beckhard, R., Factors Influencing the Effectiveness of Health Teams, Milbank Memorial Fund Quarterly, 40 (July 1972): 317-335. Rubin, I., Plovnick, M., and Fry, R., Improving the Coordination of Care: Pro-gram for Health Team Development, Cambridge, Mass.: Ballinger, 1975. Sapienza, A., and Nason, F., The Matrix Organization Revisited: Experiences of a Primary Health Care Management Team, Presentation at Second Annual Conference on Interdisciplinary Teams in Primary Care, Seattle, Washington, 1981.

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Schniewind, H.E., A Psychiatrist’s Experience in a Primary Health Care Setting, International Journal of Psychiatry in Medicine, 7 (1977): 229-240. Siller, J., A Summary: On the Delineation of Boundaries of Professional Practice in Rehabilitation, Archives of Physical Medicine and Rehabilitation (September 1971): 410-412. Simpson, G.A., The Family Health Worker at the Community Field Level, Annals of the New York Academy of Sciences (1969). Szasz, G., Interprofessional Training in Health Sciences, Milbank Memorial Fund Quarterly, 47 (1979): 449. Tessler, R., Mechanic, D., and Dimond, M., “The Effect of Psychological Distress on Physician Utilization: A Prospective Study,” Journal of Health and Social Behavior, /7 (December 1976): 353-364. Torrey, E.F., Smith, D., and Wise, H., The Family Health Worker Revisited: A Five Year Follow-up, American Journal of Public Health, 63 (1973): 71-74. Weisbard, M., Lawrence, P., and Charns, M., Three Dilemmas of Academic Medical Centers, Journal of Applied Behavioral Science, 14 (1978). Wilson, P.A., Expanding the Role of Social Workers in Coordination of Health Services, Health and Social Work, 6 (February 1981): 57-64.

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Wise, H., The Primary Care Health Team, Archives of Internal Medicine, 130 (1972): 438-444. Wise, H., Beckhard, R., Rubin, L, and Kyte, A., Making Health Teams Work, Cambridge, Mass.: Ballinger, 1974. Zborowski, M., Cultural Components in Responses to Pain, Journal of Social Issues, 8 (1952): 16-30. Zola, I., Culture and Symptoms: An Analysis of Patients’ Presenting Complaints, in Cultural Diversity in Health and Illness, Spector, R.E., eds., Appleton-Century-Croft, 1979.

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The Impact of Illness on Patients and Families: Social Workers Teach Medical Students Susan Hunsdon, MSW, ACSW Sylvia S. Clarke, MSW, ACSW At the time of writing Mrs. Hunsdon was a Preceptor and Mrs. Clarke was a Consultant, Department of Social Work Services, Mount Sinai Hospital, One Gustave Levy Place, New York, NY 10029. SUMMARY. An elective is described which teaches medical students the psychosocial components of illness. The course is taught by social work tutors who utilize their empathic and enabling skills to provide the students experiential and didactic instruction drawn from interviews with patients. Course content is exemplified by an in-depth description of material taught by a social worker assigned to the gynecology oncology service. A course evaluation is provided as well as the rationale for linking this elective with the medical school philosophy which stresses a biopsychosocial approach to clinical problems. The course structure derives directly from the day to day practice of hospital social work and thus lends itself to replication in a variety of health care settings.

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Introduction Social work in undergraduate medical education has a long, albeit varying, history dating from the early twentieth century. Pioneering programs at the medical schools of Indiana and Harvard Universities utilized social workers either to supervise home visits made by medical students or to participate in case presentations (Reynolds, 1977). Subsequent efforts to sensitize medical students to the psychosocial variables of clinical problems led to social work participation through a variety of roles in diverse program formats. The literature indicates that social workers have been commonly used as members of interdisciplinary teaching teams (Ellis, 1968; Thomson, 1973; Tanner et al., 1972) or as consultants and preceptors in comprehensive care teaching programs, often incorporating home visits (Ullmann, 1959; Tanner and Carmichael, 1970). Social workers have assumed primary teaching responsibility in a limited number of elective medical courses (McGann et al., 1973; Ullmann, 1976). A factor common to medical school curricula in the first two years, when the emphasis is on the basic sciences, is that there are few vehicles which encourage integration of psychosocial content into the students’ ongoing learning experiences. This article describes and analyzes an elective, “The Impact of Illness on Patients and Families,” which addresses this problem in two ways. (1) The course provides experiential instruction in an informal setting which stimulates students to risk themselves emotionally and to examine problems not addressed in other areas of their medical education. The combination of the demonstration method and the student’s

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emotional involvement in the process appears to foster an impressive learning experience. The elective builds on the interests of medical students to go beyond the basic curriculum (as all electives do) to obtain in-depth learning about the psychosocial component in health care. (2) The elective grows out of a medical school philosophy that encourages students to utilize a biopsychosocial framework when examining clinical issues during the course of their medical training. Educational goals also stress the concepts of interdisciplinary collaboration and comprehensive patient care management (Dana, 1968). In addition, since the inception of the Mount Sinai School of Medicine in 1968, there has been a Division of Social Work within the Department of Community Medicine. The inclusion of a formal social work unit within the medical school reinforces the psychosocial dimension in medical education.

Course Description In 1979, the Division of Social Work implemented “The Impact of Illness on Patients and Families,” which utilizes social workers from the Department of Social Work Services as tutors who provide medical students with a one-to-one learning experience, incorporating both didactic and experiential content. Course material includes four broad areas: (1) The impact of illness on patients and families; (2) The dynamics of behavior and aspects of human growth and development; (3) The physician/patient relationship; and (4) Interviewing skills. In this elective, first and second year medical students are assigned to individual social work tutors for twenty-four or more hours of instruction which generally involve weekly 481

meetings over the course of the semester. When possible, students are given a choice in assignments. These may comprise any medical service area of the hospital where there is a social worker available to act as an instructor. Common assignments include maternal and child health, the medical-surgical services, the adolescent clinic, psychiatry and the emergency room. Experiential learning is emphasized through student observation of, and participation in, social work interviews with patients, families and medical staff. The social work tutors conduct pre-interview and post-interview discussions with the students to analyze interviewing techniques used; to explore the students’ emotional and cognitive responses; and to teach relevant behavioral and attitudinal dynamics. Pacing and level of content are individualized according to the tutor’s assessment of the student’s knowledge and comfort with the psychosocial material explored. There is no formal examination requirement. An evaluation tool is completed by all students and serves as a catalyst for student and social worker to discuss the concepts learned in the course. The “Impact of Illness” elective meshes in philosophy with an interdepartmental course: “Introduction to Medicine” which is required for first year medical students. Division of Social Work faculty members have played an active role in developing and teaching this full year course. Objectives for “Introduction to Medicine” for the 1983-84 academic year include the following: (1) To introduce students to the environment of medicine, and to the social, political and economic forces that help to shape it. Particular emphasis is placed on the physician’s role and responsibilities within the medical care system: (2) To provide a biopsychosocial framework for the examination of clinical problems. (3) To 482

provide a forum where students can examine how their own values, beliefs and feelings affect and alter their behavior and relationships with patients, families and colleagues. (4) To assist students in developing communication skills (e.g., how to talk to patients; how to gather data; how to communicate with other health professionals. (5) To stimulate student awareness of the economic and social costs of illness and its treatment (Lowe, 1983). The “Impact of Illness” elective complements these goals as it imparts skills and theory which flow from first hand interactions with patients. The “Introduction to Medicine” syllabus is taught through the use of small discussion groups and in a class room setting. The combination of elective learning (Impact of Illness) and required study (Introduction to Medicine) creates a synergism enabling students to approach the environment of medicine analytically, but with sensitivity to psychosocial issues. Additional reinforcements to this holistic approach to medical education can be found in other electives through the Division of Medicine and the Department of Psychiatry. An analysis of the “Impact of Illness” elective as taught to two female medical students by a social worker assigned to the gynecology oncology service will highlight the learning opportunities provided the students and how some of the objectives for a medical education in comprehensive patient care are met through these experiences. This description of the elective as taught on one particular medical service illustrates the conceptual underpinnings of the course.

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Course Content Facilitating Understanding of the Impact of Illness Initially, the social worker encouraged each student to share her personal experiences with cancer. This gave the tutor some idea of the student’s level of anxiety and preconceived notions about the disease. One of the students had a friend who was receiving treatment for a gynecological malignancy. This prior experience increased her ability to identify with the stresses of women undergoing similar treatments, but also lowered her personal defenses when interacting with dying patients. First year medical students have little exposure to specific illnesses so it was necessary to help them acquire basic information about the different types of gynecological malignancies, their severity and their treatments. The social worker then introduced the student to the notion that patients exhibit common emotional responses to the disease which affect their coping abilities and acceptance of treatment. For example, the student observed that guilt is a frequent reaction to gynecological cancer. Some women imagine that some past behavior, frequently sexual in nature, caused their disease. Treatments such as surgery or chemotherapy engender severe blows to a woman’s femininity and may lead to depression, familial conflict or noncompliance with treatment. Tutor-student discussions of frequent emotional reactions such as depression and defense mechanisms such as denial were individualized for the student when she visited specific 484

patients who verbalized their feelings about their illness. These interviews were often painful for the student who was exposed to the patient’s tears or anger. The instructor tried to vary the impact of these interviews by visiting patients with good prognoses as well as those who were severely ill. The student and social worker later discussed the terminal patient in the context of Elisabeth Kiibler-Ross’ five stages of dying (Kübler-Ross, 1969). This provided a formalized structure to a sometimes overwhelming emotional experience.

Teaching Communication Skills Consideration of the emotional dynamics of the terminally ill patient led naturally to a discussion of typical reactions of physicians to patients who can no longer benefit from active medical treatment. The student sa.v that physicians may emotionally withdraw due to their own sense of failure and busy themselves with the complex medical paraphernalia surrounding most terminal patients. Broviac catheters, oxygen, I.V.’s, wound care and ostomy functioning require so much attention that physicians may avoid eye or hand contact with the patients. While interviewing, the social worker instructed the student not to look at the medical apparatus, but rather to watch the patient’s facial expression and body movements. The instructor tried to concretely demonstrate that a kind word, sensitive touch and a sympathetic ear are more important components of treatment even when medical efforts have failed. Issues were raised for the student to consider such as how a physician may preserve a patient’s dignity and sense of control during dehumanizing medical procedures such as a gynecological exam. Gynecology treatments also provided an

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opportunity for discussion of the common fears and misperceptions that patients have around sexual issues and how these are frequently not communicated to physicians. In further consideration of the physician/patient relationship, the student was encouraged to place herself in the role of the patient and imagine how a seriously ill person views her physician. The social worker stressed the ambivalence evident when a patient depends upon her physician to save her life and must repress any angry feelings toward this savior. The student had follow-up interviews with one patient over several weeks to observe the tedium suffered by persons hospitalized for long periods of time and how the doctor’s brief visit becomes the focus of the patient’s day. The student could then understand how a physician’s careless word or impatient gesture might have a devastating effect on the patient.

Sensitizing to Familial and Social Factors Occasionally, student learning was crystalized by one vivid patient interview. For example, a student was introduced to a woman who had endured very extensive surgery and was left with two ostomies. She was learning to care for both appliances and to integrate them into her daily activities. The patient hoped to return to work and to continue caring for her two teenagers. Wearing her hat as listener rather than medical observer, the student was awed by this patient’s positive attitude and her articulate description of her attempts to master the disability. The patient became a full bodied woman with familial and social ties rather than a depersonalized figure beneath a white sheet. The student later shared that she

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had never considered what happens to a patient after she leaves the hospital and what effect surgery might have on a person’s physical and emotional status. This new look at the social side of medicine was the most important knowledge that the student gained from the course, and she felt that it was unique in her medical education to date. Expanding on the social side of medicine, the social worker tried to raise the student’s awareness of how families affect the patient’s reaction to her illness. Although it wasn’t always possible to produce a live illustration, instructor and student discussed case examples showing a range of familial patterns. The enmeshed or symbiotic family was considered because these frequently present problems for the physician. The student was helped to understand the dynamics of anxiety, lack of control and separation fears which lead family members to behave disruptively on the hospital unit. Conversely, the student had opportunities to observe socially isolated patients. In speaking with the lonely patient, the student obtained a vivid sense of how lack of family supports or the absence of a dependent child or spouse can erode a patient’s will to fight her illness. Since the students were present during the Thanksgiving and Christmas seasons, they were touched by the plight of the lonely patient when contrasted with those surrounded by family and gifts and with the festive atmosphere evident at the nurses’ station. Many of the patients on the gynecology service are single mothers, and during interviews with them, the social worker focused on the patients’ efforts to maintain their maternal roles and to manage their families from their hospital beds. Since mothers often place the needs of their families ahead of 487

their medical care, the instructor felt it important for the medical students to understand the conflicts experienced by these patients, and how the hospital system must be flexible in addressing their needs. In discussing these families, the social worker stressed that familial communications problems can be exacerbated during illness, particularly over the patient’s diagnosis, and that the physician can aggravate communication difficulties if he feels uncomfortable imparting medical information. The instructor used this opportunity to offer her views on how to assess a patient’s and family’s tolerance for adverse medical news and how this material may be conveyed with integrity, but always with hope and assurance of ongoing medical support. One of the positive aspects of this course from the stand point of the social worker is the opportunity to offer advice on ways that physicians should handle emotionally laden topics with families, advice which allied personnel are rarely able to dispense to physicians in the hierarchical medical setting.

Illustrating Variables

Developmental

and

Cultural

In an effort to deepen the student’s psychosocial assessment skills, the social worker described patients within a developmental format and a cultural context. The student became familiar with patients of different ages. Tutor and student then considered the patient’s stage of growth within an Erik Erickson framework and how the psychodynamic issues of each developmental period affect a patient’s response to her cancer and treatments (Erickson, 1963). It was possible in this context to show how a teenager may be

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caught in conflicts around identity and autonomy, and this struggle may be played out in the medical setting and lead to noncompliance with treatment. Conversely, an elderly woman who has outlived husband and friends may refuse treatment for entirely different reasons. In visiting fragile elderly patients, the student was able to see that a long hospitalization and multiple medications may lead to memory lapses and disorientation, and how these reactions can sometimes be misdiagnosed as senility, or even psychosis. The cultural impact on a patient’s response to illness was illustrated by showing how Hispanic beliefs about a hysterectomy may lead women after such surgery to have a radically altered sense of self. Similarly, religious beliefs play an extensive role in a patient’s utilization of medical care. One of the students had a memorable visit with a lady who possessed fundamentalist Christian beliefs. She serenely accepted her terminal condition and refused active medical treatment. Student and social worker later explored the difference between this kind of acceptance and the apparent calmness fostered by massive denial of one’s illness. Since pain control is an important aspect of cancer treatment, the instructor encouraged the students to view pain in a broad context encompassing physical, psychological and cultural components. One student visited a patient who had a history of anxiety caused by family problems. The chronic stress had clearly exacerbated her physical pain. Tutor and student then discussed how pain can become the focus of long standing intra-personal or familial conflicts.

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Exploring Ethical Dilemmas Occasionally, ethical issues surfaced for discussion such as when should a physician stop actively treating a patient or how much responsibility should the physician give the family in making medical decisions. For students immersed in the objective world of the laboratory and the biomedical sciences, it is not easy to switch gears and address questions which call for statements of values and opinion rather than fact. The one-to-one relationship with the social worker and the pace of the elective enabled the students to risk themselves to consider value-laden topics. Indeed, they were glad to discover that their opinions were encouraged and respected.

Course Evaluation For the last two years all students have completed a brief evaluation form in which they (1) summarize primary concepts learned; (2) evaluate the structure and teaching atmosphere; (3) address how the course may contribute to their professional growth as physicians; (4) describe how the course affected their understanding of hospital social work and (5) offer suggestions for improving the elective. Approximately 17% of each first year medical school class of one hundred students have completed the elective during the last four academic years, making a total of sixty-seven students. (Frequently, more students register for the course than can be accommodated by social work tutors.) The following conclusions are drawn from an analysis of thirty-three student evaluations completed in the last two years. 490

In these evaluations the students validate the relevancy of the goals of the elective. They consistently cited an increased understanding of how psychosocial factors affect the course of the patient’s illness and how medical crises impact on family dynamics. The students stressed a new awareness of cultural variables and the fact that health maintenance goes beyond the hospital experience. They noted an increased sensitivity to the uniqueness of each patient and a new consciousness that the physician must involve patient and family in the medical care plan. The biopsychosocial framework emerged for the students as a vital and relevant tool, grounded as it was in their guided interactions with patients over the course of the term. The following comments typify student learning in these areas: Everyone responds to illness in a different way and has different expectations with respect to treatment and recovery. People expect different things out of their lives, and one cannot expect everyone to share the same goals and morals. In treatment of patients, we must therefore be sensitive to and have respect for each patient’s individuality. I was able to see some of the complexities and problems of adolescence especially in an urban environment, something with which I was totally unfamiliar before coming to medical school. Several important issues came up during the course such as adolescent sexuality, birth control, abortion, teenage motherhood, family problems, etc., and I was able to see what adolescents themselves thought about these issues and how some of these are handled. Students were most enthusiastic about the structure and teaching atmosphere of the course, citing the enabling, 491

one-to-one relationship provided by the social work tutors. Such comments as these were frequent: I approve highly of the structure of the course. There was a definite time given to observation of patient and health care worker; there was opportunity for discussion after interviews and even some time for actual interviews by students. I liked the flexibility of the course-the feeling of taking ample time to develop more skills, to address topics and just going at one’s own pace. The teaching atmosphere of the course was very positive. I was encouraged to voice my own perceptions of the patient’s problems and feelings while at the same time I felt free to ask any questions that might have been troubling me. Observing the interaction between the patient and social worker, I was able to understand how she used different interviewing skills and theories to bring out the real concerns of the patient. Students were thoughtful in assessing the impact of the course on their professional growth as future physicians. They cited greater confidence in their interviewing skills, with increased sensitivity to the non-verbal cues conveyed by patients. They noted a new awareness of how the medical system may dehumanize a patient and how the physician must refrain from imposing his own values onto the patient: I learned a lot about the impact of doctors on patients. I think I saw how loaded the relationship is and how important it is for doctors to actively engage their patients or at least make themselves open to them so that there is better communication between patients and doctors.

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I learned how to interact with patients in a constructive manner. I became adept in “reading” patients in a positive way, and I learned how to behave in a professional, yet compassionate manner. I discovered the complexities of dealing with patients and their families. The main lesson I gained was the importance of maintaining the humanity of patients in this often dehumanizing system. Some students emphasized their increased self-knowledge, as exemplified by the following: It is difficult to put into words what I have learned here. I reaffirmed my beliefs that knowing oneself as a human being should help a physician in dealing with her patients, i.e., knowing what makes you comfortable, at ease, cooperative, satisfied will probably also be those same things that make your patients comfortable, etc…. I’ve learned the importance of conveying to one’s patients that their problems, worries, and anxieties are important to you; and that the time you spend with them is their time to ask questions. It is also important to allow patients their right to direct the questioning to issues they feel are important. As a health care worker, one must listen closely to all that is said and all that is implied. Many of the things I’ve relearned are really very simple things—a kind gesture, a smile, a pat on the hand. I guess it simply means keeping hold of your humanity—let your patients know you understand their pain, their discomfort, their mistrust. A serendipity of this elective is that medical students learn about the social work role. Students were surprised that hospital social workers have such multi-faceted 493

responsibilities, and they noted an increased understanding of interdisciplinary collaboration in patient care planning. Students had few suggestions for improving the elective. Some noted scheduling difficulties or requested more hours. A few suggested that the course be required for all medical students. Of course, the students choosing this elective are those most sympathetic to the psychosocial components of patient care. It may be surmised that if the course were mandatory, not all students would view the experience so positively.

Instructor Preparation Since student learning depends upon the teaching skills of the tutors, a group format is used to prepare new instructors and to address problems which may arise during the course of the term. The social work coordinator responsible for the administration of the course guides these group meetings. Frequently, tutors need help to clarify their roles as teachers of concepts useful for physicians-to-be rather than as instructors of social work. The flexibility of the course structure may lead to social workers feeling anxiety over their teaching skills. The group discusses techniques for facilitating student learning and explores such topics as assessing students’ reactions to the course; ways of introducing new material and pacing the learning experience; helping the students to risk themselves emotionally and intellectually; and coping with students’ personal problems which may emerge during the course. The coordinator is also available to work individually with instructors. Careful preparation and ongoing guidance appear to be the key to successful

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tutoring. Although the social workers are assigned to a variety of medical services, the process of facilitating student learning is replicable, regardless of setting. An issue for further study is how the experience of tutoring medical students has affected the social workers’ attitudes about medical education and their perceptions of physicians. Since learning is circular, the knowledge which medical students gain of the social work role may be complemented by increased social work sensitivity to the pressures and conflicts experienced by physicians. The course coordinator also arranges group meetings with the medical students at the beginning and at termination of the elective. These meetings are utilized to assess student preferences for placement, to explicate course structure and expectations, and later to obtain students’ feedback and provide a vehicle for sharing their experiences. An important consideration is the heavy investment of social work time in this elective, a problem also raised by Ullmann (Ullmann, 1976). Social workers typically tutor students for twelve or more weeks each, two to three hours per week. However, social work instructors cite satisfaction in being able to contribute to medical education and in developing their teaching skills. They also view the elective as an opportunity to conceptualize their roles with patients and with collaborative staff in their respective service areas. Although students respond enthusiastically to this beginning exposure to the psychosocial aspects of patient care, it is impossible to assess the long range effects of the elective upon their development as future physicians. We know that 495

the values and content of the elective are reinforced by the “Introduction to Medicine” course and further shaped by the philosophy of the medical school. This philosophy stresses a holistic frame of reference encompassing elements of biomedical, social and behavioral knowledge which encourages the medical student to achieve “a workable balance of thinking, feeling and doing” in addressing his professional responsibilities (Dana, 1968, p. 10). The social work tutors contribute to this goal by exercising their traditional social work roles as enablers and fostering an opportunity for medical students to develop within a learning environment which includes non-judgmental acceptance and emotional support. This experience provides medical students with new knowledge based on systematic study of biopsychosocial theory in practice.

Conclusion The elective described aims to bring to dynamic life the psychosocial components of illness for medical students in an environment which encourages a holistic approach to patient care. The methods used foster emotional as well as cognitive understanding and involve the students experientially, factors which augur well for integration and retention. The course is taught by social workers who use their empathic and enabling skills to provide instruction based on direct interviews with patients and families and through collaborative encounters. Geared to the medical students’ role as future physicians, the course content illustrates the psychosocial impact of illness on individuals, facilitates self awareness, teaches communication skills, sensitizes to

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familial and social factors, highlights the impact of developmental and cultural variables and explores ethical dilemmas. Students’ written evaluations have confirmed the success of the elective in facilitating application of a biopsychosocial frame of reference to clinical problems in patient care. The course structure and tutor role derive directly from day to day practice of social work across a spectrum of medical services; thus, it lends itself to replication in a variety of health care settings.

Note Reprinted from Social Work in Health Care, Volume 10(2), Winter 1984.

References Dana, Bess. “A Proposed Learning-Teaching Model for Undergraduate Medical Education in Comprehensive Patient Care Management for the Mount Sinai School of Medicine of the City University of New York,” 1968 (unpublished). Ellis, June. “The Social Worker as a Clinical Instructor of Medical Students.” Journal of Medical Education, 43:4 April, 1968, pp. 508-510. Erickson, E. H. Childhood and Society. New York: W.W. Norton, 1950 (2nd rev. ed. 1963).

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Kübler-Ross, Elisabeth. On Death and Dying. London, MacMillan Co. 1969. Lowe, Jane. “Objectives: Introduction to Medicine 1983-84.” Mt. Sinai School of Medicine, 1983 (unpublished). McGann, Leona M. et al. “Primary Responsibility for the Psychosocial Aspects of Care: The Role of the Medical Student.” Journal of Medical Education, Vol. 48, June 1973, pp. 594-595. Reynolds, Mildred M. “The Role of Social Workers in Medical Education.” Social Work in Health Care. Vol. 3(2) Winter 1977, pp. 187-198. Tanner, Libby A. et al. “An Interdisciplinary Student Health Team Project in Comprehensive Family Health Care.” Journal of Medical Education. Vol. 47, August 1972, pp. 656-658. Tanner, Libby A. and Carmichael, Lynn P. “The Role of the Social Worker in Family Medicine Training.” Journal of Medical Education, 45:11 (November 1970) pp. 859-865. Ullmann, Alice. “The Role of the Social Worker in Teaching Fourth-Year Medical Students.” Journal of Medical Education, 34:3 (March 1959) pp. 239-246. Ullmann, Alice. “Teaching Medical Students to Understand Stress in Illness.” Social Casework, November 1976, pp. 568-574.

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A Gerontology Internship Program for Medical Students Alice Ullmann, MS Hirsch S. Ruchlin, PhD At the time of writing Alice Ullmann was Clinical Associate Professor of Public Health and Medicine, Cornell University Medical College; Associate Director of Social Work. The New York Hospital, 525 East 68th Street, New York, NY 10021. Hirsch S. Ruchlin was Professor of Economics in Public Health and Medicine, Cornell University Medical College. This program was supported by grants from The Isaac H. Tuttle Fund and The New York Community Trust. SUMMARY. Although the aged are the country’s major users of medical care and social services, traditional medical school curricula devote little time to the aged and their social needs. This article reports on a community-based gerontology internship established for pre-clinical medical students to sensitize them to the needs of the elderly in the community. Students were assigned to community agencies servicing the elderly; working with elderly clients, they learned about needs and services. Students, agency staff and program faculty found the internship a meaningful, consciousness-raising experience, and an excellent vehicle for

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preparing future physicians to interact with and care for their aged patients.

Introduction Much has been written about the aging of the American population. Presently one in nine Americans is over the age of 65, by 2030 they will number one in five. The elderly are the country’s major users of health care professionals’ time, hospital and long-term care facility days, medications, and every other costly health related service. While many professional schools have been devoting increasing attention to the elderly and their needs, medical schools have, in general, been slow to follow this trend (Robbins, Vivell, and Beck, 1982; Williams and Hadler, 1983). Since medical students of today will spend a good part of their time caring for the elderly tomorrow, it is crucial that they learn about old people’s problems and needs, and the services that are and are not available to meet these needs. The social work profession, because of its knowledge of the psycho-social elements of illness and its frequent contacts with the elderly, is well equipped to participate in this educational effort, together with other interested and knowledgeable individuals (Reynolds, 1977). The problems of the aging population is one of our major public health issues. While strides have been made in the diagnosis and treatment of the various diseases and illnesses that afflict the elderly, their problems are not amenable to medical solutions alone. Medical treatment often prolongs life, but society and its agents have not always been able to provide adequate social care. As a result, the quality of life of

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the elderly is often poor. Recognizing this problem and having a long-standing interest in aging, the authors, a social worker and medical economist on the faculty, initiated a gerontology internship program in the summer of 1983 under the sponsorship of the Department of Public Health at Cornell University Medical College, to provide medical students with firsthand learning experience in the social and community care of the elderly. We continue to serve as the internship’s co-directors.

The Internship Program Objectives The objectives of the internship are: (1) to educate and sensitize medical students to the social, legal, psychological, and ethical problems that impact on the elderly; (2) to familiarize students with agencies in the community which provide services to old people and are skilled in helping them; and (3) through these objectives, to instill or reinforce realistic and positive attitudes toward the elderly, attitudes that often do not prevail inside academic medical centers.

Structure of the Internship The internship is a six-week, summer program of supervised full-time work in one of several local community social agencies for the elderly. Students are also required to attend weekly seminars on aspects of aging held at the college and coordinated by the authors. The bulk of the students’ work at the agencies is direct interaction with clients in their homes and in senior centers, and focuses on helping these people to 501

live in the community. Although visits to clients in hospitals and nursing homes may be scheduled, and students discuss proper diet and medication schedules with clients, there is no direct clinical intervention. The seminars led by invited faculty or extramural experts, focus on entitlements, and medical, psychiatric, social, and legal issues in aging. They consist of a short lecture followed by case discussions. At the initial seminar students are given information packets on Medicare, Medicaid, and other entitlements, and are asked to keep daily diaries describing their activities, experiences, and feelings about the aged clients they encounter. The community agencies, which offer multi-service programs for the elderly, are staffed by skilled and committed professionals, and were well known to the social work department of the medical college’s teaching hospital. Agency staff are aware of the problems some of their clients experience in the hospital, such as staff attitudes, long waits for ambulatory care, and early discharge. Most of the agencies have experience training and supervising social work, nursing, and other health care students, but prior to their involvement in the program had minimal experience working with medical students. Agency personnel are enthusiastic about the opportunity to participate in the internship, hoping to help educate future doctors who would care for the elderly with interest and compassion. Students have weekly contact with the internship co-directors at the seminars. Additional meetings are scheduled, upon request, to discuss problems that students may encounter with their assigned clients and placement. Diaries are reviewed weekly to further monitor student activities. The internship co-directors and the senior social work staff at the agencies 502

meet during the spring to plan student assignments, and the co-directors maintain frequent contact with the agencies during the internship to monitor student progress. Agency staff provide the daily, on-going, supervision. The internship is open to pre-clinical students who have completed their first or second year of medical school. Recognizing that most students would need to work during the summer to help finance their education, foundation support was obtained to permit the payment of a stipend competitive with other summer work-study opportunities at the college, and to provide some faculty support. Twelve students enrolled in the internship in 1983, and 19 students enrolled in 1984. Four community social agencies were used as placements in 1983. A fifth agency was recruited in 1984. Each agency hosted three students in 1983 and four students in 1984.

Rationale Community agencies were selected as the locus of the internship because of a desire to provide students with major ongoing involvement with and responsibility for a select number of needy elderly. We believed that the intensity and depth of contact with the elderly, which could be provided only in a real-world setting, would be a key element in the learning process. The internship was designed for students who had yet to begin their clinical training. During the first two years of medical school our students have minimal inpatient or ambulatory care contacts with any patients, either the young 503

or the elderly. They have not yet been exposed to the all too familiar attitudes of residents and other staff towards elderly patients who cannot be helped and who cannot be discharged quickly. Previous studies of medical student attitudes have shown that pre-clinical students tend to have positive patient care attitudes (Kendall and Jones, 1967). The internship was deliberately structured to capitalize on these attitudes, and to reinforce them by exposing students to a sample of the vast majority of the elderly who are not institutionalized and who live in the community.

Internship Experiences The students’ experiences differed depending on their host agency’s specific functions. Some students received detailed orientation sessions at their agencies, while others learned about their clients and “the system” as they went along. In all cases, the clients assigned to the students knew that they would be working with them for only a few weeks, that they were not doctors, and that they had selected this summer work experience because of their interest in older people. Students immersed themselves in their agency’s case management tasks, mostly through home visits, and through this process interacted with the elderly and assisted them on numerous fronts. On the health front, students accompanied their clients to hospitals and stayed with them throughout the admissions interview and the initial laboratory testing. They accompanied the senior clients to hospital emergency rooms and clinics and to doctors’ offices. Students visited their hospitalized clients, and one observed his client’s surgery. They helped clients understand their hospital bills and acted

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as advocates in appealing billing errors. Groups of students also visited nursing homes to learn about this form of institutional long-term care. Students gained first-hand knowledge of social programs. They participated in meals-on-wheels deliveries, and visited social security and general services administration offices on behalf of, and with, their clients. They assisted clients in applying for food stamps and Medicaid. Some accompanied groups of clients on trips aboard the Floating Hospital, a health education/screening/recreational facility on a river boat, while others helped with their agency’s voter registration program. Students also participated in recreational programs in order to learn about the capabilities and feelings of the elderly. They organized and participated in exercise, dance, crafts, bingo, and group discussion programs. They accompanied groups to the Metropolitan Museum of Art, the Museum of Natural History, and a Circle Line cruise around Manhattan. The students also participated in internal agency functions. They assisted with senior center-based meals programs, conducted chart reviews, sat in on needs assessment interviews, attended staff meetings, contacted clients’ families, contacted clients’ landlords to assist with housing problems, and in some cases participated in their agency’s outreach program to the homeless. Some assisted their clients with their banking needs, and one student escorted a client to a bank and observed the establishment of a burial trust. These activities gave the students insights into the lives of older people, their particular needs, as well as their attitudes 505

about medical care. They saw clients who refused medical and surgical care—decisions hard for an enthusiastic medical student to accept; and they struggled with ethical and moral issues such as family rejection of older people. They experienced the red tape delays and impediments clients experienced in relation to entitlements, and they recognized the problem of older people living in a changing neighborhood populated with many new high rise dwellings built to attract the affluent. At the seminar sessions, students were as ready to discuss the very positive aspects of their relationship with many of their clients as they were to voice their frustration with programs such as Medicaid and food stamps, errors made by hospital billing departments, and the amount of paperwork the elderly have to deal with. Students were disheartened by the environment in which some of their clients lived and their vulnerability to crime, and they expressed their frustration with some of their clients who refused services which might have improved their condition. In addition to sharing these experiences with the internship co-directors and invited guest speakers, they also shared these feelings with their preceptors at their placements. Students supported each other in the seminar discussions, and, on a daily basis, at their placements. Agency staff also provided support to students when difficult and frustrating problems arose.

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Program Perspective

Evaluation–Student

The students enrolled in the 1983 internship were given the Palmore Facts on Aging and the Rosencranz and McNevin Aging Semantic Differential tests during the orientation seminar and at the last seminar (Palmore, 1977 and 1981; Rosencranz and McNevin, 1969). The Palmore quizzes are designed to test respondents’ knowledge of mental, physical and social facts concerning the elderly and to uncover common misconceptions. The Rosencranz and McNevin quiz seeks to gauge a respondent’s attitudes toward the aged. The students found these tests to be very simple, but noted at the end of the internship, that the content of the tests did not coincide with the experiences they had had. For the 1984 internship the faculty developed a brief quiz dealing with aspects of the health care system of particular importance to the elderly, and the social services available to them. Ninety-eight percent of the students displayed greater knowledge of these issues at retest on this quiz. Notations in the student diaries and the discussion at the final seminar (which was taped) provide insights about the students’ experiences. The following excerpts from the diaries are noteworthy: After meeting Miss S. this morning, I am convinced that an incredible number of elderly people are trapped. Some are physically trapped by disabilities, like Mrs. A. Some are stuck in apartments with no access by elevator, thus effectively trapping them at home. Other elderly people are exploited, 507

and are trapped like that. Perhaps it’s not a problem unique to the elderly, but I really hate to think that these invisible chains are a regular part of the human condition! Spent 4 hours with Mrs. E. mostly on the phone to food stamp offices in N.Y.C. and Albany, and to Legal Services. Fair hearing is on for next Thursday, and I’m trying to get everything organized since I’ll be her authorized representative there. Found out that some money that I tried to get back for her from Social Security did in fact get sent to her. Yeah! Mrs. S., a new client, has Alzheimer’s and her family wants to put her in a senior citizen apartment. It’s a classic case of what the family wants versus what the client wants. I have a feeling the family will win; I just hope the change is done sensitively because Mrs. S. is no dummy—she knows what’s happening. I am particularly proud of the classes I taught at the senior center. The creative charcoal drawings they did (over 100 of 3 minute drawings on 2.5 by 1.5 ft. papers were made each session) were as fresh and energetic as any I saw in my studio course at Harvard where the average art student’s age was 20. In the beginning, I suspected that this course is too “off the wall” for the seniors and I was skeptical of its success. Now, I have proved to myself that 80-90 year old people can create. … I am happy that my “students,” even those who showed up at only one or two sessions, walked away from the course with an appreciation of modern art, with their mind thoroughly exercised, and convinced of their ability to create.

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Student comments, elicited at the final seminar and excerpted below indicate what the students believe they gained from the internship. I had very little interaction with older people. I feel that I have overcome my fear of them. I’m able to engage in conversation with them. I can deal with them. I think that the difference is going to be that a lot of us care now and I don’t think that we’re going to lose that…. I look at them as people and not as subjects or diseases. Even if you don’t ever have two hours again to sit with someone, you can always come in and sit even if it is for 10 seconds, to sit and not stand, to give the illusion of having time. Not to fool them, but to make them comfortable, to know that you care enough…. I think that’s the whole thing about this program; it becomes easy for me to think about how I would like to help. It is so much easier now that I have tried it. I’d like to think that in the next three years here and the next “umpteen” years as a doctor I’ll never look at an older patient in a waiting room, in a bed, or in a corridor without first trying to set the stage of where they are really at instead of thinking “pancreatitis, 93, a real pain in the ass,” but trying to think what is the home situation, what is the family situation, and where are you going when you leave here?

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Program Perspective

Evaluation–Agency

Senior social work staff at the agencies who served as preceptors for the internship were interviewed at the end of each internship to determine what aspects of the program they thought had been important, whether there were specific concerns voiced by the students about their experiences, what teaching methods they used most frequently, and if they had any suggestions about improving the internship. All agency personnel believed that the students came to the program with positive attitudes, and that agency staff were able to reinforce these attitudes. Agency preceptors were impressed by the students’ ability to learn quickly, by the enthusiasm and imagination they brought to their work, by the energy with which they pursued such issues as entitlements, and by the sensitivity they displayed to their clients. Preceptors reported that a major focus of their interaction with the students was sensitizing them to the needs of the elderly. Most of the students had had no prior exposure to the elderly poor and agency staff thought it was particularly important for them to become aware of the distance that so often exists between a hospital, the medical profession, and the surrounding community. Preceptors at four of the five agencies thought that the home visit was the most important learning experience, while one believed that though home visits were important, learning about the entitlement system was more essential and meaningful. According to the preceptors, concern or discomfort expressed by the students centered on lack of adequate health care, poverty, arbitrary 510

cut-offs from programs, the anguish of some of the clients for whom nothing or little could be done to raise their quality of life, and the refusal of some clients to use health and social services that would have been available to them. Agency staff suggested that the internship should be longer, and some would have liked to have more students. They felt that teaching the students had been a very positive experience for them and that the clients had been helped.

Discussion The internship was not designed to train gerontologists or geriatricians but rather to foster positive attitudes about the aged by exposing students to the elderly in the community and sensitizing them to their needs. It appears that this goal was accomplished. Furthermore, there is little doubt that the students learned about the social support system and the functions and skills of social workers. Learning about entitlements by theoretical discussion or from the literature is not as meaningful as learning by doing and relating, all under the close supervision of agency preceptors. This approach has been used in the past with medical students (Ullmann, 1976), and is a key element of social work education. The internship has become a very popular project at our institution and plans are underway to permanently incorporate it into the college’s summer work-study program. We believe that similar programs can be implemented in other medical schools, and should be. In addition to having major social work involvement in such a program, other faculty with interest and knowledge of aging should be encouraged to

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participate. The community agency—medical school model developed for this program could also be applied to other age groups, such as neglected children, to educate students about their needs. The question of whether the internship, popular as it is among students, will have any effect on their future practice, must be recognized. Reviewing the students’ comments presented in their diaries and expressed at the seminars, one is tempted to assert that they will be interested in caring for elderly patients, will see beyond the physical illnesses, and will have the sophistication to work well with other professions. This assertion draws upon the fact that medical educators have, for many years, been promoting the teaching of social, psychological, and environmental factors that impact on patients and their interactions with the medical care system (Reader and Soave, 1976). Reader and Goss described one of the earliest and most comprehensive efforts in this area, the Cornell Comprehensive Care and Teaching Program, and showed that the student attitudes were affected positively (Reader and Goss, 1967; Kendall and Jones, 1967). Of more direct relevance to the current project is a report that a summer work-study project on the special problems of the elderly yielded positive results (Birenbaum, Aronson, and Seiffers, 1979). Wilson and Hafferty (1983) also reported that students who had enrolled in a seminar on aging in the first year of medical school had more positive attitudes towards the elderly at the time of their graduation than did a control group of their classmates. Despite these successes, we do not know whether students will retain positive patient care attitudes when they leave medical school. Reynolds and Bice (1971) report negative 512

patient care attitudes of interns particularly to chronically ill patients. Shapiro and Lowenstein (1979) present a number of interesting and provocative articles on negative attitudes of housestaff and the development of these attitudes during the pressures of housestaff training. A fictionalized book on this subject presents a similar picture (Shem, 1978). One can only speculate whether the effect of a program similar to the one described here will sustain students during the high-pressure residency period. On the other side of the ledger, West and Levy (1984) report that physicians in practice have similar factual knowledge about aging as do medical students, but less bias against the elderly. It may well be that time alone, and professional maturity, can redress some negative attitudes formed during residency training. Clearly, the literature does not provide firm answers to the question of whether a program like the one described here will make a difference in the eventual practice of the physician.

Summary A community-based gerontology internship was designed to sensitize medical students to the needs of the elderly in the community. The program gave pre-clinical medical students the opportunity to work with elderly people known to social outreach programs in the medical college’s geographic area. The students engaged in a variety of activities, under close supervision of agency professional staff, and provided needed services to aged clients. The students described their experiences and their relationships with their clients as well as client reactions, in positive terms, and the agency preceptors

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stated that the students had been sensitized to, and gained knowledge about, the social system. The question of what lasting effect these experiences will have has not been answered. Follow-up studies of other programs with similar aims have been difficult to conduct. It is particularly difficult to attribute patient care attitudes of physicians in practice to one particular educational program or experience. It will be at least five years, and more likely eight or ten years, until these students will be in practice. During this lengthy training period they will be exposed to many events which will leave a lasting mark on them. Despite this fact, follow-up studies of programs such as the internship described here need to be done. We do know that the internship enabled community social workers to participate in teaching medical students, gave medical students the opportunity to become involved in helping relationships with community residents, and taught the students about the health and social services needs of the noninstitutionalized elderly.

Note Reprinted from Social Work in Health Care, Volume 11(1), Fall 1985.

References Birenbaum, A., Aronson, M., and Seiffers, S. “Training Medical Students to Appreciate the Special Problems of the Elderly,” The Gerontologist, 1979, 6, 575-579.

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Kendall, P.L. and Jones, J.A. “General Patient Care: Learning Aspects,” in Reader, G.G. and Goss, M.E.W. (Eds.), Comprehensive Medical Care and Teaching, Ithaca, N.Y.: Cornell University Press, 1967, pp. 73-120. Palmore, E.B. “Facts on Aging: A Short Quiz.” The Gerontologist, 1977, 17, 315-320. Palmore, E.B. “The Facts of Aging Quiz: Part Two.” The Gerontologist, 1981, 21, 431-437. Reader, G.G., and Goss, M.E.W. (Eds.). Comprehensive Medical Care and Teaching. Ithaca, N.Y.: Cornell University Press, 1967. Reader, G.G. and Soave, R. “Comprehensive Care Revisited.” Health and Society Milbank Memorial Fund Quarterly, 1976, 54, 391-414. Reynolds, M.M. “The Role of Social Workers in Medical Education.” Social Work in Health Care, 1977,3, 187-198. Reynolds, R.E. and Bice, T.W. “Attitude of Medical Interns Towards Patients and Health Professionals.” Journal of Health and Social Behavior, 1971,12, 307-311. Robbins, A.S., Vivell, S., and Beck, J.C. “A Study of Geriatric Training Programs in the United States.” Journal of Medical Education, 1982,57, 79-86. Rosencranz, H.A. and McNevin, T.E. “A Factor Analysis of Attitudes Toward the Aged.” The Gerontologist, 1969, 9, 55-59.

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Shapiro, E.C. and Lowenstein, L.M. (Eds.). Becoming a Physician: Development of Values and Attitudes in Medicine. Cambridge, Mass.: Ballinger Publishing Co., 1979. Shem, S. The House of God. New York: R. Marek, 1978. Ullmann, A. “Teaching Medical Students to Understand Stress in Illness.” Social Casework, 1976, 9, 568-574. West, H.L. and Levy W.J. “Knowledge of Aging in the Medical Profession.” Gerontology and Geriatrics Education, 1984, 3, 23-31. Williams, M.E. and Hadler, N.M. “The Illness as the Focus of Geriatric Medicine.” New England Journal of Medicine, 1983,308, 1357-1359. Wilson, J.F. and Hafferty, F.W. “Long-Term Effects of a Seminar on Aging and Health for First Year Medical Students.” The Gerontologist, 1983, 23, 319-324.

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Commentary Much of the professional writing on collaboration discusses the difficulties encountered when professionals with varied value orientations and different training attempt to work out compatible goals for care (Mizrahi and Abramson, 1985). There is a gap between the widely held theoretical knowledge that treatment of illness requires a biopsychosocial approach and the implementation of those ideas in medical care, a gap that presents obstacles to collaborative practice and the inclusion of social workers as full members of the health care team. The different perspectives of members of health care teams can also be viewed as having positive as well as problematic aspects. Weiner noted the “excitement and strain” that result from different ideologies coming together in collaborative work (Weiner, undated). He cautioned social workers not to assume that they are the only health care professionals to hold the best interests of the patient as a priority. The fact that the largest number of social workers in the United States practice in health and mental health settings is testimony to a societal mandate for the inclusion of the social worker as an integral member of the health care team. In many federal, state, and municipal health care programs, the inclusion of social workers in the care team is a legal prerequisite for funding. Several authors, whose work was published in the journal but cannot be included here for lack of space, have explored the

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development of teams as effective vehicles for social work participation in health care. They consider sources of conflict between team members and a variety of ways of reducing strains (Terry, 1981; Lee, 1980; Lowe and Herranen, 1978; and Williams et al., 1978). Since the early days of social work in health care and throughout the eighty years of its growth and development, social workers have contributed to the education of other health care professionals (Bartlett, 1939). As Reynolds points out in her article included in Part 1, social workers often teach as faculty members of medical and nursing schools. Since students may apply their learning to their practice with their present and future patients, education at this level provides a good opportunity to influence patient care in a lasting way. Recently reported examples of education provided to medical students and resident physicians focus on helping them incorporate knowledge of the psychosocial dimensions of care and on developing skills in their application as they treat patients and families (Twersky, 1983; Chemin, 1981; and Hanna and Schachter, 1979). These educational experiences aim to increase physicians’ capability to treat the person with the illness, instead of focusing on the illness alone; to individualize and humanize medical care. Such skills are rarely emphasized or incorporated in a systematic way in the highly technical and scientific curricula of medical schools, although some content is episodically taught in many of them.

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References Bartlett, Harriet M. The Participation of Medical Social Workers in the Teaching of Medical Students. Chicago: American Association of Medical Social Workers, 1939. Chernin, Mark E. “The Social Worker as Educator of Family Practice Residents: Principles for Practice,” Social Work in Health Care 6(3), Spring 1981, pp. 25-34. Hanna, Edward A., and Schachter, Judith Guthwin. “An Integration of Psychosocial Concepts into the Education of General Practitioners,” Social Work in Health Care 4(4), Summer 1979, pp. 393-408. Lee, Stacey. “Interdisciplinary Teaming in Primary Care: A Process of Evolution and Resolution,” Social Work in Health Care 5(3), Spring 1980, pp. 237-244. Lowe, Jane I., and Herranen, Marjatta. “Conflict in Teamwork: Understanding Roles and Relationships,” Social Work in Health Care 3(3), Spring 1978, pp. 323-330. Mizrahi, Terry, and Abramson, Julie. “Sources of Strain Between Physicians and Social Workers: Implications for Social Workers in Health Care Settings,” Social Work in Health Care 10(3), Spring 1985, pp. 33-51. Reynolds, Mildred M. “The Role of Social Workers in Medical Education: A Historical Perspective,” Social Work in Health Care 3(2), Winter 1977, pp. 187-198. (See Part 1 of this volume.)

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Terry, Polly Orr. “Clinical Social Work Roles in an Integrative, Interdisciplinary Team: Enhancing Parental Compliance,” Social Work in Health Care 6(4), Summer 1981, pp. 1-15. Twersky, Reva Κ., and Williamson, Penelope. “Family Conferences: An Approach to Teaching Family Systems Care in a Family Practice Residency,” Social Work in Health Care 9(1), Fall 1983, pp. 1-13. Weiner, Hyman, J. “Communication Among the Professional Team,” in Social Work in Maternal and Child Health: A Casebook. New York: Columbia University School of Social Work and St. Luke’s Roosevelt Hospital Center, Department of Social Work (undated). Williams, Cindy Cook, Bracht, Neil F., Williams, Reg Arthur, and Evans, Ron L. “Social Work and Nursing in Hospital Settings: A Study of Interprofessional Experiences,” Social Work in Health Care 3:3, Spring, 1978, pp. 311-322.

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Additional Readings Collaboration Abramson, Marcia. “Collective Responsibility in Interdisciplinary Collaboration,” Social Work in Health Care 10(1), Fall, 1984, pp. 435-443. Banta, H. David, and Fox, Renee C. “Role Strains of a Health Care Team in a Poverty Community,” Social Science and Medicine 6, 1972, pp. 697-722. Bergman, Anne S., and Fritz, Gregory K. “Psychiatric and Social Work Collaboration in a Pediatric Chronic Illness Hospital,” Social Work in Health Care 7(1), Fall 1981, pp. 45-55. Brill, Naomi I. Teamwork: Working Together in the Human Services. New York: J.B. Lippincott, 1976. Dana, Bess. “The Collaborative Process,” in Rosalind Miller and Helen Rehr (Eds.), Social Work Issues in Health Care, Englewood Cliffs, N.J.: Prentice-Hall, 1983, pp. 181-220. Dana, Bess, Banta, H. David, and Deuschle, Kurt W. “An Agenda for the Future of Interprofessionalism,” in Helen Rehr (Ed.), Medicine and Social Work. New York: Prodist, 1974, pp. 77-88.

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Huntington, June. Social Work and General Medical Practice: Collaboration or Conflict. London: George Allen Unwin, 1981. Lowe, Jane Isaacs, and Herranen, Marjatta. “Understanding Teamwork: Another Look at the Concepts,” Social Work in Health Care 7(2), Winter 1981, pp. 1-11. Mailick, Mildred D., and Ashley, Ardythe A. “Politics of Interprofessional Collaboration: Challenge to Advocacy,” Social Casework 62(3), March 1981, pp. 131-137. Rae-Grant, Quentin A. F., and Marcuse, D. G. “The Hazards of Teamwork,” American Journal of Orthopsychiatry 38, January 1968, pp. 4-8. Rehr, Helen. (Ed.). Medicine and Social Work: An Exploration in Interprofessionalism. New York: Prodist, 1974. Toseland, Ronald W., Palmer-Ganeles, Joan, and Chapman, Dennis. “Teamwork in Psychiatric Settings,” Social Work 31(1), January-February 1986, pp. 46-52.

Teaching Others Bergstrom, Christine. “The Teaching Social Worker in Family Medicine: A Prototype for the Hospital Social Worker,” Social Work in Health Care 4(4), Summer 1979, pp. 409-421.

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Chapin, Barbara A. “Educating the Family Practice Resident in the Use of Community Resources,” Social Work in Health Care 6(3), Spring 1981, pp. 49-56. Dana, Bess. “Directions for Social Work Training in Primary Care,” in Rosalind Miller (Ed.), Primary Health Care: More Than Medicine. Englewood Cliffs, N.J.: Prentice-Hall, 1983, pp. 153-159. Dana, Bess, and Sheps, Cecil G. “Trends and Issues in Interprofessional Education: Pride, Prejudice and Progress,” Journal of Education for Social Work 4(2), Fall 1968, pp. 35-41. Ellis, June. “The Social Worker as Clinical Instructor of Medical Students,” Journal of Medical Education 43(4), April 1968, pp. 508-510. Rice, Elizabeth. “Teaching of Social Aspects in Schools of Public Health,” Medical Social Work 2(4), October 1953, pp. 148-159. Ullmann, Alice. “Teaching Medical Students to Understand Stress in Illness,” Social Casework 57(9), November 1976, pp. 568-574. Wolkenstein, Alan S., and Laufenburg, Herbert F. “Teaching the Behavioral Science Component in a Family Practice Residency: Social Work Role,” Social Work in Health Care 6(3), Spring 1981, pp. 35-47.

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Part 5 Developing Programs and Delivering Services

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Introduction This chapter is about how patients and families can be helped to cope with illness and its dislocating consequences, how their psychosocial functioning can be enhanced, and how the care system can be made more responsive to the needs of individuals, families, groups, at-risk populations, and systems within the hospital and the community.

Systems and Populations The article by Nacman presented here, taken from the first issue of the journal, is the first of a two-part series that illustrates the application of systems theory to social work practice in health care. Nacman highlights how social work’s role in health care organizations can be expanded by population and systems approaches. The article by Stubblefield provides a model of preventive work with a bereaved population at risk because of the complications of unresolved grief. It is applicable to families of many patients with life-threatening illness.

Individual and Family Approaches The primary method of delivering social work services in health care settings traditionally has been direct “clinical” work with individual patients and families. The term “clinical social work” in psychiatric and medical settings is broadly defined as services to patients and families achieved through

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individual, family, or group counseling and through collaboration, advocacy, and resource location on their behalf. Mailick’s article, on short-term treatment of depression in physically ill patients, exemplifies the use of individual methods applied within the brief time span of acute hospital care. Mailick provides a conceptual framework for social work intervention applicable to a large population serviced by social workers in health care settings. Pilsecker’s article on the impact of cancer on patients and staff delineates and illustrates social work practice methods applicable to work with many terminally ill patients. Hancock’s article analyzes sensitive work with the parents of a child patient who has a sleep disturbance. The steps of assessment, intervention, and outcome constitute a good example of the effectiveness of psychodynamic social work practice with a family. Kemler’s article illustrates the usefulness of the family systems perspective for social work practice in health care. In response to an article on social work’s role with patients’ families (Caroff and Mailick, 1985) Kemler develops an independent inquiry and considers explanations for the relative rarity of the application of a family systems approach by social workers in health settings. She provides a model of treatment to help families cope with uncertainty in cases of serious pediatric illness and demonstrates the potential for developing new ways of helping families cope with the impact of illness and medical care.

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Use of Groups Since their beginnings in health care settings, social workers have recognized the value of groups for support, education, mutual aid, problem-solving, and promotion of system changes desired by patients. In psychiatric settings, social workers have led family support groups, psychoeducational groups, patient/staff therapeutic milieu groups, and aftercare planning groups. Groups are the treatment of choice for some kinds of problems; they neither complement, supplement, or substitute for other methods. Despite widespread recognition that groups can be the primary source of help to some patients, families, and staff members, their use by social workers who practice in health care settings remains idiosyncratic, not as yet institutionalized as a regularly used interventive method. Northen’s comprehensive analysis defines social work practice with groups as an essential component of clinical social work in health care settings. Northen examines trends in the use of the group method in these settings and explores the rationale for selecting it as the interventive method of choice. Different types and purposes of groups are distinguished and frequently encountered problems in the implementation of group are identified. Bailis, Lambert, and Bernstein illustrate the unique significance for health care settings of the short-term group with transient membership. They question the assumption that stability of membership is necessary for successful groups. Euster’s article also demonstrates the use of short-term groups, in this case those for women and their families coping

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with the crisis of mastectomy. This group program, with its interdisciplinary approach, provides an example of the institutionalization of groups in the ongoing, overall health care treatment plan for all who undergo this surgery and for their families. The articles that follow illustrate a repertoire of methods, each with its own body of skills and each targeted to different units of attention.

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A Systems Approach to the Provision of Social Work Services in Health Settings Martin Nacman, DSW At the time of writing Dr. Nacman was Director, Social Work Division, Strong Memorial Hospital, 260 Crittenden Boulevard, Rochester, NY 14642. SUMMARY. This paper offers a sociological view of the hospital as an institution within the economic, political, and value systems of the community. Systems theory is (tie conceptual framework for projecting the potential role of the social worker in the health setting.

The Hospital Community

within

the

Larger

Systems theory offers a conceptual framework for discussing the potential role of the social worker in the health care setting. The hospital is a social system that depends on important sectors of its external environment as well as its own internal structure to produce useful services. Along with other complex organizations, the hospital is dependent upon

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powerful economic and political forces and events (e.g., legislative acts, insurance company policies) as well as private benevolence for the procurement of land, labor, and capital. These resources, once provided, are the factors of production. They are mobilized by the establishment of a formal organizational structure that systematically delineates a pattern of coordination, the ordering of positions and duties, and the chain of command. This results in the integration of various specialized resources and functions.1 It is crucial to note that both within and outside of the organization, policy decisions that lay down the nature of the program and the differential allocation of resources are determined by administrative, medical, and board elite. These decisions are not necessarily reached by a completely rational process; they are nearly always influenced by the value judgments and personal sentiments of these powerful figures. It should be noted, too, that once a formal organization is established the informal social structure formed within that system creates an ambience of its own, which in turn influences the formal structure. As a social system the hospital must provide appropriate inducements to staff and patients to obtain cooperation. To survive, the formal organization must accommodate itself to the needs of patients and staff, who themselves have rights and prerogatives of their own. Disregard of these considerations is a source of conflict and tension within hospital organizations as well as between the organizations and the community. A break in the continued striving for adjustment between the formal and informal structure imperils the effectiveness and/or efficiency of the organization. The organization must provide a climate that will motivate both patients and staff to participate in 530

organizational activities and will encourage effective and efficient utilization of resources.2

A Systems Approach Within this systems theory framework both the social worker and the patient are viewed as being influenced by powerful forces operating within and outside the health organization. At the same time, but to a lesser degree, the patient and the social worker, as well as other staff members, influence the organization and determine the effectiveness and efficiency to be reached. But since health programs are carried out within bureaucratic organizations, the essential mode of power is exercised through a hierarchical power structure that places authority in a select elite and limits the attainable influence of lower ranked personnel. The establishment and development of a social work program within a given health organization is therefore influenced by the policies formulated by political, economic, and professional elite, both governmental and private, who influence national health policies and those who supervise and control a specific health institution. Initially, social work controls no resources and has no legal authority within the setting except in those programs where social service is explicitly mandated by payment sources or accreditation requirements. The number of social work department staff hired, the qualifications of these staff members, the nature and extent of the program to be developed, and the relationship of the social work program to other hospital programs are strongly influenced by the value judgment of lay and medical administrators who

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determine the organization’s basic commitment to psychosocial treatment and their acceptance of nonmedical practitioners. This state of affairs has resulted in much frustration for social workers but also a serendipitous gain. It offers incentive for social workers to acquire an understanding of the politics of the organizations in which they work and to learn how to deal with the system. The patient also is influenced by internal and external factors— community, family, intrapsychic, and organizational—and the dynamic interaction of these factors. The social worker is therefore compelled to consider all of these factors, and not one to the exclusion of the others. Direct casework or group work services with respect to interactional aspects of the patient’s situation present one entry point. But in addition, intervention with reference to intraorganizational and interorganizational variables that impinge upon the patients’ access to and utilization of health care services is equally important. Dana3 contends that the social worker’s relationship with the client population should be viewed as a longitudinal process. Social work services should be directed toward the establishment and maintenance of conditions that produce optimum social health, as a means of preventing dysfunctioning while providing for the treatment of disease when it occurs. Kahn4 embraces the same idea when he recommends that, in addition to clinical services, social work should develop input into health and welfare planning oriented toward ameliorating those institutional problems and restraints that deprive the individual of the opportunity to achieve and maintain his maximum level of health. Kahn emphasizes that social work 532

will perform its advocacy role more effectively when the profession establishes a leadership position at the corporate management level and participates in political and planning processes that have the potential for change and innovation. The handling of child abuse or neglect cases offers an excellent example that the social worker has to apply a systems approach to practice that recognizes the interrelatedness of emotional, social, and physical factors and the significance of organizational procedures and policies. In situations involving child abuse or neglect the social worker is required to operate within at least four subsystems: the hospital, the family, the protective unit, and the court. Anticipatory planning is essential. In recognition of the occurrence of child abuse problems, hospital staff should devise a comprehensive plan that covers both immediate and long-range services. The social worker may serve as both catalyst and coordinator of the program. However, the formation of this program requires joint planning by hospital administration, medical, social work, and nursing staff in combination, and the delineation of the special roles of each participant. It is significant that in emergency room departments, where many child abuse cases are first identified, horizontal, interdepartmental working relationships are operative more frequently than elsewhere in the hospital where traditional vertical departmental boundaries persist. Immediate services include: (a) medical care; (b) documentation of the injury; (c) casework and, if needed, psychiatric services to help the parents and the child with their emotional responses to the situation; and, finally, (d) procedures for reporting the situation to the proper legal authorities. The establishment of a positive relationship between social worker and family is seen as an extremely 533

important part of a long-range program to prevent further abuse of the identified child, and other children. On the other hand, court action may be required to safeguard the child’s life. In complex situations this process may require several months of direct service in the family as well as continued collaborative effort with other community agencies. Social work involvement goes beyond the provision of direct service to the family, to encompass planning with the local protective organization, the court, and other essential community agencies. An appropriate anticipatory program includes prior arrangements with these organizations in order to coordinate and facilitate activities. When community services are inadequate or lacking, the hospital social worker becomes responsible for taking action directly or through community groups to improve existing programs or to help create new resources. This commitment may require the formation of coalitions with other interested parties, who share the same concerns. These may be lay and professional, in and out of the hospital. For example, in Rochester, a coalition has been formed among various agencies concerned with child protection. This group serves to foster collaboration and advocates on behalf of the abused and neglected child. Social work is, therefore, concerned with the family, the hospital organization, home care services, the judicial and protective system of the community, because all of these elements influence the treatment of the abused child and the prevention of further abuse. And at the other end of the continuum social work services in a well-baby clinic may offer some possibility for preventing child abuse and neglect.

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The systems approach being described departs from the traditional casework orientation that has been the historic thrust of hospital social work. In contrast, the emphasis is on a developmental approach stressing both organizational and community change programs geared toward preventive interventions. These intra- and interorganizational change programs are directed toward the elimination of physical, operational, and attitudinal pathologies. A commitment to institutional change and social reform, in addition to direct clinical services, offers social work a substantially greater opportunity to provide constructive assistance for the hospital and to expand opportunities for patients. To achieve these goals social work programs should include community organization and administrative staff who can devote the necessary time to changing outdated and obstructive health and welfare policies and rectify organizational pathologies, since in the long run this action may at times be more relevant than direct patient services. However, Gilbert and Specht5 point out that it is unlikely that one social worker be expert both in direct patient services and in organizational and community change strategies. Both types of expertise are necessary, but how this mix of abilities will be developed is variable depending on the size of the department, as well as skill versatility. The important theoretical point is the delineation of needed practice components. It is impractical to assume that most caseworkers are inclined, or trained, to assume direct responsibility for community or institutional change programs. Defined in these terms, a hospital social work staff needs not only competent direct service capability but also expertise in administration, organizational theory, social planning, and community organization. These areas of 535

expertise are currently being instilled as part of graduate and postmaster’s degree programs in schools of social work. The direct service and social action efforts require close linkage so as to maximize communication and collaboration. Patient problems, identified by direct service workers, may become the potential focus for organizational and community activities which are the responsibilities of staff trained in these areas. The reverse also applies. Problems identified by administrative and community personnel may require the attention of direct service workers. The proposed model does not require that every caseworker and group worker become expert in these other methods, although some may. What is suggested is awareness of these approaches and access to other staff and community workers with competence in these techniques. This task cannot be undertaken lightly. The clinical service worker needs the skill to identify institutional and environmental problems that contribute to the dysfunctioning of the individual patient or family. Even if social action is alien to the clinical social worker, that professional must be astute to the nature of systems as well as psychic problems. He should not be content to help clients adjust to destructive forces that are possibly alterable. Responsibility for needed change in administrative and/or social policy must be shared by all social workers. Within recent history hospital social work has often failed to focus on social and organizational pathologies. This has seriously limited its development as a unique helping profession and its potential for helping patients and their families. The preoccupation with the intrapsychic gave the impression that social work was not interested in organizational and environmental matters, and too often the social worker has been excluded from intraorganizational 536

power groups that are responsible for setting hospital policies and procedures. The absence of a true disciplinary peer status has resuited in vulnerability to domination by lay and medical administration functionaries. The practice of casework became so narrowly defined as to exclude significant involvement in social and organizational change, which could have represented a unique contribution of the social work profession. Over time the hospital social worker lost relevant contact with consumers and their communities. They rationalized their lack of involvement in social intervention by pointing to their contact with a select group of other professionals who worked in community agencies. Social workers were reluctant and afraid to enter the “power arena” of the hospital or the community. In instances in which social workers were interested in social change, they rarely focused on the organizational structure of the health institution in which they were employed. Social work along with other subgroups within the hospital system is governed by forces that counteract centrifugal pull. Inducements are provided to those who conform to the image of the organization depicted by organizational elite. Mills6 has pointed out that employees of large bureaucratic organizations sell not only their time and energy but their personalities and prerogatives as well. Once joined to the organization, the social worker is expected, within limits, to behave according to orders and instructions supplied to him by the organization’s elite, physicians, and lay administrators. This system produces little conflict or anxiety for the social worker, providing that the institutional mores, the ethical structure, the program orientation, and degree of autonomy 537

sanctioned are essentially in agreement with those of the social work profession. When there is variance between the values and rules sanctioned by the profession and those allowed by the institution, the social worker is under stress. The impersonalization, and hierarchical power structure of organizations, often results in an alienated labor force. Coser’s7 study of nurses in a general hospital demonstrated that they became alienated because they felt powerless to implement significant goals. Traditionally, within health organizations the right to exercise professional judgments has been rigorously limited for anyone other than the physician. This condition restricts the professional prerogatives of the social worker as well as other professionals who practice in these settings. Major rewards, salaries, extra benefits and the availability of scarce resources, office space, and equipment may be implicitly related to the acceptance of an institutionally self-serving role. In the event that the professional orientation of the social worker comes into conflict with the prevailing orientation of organizational elite, the worker is expected to yield his position to avoid conflict. Under these conditions it is extremely difficult for social workers to fulfill their role as advocates or engage in activities directed toward organizational change. Titmus8 refers to the social worker as a prisoner of the collective status quo of the organization. In his study of an eastern hospital, Wessen9 found the ideology of physicians to be conservative. They viewed the hospital primarily from the angle of their professional needs and tended to resist new developments and trends. The limited definition of the social work role by hospital elite and the conservatism of medical administration influence the 538

choice of social work leadership. Recruitment may be biased in favor of a social work administrator with a conservative orientation, in an attempt to preserve the status quo of the organization. If, however, the mandate is broad enough to permit the exercise of an expanded repertoire of skills, social work offers hospital and medical administrators additional expertise that may be utilized as part of a joint effort to improve patient services and community relations.

Note Reprinted from Social Work in Health Care, Volume 1(1), Fall 1975.

References 1. Parsons, Talcott. “Suggestions for a Sociological Approach to the Theory of Organizations/’ In Complex Organizations, edited by Amitai Etzioni. New York: Holt, Rinehart & Winston, 1962. 2. Coser, R. L. “Alienation and the Social Structure.” In The Hospital in Modem Society, edited by E. Freidson. New York: Free Press of Glencoe, 1963. 3. Dana, Bess. “Social Work in the University Medical Center.” Johns Hopkins Medical Journal 124 (1969):277-82. 4. Kahn, Alfred J. “Theory and Practice of Social Planning.” New York: Russell Sage Foundation, 1969. 539

5. Gilbert, Neil, and Specht, Harry. “The Incomplete Profession: Commitment to Welfare.” Paper read at the Annual Meeting of the Council on Social Work Education, February 23, 1973, San Francisco, California. 6. Mills, C. W. White Collar. New York: Oxford University Press, 1951. 7. Coser, R. L. “Authority and Decision Making in a Hospital: A Comparative Analysis,” American Sociological Review, no. 23 (1958), pp. 56-63. 8. Titmus, Richard. Commitment to Welfare. New York: Pantheon Books, 1968. 9. Wessen, A. F. “Hospital Ideology and Communication between Ward Personnel.” In Patients, Physicians, and Illness, edited by E. G. Jaco. New York: Free Press of Glencoe, 1958.

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A Preventive Program for Bereaved Families Kristine S. Stubblefield, MSW, CSW At the time of writing Ms. Stubblefield was a social worker at Saint Joseph Mercy Hospital in Ann Arbor, Michigan. SUMMARY. The bereaved are a population at high risk for the development of subsequent emotional and physical illness. This paper describes a preventive program for families of cardiovascular surgery and oncology patients facing possible or inevitable death. The purpose of the program is prevention or reduction of the negative consequences of unresolved grief. The social worker’s prior relationship with the family is used to provide advance preparation for possible or anticipated death, immediate intervention at the time a death occurs, preparation for the course of the normal grief reaction, and outpatient follow-up. The response of the bereaved has indicated that the service is effective in facilitating adjustment to the death of a family member, and the program has been adapted for other patient populations. A preventive social work program was developed to assist the families of deceased cardiovascular surgery and oncology patients in a large community hospital. Its purpose is the prevention of the development of emotional and physical illness related to unresolved or distorted grief.1 This is

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accomplished by advance preparation of the family for the possible or anticipated death of a patient, by the provision of information about the grief reaction when a death occurs, and by ego-supportive casework designed to promote normal mourning and facilitate the bereaved family member’s capacity to form new attachments and to adjust to living without the deceased. The service evolved from preexisting social work programs for cardiovascular surgery and oncology service patients; as a result of regular services to these patients the social worker is actively involved with both patient and family prior to the time that a death occurs. This prior relationship provides an opportunity for preventive education, facilitates assessment of the family’s internal and external resources for coping adaptively with the crisis of death, and promotes the family’s use of the social worker for support and reality testing in the difficult time to come.

Bereavement and Community Health The necessity for preventive treatment for the bereaved was first suggested to the author by observations made in clinical work with psychiatric patients. Again and again, assessment revealed pathology related to the unresolved loss of a loved person and to the failure to have successfully completed mourning. A thirty-five-year-old married mother of two children, Mrs. S., presented with symptoms of reactive depression. She attributed her illness to the death of her father three years previously from acute myocardial infarction. She described her initial reaction to his death as disbelief, which persisted

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until the day of his funeral. She neither observed the dead body nor attended the funeral service, but visited her father’s grave daily for two years. She stated that by doing this, she felt that she could make her father realize that she loved and missed him. At the time that she sought treatment for her depression, Mrs. S. had been unable to cry since her father’s death. Ruth, a fourteen-year-old girl, was seen after unsuccessfully attempting suicide by a gunshot wound to the chest. Four hours prior to the attempt, she had attended the funeral of her best friend, who had been killed in an automobile accident. Ruth related that as she looked down into the casket, she wished that she would die and join her friend. She returned home and lay down to nap; the next thing she recalled was hearing the gunshot. It was learned that her grandfather, who had cared for Ruth when her father left her mother shortly after Ruth’s birth, had died when Ruth was six years old. She had attended his funeral with her mother. Ruth reported that when she cried, her mother told her to stop because her grandfather had gone “far away to a better place,” and that “all the tears in the world wouldn’t bring him back.” Ruth stated that since that time she had wanted to die so that she could go and be with her grandfather. While it is true that in some situations unresolved grief merely exacerbates preexisting pathologic trends, there is impressive evidence for a causal relationship between the stress of bereavement and the subsequent development of emotional illness, as well as the development of physical and psychosomatic disease. Various authors have found an 543

increased incidence of intellectual and emotional problems in children who have lost a parent2 and an increased incidence of dependency3 and depression4 in adults following childhood bereavement. Increased morbidity in widows5 and a significantly higher (40 percent) mortality rate for widowers in the six months following conjugal bereavement6 have also been found. Lindemann’s classic study of acute grief noted that distorted grief reactions can result in a number of pathological conditions including ulcerative colitis, rheumatoid arthritis, asthma, social isolation, and self-destructive behavior.7 Lindemann also makes the important observation that proper management of the grief reaction can prevent the development of such problems. Crisis theory teaches that successful management of a crisis can strengthen the personality to deal adaptively with future stresses, while failure to master a crisis can result in increased vulnerability for the individual.8 It is with this in mind that a preventive program for bereaved families, a population at risk for the pathological sequelae of unresolved grief, was developed.

Preparing the Family for the Possible Death of a Patient While the majority of patients undergoing open-heart surgery tolerate the procedure well, there is always a certain amount of risk involved.9 Preparation of the family for the possible death of a patient can begin as early as the day of admission. In the program described, all cardiovascular surgery patients and their families are seen by a social worker for psychosocial

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evaluation, preoperative teaching, orientation to the surgical intensive care unit, and assistance with the post-operative adjustment period; this is described by Beagle elsewhere.10 Psychological preparation for cardiovascular surgery includes an assessment of the anxiety levels of patient and family and, unless contraindicated by evidence of disturbed ego functioning, an uncovering of feelings about the possibility of death. Most patients and their families are relieved to verbalize this anxiety and are reassured to be reminded that the fear of death is universal and will not adversely affect the patient’s likelihood of survival. Discussion of feelings about death is also useful in facilitating communication between patient and family. The husband who is facing heart surgery may have avoided discussing the possibility of death with his wife for fear of alarming her; the wife may also be apprehensive but reluctant to voice her concern for the same reason. By encouraging an open discussion of this issue, the social worker can assist the family in making psychological provision for the possibility of death, usually a source of relief for all concerned. When a death does occur, the family is able to derive some consolation from the fact that they were able to complete the communications and arrangements that were meaningful to them before the patient died. Mr. K., a high-risk patient admitted for resection of a large aneurysm of the thoracic aorta, expressed a strong fear of death but was unable to discuss it with his family, who shared the fear but were equally unable to confront it. With support, feelings about the possibility of death were brought out and openly explored. Mr. K. took his wife and each of his children aside for a private communication, and even made arrangements for his funeral should death occur. He expired in surgery, and his family, while not denying their sadness 545

and loss, expressed the feeling that they could accept his death more readily because he had explained to them that the limitations imposed by his illness had made his life almost unbearable. He preferred the risk of surgery to chronic invalidism and pain, and his family was able to understand and accept his decision despite their grief at his death. Failure to prepare for the possibility of death can leave the family with a terrible sense of incompletion and guilt, as is seen in the following case where communication had broken down completely. Mrs. A., a sixty-year-old woman admitted for replacement of a severely diseased aortic valve, maintained an unusually high degree of denial, as did her husband and children. She declined preoperative teaching, and stated that she “wasn’t worried about a thing.” She died in surgery, and afterward her husband repeatedly blamed himself, stating that it was “his fault” that she had had the surgery and that he should have stopped her. Her son expressed the regret that he had never told his mother that he loved her while she was alive. Characteristically, Mrs. A.’s family did not want to view her body. Another area in which preventive measures are taken with the families of cardiovascular surgery patients is advising the parents of young children to discuss the fact of the impending surgery with each child. Parents are informed of the need to include children as much as possible to prevent the distortions and feelings of guilt and responsibility that can develop in a child who is “left out.” Parents are encouraged to explain the surgery to the child in a way that is truthful but at the same 546

time age appropriate and tolerable. A prelatency child, for example, would be alarmed by a detailed explanation of surgery, but can understand that “daddy has to have his heart fixed because it hurts.” When a child inquires about the possibility of death, as most children do, we recommend that he or she be answered honesty but reassuringly. The father of· a young child might be assisted in explaining that “Yes, mommy could die, but I don’t think that will happen. She has good doctors to help her get well. If she did die, though, we would be very sad, but we would stay together and you would still be taken care of.” Magical thinking is also discussed, and parents are encouraged to explain to children that being angry at a person can’t make them sick or make them die.11 With latency age children, parents are encouraged to utilize the developing cognitive abilities of this age group to help them cope with the anxiety that surgery engenders. One ten-year-old boy, whose father was undergoing coronary artery bypass surgery, researched and wrote a detailed report on the subject, which he presented to his class at school. This helped him manage his anxiety in a creative, growth-promoting way.

Preparing the Family for a Patient’s Anticipated Death Psychological preparation of the family for the death of a terminal cancer patient differs from work with the heart surgery patient’s family in that death is inevitable due to the nature of the disease. Furthermore, the relationship between patient, family, and social worker usually extends over a longer period of time. On the oncology service, patients

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receiving chemotherapy for advanced neoplastic disease are routinely referred to a social worker for assistance with adjustment to illness and for discharge planning. While this affords more opportunity for advance preparation, the lengthy course of this type of illness tends to foster the adaptive use of denial as a defense mechanism, and until death is clearly imminent it is often not perceived by the patient and family as a concrete event that will really occur. Nevertheless, the social worker can make use of the earlier phases of the illness to assess the family’s ability to cope with eventual bereavement and to provide ego-supportive casework where indicated. A wife who has never worked outside the home and who has been overly dependent upon her husband for her identity, for instance, may require anticipatory efforts directed toward strengthening her sense of self and assistance in preparing to assume the responsibility of supporting the family after her husband’s death. Role change within the family may produce resentment that can later lead to feelings of guilt if not resolved. Mrs. L., the wife of a thirty-six-year-old patient with advanced carcinoma of the lung, found it necessary to work full-time as a clerk to supplement the family’s income. Mr. L. remained at home caring for the couple’s three young children, and became increasingly depressed and resentful. He expressed his anger by accusing his wife of infidelity and by constantly criticizing his oldest daughter. Mrs. L., already under considerable stress, was frustrated and angered by the situation, but felt she could not confront her husband with her feelings because of his ultimately fatal condition. Casework with the goals of assisting the family in understanding the displacement of angry feelings engendered by the illness and 548

of encouraging Mr. L. to take pride in the value of child care and housework was helpful in improving relationships and in relieving feelings of resentment that could have later interfered with the family’s adjustment to Mr. L.’s death. As the patient’s illness gradually progresses and denial and anger give way to acknowledgment and preparatory grief, facilitating communication among family members becomes a major concern. A parent may feel unable to discuss the terminal nature of a family member’s illness with a child, and the child may feel isolated and punished at a time when he most requires psychological support. The social worker provides the oncology patient and family with information about the importance of sharing the knowledge of serious illness with the child and of providing the child with reassurance that he is not responsible for the illness in any way. The value of psychological “immunization”12 of the child for an impending serious loss by exposure to the less traumatic death of a distant relative, neighbor, or even a pet13 is stressed, and parents are encouraged to teach children that death is a natural part of the life cycle and comes eventually to all living things. A patient and family may need help in making financial arrangements and provision for the family’s material well-being; the social worker’s knowledge of community resources is useful here. Often, assistance with these concrete details can be of great relief to both patient and family as they provide the patient with the knowledge that the family will be provided for and the family with the reassurance of some continuity despite the impending loss.

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Social Work Intervention on the Day of Death It is a high priority for the social worker to be with the family at the time of the death of a heart surgery or terminal cancer patient.14 When this is not possible, an effort is made to contact the family by telephone the following day. The goals of social work intervention at the time of a patient’s death include encouraging the family to express fully their grief and anger, assisting the family in viewing the patient’s body and in making funeral arrangements, providing information about the course of the grief reaction, and arranging an outpatient return visit or telephone call for follow-up. The death of a cardiovascular surgery patient usually occurs during or shortly following surgery; arrangements have been made for the operating room or the surgical intensive care unit to notify the social worker by telephone when there are difficulties or when a death has occurred.15 The social worker then takes the family into a private office and remains with the family while the surgeon informs them of the patient’s death. Often, the family is in a state of shock and does not fully absorb the details of this communication; the social worker is later able to provide the family with accurate information and answer questions on the basis of what the surgeon had said. The family is usually actively grieving at this time; the surgeon and social worker are frequently assisted by the family’s minister or a hospital chaplain in providing the family with support. An important social work function is encouraging and accepting the family’s expressions of protest and anger; when these are absent, the 550

social worker may be able to facilitate their expression by a statement such as “It doesn’t seem fair.” Traditional consolations such as “It was God’s will” are discouraged, as we have found that such expressions tend either to suppress the anger that is part of normal, healthy mourning or produce subsequent guilt feelings and fears of retribution in family members who have directed some of their anger toward God. The social worker often shares the family’s expression of grief and anger at the loss of a patient; these feelings are a natural outcome of the relationship that has been developed prior to the patient’s death, and their expression provides the family with both empathy and a sanctioning of the appropriateness of verbalizing such feelings. When the family members are sufficiently recovered from the initial shock of a patient’s death in or after surgery, the social worker asks if they wish to view the patient’s body. With support, most families express the wish to do this. Those who are ambivalent or frightened are encouraged, but never pressured. The social worker notifies the operating room or intensive care unit when the family wishes to see the body, and the nursing staff arrange the viewing in a private room. Most families spontaneously touch, kiss, and talk to the deceased patient. Occasionally a family member wishes to be alone with the body. The social worker encourages the family to spend as much time with the dead person as they wish, as failure to experience the concrete evidence of death can impede recognition and acceptance of the fact that the death has really occurred.16 In the following illustration the family had a history of good adjustment prior to the death and coped well with the crisis of bereavement.

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Mr. C., a forty-eight-year-old married father of two sons, underwent bypass surgery for severe coronary artery disease. He was unable to be weaned from cardiopulmonary bypass, and expired on the operating room table. His wife and two teenage sons spontaneously expressed the desire to see the body. The wife caressed her dead husband’s forehead, and the sons carefully examined the body, including the sternal incision. When they had completed their examination, they kissed their dead father, said good-bye to him, and left the room. When a terminal cancer patient dies, the family is usually present, as the physician calls the family in whenever death appears to be impending. Occasionally a patient dies without the family present, in which case the social worker tries to be with the family at the time the physician informs them of the death. Even though death has been long anticipated, the actual event is still often a shock to the family because of the adaptive denial the lengthy illness has engendered; this is particularly true when the patient dies while the family is away from the hospital. The social worker, along with the physician, nursing staff, and hospital chaplain, provides the family with psychological support. Often very little need be said; nonverbal communication becomes important, and a family member may be comforted by a hug, hand holding, or some other physical expression of concern. When a patient who is dying “lingers” over a long period of time, the social worker encourages family members to relieve each other in sitting with the dying person in order to provide each member with an opportunity for “time out” to eat or nap.

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Mr. B., a middle-aged man whose wife suffered from metastatic carcinoma of the breast, expressed the desire to be with his wife at the time of her death, and although he suffered from a serious cardiac condition himself, refused to leave his comatose wife’s bedside to eat or sleep, and was becoming increasingly weak and fatigued. The social worker, together with the nursing staff, was able to help the family set up a “relief schedule,” and reminded Mr. B. that he had a responsibility to the rest of his family to maintain his health. This approach was successful, and Mr. B. agreed to stay with his daughter and her family in the first few days following his wife’s death to ensure that someone would be present should he experience an exacerbation of his cardiac illness. While freely grieving his wife’s death, Mr. B. was able to express without guilt his relief when the prolonged ordeal had finally ended. When an oncology patient’s death has occurred, the social worker encourages the open expression of grief and, as with the heart surgery patient’s family, sufficient time with the body to absorb the concrete aspects of the death. When the family of a patient on either service has viewed the body, the social worker often assists with funeral arrangements and notifies the nursing staff which funeral home the family prefers. The social worker then discusses the grief reaction with the family and describes some of the feelings family members can expect to experience over the new few months. These include somatic distress characterized by sighing, weakness, and an empty feeling in the stomach following any mention or thought of the deceased; feelings of unreality and distance from other people and the tendency to be irritable; preoccupation with the dead person and feelings of guilt; and inability to concentrate, with disruption of normal routines.17 553

The family is also prepared for feelings of hostility toward the deceased, as our experience has been that these can be extremely disconcerting. The thirty-five-year-old widow of a recently deceased heart surgery patient called the social worker to report an incident that had greatly upset her—two nights after her husband’s death she had dreamed that she was screaming at him and furiously beating his dead body. The interpretation that this represented normal anger on her part at her husband for dying and leaving her alone proved to be reassuring. The tendency of the bereaved to identify with various aspects of the deceased person is also mentioned. The social worker reassures the family that all of these phenomena are normal and temporary and that they will eventually cease, although there is frequently an exacerbation or recurrence of such feelings on anniversaries and holidays. The value of reviewing the family members’ memories of the deceased and of discussing feelings about the dead person is emphasized, and the social worker explains that even though this is painful at times, it is something that should not be avoided. If there are young children in the family, the social worker advises the parent of the importance of providing the child with realistic information, of including him in the funeral to facilitate his understanding and acceptance of the finality of the death, and of allowing the child to express his grief in his own way. The value of reassuring the child that he will continue to be cared for and that his needs will be met despite the death is stressed.18 The parent is also encouraged to help the child gradually review his memories of the deceased, both pleasant and unpleasant,19 and to explain to the child that 554

having been angry at the dead person in the past could not have contributed to the death in any way. This sort of magical thinking occurred in the following case: A father consulted the social worker because his ten-year-old daughter became extremely anxious the day following her fourteen-year-old sister’s death from metastatic malignant melanoma. She blamed herself for the death because she had frequently fought with her sister prior to the onset of the illness and at times she had wished her sister would die. The social worker suggested that the father explain to his daughter that everyone has such feelings when someone dies and that her anger at her sister could not have caused her death any more than “stepping on a crack would break her mother’s back.” The father was encouraged to explain to his daughter that he too had been angry at her sister occasionally, but that this had not hurt her in any way. The father reported that this approach was effective in relieving much of his daughter’s guilt and fear of retribution.

Follow-Up Contact with the Bereaved Family When the bereaved family has been provided with preparation for the grief reaction, arrangements are made for a return visit or telephone call after the funeral to evaluate the family’s progress and to determine whether or not further intervention is indicated. This follow-up contact also provides an opportunity for reinforcement of information about the grief reaction, which the family may not have entirely absorbed on

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the day of the patient’s death, as well as a situation in which the bereaved may express concerns to an empathic listener. Family members are told to contact the social worker as needed; involvement of children and adolescents is particularly encouraged. Frequently, a child who was not present at the time of a family member’s death may find it helpful to test out reality with someone other than the surviving family members, who are preoccupied with their own grief. Adolescents, too, have their own special needs. If the follow-up contact indicates a need for further treatment, up to six outpatient appointments over a period of three months are provided, although most family members have required fewer visits. Becky, a nine-year-old girl whose father died during open-heart surgery, asked to see the social worker two weeks following the death. Her mother had told her that there was “a lady at the hospital who had known her father and who had been there the day he died, who could talk to children about what had happened and how they felt about it.” Becky’s major concern was that she had had a feeling before her father had gone to the hospital that he would die, and she wondered if she should have tried to stop him. The social worker told Becky that the feeling was one she would have had whether or not her father had died, and that there was nothing she could possibly have done to prevent the death. The social worker explained that Becky’s father had said he wanted the operation because he couldn’t do anything anymore, that without it he probably would have died in a few months, and that surgery was his only chance to live. Becky appeared very relieved, stated that this was all she had wanted to know, and that she felt better after talking about it. 556

Two weeks later, she again requested to see the social worker, this time to discuss her need to be alone at times and her discomfort at avoiding her friends, who had been making special efforts to be with her since her father’s death. The social worker explained that when a loved person dies, many children need to be alone at times to think about the person, and that this feeling eventually goes away. The social worker suggested that Becky thank her friends for their concern and tell them that although she needed to be alone to think at times, this was temporary and that she would gradually get back to her “old self” again. Becky stated that she thought this was a good way to tell her friends and that she would try it. Her mother reported that within three months of the death Becky had resumed normal activities and had gone to summer camp for two weeks, something she had previously been afraid to do. Mike, a sixteen-year-old boy whose father, Mr. D., died following aortic valve replacement, was seen a week after his father’s death. He reported feelings of distance from others, a sense of unreality, and considerable guilt; he verbalized intense anger toward God. The course of the grief reaction was explained, and his expression of anger was encouraged; he found this a source of relief. Arrangements were made to meet again in two weeks, and he was encouraged to contact the social worker earlier if needed. In the second appointment, Mike reported a reduction in guilt feelings and appeared to have internalized much of the information from the previous interview, repeating some of it in his own words: “It’s normal to have had fights with someone you love—that doesn’t bother me anymore.” He reported disturbing dreams about his father, difficulty in 557

concentrating on schoolwork, and increased irritability, and was told again that such phenomena are normal and temporary. He stated that it was reassuring to know he wasn’t “going crazy.” A third appointment three weeks later found Mike having difficulty setting limits for himself. He found himself spending too much time at parties, and stated he felt he was “taking advantage” of his father’s death. The social worker agreed that when his father had been alive Mike had been able to rely on him to set limits for this kind of behavior, but now that he was dead Mike was going to have to do it himself. A week before Mike’s next appointment, the social worker received a midnight telephone call from him. He had decided to run away to Florida with two friends, and was worried about his mother and wondered if the social worker approved of his leaving. The consequences of running away were discussed, and Mike was told that while the decision was up to him, the social worker would not “explain things” to his mother. He sighed in relief and said, “I really hoped you’d say that!” He agreed to meet her the following day, and at that time reported with some embarrassment that he thought he had been trying to get the social worker to stop him from running away just as his father would have done. He stated he realized he had to learn to do this for himself. The social worker supported this insight. Follow-up a month later found Mike doing well in school, attending fewer parties, and making plans for a vacation trip with his family out west. When a family member requires longer or more intensive treatment following bereavement, referral to an appropriate community agency is made. Indications for referral include a 558

grief reaction that appears to be unusually intense or prolonged, development of severe somatic symptoms, failure on the part of a family member to express grief or anger following a death in the family, and persistent regression or indications of unusual emotional or intellectual problems in children. Referral to another agency is also made when the family lives a considerable distance from the hospital and when a family member presents a history of serious emotional disorder in the past.

Conclusion Our purpose is to provide the bereaved with assistance in mastering the crisis of death in the family in order to prevent the development of the pathological consequences of unresolved grief and to strengthen the family member’s coping mechanisms to deal with future serious losses. In working with cardiovascular surgery and oncology patients, the social worker is in the unique position of having access to families both prior to and at the time a death occurs. This affords the opportunity for preventive intervention. Long-term follow-up is needed, but the response of the bereaved thus far indicates that the program has been effective in facilitating adaptation to the loss of a family member. The program described in this paper can be applied to other patient groups; we have used similar interventions with families of severe trauma victims and with families of patients who have suffered acute myocardial infarction. Preventive programs can be developed to assist the families of all patients with potentially or ultimately fatal disease.

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Note Reprinted from Social Work in Health Care, Volume 2(4), Summer 1977.

References 1. E. Lindemann, “Symptomatology and Management of Acute Grief,” American Journal of Psychiatry 101 (1944):141-48. 2. B. Arthur and M. Kemme, “Bereavement in Childhood,” Journal of Child Psychology and Psychiatry 5 (1964):37-49. 3. H. Barry, Jr., H. Barry III, and E. Lindemann, “Dependency in Adult Patients following Early Maternal Bereavement,” Journal of Nervous and Mental Disease 140 (1965): 196-206. 4. A. Beck et al., “Childhood Bereavement and Adult Depression,” Archives of General Psychiatry 9 (1963):293-302. 5. C. M. Parkcs, “Effects of Bereavement on Physical and Mental Health: A Study of the Medical Records of Widows,” British Medical Journal 2 (1964): 274-79. 6. M. Young, B. Benjamin, and C. Wallis, “The Mortality of Widowers,” Lancet 2 (1963):454-56. 7. Lindemann, “Symptomatology and Management.”

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8. H. Parad, “Preventive Casework: Problems and Implications,” in Crisis Intervention: Selected Readings, ed. H. Parad (New York: Family Service Association of America, 1965). .

9. J. Crouch et al., “Operative Results in 1,426 Consecutive Cardiac Surgical Cases,” Journal of Thoracic and Cardiovascular Surgery 68 (1974):606-10. 10. C. Beagle, “Social Service Supports Cardiac Patients,” Hospitals 48 (1974): 135-41. 11. E. Furman, A Child’s Parent Dies (New Haven: Yale University Press, 1974). 12. G. Kliman, Psychological Emergencies of Childhood (New York: Grune & Stratton, 1968). 13. B. Levinson and J. Kinney, “The Pet and Bereavement/’ in Death and Bereavement, ed. A. Kutscher (Springfield, III.: Charles C Thomas, 1969). 14. C. Pilsecker, “Help for the Dying,” Social Work 20 (1975): 190-94. 15. Beagle, “Social Service.” 16. J. Bowlby, “Pathological Mourning and Childhood Mourning,” Journal of the American Psychoanalytic Association II (1963):500-541. 17. Lindemann, “Symptomatology and Management.”

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18. Furman, A Child’s Parent Dies. 19. Kliman, Psychological Emergencies.

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The Short-Term Treatment of Depression of Physically Ill Hospital Patients Mildred D. Mailick, DSW At the time of writing Dr. Mailick was Professor, Hunter College School of Social Work, 129 East 79th Street, New York, NY 10021. An earlier version of this paper was presented at a Grand Rounds meeting of the Social Service Department of the Montefiore Hospital, New York City in March 1982. SUMMARY. There is a high prevalence of depression among physically ill adult hospital patients. An approach to short-term social work intervention with these patients is suggested, which takes into account the crucial time constraints of most social work practice in acute care hospitals. Brief treatment can reduce the debilitating symptoms of depression reactive to the stress of illness during hospitalization or in the post discharge period. The high prevalence of depression among physically ill adult hospital patients has been observed by physicians, nurses and social workers in acute care facilities (Andraeson, Noyes and Hartford, 1977; Hinton, 1977; Kimball, 1977; Weller and Miller, 1977). Short-term social work intervention with these patients can reduce the symptoms of debilitating depressions

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while in the hospital and in the immediate post discharge period. This function is an integral component of the social worker’s intervention activities.

Assessment Depression is a nebulous term, often ambiguously used to cover a broad spectrum of conditions extending from normal mood changes to psychotic states. Disappointment, sadness and perhaps grieving are normal and appropriate responses to becoming ill and entering the hospital (Engel, 1962). Prolonged severe withdrawal, melancholia or bizarre, psychotic, depressed behavior are obvious signs of a pathological response. Many patients experience feelings of depression that occupy a middle position between these two poles, and it is this group who may benefit from short-term social work intervention during hospitalization. Differential diagnosis is a difficult, but critically important process with this group. Social work intervention is quite different for the physically ill person with a long-standing major depression that precedes hospitalization in contrast to the patient with a depression reactive to the current stress of being ill. Also, careful distinctions must be made between symptoms that present like depression, but are related to psychological and chemical changes induced by certain illnesses or associated with some therapeutic drugs. Mixed states of depression further complicate diagnosis. The diagnostic process is a collaborative activity involving the physician, social worker, nurse and, at times, a psychiatrist, as well as the patient and family or significant others (Sachar,

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1975). It requires an assessment of the past history, personality structure and defense mechanisms, physical condition and current functioning, family and additional social network supports, cultural milieu and other facets of the life situation of the patient. Special treatment approaches are required to meet the varied needs of the mix of depressed patients encountered in general, short-term hospitals—children and adolescents, young adults, middle aged and aged individuals, suffering from a range of acute chronic and life threatening physical illness with varying degrees of psychological impairment. Treatment of the depressed, physically ill young child has been given considerable attention by Bergmann and Freud (1966), Travis (1976), Wolff (1969) and others. Sugar (1967) and Visotsky (1962) describe the treatment of hospitalized adolescents with depression. Treating the depression of the elderly is discussed extensively by Gutmann (1981), Butler (1975), Goldfarb (1980), and Patterson (1980). Less attention has been given to the middle aged group. The focus of this article is on those non-psychotic middle aged adults who enter the hospital with a primary diagnosis of some acute, chronic or life threatening illness and who display symptoms of depression. Adults, especially those who are middle aged, are at a life stage when they are increasingly affected by chronic life threatening illness. Hospital admissions become more frequent (176 per thousand) and hospital stays become longer (9.2 days) (Health, United States, 1980, p. 179). Death rates jump dramatically, rising from 482 per hundred thousand at 565

45 to 49 years to 1,138 per hundred thousand ten years later (Health, United States, 1980, p. 127). People of this age group face a normative crisis. While many are experiencing the crest of their independence, ambition, knowledge and/or economic security, they must look ahead to losses, reorganization and retrenchment. Their parents are aging and some are becoming incapacitated. Perhaps stimulated by this, the middle aged person begins to struggle with and relinquish the fantasy of invulnerability. This leads to a reorientation of the sense of time, with the image of an endless future changing to a view of finite time left to live (Neugarten and Hagestad, 1976). While the grown children of these middle aged adults may still need economic and/or emotional support, they usually have either left home or no longer welcome the type of nurturance and protection which was once the organizing dynamic of family life. This stage in a marriage necessitates changes in the spouse relationship, and fear of change by one or the other partner hampers a renegotiation of the marriage contract. Roger Gould (1981) suggests that most men and women must make major shifts in the intra-psychic and interpersonal organization in middle age after their child rearing function is completed. They must grapple with existential issues, redefine themselves in terms of self-image and make some choices of far-reaching importance about how to continue to live their lives.

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The Impact of Illness The stress of illness and hospitalization renders all patients vulnerable to depression, although some experience only transitory depressed states and need little help from health care professionals in coping with them. The challenge to the patient is to try to adapt to the impact of the diagnosis of serious illness and its treatment, to episodes of pain, uncertainty, as well as remissions and recurrences (Regensburg, 1978). Each particular illness imposes some special tasks, and each individual responds to illness by placing idiosyncratic meaning on what is being experienced. Illness attacks the individual’s sense of autonomy, body integrity, self-esteem and the omnipotent fantasy of invulnerability. The patient experiences many temporary or permanent losses related to changes in functional capacity, strength, appearance, control over body functions, motility and mental acuity. Hospitalization requires that the patient manage dependency conflicts and separation from family or significant others. He or she must adapt to strangers, to health care providers who challenge the individual’s right to control daily activities, and to other patients, who become instant roommates. The patient may experience these strangers as intrusive, feel a sense of isolation and loneliness, and fear the loss of love from significant family members and others. Illness and hospitalization remove the patient from ordinary pursuits that provide status and social reinforcement and substitute instead, the regressive and debilitating attributes of the sick role.

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Treatment of Patients In the broadest sense, the goal of short-term treatment is the alleviation of the immediate source of distress: depression associated with physical illness. The major focus is on the initiation of a reparative process of the concept of self so that the patient can begin to recover from the narcissistic assault of the illness. Most middle aged adult patients entering hospitals functioned with some degree of adequacy prior to becoming ill, although the maintenance of stability may have been built on a weak or rigid defensive organization. The trauma of illness takes a heavy toll on the individual, and the integrative functions of the ego become less effective. Cath (1965) suggests that self-cohesiveness and a sense of adequacy are fueled by a storehouse of narcissism that is derived from early infantile experiences. Under the impact of illness, the ego’s ability to utilize this repository of inner calming or to integrate supportive feedback from the external environment is diminished. It is almost as though the patient cannot process positive self-regard or esteem from others because the channels through which these narcissistic supplies normally flow are somehow obstructed. Thus, the critical initial approach is to help the hospitalized patient to begin to mobilize ego capacities and to strengthen integrative functions. During the crisis of the initial stages of the illness and/or hospitalization, a number of themes commonly are dealt with. The patient needs first, to have an opportunity to abreact to the trauma of the illness, hospitalization and treatment and to mourn the losses that are realistically experienced as a result of it; second, to explore the unique symbolic meaning

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attached to the illness, and to separate old conflicts from current stresses; and third, to deal with realistic fears. These therapeutic activities need not be lengthy, nor do they have to address long standing problems of an intrapsychic nature, even though they may play some part in the current depression. They focus in on the here and now of the precipitating event.

Engagement Engagement is particularly difficult because depressed patients may withdraw cathexis from the outside world, thus cutting off interaction with others. These patients are helped by reviewing the circumstances surrounding the development of the illness and admission to the hospital not only because in the process of doing so they gain relief for the painful feelings and develop some cognitive mastery over the disturbing events, but also because the process helps the patient to establish a relationship of trust with the social worker. It offers an opportunity for patients to use the relationship to grieve over impaired or lost body parts and/or functions, and to express feelings of fear, anger and guilt. Patients are often not fully aware of the extent of their feelings. They may experience the depression, but not the anger or guilt; or the reverse. They may repress feelings, displace them, misread their intensity or act them out. They need help in sorting out and developing some mastery over what they are experiencing within a supportive, structured context. Miss P., a woman in her late fifties, holding an executive position in business, was recovering from bladder repair

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surgery. Her stay in the hospital was extended by an elevated temperature. The staff perceived her as demanding and sarcastic, and it was because of their observations that she frequently cried at night that the social worker interviewed her. Miss P. initially resisted engagement and was critical of the social worker for being intrusive. Yet, she responded during the second interview to the worker’s expressed concern and obvious willingness to try to understand her situation. Miss P. complained about the pain and discomfort she was feeling since the surgery. She was angry that her physician had not adequately prepared her, but when she tried to discuss this with him, he belittled her. She felt that had she known about it in advance, she could have handled her hospital stay better. The worker validated how she might be feeling disturbed by this experience and related Miss P.’s anger to feelings of vulnerability and powerlessness. Miss P. cried, and then talked at length about her fears of aging. She was alone, had few friends and no close family. This was her first major health problem, and she was suddenly confronted with the realization that she could have further periods of illness as she grew older. The worker helped Miss P. to sort out current responses from future fears, and to recognize that it was possible to cope with both more easily if they were not intertwined. She enlisted staff members in helping Miss P. to gain some realistic expectations about the course of her recovery. She identified planning for the future as an important task for Miss P. to handle following recovery and offered some suggestions about how she might approach it. Miss P.’s anger and her depression were measurably lessened by the end of the third interview, at which time she was discharged. 570

Assessment During the first interview or so, the worker has an opportunity to make a brief assessment of the patient, the family and the impact of the illness. With depressed patients, it is important to explore past symptomatology and life experiences that may be relevant to the current response to illness. In addition, the flexibility of the defensive structure of the patient is assessed and areas of denial, distortion and displacement are particularly noted (Golan, 1978). The patient’s level of anxiety, degree of guilt, anger, fear and despair, as well as the presence of areas of appropriate affect, capacity for logical thinking and ability to engage in a therapeutic relationship are evaluated. This assessment is especially useful if time permits brief supportive treatment lasting from four to ten sessions.

Supportive Intervention Nelsen (1980) describes four types of support; namely, protection, acceptance, validation and education. Protection affords patients a sense of being cared about as well as being cared for. Under the aegis of providing protection, the worker assumes some tasks that depressed patients or their families are temporarily unable to do for themselves. With Miss P. this included involving a nurse in explaining normal expectation for the post-operative period. In other cases, it might also include supporting the patient’s defenses so as to avoid the sudden flooding of the ego with unmanageable anxiety about the illness, and yet helping them to gradually assess their situation realistically (Stein, 1981).

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Acceptance conveys confirmation of the patient’s sense of worth. Hospitalized patients often feel infantilized by the medical routines to which they are subjected and by staff insensitivity to their dignity and autonomy. Since the social work role includes listening, empathizing and conveying understanding, they are in a unique position to support the patients’ threatened self-esteem. With depressed patients for whom loss of a sense of self-worth is a critical dynamic, this aspect of the work may be decisive for their recovery. Validation also encourages a reparative process by pointing out areas of strength, helping patients to reconnect with previous problem solving capacities and offering realistic encouragement and hope. Partializing problems into segments that are manageable fosters a further sense of mastery. Education, often undervalued, is an important aspect of support in working with physically ill patients. Relevant information is essential in helping patients to structure unfamiliar situations. Depressed patients suffer from a sense of helplessness and hopelessness and need support in order to integrate new information and to clarify confusions about the illness, course of treatment and possible outcomes. The worker’s clinical judgment is crucial in deciding how much emphasis should be placed on giving information and how much on explorations of the fantasies that may be adding to the confusions. A 49-year-old postal employee receiving radiation treatments told the social worker of his fear that the radiation would melt him down “like a stick of butter,” and that he would be helpless and unable to function. The social worker briefly explored the origin of the fantasy, and found that, at least the 572

conscious part of it was based on a chance comment that the patient heard about dissolving the tumor. In the social worker’s judgment, the salient area for work with the patient was the fear of dependency, and so, she gave him a simple explanation of how radiation really worked, and then refocused the discussion. With other patients, a review of the symbolic meaning of the illness becomes the focus of work. The word “review” is used to suggest that this can be done quite briefly. Some universal themes of retribution, proof of inherent defect, or persistent bad luck, as well as unique themes such as identification with an emotionally important object, an anniversary reaction, and so forth can be elicited. The intent is not to work out deep-seated problems or unconscious conflicts, but to encourage a conscious awareness of the symbolic meaning of the illness so that the patient cognitively can separate earlier experiences from the current crisis. Mr. B., age 55, was admitted to the hospital for surgery. The nurses reported that he appeared to be enervated and withdrawn. He did not even make the effort to reach to his bedside table to get a glass of water when thirsty. When spoken to, he answered in monosyllables, but did not initiate any conversation. His wife, interviewed by the social worker, reported that the patient was an accountant who had functioned at work and at home in a quiet, competent, but constricted manner. She mentioned that he was a son of Holocaust survivors. The social worker held short interviews with the patient, asking simple questions about how he was feeling and making brief, supportive comments.

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On the third such visit, the patient began to show some interest and seemed more willing to talk. The social worker listened to Mr. B. describe his sense of apathy and his fear that he would never be able to recover from the heavy weight of his depression. He felt that he had lost control over his life and could not regain it. With the worker’s encouragement Mr. B. discussed his former life, and particularly his sense of responsibility to take care of his family. He felt he had been rendered helpless by his illness and could no longer cope. When he mentioned that his parents had coped with much more severe experiences, the worker helped him to identify and separate the differences between his current hospitalization and his past fears and fantasies about his parent’s concentration camp experiences. While Mr. B. did not work through or resolve the earlier conflicts and fears, he was able to respond more appropriately to his current situation, and his depressive symptoms diminished. Illness often confronts patients with the necessity for a change in life style. It is natural for middle aged people to gradually come to terms with fantasies about omnipotence and invulnerability as well as acknowledge limits of opportunities and potentialities. When residual impairments or losses are imposed by the illness, the patient is more abruptly faced with the work of reassessing and reorganizing expectations of self. The social worker can help by acknowledging the patient’s struggle and offering support in working out ways of adapting to a new reality. Patients need to find a balance between the one extreme of setting unrealistic expectations for themselves which make them vulnerable to being depleted by a continuing sense of failure, and the other extreme of sliding into a precipitous relinquishment of all expectations of self and to the depressive and regressive stance of helplessness 574

and hopelessness. Patients can be helped by the worker to explore and to value their existent capacities as well as mourn for those things they can no longer do. The worker can also help the patient to explore alternate ways of accomplishing valued functions. Thus, a self-concept becomes more congruent with realistic abilities, a sense of mastery is encouraged. Super-ego pressure and negative self-evaluation are reduced and the patient feels less depressed about expectations for the future.

Work with Families It is obvious that the social worker can help to initiate the reparative process, but it is the family or other significant care partners that play a crucial role in its maintenance. Treatment of the family parallels that of the patient in importance. If anything, it is more complex and difficult. Family reactions are based upon a number of variables. The nature, severity and prognosis of the illness and the effectiveness and availability of medical technology to treat it are critical to the family’s reactions. The more debilitating or disfiguring the disease and the poorer the prognosis, the more difficult it is for the family to cope. Pre-existing emotional disturbances within the family may be exacerbated by the onset of illness and hospitalization, although in some cases, relationships have been stabilized by the onset of illness and disability of one family member. Repeated recurrences of episodes of illness exhaust the emotional, physical and economic resources of most families. They may also have varying capacities at different life stages for what they can offer to patients. Some middle aged patients have few dependable

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family resources, but can draw on other care givers with whom they have close relationships and who can offer help. Family members need an opportunity to deal with their own anxiety, denial, feelings of resentment, rejection and shame, as well as anger, guilt or depression. Again, brief therapy does not allow for a working through of problems. The focus is on encouraging the expression of those feelings which impede the re-establishment of familial coping patterns. Tensions may be reduced, problems clarified, roles reallocated and tasks assigned. Many better functioning families can accomplish these goals with brief intervention, but it is very important that the social worker explicitly offer help. Family members can function more effectively when there is early and appropriate communication of information. They need to know what to expect in a general way about the disease, and the likely responses of the patient to it. The social worker can facilitate the family’s understanding of the patient’s depression as reactive to illness and to help them to work out ways by which they can best assist in his or her recovery. They can also help families value what the patient is able to do and thus de-emphasize his or her loss of function, thus reducing pressure and encouraging a sense of mastery. They may offer positive feedback, provide warmth, love, and narcissistic supplies in a period when patients have little of their own to sustain themselves. Families may verify and reinforce improvement in emotional or physical functional capacity, and work against the intrusion of secondary gain. By avoiding the reinforcement of regressive behaviors and learned helplessness they may be instrumental in helping the patient to recover more quickly. 576

Another aim is to the family with the ongoing tasks involved in the patient’s transition from hospital to home. Multiple-family group sessions arc especially effective in accomplishing this, and they also introduce the patient and family to the value of self-help groups that exist in the community. Again, the focus is largely educative, projecting possible future milestones and problems. Unless another social worker is to be involved, it is important to demonstrate continued availability for a period after discharge. Often, the patient experiences increased depression upon leaving the hospital. At home, in a non-medical setting without the support of hospital staff members, the full impact of the illness and disability may be experienced, and the difficulties of rehabilitation and adaptation are realized. Since the social worker must limit availability to a short transition period, attention should be given to appropriate referrals for the continued help needed.

Summary Short-term treatment of patients whose depressions are reactive to the trauma of illness and hospitalization, takes into account the crucial time constraint of most social work practice in in-patient acute care hospital settings. While patients may remain in the hospital for only ten to fifteen days, they can be helped to begin a process of coping with reactive depression. Social work practice may still be overly influenced by a long-term model in treating depression. Research suggests that limited, but significant goals are achievable during hospitalization if the patient and the family are provided with short-term supportive therapy in which both affective and cognitive functions are engaged. 577

Many of these patients may leave the hospital before the long-term effects of the emotional and physical recuperative process, set in motion during the hospital stay, are observed. Social workers do very few follow-up studies of their effectiveness in short-term supportive treatment of physically ill patients. Research would throw light upon the usefulness and need for this type of intervention. Greater confidence in our capacity to deal with depression and other emotional responses to illness would encourage the maintenance of a central function of social work in hospitals … intervening with patients and families to help them deal with the impact of illness and hospitalization. Brief treatment of reactive depression is effective with relatively intact individuals and their families. It is not clear whether the approach would be equally effective if applied to the emotionally sicker end of the spectrum. Brief treatment essentially helps the depressed individual re-engage in a self-reparative process. Although not all patients have the inner or outer resources that are needed for this process, adults with reactive depressions are a patient group that social workers can help, and we should develop our technology for doing so.

Note Reprinted from Social Work in Health Care, Volume 9(3), Spring 1984.

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References Andracson, N.J.C., Noyes, Russell Jr., and Hartford, C.E. Factors Influencing Adjustment of Burn Patients During Hospitalization. In A. Monat and R. Lazarus (Eds.), Stress and coping. New York: Columbia University Press, 1977. Bergmann, T. and Freud, A. Children in hospital. New York: International Universities Press, 1966. Butler, R.N. Why Survive? Being old in America. New York: Harper and Row, 1975. Cath, S.H. Some dynamics of middle and later years. In H.J. Parad (Ed.), Crisis Intervention: Selected Readings. New York: Family Service Association of America, 1965. Engel, G.E. Psychological development in health and disease. Philadelphia: W.B. Saunders, 1962. Golan, N. Treatment in crisis situations. New York: Free Press, 1978. Goldfarb, A. Psychiatry in geriatrics. In S. Steury and M. Blank (Eds.), Readings in psychotherapy with older people (DHHS Publication No. ADM 81-409). Washington, D.C.: U.S. Government Printing Office, 1980. Gould, R. Transformational Tasks of Adulthood. In S. Greenspan and G. Pollock (Eds.), The Life Course, Vol. III. Adulthood and the aging process (DHHS Publication No.

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ADM 81-1000). Washington, D.C.: U.S. Government Printing Office, 1981. Gutmann, D. Psychoanalysis and aging: a developmental view. In S. Greenspan and G. Pollack (Eds.), The life course, Vol. III. Adulthood and the aging process (DHHS Publication No. ADM 81-1000). Washington, D.C.: U.S. Government Printing Office, 1981. Hinton, J. Bearing cancer. In Moos, R.F. (Ed.), Coping with physical illness. New York: Plenum, 1977. Kimball, C.P. Psychological responses to the experience of open-heart surgery. In Moos, R.F. (Ed.), Coping with physical illness. New York: Plenum, 1977. Nelsen, J. Support: a necessary condition for change. Social Work, 1980, 25, 388-391. Neugarten, B. and Hagestad, G. Age and the life course. In Binstock, R., and Shanas, E. Handbook of aging and social sciences. New York: Van Nostrand Reinhold, 1976. Patterson, R.D. Grief and depression in old people. In S. Steury and M. Blank (Eds.). Readings in psychotherapy with older people (DHHS Publication No. ADN 81-409). Washington, D.C.: U.S. Government Printing Office, 1980. Regensburg, J. Towards education for health professions (NY: Harper and Row), 1978, p. 76. Sachar, E.J. Evaluating depression in the medical patient. In J.J. Strain and S. Grossman (Eds.), Psychological care of the

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medically ill: a primer in liaison psychiatry. New York: Appleton-Century-Crofts, 1975. Stein, E., Murdaugh, J. and MacLeon, J. Psychiatric reactions to physical illness. In Barten, H.H. (Ed.), Brief therapies. New York: Behavioral Publications, 1971. Sugar, M. Disguised depression in adolescents. In G. Usdin (Ed.), Adolescence, care and counseling. Philadelphia: Lippincott, 1967. Travis, G. Chronic illness in children: its impact on child and family. California: Stanford University Press, 1976. U.S. Department of Health and Human Services. Health, United States, 1980 (DHHS Publication No. PH5 81-12320.) Washington, D.C.: U.S. Government Printing Office, 1980. Visotsky, H.M. et al. Coping behavior under extreme stress. Archives of General Psychiatry, 1962, 5, 423-48. Weller, D. and Miller, P. Emotional reactions of patient, family and staff in acute-care period of spinal cord injury, Part I. Social Work in Health Care, 1977, 2, 369-377. Wolff, S. Children under stress. London: Penguin, 1969.

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Terminal Cancer: A Challenge for Social Work Carleton Pilsecker, MSSW, ACSW At the time of writing Mr. Pilsecker was a Supervising Social Worker at Veterans Administration Medical Center, Long Beach, California. SUMMARY. The social worker interested in providing service to terminally ill cancer patients and their families must begin with careful self-assessment and with clarity about her goals. The tasks to which she can then address herself are: helping her clients (1) explore their feelings and behavioral options, (2) communicate as openly as possible with their significant others, and (3) become aware of resources outside themselves. A fourth task is helping her co-professionals from other disciplines increase their effectiveness. “Advances in cancer control … have nearly doubled the survival of American cancer patients over the last four decades. One and a half million who have had cancer are alive and well” (American Cancer Society, 1975). Surgery, radiation therapy, chemotherapy, and immunotherapy are contributing significantly to effective treatment of cancer. Great energy and sums of money are being devoted to research which promises one day to cure and even to eradicate this dread disease. Thus there is hope.

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Hopefulness, however, is not usually associated with cancer. The initial reaction to a diagnosis of cancer is to be “scared to death,” i.e., scared of death. There are two good reasons for such a reaction: (1) in spite of the “advances in cancer control,” cancer remains the second-leading killer in this country and the death rate from cancer continues to rise (American Cancer Society, 1977), and (2) death by cancer is viewed as an ugly end to life. If you could choose your way of dying, would your choice be cancer? Probably not, for cancer is seen as an insidious, debilitating, painful, drawn-out process. Most people want to die one of two ways: either suddenly and with as little prior trauma as possible (e.g., a heart attack while at home, in bed, asleep) or peacefully and painlessly over a two to three month period in which life’s business can be put in order, goodbyes can be said, and a dignified withdrawal from living can be made (Schneidman, 1971). Cancer, by contrast, threatens to hurt, to lay waste, to lead to physical dependence, to spread indecently so that, at last, one may even lose control of the excretory functions whose conquest first starts us on the way to becoming civilized and of the mental abilities which give homo sapiens its glory and its name. The wishes of human beings seem often to have little influence on the operations of nature, so over and over again people are seized by cancer. Though less often than in the past, frequently the medical armamentarium developed to combat cancer fails. The dying that few would choose takes place. And in that dying time there may well be opportunity for the social worker to provide important help for there are crucial tasks which are amenable to social work intervention. 583

Before addressing those tasks, however, the social worker first needs to struggle with some basic questions.

Personal Reactions to Death How do I react to dying and to death? For many people, including health professionals, these are morbid, frightening events. Hospital staff have been known to shy away from terminally ill patients, to attend to them quickly and perfunctorily when unable to avoid them, to refrain from significant conversation with them. The past decade has seen a considerable breakthrough in awareness of the needs of dying people and their significant others and some noble efforts to meet those needs. But death remains awesome and foreboding to many; to be in close proximity to it produces anxiety; to be starkly reminded that mortality afflicts us all is disquieting; to have previously experienced feelings about the deaths of significant others resurrected is painful. Can I manage my fear and anxiety in the presence of death while retaining my respect for the person who moves ever closer to it?

Personal Reactions to Cancer What are my feelings about encountering the special sights and smells and sometimes twisted sounds emanating from the patient dying of cancer? Cancer and/or its treatments have a peculiar ability to produce results which are discomfiting to the senses. How do I feel knowing that I, as a social worker, cannot change those sights and smells and sounds—perhaps no one can—and that they are the products of a process which

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I do not like which I dread, which I do not want to touch me or those I love? When the cancer invades the brain and alters mental functioning, am I willing to try to sift through the confusion of words and phrases to find the patient’s meaning? Am I able to forgive myself when the confusion overwhelms me and I stay away for longer and longer periods of time?

Ability to Tolerate Uncertainty How well can I tolerate uncertainty and ambiguity? Certainly they are part of the daily experience of every social worker, but the situation of the terminally ill cancer patient seems to conjure up an extra measure of each. First, there is often much uncertainty about the course of the affliction. Mr. W, mid 40’s, had bronchogenic cancer which had widely metastasized. For weeks he hung on to a thread of life while the hospital staff wondered what kept him alive. On the other hand, Mr. S, early 50’s, had battled cancer of the face and neck for over two years, submitting to a series of disfiguring surgeries, maintaining hope in the midst of pain and isolation. But, though in relatively good physical condition, when he learned that the new lump in his chest was malignant, he died within two days. Then there is the ambiguity of the patient’s emotional state. Much effort has gone into the creating of conceptual schemes which ostensibly eliminate this ambiguity and make the patient’s overall course as well as his feeling state of the moment predictable. Kiibler-Ross’ five stages of dying (denial, anger, bargaining,

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depression, acceptance) (Kübler-Ross, 1969) is the most notable example. But patients have a knack for disrupting any schema, flitting from one emotion to another, challenging us to dare to discard our neat conceptualizations and find out what their feelings really are. Underlying the ambiguity is the fundamental fact that one reacts ambivalently to imminent death. Mr. O was a living illustration. At age 56 he was hospitalized with a cancer which had begun in his bladder and then spread throughout his body. He was well aware or his terminal condition. The loss of control of many bodily functions, the distress at being unable to engage in the work and play which had once given him considerable pleasure, and the necessary distortion of his family relationships caused by the disease had prompted him to extract a promise from his physician that nothing would be done simply to prolong his life. One day when I entered his room, he pointed to the intravenous tube in his arm and expressed his anger at his physician for having it inserted during the night while he slept. The tube represented a breaking of the promise that no barriers would be erected to his dying. Immediately upon telling me this, he looked at the apparatus and noted that it was not working properly. His reaction was a quick: “Call the nurse,” and as soon as the nurse arrived he informed her of the malfunction and relaxed only when it had been corrected. In those few minutes, Mr. O had dramatically expressed his ambivalence: I wish to die; I do not wish to die. He provides an important lesson.

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Social Work Goals Having decided that the anxiety and ambiguity, which cancer and dying evoke are tolerable and that the cancer process is not necessarily one of ugliness and agony, what, then, are appropriate social work goals? Should a goal be, for example, to contribute to keeping the patient and his family as calm and outwardly peaceful as possible? Or, in contrast, should a goal be to facilitate the expression and exploration of strong feelings, feelings such as fear, anger, frustration, depression, which some people call “negative”? Social workers seem to have less problem choosing the latter course than some other health professionals. Social work tends to attract people fascinated by tumultuous feelings; within social work the mental health world view is pervasive and offers continual encouragement to the ferreting out of such feelings. Yet even the social worker can be frightened by the depth of feeling which surrounds death, both within the patient and family and within herself. It may take several conversations with clients, proving that client and social worker can survive expression of these feelings, before the anxiety begins to abate. Not all social workers will agree, however, that the solicitation of the patient’s feelings about dying is appropriate. Ruth Abrams writes: “(As a result of) my study of the cancer patient at the terminal stage … I am convinced that the patient… should be permitted … to control his dying himself—to speak of it or not, as he wishes, without prompting… his caregivers must realize that perhaps it is they

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who wish to talk of death, even though the patient wishes to maintain silence” (Abrams, 1974, p. 77). The inflicting upon the patient of what are needs for oneself is a primary hazard for any helping professional. In any given situation a discussion of death between patient and social worker may spring primarily from the social worker’s inner demands. There is, however, strong reason for believing that, in this area, silence is more suspect than talk for the rule of our culture in general and of the health care system in particular is still that death is not to be discussed. Silence, then, may well reflect the patient’s bowing to what he believes is expected of him and, if this is the case, “prompting” may be necessary to help him realize that the rule need only apply if he himself so desires. Another question about goals is whether or not the social worker should help the patient and his significant others move in the direction of accepting the patient’s unhappy fate. A strong implication of Kübler-Ross’ stages of dying, for example, is that acceptance is the natural, appropriate goal. The helper will recognize that some patients, perhaps many, will not get there, but this will be a falling short, a less than optimum result. If, however, you believe that one should “rage, rage against the dying of the light,” (Thomas, 1973, p. 911) then your goal will be different: to permit the expression, in word and behavior, of that rage as long as there is energy to fuel it and you will see acceptance as a deviant maneuver. Social workers tend to be glib in response to this kind of issue. “Whatever the patient wants is all right with me. If he seeks to move toward acceptance, fine. If he wants to persist 588

in being angry, that’s fine, too.” What this overlooks is that one’s own priorities always influence the approach one takes to helping clients (Hardman, 1975). The only way to minimize this influence is to recognize what those priorities are. If, for example, you believe that an attitude of acceptance is the appropriate frame of mind with which to approach death, that belief will give some direction to your efforts no matter how eloquently you speak of client self-determination unless you bring the belief clearly into view and consciously root it out of what goes on between you and the client. A similar commentary can be made about the matter of whether or not we expect the patient to maintain hope for survival until the very end. There is a widely held belief that such hope is both ubiquitous and essential to a terminally ill person’s emotional well-being. Kübler-Ross writes: “… all our patients maintained a little bit of it (hope for survival) and were nourished by it in especially difficult times” (Kübler-Ross, 1969, p. 123). For the cancer patient this hope presumably is formulated in terms of a cure that will surface just in the nick of time or an unfathomable natural process that will cause the hated tumor to disappear. Another point of view, however, is that such “hope” is really an illusion which patients do not need nearly as much as those who deal with the patient. Perhaps it is the helper’s discomfort with the reality and finality of the impending death that creates the idea that a patient must continue to hope. Or its source may be the professional person’s need to keep death at a distance from herself. The decision you make about the naturalness and/or necessity of hope will influence your action. Holding the first view, you 589

will look for hope, encourage it, perhaps even try to plant some seeds if it seems missing. The other view will more likely lead you to try to learn if an expression of hope belongs to the real feelings of the patient (or family) or is his way of being nice to you, that is, by offering a commentary that he feels is expected of him.

Social Work Tasks Having begun to struggle with these basic questions, it is then timely to consider the social work tasks appropriate to the helping of terminal cancer patients and their families. In essence they are the same as those which pervade all of social work, regardless of the kind of client served or the auspices under which the services are rendered; that is, people are helped to make contact with whatever will enable them to more fully and more effectively carry out one or more of their assignments. Specifically these tasks are: (1) Helping patients and their significant others to get in touch with their feelings and to recognize their behavioral options. (2) Assisting patients and their significant others to develop and/or maintain meaningful communication with one another. (3) Aiding patients and their significant others in locating and linking up with resources beyond themselves. (4) Helping health professionals, whose activities impinge upon the patient and his significant others, to acknowledge their own feelings, to understand the feelings and needs of those being served, and to learn effective and sensitive ways of meeting the recognized needs.

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Getting in Touch with Oneself Once the social worker, in considering her goals, decides that it is worthwhile for the patient and those important to him to be given full opportunity to express and explore their feelings about the terminal cancer, one part of this task automatically follows. There is nothing automatic, however, about either the way it is to be carried out or the results which can be expected. Some patients and families effectively avoid taking notice of their feelings by denying the terminal nature of the patient’s cancer. In most cases the social worker will not want to challenge this denial but will want to be careful not to participate in it. There are few clients, however, who massively and continuously deny the illness and its attendant emotional turmoil. Most people, at least at times, admit to themselves what is going on within their body and their feelings (Weisman, 1972; Glaser and Strauss, 1965) but are selective about whom they will share these realities with. A patient’s silence, therefore, may not reflect denial as much as politeness or conformity to the taboo against speaking of death and dying, or his belief that the social worker could not possibly be interested in his struggles. To be most useful to the client, the social worker will do well to operate on three premises: 1. The client has a right to conceal or reveal whatever he chooses; 2. The client has a right to choose the person(s) to whom he will reveal himself (and being empathic 591

will not guarantee the social worker that she will be one of those chosen); 3. A clear invitation by the social worker will likely be important to the client’s decision to express himself freely to her. This invitation can be issued by (a) listening carefully to the client, (b) responding to the feelings and hints about feelings that come forth, (c) offering comments which explicitly state the expectation that strong feelings accompany serious illness; e.g., “Having cancer like yours can be pretty scary.” This last technique seems to be the kind of “prompting” that Abrams inveighs against (Abrams, 1974, p. 77), but it is often necessary to combat the broad cultural expectation of silence, the health-care system’s message that positive thinking and speaking are required of “good patients,” and the caricature of the social worker as someone interested only in providing tangible services. When does such “prompting” become the social worker’s projection of her own needs onto the client? The answer to this question is only available in interaction with the patient or family member. As a general guideline, I usually allow myself two sequential promptings before deciding the patient is not interested in sharing his feelings with me. Patient: I guess you know that my cancer is pretty far along. Social worker: Yes and I can imagine that’s frightening to you. (Prompting #1) Patient: Oh, I’m not scared. Social worker: My guess is that most people in your situation would be. (Prompting #2) 592

If that does not call forth a response describing emotions of some kind, then the usual conclusion is that the client is not willing to open up at this time. Part of the value of discussing feelings, particularly tumultuous ones, is the opportunity it provides to discover within oneself the ability to struggle with and obtain some measure of control over those feelings. “Though the cancer may kill me, the feelings won’t.” Alternative ways of thinking about one’s situation as well as more comfort-producing behaviors may also evolve from conversations about feelings. When Mr. C’s cancer finally metastasized to his brain, he occasionally had hallucinations in which he saw himself in places he had frequented when healthy. He could talk about how frightening these experiences were and, through the conversation, decided he could assure himself of being safely in his hospital bed when these hallucinations occurred by focusing on some specific pieces of the familiar hospital equipment which surrounded him. As in Mr. C’s situation, explorations of feelings and behavioral options are often intertwined. At times behavior in itself is a useful topic for discussion, enabling the patient to consider (1) how he wants to respond to his physical limitations, (2) means by which he can continue to exercise control over his life, (3) what treatment options are acceptable to him, and (4) the most comfortable ways for him to relate to his significant others and to health-care personnel. For family members, discussion of their options after the patient’s death can be an important preparation for the difficult time ahead.

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Communicating with Others Estrangement from others is a frequent concomitant of terminal cancer. The changes in the way the patient’s body functions, the alterations in his appearance, and the aura of dread which cancer evokes can create severe obstacles to the maintenance of consistent and meaningful contact between patient and significant others. It can be an important social work task, therefore, to help those involved to maximize beneficial interactions while accepting their own and the other person’s limitations. When the cancer has reached the terminal stage, the patient may have limited endurance and be able to tolerate only carefully restricted visitation. Emotional limitations may exist as well. Mr. A., for example, needed to decide whether or not he wished further visits from his former golfing partners. Although it felt good to him to be remembered by them, their presence evoked in Mr. A very painful feelings about never again being able to engage in his once favorite pastime. Family members at times need recognition that they have a life apart from the patient, especially when he is being cared for at home, which needs their time and guilt-free attention. Time spent together, however, is not usually the primary problem between the terminally ill patient and others. Rather, it is the kind of contact which they permit themselves that creates or reflects difficulties. “Let’s pretend,” is a common theme. “Let’s pretend that you are not going to die.” “Let’s pretend that I, the patient, don’t know about the deadly force which holds me; after all, the doctor hasn’t really said there’s no hope.” “Let’s pretend that by smiling and talking

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positively and saying what good care the healthcare professionals provide and taking note of all the flowers and get-well cards and not mentioning cancer and definitely not talking about death, all of us will come through our meetings together unscathed.” The personality, life-style, and past relationship of patient and family members may make such pretending the only way they can deal with one another while the patient is dying. Then the social worker need not set herself to undo a lifetime of fixed behaviors. Frequently, though, patients and their family secretly wish to be able to share with one another their hurts and hopes, their frustrations and fears, their wishes and wonderings, but are blocked by a need to protect the other person as well as a concern that they themselves will be overwhelmed if they once open the door on the feelings and questions that surge within. In such situations the social worker may be able to help her clients express the wish they harbor and support them as they then, with trepidation, begin to talk and plan candidly with one another. Occasionally a very small amount of social work input can contribute to a considerable change in the way a patient and his significant other interact. Mrs. B, for example, told the social worker that she well knew that death was imminent for her husband who was hospitalized with lung cancer. Her distress was compounded by the fact that she had no idea what kind of funeral or burial arrangements he wished, “Of course,” she said, “I can’t talk with him about this because then he will know that he is dying.” The social worker’s brief comment that he and Mr. B had frequently talked together about Mr. B’s dying was a revelation to Mrs. B which enabled her to talk openly with her husband about the situation they faced, to the relief of both. 595

Resources Connecting clients with community resources is a well-recognized social work task. It can be carried out to the benefit of patient and family whether or not they allow the social worker to help with their feelings, behaviors, and relationships. Home-health agencies, American Cancer Society programs, self-help groups, financial assistances, and whatever other supplies and services the local community have available can be important means for maximizing the well-being of patient and family. Another kind of resource for some patients is the formal opportunity for expressing wishes about the prolongation of their lives. California, for example, in 1976 became the first state in the nation to enact a law giving a terminally ill person a means by which he could direct his physician to refrain from using life-sustaining procedures when they “would serve only to artificially prolong the moment of my death and where my physician determines that my death is imminent whether or not life-sustaining procedures were utilized …” (California Health and Safety Code, paragraph 7188). Subsequently a number of other states have passed similar legislation (Friedman, 1978). Where such legislation has not been passed, a document such as the Living Will (Euthanasia Educational Council, 1974), although generally considered not legally binding, has the potential for guiding a physician, where he has discretion, to minister to the patient in a way compatible with the patient’s desires when the patient can no longer express those desires.

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For some patients, putting them in touch with religious resources meaningful to them can be a useful service. Calling the local minister or the hospital chaplain is an appropriate action for the social worker when it springs from the wishes of the patient. Wary of inflicting a religiously-oriented visit upon an unreceptive person, social workers sometimes miss seeing that such a visit may provide considerable solace and support. Along with other resources, it is one that needs to be kept in mind and offered as an option to the patient. Occasionally, however, a social worker will make a too quick referral to the clergy. The fact that a patient raises crucial existential questions such as: “Why is this cancer being visited upon me?” or “How can such a terrible affliction fit into a good God’s plan?”, does not necessarily mean that calling in a religious professional is indicated. Such questions may reflect a need to ventilate some of the feelings that accompany the patient’s dire circumstances or a need to struggle through to his own answers or his own recognition that for him there are no answers. In either case the task is one that well fits within the purview of social work provided the social worker is clear that it is not her responsibility to provide answers. When the feelings have been expressed and the questions wrestled with, if the patient then wishes to hear the answers contained within a particular religious framework, the appropriate clergyperson can be sought.

Health Professionals An increasing number of health professionals are finding themselves having significant contact with terminally ill patients and their families as health services are more and

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more provided to seriously ill people in their homes and as dying is transferred from the home to the hospital or nursing home. That many health-care personnel have a strong interest in learning about what was once a “taboo topic” (Faberow, 1963), is evidenced by the proliferation of workshops, courses, and writings on death and dying. Social workers have both informal and formal opportunities to contribute to their co-workers from other disciplines becoming more aware of their feelings in this area and knowledgeable about sensitive ways of meeting the needs of patients and families. Impromptu conversations, ward rounds, staff meetings, and educational programs can be vehicles for social work input. With social work leadership, some hospitals have developed a Thanatology Committee of multidisciplinary membership, one of whose charges may be to provide education for the staff. The imaginative social worker, then, can find a variety of ways to contribute to the growth of her co-professionals. There is a danger in assuming these several tasks: that continued immersion in the tragedy of terminal cancer may exact a heavy emotional toll from the social worker. The specter of possible burnout is ever present. The courage of patients and families and the love and concern shared by them will help diminish the drain on the social worker, but she will still need to be well aware of her own limits and of her own personal resources for renewal. For many people cancer proves to be a deadly enemy. The social worker who is willing to work with patients engaged in this final struggle, and with their families, has some important questions to begin to answer, some difficult self-assessments to make, and some vital tasks to perform. 598

Notes A shortened version of this paper was presented at a conference for social workers sponsored by the American Cancer Society in Los Angeles on June 23, 1978. Reprinted from Social Work in Health Care, Volume 4(4), Summer 1979.

References 1 Abrams, Ruth, Not Alone with Cancer, Springfield, III.: Charles C Thomas, 1974. 2. American Cancer Society, “Cancer Research: Increasing Survival” (pamphlet), 1975. 3. American Cancer Society, 1978 Cancer Facts and Figures, 1977. 4. California Health and Safety Code, Division 7, Part I, Chapter 3.9 (Natural Death Act). 5. Euthanasia Educational Council, “A Living Will.” New York, 1974. 6. Faberow, Norman L., editor, Taboo Topics. New York: Atherton Press, 1963. 7. Friedman, Emily, “‘Natural Death’ Laws Cause Hospitals Few Problems,” Hospitals May 16, 1978, Vol. 52, pp. 124-130. 599

8. Glaser, Barney and Strauss, Anselm, Awareness of Dying. Chicago: Al-dine Publishing Co., 1965. 9. Hardman, Dale G. “Not with My Daughter, You Don’t!”, Social Work, July 1975, Vol. 20, No. 4, pp. 278-285. 10 Kübler-Ross, Elisabeth, On Death and Dying. New York: The Macmillan Company, 1969. 11. Schneidman, Edwin S., “You and Death,” Psychology Today, June 1971, Vol. 5, No. 1, pp. 43-45. 12. Thomas, Dylan, “Do Not Go Gentle Into That Good Night,” in Elfman, Richard and O’Clair, Robert, editors. The Norton Anthology of Modem Poetry, New York: W. W. Norton and Co., 1973. 13. Weisman, Avery D., Dying and Denying. New York: Behavioral Publications, 1972.

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The Case of Ann: A Sleep Disturbance in a 3-Year-Old Child Emily Hancock, MSW At the time of writing Emily Hancock, previously a pediatric social worker at Children’s Hospital Medical Center, was a doctoral candidate in the Human Development Program, Harvard University Graduate School of Education. The case material in this paper is drawn from the Early Childhood Program, Children’s Hospital, and was earlier discussed at the 54th Annual Meeting of the American Orthopsychiatric Association, New York City, April 1977. SUMMARY. Ann, a 3-1/2-year-old girl, was brought to a pediatric clinic for a chronic, severe sleep disturbance which had precipitated a serious family crisis. A developmental interactional approach was used by the pediatrician and a social worker who evaluated her case; the problem formulation included a reciprocal separation issue between Ann and her mother. Over a 2-month period, dynamic casework around the behavior problem revealed an unresolved grief reaction. Intervention resulted in resolution of the sleep disturbance and an untangling of the relationship between Ann and each of her parents.

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Ann’s Behavior at 3-1/2 Ann, 3-1/2 years old, had a marked, severe sleep disturbance. She woke nightly at about midnight, and stayed awake until 3 or 4 in the morning. She came to her parents’ bedroom, wanted to play in bed with them, and had temper tantrums, choking and vomiting in response to various measures they took to get her back to bed. Spanking her, bribing her, talking with her, threatening her, reassuring her, or getting her what she wanted were fruitless maneuvers, leading to defeat and guilt in the parents. The only “successful” method of getting her back to sleep was for mother to sleep with her in her bed. The situation was further complicated by the birth of a new baby brother, 4 months old, who slept in Ann’s room. The parents disagreed about how to handle the sleep behavior, were mutually antagonistic and critical, and finally made an appointment for evaluation at Children’s Hospital Medical Center. Ann’s father worked as a chef from 11 a.m. until 11 p.m. He needed a full night’s sleep, and it was Ann’s habit to wake up just after he got to bed. Her timing demonstrated how astute she was in manipulating both parents, and in locating the Achilles’ heel of the family. Her parents felt angry with her, had become nervous and hostile with each other, and questioned whether or not they still loved her. She had become the focal point of serious conflict, and father felt that mother chose Ann’s side against him and his needs. Finally, frictions were at a crisis level; father had separated from the family a few months earlier, and the family had taken an emergency vacation in Florida. Bringing Ann to the clinic was a desperate measure for them, a last-ditch effort.

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As an infant, Ann’s sleep had been somewhat irregular, with periods of whimpering during the night. She had not established a good sleep pattern, and mother overreacted to her temperamental irregularities. She was always afraid something would happen to Ann, that she would lose her. Mother was always involved in Ann’s falling asleep; Ann had never used her own resources in settling down, comforting herself. Mother also feared that Ann would choke during feedings, and her anxiety increased when food allergies developed. Crying during a colicky infancy worried mother, and made her feel that something was very wrong. Father sensed that mother’s energy was swallowed up in coping with the baby in a way he had not anticipated, and could not influence. In the 5th month of pregnancy, Ann’s maternal grandmother had suddenly become ill and had died. Mother still felt the loss acutely, when mentioning it during the clinic evaluation. Both the pediatrician and the clinic social worker felt that this loss during pregnancy played a role in setting up the anxious interaction between Ann and mother.

An Interactional Pediatric Problems

Approach

to

The Early Childhood Program Sleep irregularity is often brought to the attention of the pediatrician, whose ingenuity as a detective comes into play in decoding its meaning, its message, and its resolution.

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The Early Childhood Program has taken up the gauntlet in response to this and other serious behavior problems that have not yielded to the usual goodwill, intuition, and resourcefulness of parents. It is the outpatient diagnostic component of the Child Development Unit headed by T. Berry Brazelton, MD, Children’s Hospital Medical Center, Boston. The clinic is staffed by pediatric fellows, whose expertise is in assessing and promoting the cognitive, social, and affective development of infants, toddlers, and preschoolers between birth and 4 years of age. Their objective is to evaluate and help parents understand the developmental issues of early childhood, with special attention to interactional elements and meanings of behavior. Attachment and autonomy, and their interplay, are considered with regard to the child’s need for relationship and individuation. The infant is viewed as an organism predisposed to attachment, with various behaviors suited to engaging his parents. The impact of the baby and his own temperamental characteristics on his parents is taken to be a primary factor in shaping the emergent parent-child relationship, parent behavior, and the family dynamic. The parent-child unit, with its mutual personalization, differentiation, individuation, and reciprocation is considered in the pediatric assessment. The working contract between the pediatric staff and the parents is formed around parental concerns. The parents’ knowledge of the understanding of normative developmental issues and their dynamics to push through the current impasse.

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In the program, each child is seen by a pediatric fellow, who consults with another team member, a psychiatrist, psychologist, clinical social worker, clinical specialist in nursing, or senior pediatrician. If the challenge is to demystify the child’s behavior through information, the pediatrician becomes the parent’s agent in assessing and interpreting the child’s behavior. When the knot in the interaction seems to be primarily around an emotional issue, evoked by or manifest in the child’s development, the clinical social worker is enlisted by the pediatrician, either to work conjointly or accept temporary transfer of care. The goal of the work with both child and parents is to release positive parenting behavior, to get the child and parent unstuck in their interaction, to catalyze growth and development in the family process. It does not center on the character of the parent, or address adult personality problems per se. It proceeds on an understanding of the child’s physiology, temperament, the issues of his current psychosocial stage, and interpersonal needs for engagement and individuation.

Sleep Behavior in Infants and Young Children A baby’s sleep is of pressing concern to the parent. The ability of the child to sleep for at least one prolonged period without waking has critical importance to parental functioning and early adjustment. Although there is some variation in the age at which this occurs, “settling” is usually accomplished by the 16th week of life, with alternating periods of light and deep sleep (Parmelee, Wenner, & Shulz, 1964). Central nervous system maturation is considered a

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fundamental factor; neurological maturation is noted around the 3rd month (Anders & Weinstein, 1972). Temperament, defined by Thomas, Chess, and Birch (1968) as a collection of various innate qualities, differentiates one baby from the next. It is the “behavioral style of the individual child—the how rather than the what… or why” of behavior (p. 4). It is an influence on the child’s personality and development, on how each child travels the path of universal, predictable milestones. Rhythmicity, the regularity of repetitive biological functions including sleep and alert states, is one component. Both temperament and neurological maturation are intrinsic properties important in the establishment of sleep rhythmicity, and they affect the person-environment of the child.

Sleep, Separation, and Autonomy Sleep is an autonomous function throughout life. Before birth, each pregnant mother faces the fact that her sleep pattern and that of her baby may be disjunctive. Many nights, the baby “wakes up” to move around just as the mother is getting to sleep; their cycles are out of synchrony as often as not. After birth, the same dissynchrony continues. The parent may be desperate for the baby to quiet and sleep, and yet cannot sleep for the baby; no one person can sleep for any other. For the child past 6 months of age, many developmental factors must be taken into account in evaluating and understanding poor sleep patterning. Central among them is the unfolding of the separation-individuation process, between birth and 2 years. As Mahler (1972) delineates, the bond to the mother becomes specific, and mutual attachment 606

flowers in the 1st year. Mobility develops, permitting deliberate moving away. Separation anxiety is heightened in response to the sudden distance the child is able to put between himself and his parent. New motor developments reflect biological thrusts toward autonomy; mobility opens up a whole new phase between the baby and his parents. Autonomy struggles intensify with the child’s insistence on independence and choice. Self-regulation and dependency clash. Compliance is scarce on the battlefield at this new juncture, as boundaries are staked out and defended by this short warrior. Sleep is as much an expression of “separate” behavior as mobility, if less obviously so. It involves a loss of connection with others, a giving up of conscious connection. In the 2nd year, the child’s investment in the outer world and its stimuli, especially the parent, becomes more intense; it is harder to pull away for the solitude of sleep. Separation anxiety during this phase of ego development is noted by Nagera (1966), Mahler (1972), and Anna Freud (1965, p. 158) as a powerful dynamic predominant until object permanence and object constancy are established around the 2nd birthday. During the separation-individuation process, disengagement for any purpose is reluctant; vulnerability to separateness is high, and sleep problems are a common response. Fraiberg (1950), in an early study of sleep disturbances, observes that if the anxiety around separation is not mastered, it is carried forward through the next developmental level and compounded. A sleep problem that develops during this time becomes overdetermined, as it is carried through successive phases, and takes on progressively different psychological 607

meanings for the child and for the family. The effect is cumulative and encompasses earlier stages (Nagera, 1966). The ordinary, daily capacity to fall asleep, then, involves separation on several levels. It depends on neurological organization and differentiation between sleep and alert states, and a temperamental tendency to establish rhythmic patterns. It includes an acceptance of separateness from the parent, and trust that physical absence does not spell oblivion. It involves a physical and concrete parting for an autonomous, unshared function. It involves a withdrawal of interest from the outer world and its loved figures. It is replete with meanings that revolve around the child’s growing sense of psychological separateness, of his individuation. Ordinarily an easy function, it becomes an easy medium for culturing trouble around the normal issue of separation.

Parallel Parent Development Séparation-individuation is not a unilateral phenomenon; it is a pivotal, shared process. The child’s impetus toward autonomy comes from within; the mother’s comes from the child: Parent development follows infant development. The baby’s thrust toward biological independence is more definite and discrete than that of the parent. It is describable, concrete, even measurable in new skills, accomplishments, and abilities. Baby competence rests on motor competence in the 1st year. Parent competence develops without benefit of such concrete foundations. It is far more abstract. Yet it is tied to infant development, as each phase of the infant touches off change 608

in the parent. Altering one of the coordinate points changes the boundaries and the gestalt. The parent and the child evolve together, as the parent responds to the baby’s responses to internal biological challenges. They are synergistic, they mesh in development, like rotating gears. They develop from two organisms in one, coterminus during pregnancy, through the sudden separation of delivery, to the dependency of early infancy, toward the inescapable sense of separateness that comes with motor milestones and ego development. At birth, mother and child separate for biological functions. The baby assumes his own breathing and relies on his own systems. Physiological self-reliance and separateness at birth are inevitable for the baby. For the parent, the inevitable is in the context of a psychological awareness, a galaxy of feelings. The rapid changes evoke a sense of loss as well as one of gain, as unity and “oneness” give way to separateness and “otherness.” For the child, early developmental steps create a sense of gain and mastery; for the parent, an incipient sense of loss shadows the gains. The child’s mobility, his new power to initiate separation, is a disruption in the balance of distance and power rarely traversed with equanimity. Fielding the child’s autonomous behaviors touches off questioning of the adult’s current state of self-development and autonomy (or dependency) as well as challenging parental control. Such a process cannot help but generate a review on some level of the parent’s own infantile attachment, and the separation process previously negotiated with his or her own parent in early life, reviving unresolved issues.

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Parental ambivalence peaks during the toddler period, and it is not unusual for it to become manifest in ways of handling bedtime and sleep (Brazelton, 1974). To the extent that it is present, the child is forced to deal not only with its own developmental conflicts about separating, but its disruption into the empathic flow between mother and child or any other pair. Ambivalence is in its own way an absence, as it captures emotional energy and diverts it. When it is a prominent part of the shared emotional landscape, it exerts a subtle but potent influence on evening parting. When ambiguity in the tone of the relationship and its mechanics is heightened, reassurance is clouded and incomplete, and the child has a fluctuating object to react against, rather than a stable one. Beyond expressing developmental conflict or parental ambivalence, a sleep problem may also be the child’s reaction to any number of parental or family disruptions. Nagera (1966) notes that a mother’s tension, depression, or ambivalence toward the child can trigger sleep difficulty. Yet no parent is free of them. Inasmuch as the child’s sleep problem elicits a complex emotional and behavioral response in the parent, the disturbance is embedded in an interactional field. The symptom may begin innocently, and continue through specific reactions and conflicts. It may grow to have differing functions and meanings as the child matures. The conflicts of this period, and the resultant struggles, are as typical for the parent as for the child; turbulence, trial, and error on both sides are woven into the bridge between unity and separateness in the parent-child relationship.

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With such a plethora of issues and notions as possibilities in any one sleep disturbance, the pediatric clinician is at the mercy of the investigative process in determining its meaning. Terminology and theory give only starting points; they do not disclose what the trouble is, what lies behind the feeling, what the feeling and its manifestation mean. The separation-individuation material gives a rudimentary map, one that was used as a clinical guide in approaching the case of Ann.

The Case Initial Formulation Ann’s general development was excellent. She was on target cognitively and socially, and demonstrated many personal and interpersonal strengths. Her control in the sleep area had spread to a general modus operandi of tyranny. She manipulated her parents; parental authority had been lost, and parental esteem was at the nadir. There seemed to be roadblocks to the inner thrust that would normally precipitate a push through the bedtime struggle. Something interfered with Ann’s natural maturation, and the small, ordinary departures that growing up entails. By history, Ann’s early temperamental irregularity had amplified her mother’s anxiety over her health and survival, establishing a mutually anxious attachment that invaded the interaction and interfered with the separation-individuation process. Ann and her mother were intertwined through her sleep pattern; neither could claim separateness in this area.

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The whole family had been swept into the wake of the problem. In fact, Ann’s sleep pattern now seemed to address father’s schedule and his need for sleep, and effectively ensured that the parents would not sleep together. The family was split, and the development of each of its members compromised by the situation. Their helplessness heightened their ambivalence toward her, and their confession that they felt they no longer loved her was painful. Ann’s sleep disturbance had begun in early infancy and persisted through each successive developmental phase. There was no doubt that it was overdetermined, and that its evolution included varying purposes as she progressed. This was true for the parents also— their feelings, reactions, perceptions, and the meanings they drew from the sleep disorder had evolved. Threads of current concern and behavior could be traced back with little difficulty. But what did Ann’s behavior mean in terms of engaging, separating from, and responding to her parents? The challenge was to penetrate this myriad complex in a pertinent, effective way. Because it was felt that the loss of Ann’s maternal grandmother during mother’s pregnancy had influenced the attachment and separation process between Ann and her mother, the pediatrician referred the case to the clinic social worker for therapeutic intervention. The sleep disturbance was viewed as a family crisis involving both parents. An initial decision was made to see the parents together to avoid further marital disunity, and to provide an optimal situation for catalyzing work between them. Clinical interest was in learning more about how the confluence of mother’s loss and Ann’s early and present behavior fit together and made sense. 612

The Contract Control was the present area of conscious pain, both parents were squarely involved in a battle for esteem around the issue, and it was what they wanted help with. Weekly interviews were offered to them, to look at what was interfering with their authority. Neither parent had ever had “counseling,” and both found it alien. Mother was hesitant; father prevailed in making the first appointment and getting mother to attend.

The Process Interview No. 1–“Taking Charge” During the first interview, Ann’s parents spoke passionately of their fear that they had no impact on her behavior. They felt that she had control over each of them. She seemed to be the most powerful figure in the family, capable of provoking them in ways they could not tolerate. Their helplessness in the face of this small child escalated with each successive defeat; each day their animosity built until they feared they could no longer contain it. They did not know what might happen. They became conscious that their concern went beyond being able or unable to control Ann; it extended to whether or not they were going to be able to control their own anger. Selfcontrol and self-image were at stake, as well as the integrity of the family. Much anger was ventilated, and much anxiety was raised and verbalized in this interview. I drew out of this material their wish to be in charge, to be the family authorities, to “take charge” of themselves and their 613

family life with Ann. We agreed that taking charge, and parental control, were ordinary expectations. They wondered, and I with them, how such a little person had become such a giant in their family, and what kept them from sensing their position of authority and their ability to assert themselves in a simple straightforward way. We began to look for clues to the interference. They expressed repeatedly that it did not make sense, that the whole situation had gotten away from them, that there was no explanation for it. Ann’s parents left this interview making efforts to develop a plan for dealing with her night waking. The plan included what they would say to her, what they would do, and what each would do if the other began to waver. It was the first attempt at mutual support they could remember.

Interview No. 2–“Ann Is Special” A week later, they returned. We picked up where we had left off in our joint investigation into the mystery of control, and its mastery. They had been thinking about it. Mother felt that she could not get control of Ann because she had special feelings for her. She had been afraid Ann would be injured as a newborn. In her family of origin, she had been the baby herself, with 13 older siblings. As the youngest child, she had been special to her mother, extremely close to her. There had been that same feeling of special closeness to Ann when she was bom; Ann was special to her. I commented on the special closeness, and asked mother if she still missed her mother. With great hesitation and difficulty she expressed that she had never wanted to lose her. 614

She had been grief stricken when her mother suddenly became seriously ill during her pregnancy with Ann. I asked her to describe that time. With encouragement, she said she had been terrified that her mother would die. She said she had never told any living soul that when her mother became ill, she prayed and prayed that her mother would live, and asked God to take her baby from her instead of her mother. Within hours, she began uterine bleeding, went into a threatened abortion, and was hospitalized and warned that the pregnancy might terminate. That day her mother died. She was overwhelmed with guilt at the time, and at the retelling. My support centered around the pain of losing one so close, and one so special to her, and the understanding of such a wish. Mother’s relief at finally letting go of her well-kept secret was marked. Her husband responded to what she described with quiet sympathy, comforting her in her pain. His acceptance of what she had wished was most meaningful to her. It weighed far more heavily than any response on my part. The support of a spouse in this situation is so deeply touching that the worker seems almost superfluous. The interview concluded with comments about the need a person feels to stay close to someone special, and not to be parted.

Interview No. 3–Father’s Family Needs A week later, father attended the interview alone, as mother had a strep infection and was at home in bed. Father vividly described the anger he had felt first toward Ann, and second toward his wife for perpetuating the sleep problem. He felt that the counseling focus around control issues had allowed him to exercise his authority, to be more confident and firm in

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insisting that Ann stop disturbing him and his wife in the middle of the night. He and mother had become quite clever at noticing when one or the other was beginning to waver or get discouraged with Ann, and needed help in being firm. By taking over for each other at these points, to handle Ann’s waking, he felt that they had given each other a lot. Additionally, both of them were getting more sleep. Father felt that his feelings for Ann had taken a turn, and he could enjoy her for the first time in over a year. He described a weekend afternoon when he had taken her out alone. Ann had been up to her old demanding tricks. Father drew the line, she capitulated, and they managed to have a pleasant afternoon. For father, a sense of confidence and hope began to replace former feelings of defeat and helplessness. He said that his wife felt similarly. I supported this newfound authority and positive posture. Father spoke of his hope that he and his wife could retrieve their former affection for each other. He spontaneously described his family of origin, distant relationships with his parents and siblings, a yearning for closeness. When he had met his wife, he sensed the close bonds in her family. He was beginning to hope again that they might capture some of that feeling, as they now seemed to be moving ahead, making progress.

Interview No. 4–Final Connections; Symbolic Substitutions The next 5 weeks brought cancellations due to holidays, weather, and illness. When her parents were seen again, Ann

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had made dramatic progress. Instead of waking each night for long periods, she was waking about twice a week, was independently getting up and going to the bathroom, and was not disturbing her parents. They were relieved and grateful that the problem had been solved, and it was clear that they expected this to be their final appointment. I knew that it was my last chance to take them one step further in their sense of what the trouble had been. I risked an early interpretation and asked mother if she felt that part of the problem with Ann’s waking had had anything to do with her fear of losing Ann and being apart from her. She responded that she felt that keeping Ann so close to her had been a way of creating the same special closeness she had had with her mother. This had avoided a final parting with her; as long as she could repeat that special relationship, she could postpone feeling a devastating loss, her death. She had feared that her wish would come true, that God would take away her baby instead of her mother as she had prayed. She had hovered over Ann to prevent this from happening and was especially anxious when Ann slipped into sleep. Her guilt had been a tremendous burden in the relationship. She had been able to detour around a last goodbye, at a high price to them both. Mother said, “For the first time, I feel that I can be with Ann without a picture of my mother between us.”

Notes on the Process The natural process and development of attachment and separation in this family had been riddled with interference. The sleep disturbance in Ann had begun in early infancy and persisted through various developmental phases. Separation

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anxiety prevailed as the dominant dynamic between mother and Ann, affecting the balance of family control, and the development of self-regulation in the child. Her age-appropriate preoccupation with manipulation added force to this situation, complicating an already complex picture. Separating from Ann, difficult in itself for this anxious, dependent mother, was made impossible by Ann’s function of keeping her close to her own dead mother. Her fears about loss and death were peaked by the normal separation process and added specific anxieties to it. Mother’s unresolved grief was an added element in the interaction. Permitting Ann a sense of emotional separateness had many frightening meanings. During her treatment, it was possible for mother to make these connections, and to see that keeping Ann close had been a way of avoiding a final parting with her mother. The loss mother suffered during Ann’s gestation, and her guilt over the wish that her baby be taken as a substitute, set the stage for an unconscious substitution between her mother and her daughter. Her anxious closeness to Ann let her keep the wish repressed, kept it from coming true (i.e., kept Ann alive), and symbolically kept her mother close through Ann’s closeness. Mother’s inability to say good-bye to her mother in death was played out again and again through an inability to say good-bye to Ann at night. Father, whose parental authority had been threatened, and who feared the loss of his family and the closeness it spelled for him, felt a new empathic response to his wife as he learned of her fears and feelings. Their mutual exploration into and efforts against the sleep issue permitted strengthening of positive bonds between them. As they 618

became more effective in working it out, optimism and positive feelings grew between them. Parental firmness became simpler, and the skewed balance of control was worked out. Ann’s parents turned to a pediatric medical center for help with her problem. They felt that this was a childhood problem with which they could logically expect pediatric help. Their feelings toward Ann, and their relationship with her, were of concern to them; the rift in the family had developed around her sleep disturbance. Both saw the problem as a pediatric issue, to be treated in a pediatric facility. A psychiatrist or mental health center was outside this family’s frame of reference, miles beyond their ordinary experience. Engaging them in the work was possible only because I was part of the pediatric team, seen as part of the pediatric hospital and clinic. This strategic position enabled an alliance with this family’s strengths and their readiness for change. Our special knowledge about the separation-individuation process allowed us to move ahead with them. Sticking with an interactional framework kept the parents’ focus on Ann and the sleep problem; their associations were continually related to the signals between them and Ann, and the meaning of her behavior within the relationship. Alliance with the conscious need to be in charge encouraged the parents’ motivation and proved to be a good cognitive tool for helping them begin to look further. The time frame was kept within Ann’s lifetime. Ann remained the subject of the interviews throughout. Using the present symptomatic behavior to amplify and target available feelings helped to reach into the meaning of sleep, of ambivalence and control, of separation and fear of loss. Separation was clarified as the 619

central, pivotal issue. The result of this “developmental guidance” (Fraiberg, Note 1) was a decontamination of the relationship between Ann and mother, resolution of the family’s crisis, and a restoration of family unity and progress. Without treating parental personality problems, the pediatric framework permitted these parents to extract their own issues from Ann’s, and resume a less encumbered relationship with her. The progress of the case was dramatic. It cannot be explained by what I saw, felt, or participated in. It was a phenomenon in its own right, and spoke of the magic of experience between people, as well as that within a person. An ordinary couple, an ordinary child, with an ordinary problem, made extraordinary, stunning gains. Some parts of the work, the lesser parts, are clear. The greater parts are hidden in the interstices. The elements of the work matter less, their mingling more. What is “known” here is so much less than that which stays unseen and mysterious. Writing it down is only an effort to capture an ephemeral release of health, an event of much importance. Follow-up with Ann’s family at 3 months, 6 months, 1 year, and 2 years verified the lasting resolution of her sleep disturbance.

Note Reprinted from Social Work in Health Care, Volume 3(3), Spring 1978.

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Reference Note 1. Fraiberg, S. Social work, psychiatry and infant mental health. Paper presented at the meeting of the National Association of Social Workers, Boston, October 14, 1976.

References Anders, T., & Weinstein, P. Sleep and its disorders in infants and children: A review. Pediatrics, 1972, 50, 312. Brazelton, T. B. Toddlers and parents, New York: Delacorte Press, 1974. Fraiberg, S. On the sleep disturbances of early childhood. Psychoanalytic Study of the Child, 1950,5, 285. Freud, A. Normality and pathology in childhood. New York: International Universities Press, 1965. Mahler, M. On the first three sub-phases of the separation-individuation process. International Journal of Psychoanalysis, 1972, 53, 333. Nagera, H. Sleep and its disturbances approached developmentally. Psychoanalytic Study of the Child, 1966,21, 393. Parmelee, A., Wenner, W., & Shulz, H. Infant sleep patterns from birth to 16 weeks of age. Journal of Pediatrics, 1964,65, 576.

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Thomas, A., Chess, S., & Birch, H. Temperament and behavior disorders in children. New York: New York University Press, 1968.

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Family Treatment in the Health Setting: The Need for Innovation Beth Kemler, PhD, LICSW At the time of writing Beth Kemler was Chief of Social Work, Judge Baker Guidance Center and Psychiatry Department, Children’s Hospital, 295 Longwood Avenue, Boston, MA 021 IS; Assistant Professor, MGH Institute of Health Professions. SUMMARY. While the important role families play vis-à-vis illness is generally recognized, there are relatively few clinical encounters with entire families reported by social workers in health settings. Some of the possible explanations for this are examined, with a recommendation for the design of interventions based on a family systems perspective. Two areas requiring further investigation are highlighted: the element of uncertainty which confronts families coping with chronic life-threatening illness and the impact of serious illness on children. By conceptualizing new ways to help families adapt, social workers can make a significant contribution clinically and reaffirm their position in this domain.

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Introduction Caroff and Mailick (1985) have developed a rich conceptualization of clinical practice within a health setting, and their proposed paradigm provides a useful framework for case evaluation and treatment. They acknowledge the important role played by ego psychological theory in the conceptualization of clinical work with patients, while concurrently recognizing the limitations of this theory for the numerous types of services social workers in health settings are requested to perform. Given the multiplicity of functions expected of social workers and the highly complex, multi-disciplined nature of the setting in which we practice, no one theoretical framework can adequately inform our practice. This paper focuses on the contribution a family systems perspective can make to a more comprehensive formulation.

Family Systems Model Family systems theory is just one of a number of possible additional frameworks through which to view our work. This theory better enables us to comprehend the multiple factors impinging on a patient. While ego psychological theory is based on a linear mode of thinking (cause and effect, A leads to B), a circular mode of thinking, as posited by family systems theory, encourages an appreciation of the reciprocal interactions existing in complex systems. In this model, a change in A effects B, which in turn feeds information back into the system creating further change; a change in one place thus reverberates throughout the system (Penn, 1982; Selvini,

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Boscolo, Cecchin, & Prata, 1980). This perspective widens the lens through which we view situations we are called upon to deal with in the hospital. Depending on the referral, we may intervene at the level of the patient, the family, the hospital milieu, the wider community, or any combination of these, recognizing that an impact at one point will no doubt have a reverberating effect throughout the system. In this paper, our attention is directed to interventions at the point of the family. As noted, the actual number of encounters with families as a whole is a relatively small percentage of the many interventions provided by social workers in health settings (Berkman & Clark, 1980). While we all recognize the important role families play vis-à-vis illness (in terms of the onset of stress-related and psychosomatic illness, the course and management of any illness, and the impact illness has on family life), there is strikingly little actual clinical work with families as a whole. Perhaps this small number of reported family interventions simply reflects the problem of defining family treatment. There has been such a proliferation of models, that many very different techniques are now subsumed under the rubric of family therapy. Must one see an entire family together for the work to be considered family therapy? Bowen developed a model of family treatment in which often an individual, frequently the emotionally strongest of the family members, is seen and “coached” by the family therapist to interact in new ways with other family members, thereby bringing about change in the family system (Bowen, 1976). Bowen, a psychiatrist, has worked for years in a medical hospital helping very ill patients and their families deal with death and dying (Bowen, 625

1976). It may well be that his hospital experience influenced the evolution of his thinking about family interventions. Watzlawick and Coyne (1980) describe their successful brief family treatment of a case of depression in a 58-year-old man who had suffered two strokes. Interestingly, the identified patient did not attend any of the five family sessions, but the intervention directed at the other family members helped to alleviate his depression. These two diverse examples illustrate that what now constitutes family therapy is very broad, and that the thread which seems to connect the different approaches is the systemic point of view or epistemology. What social workers have been struggling with professionally, in terms of both clinical practice and training, is how to integrate the ego psychological perspective with the systemic view, and more specifically, how to do this within a model well suited for issues revolving around medical realities. This is neither an easy task nor one which has adequately been accomplished. Yet those social workers who practice in medical settings are in the ideal position to formulate new and more effective methods of family therapy focused on health issues.

Family Treatment in Health Settings Social work in health settings has made great advances in the last decade, both in terms of how we are viewed by other professions within the hospital, and at least as importantly, how we are seen by our social work colleagues in other settings. It is now time for social workers in training hospitals, where emphasis has traditionally been on research and innovation, to be more active in developing new

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treatment models. We have for too long allowed other disciplines to define our models of practice. It would be a mistake to permit this to continue, especially in the area of family dynamics where we are more experienced and knowledgeable than most other clinical disciplines. This call for innovation is made with full recognition of the pressures on all of us which could make the mere contemplation of research and evolution of new ideas feel overwhelming. Scholarly work requires time and energy, commodities which are in short supply these days in all health settings. The irony is that our profession has reached a developmental stage in which formulation of new approaches is appropriate at a time when external realities exact demands which make this activity more difficult. It is not surprising then that the new buzz words in our field are “creative solutions.” And yet, that of course is what is needed. If we are to maintain our perceived expertise in work with families, we must provide leadership in adapting family treatment to the demands of hospitals. Family therapy can be an effective type of intervention given the temporal framework of clinical work in health settings. Many models of family treatment are short-term, often task-centered, and aimed at adaptation rather than amelioration of pathology. Much of what social workers do involves helping patients and families cope with and adapt to changes brought about by illness and hospitalization. From a systems perspective, any change in the patient’s level of functioning or role within the family inevitably effects the entire family, which in turn has further effects on the patient. Family therapy is thus ideally suited for expediently 627

addressing such changes, helping family members adapt as required. These changes may include adjusting to a family member’s uncertain medical future or confronting a member’s imminent death. For other families, the change may involve a loved one’s returning home from the hospital unable to resume prior roles or functioning, or not returning home but being placed in a long-term care facility. The emphasis of family treatment on interactions and communication facilitates adjustment, which individual work alone may not accomplish as successfully (Bowen, 1976; Sheinberg, 1983; Watzlawick & Coyne, 1980). These two modalities can accomplish different things and should thus be viewed as complementary. In another respect family treatment may be well suited to the time demands of hospital work. Unlike individual work where change occurs through the vehicle of the consistent therapeutic relationship, family treatment encourages the bulk of the work to be accomplished by the family, usually between sessions (Bowen, 1976). Some models recommend longer intervals between sessions to give the family time to respond to the intervention (Selvini, Boscolo, Cecchin, & Prata, 1980). Such a model could be adapted to work with chronically ill patients and their families, who are seen periodically in medical clinics over a long period of time. There is a potentially pragmatic aspect to an emphasis on innovation. It may be that some new approach, such as a form of family treatment, can decrease the length of patient stay, increase the effectiveness of discharge planning, decrease the rate of rehospitalization, or increase patient/family satisfaction with the quality of care. If so, such indices of 628

success in the eyes of administration may engender more institutional support for social work.

Families Dealing Uncertainty

with

Medical

Two areas which require further investigation for practice, especially from a family systems perspective, should be noted. The first of these is the element of uncertainty with which increasing numbers of families are confronted as technological developments in medicine transform once life-threatening disease into chronic illnesses. In the past, people who contracted certain diseases knew, they were likely to die, usually in a relatively short period of time. While this was extremely painful for the surviving family members, they at least knew what they had to prepare themselves for and could begin the anticipatory grieving process which would help them cope with the eventual death. Now, for illnesses such as end state renal disease and various forms of cancer, what with new protocols and interventions such as transplants, dialysis, radiation, and chemotherapy, the future for many patients is more promising. At the same time, the prognoses remain unpredictable and uncertain. This produces an enormous amount of stress for the patient and the family, as well as for the health care providers. While more research is needed on how best to help families cope with the uncertainty, we do know some of the interventions which are helpful to families. These include: providing information that is honest and balanced in terms of positive reasons for

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hope and realistic causes for concern; providing acknowledgement of how difficult the “not knowing” is and support concerning this (being available and helping families to bear it); being attuned to where the family is in terms of the balance of hope and worry, and whether the balance is realistic given the medical situation of the particular patient. Moreover, it is important to remember that family members, including the patient, will deal with uncertainty in their own way and in their own time, which may result in disynchrony between members. Being out of sync can produce greater stress for the family and impede successful coping (Mailick, 1979; Sourkes, 1977). Working within a family systems perspective can be especially useful in terms of opening lines of communication, helping family members support each other in the tension of the uncertainty, and dealing with disynchrony when it occurs. The following two clinical vignettes illustrate family system dynamics evoked by the uncertainty of the life-threatening illness.

Case Illustration: T. Family The T’s are an intact family with three children, identical twin boys, age 8 and a girl, age 5. Jimmy, one of the twins, had leukemia, was in remission for 1-1/2 years, and had fairly recently had his chemotherapy terminated because he was doing so well. Referral was made to the psychiatry department, not for Jimmy but for his twin brother, Bobby, who was exhibiting learning and behavior problems in school. In the initial interview with the parents alone, it emerged that the children had been told almost nothing about Jimmy’s

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illness, that they never asked questions about it, and that this was the way the parents wanted it to be. The parents were quite adamant about this latter point, stating that now that Jimmy was doing well the children were not worried, confirmed in their minds by the absence of any questions or discussion from the three children. Further, the parents worried that discussing Jimmy’s illness would unnecessarily arouse anxiety and upset the children. When a family session was scheduled, a striking scene occurred. All three children were totally absorbed in play with the medical toys provided, repeatedly taking each others’ temperature and listening to their own and each others’ hearts with the stethoscope. This play culminated with Bobby and his sister, Judy, constructing a tomb-like structure with building blocks, chanting that Jimmy was “dead and buried in his grave.” Their play forcibly and poignantly conveyed their worries about Jimmy’s, and their own, well-being. The parents, stunned by their children’s communication, agreed to continue family therapy. In subsequent sessions, the parents, with much support from the modeling by the therapists, slowly began eliciting questions from the children, which were numerous, and answering them more directly. When the family was ready, Jimmy’s oncologist was invited to join one of the sessions so that he could respond to their medical questions. The opening up of communication within the family system had an ameliorative effect on the children, and Bobby’s presenting symptoms soon subsided. While this case is more dramatic than most, it illustrates the impact that unspoken worries can have on family members.

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Case Illustration: S. Family The second example is from the author’s research with parents of pediatric cancer survivors. Ann, age 15, is the only child of Mr. and Mrs. S. and has been in long-term remission from leukemia. She is a good student, is popular and seen as a leader by her peers, and is active in sports. Moreover, she has a close and seemingly open relationship with her parents. The night before the first scheduled meeting with Mr. and Mrs. S., the family had together filled out a questionnaire about the cancer experience, which they had coincidentally, and in error, received from the larger research project with which the author was involved. Ann retired to bed and her parents later found her sobbing inconsolably. She had apparently long believed that she was a freak because of her illness and that therefore no one could really love her. This came as a great shock to her parents, who had assumed that Ann was a happy young girl who no longer thought about the cancer experience. In the research study, the great majority of parents were either reluctant to discuss, or actively avoided discussing, the illness currently within the family. This was so even in families who were otherwise open in communication about other topics. Apparently during the time when the child is in good physical health there is an understandable desire to seal off from discussion this anxiety-producing topic. An unfortunate outcome is that the child or adolescent is left to deal alone with any continuing worries or questions about the illness and its implications. The worker’s response to the S. family’s tale was to raise the possibility of a referral to a professional

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person with whom Ann could share her concerns. They had already suggested that to Ann the previous evening, and she had responded in the negative. Perhaps the outpouring of her feelings to her parents, and their responsive support, were all that Ann really needed. The questionnaire served as the precipitant; this raises the question of how we can provide the incentive or opportunity for such communication, so that it is not left simply to chance.

Children’s Reactions to Illness The second area to highlight is the special impact that serious illness has on other children in the family. In pediatric hospitals there is growing recognition that the siblings of patients who are critically or chronically ill are at great psychological risk. This is in part because of feelings such as worry, resentment, and guilt stirred up by the patient’s illness and hospitalization, and in part the consequence of siblings having their parents less available to them at a critical time in their own development. In adult settings, children of ill and/or hospitalized patients are also at risk, and are all too often overlooked. In close extended families, or families in which generations live together, the serious illness of a grandparent can have a significant impact on the children. This is not to suggest that the entire family routinely be seen together in hospital work, although at times this method of intervention may be indicated. Nor are all social workers sufficiently trained to work with children therapeutically. Rather, this point stresses the impact that serious illness in a family member can have on children and recommends that all workers have some understanding of the typical questions,

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concerns, and reactions that children have so as to be able to help parents help their children. Frequently parents may deny that their child is worried, or try to shield the child from information that they fear may be too distressing or overwhelming for the child. This leaves the child to deal with the upsetting and confusing situation alone, which can allow for cognitive and emotional distortion. As we know, fantasies can often be worse than the reality. If the worker keeps this awareness in mind, it becomes a routine matter to ask parents what the children have been told about the illness, and what their reactions and questions have been. This serves to sensitize parents to children’s emotional needs. Many parents, especially in the better functioning families, will already be acutely aware of, and responsive to, the needs of their children in such matters; others may need some educational guidance; and still others may want the social worker to intervene more directly with the child. Whichever is indicated, it should be presented within the realm of normalcy. The worker’s role is to facilitate family communication and to provide a model of psychological awareness.

Family Treatment Countertransference

and

A final issue which cannot be ignored has to do with countertransference, a phenomenon that may account in part for the infrequent involvement of the entire family. It has been this author’s clinical and training experience that working with families can potentially stir up more intense feelings than working with an individual. In a setting where

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intensity of feelings is already high, which is certainly the case in hospitals, some resistance on the part of the worker to seeing the entire family is understandable as a form of self-protection. This kind of reaction is exemplified in the following clinical vignette.

Case Illustration: L. Family Susan L., age 14, was referred for treatment because of depression resulting from her rejection of her father’s transplanted kidney and her subsequent resumption of dialysis. She was a very young child when she required and received the transplanted kidney, which functioned well and enabled her to have a full and healthy childhood. Around the time of adolescence, the kidney began to fail and was finally rejected. The family had always assumed that if this should happen her mother would donate her kidney. As this was being arranged it was discovered that she was no longer a good match, as Susan had developed antibodies which would cause rejection of the kidney. She was therefore placed on a cadaver transplant waiting list, since her brother and sister (aged 12 and 15) were thought to be too young to be considered as donors. Added to the depressing quality of this situation was her awareness of the death of another girl following a cadaver transplant. The social worker has met with Susan individually for two months on a weekly basis. Although the referral came from her parents, Susan very much wanted someone with whom to talk. She is a bright, verbal, and very engaging young adolescent. Hers is a middle class professional family which would be assessed as well functioning but which is under an

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enormous amount of strain due to Susan’s condition. Mrs. L. has had to significantly alter her work schedule in order to transport Susan to dialysis three times a week and to be more available when she is not feeling well; Mrs. L. resents this. There is also abundant data to suggest that the 12 year old brother greatly resents the attention Susan is now receiving. He appears depressed and has begun to underachieve in school; Mrs. L. requested a referral for him to speak with someone. Both parents have declined counseling for themselves, although Mrs. L. is always eager to talk with the social worker either before or after her session with Susan. Susan quite rapidly shared her fears and worries: she thinks she is going to die, and she is both afraid of receiving a cadaver transplant and yet afraid she will never get one. She is withdrawn from her friends, feeling she can no longer keep up with them, and is now finding school boring, preferring to stay at home. One of her recurring dreams revealed her fear of dying alone at school with no one able to save her. It is poignantly sad to sit with this young girl, who looks healthy, should be looking forward to a long full life, and who instead is confronted with an uncertain future, fearing an imminent death. Clearly this is a case in which family issues abound. And yet, while the worker firmly believes a family evaluation is indicated, she has been slow to schedule one. It is difficult enough to sit with Susan and help her to bear the intensely painful feelings. Obviously, there is a great deal of pain for the entire family, and perhaps the worker is reluctant to take on the family pain as well. The hesitancy to see the family together may be self-protective, but not necessarily in the best interest of the patient or family. 636

Conclusion These are challenging times for clinical social workers to be practicing in health settings. Medical advances have been able to prolong life—both for the elderly and for those stricken with once life-threatening illnesses. Families are thus faced with complicated psychological tasks, whether it be adapting to chronic illness with an uncertain future or planning and adapting to long-term care of the elderly member of the family. Social workers, who are typically the health professionals who deal with families, have a responsibility to explore, develop, and conceptualize new ways of helping families adapt. Family therapy is a powerful and as yet underutilized tool for clinical interventions. Social workers, by appreciating and developing that tool can make a significant contribution to the well-being of their clients, and at the same time can reaffirm their leadership in this clinical domain.

Note An earlier version of this paper was presented at the Beatrice Philip Sachs Symposium held at the Beth Israel Hospital, Boston, in October, 1983. Reprinted from Social Work in Health Care, Volume 10(4), Summer 1985.

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References Berkman, B. and Clark, E. “Survey offers guidelines for social work,” Hospitals, 6, 1980. Bowen, Murray, “Family reaction to death,” Family Therapy: Theory & Practice, P. Guerin, ed., NY: Gardner Press, 1976. Bowen, Murray. “Theory in the practice of psychotherapy,” Family Therapy: Theory & Practice, P. Guerin, ed., NY: Gardner Press, 1976. Caroff, P. and Mailick, M. “The patient has a family: reaffirming social worker’s domain,” Social Work in Health Care, 10(4), 1985. Mailick, Mildred. “The impact of severe illness on the individual & family: an overview.” Social Work in Health Care, 5(2), 1979. Penn, Peggy. “Circular Questioning,” Family Process, 1982. Penn, Peggy. “Coalitions & binding interactions in families with chronic illness,” Family Systems Medicine, 1(2), 1983. Selvini, M.P., Boscolo, L., Cecchin, G., & Prata, G. “Hypothesizing-circularity—neutrality: three guidelines for the conductor of the session,” Family Process, 1980. Sheinberg, Marcia. “The family & chronic illness: a treatment diary,” Family Systems Medicine, 7(2), 1983.

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Sourkes, Barbara. “Facilitating family coping with childhood cancer,” Journal of Pediatric Psychology, 2, 1977. Watzlawick, P. & Coyne, J. “Depression following stroke: brief, problem-focused family treatment,” Family Process, 1980. Weakland, John. “Family somatics—a neglected edge,” Family Process, 1977.

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Social Work Groups in Health Settings: Promises and Problems Helen Northen, PhD At the time of writing Helen Northen was Professor of Social Work, University of Southern California School of Social Work, Los Angeles, California. Knowledge about psychosocial aspects of health and illness has been accelerating rapidly, and provides a solid base for the use of groups as an important part of social work practice. Progress in medical care, though uneven, is still not matched with corresponding advances in the prevention and treatment of problems related to the social and psychological determinants and consequences of illness and disability. A proposed credo (A Statement of Scope and Credo in Health Care, 1975), printed in the first issue of Social Work in Health Care, says: We believe that the social worker, wherever located in the health care network, is committed to skilled, effectively delivered service to both patients and families in relation to the particular illness that necessitates entry into the system. Equally important is our responsibility to influence those psychosocial factors that predispose to illness, precipitate illness, or perpetuate illness.

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“Skilled, effectively delivered service” are the key words. In order for services to be effective, they must be clearly relevant to the needs of particular people. It is the thesis of this paper that many needs can be met effectively through the use of groups. A primary assumption underlying my perspective on social work is that social work practice with groups is an essential component of clinical social work practice. “Clinical social work” is a term that is increasingly used to designate professional services to and in be half of clients when the purpose is to maintain and enhance the psychosocial functioning of individuals, families; and small groups. It is a term, however, that is not universally acceptable, because some practitioners still equate it with treatment of diagnosed pathology in clinical settings. As used in this paper, clinical social work does not focus on pathology; it encompasses the functions of development, prevention, and therapy or rehabilitation; it is concerned with maximizing the availability of intrapersonal, interpersonal, and environmental resources for the benefit of those whom we would serve (Cohen, 1980). The emerging consensus, as described in a recent NASW publication on clinical social work (Ewalt, 1980), gives a clear mandate and sanction for social work in the health field. It is to be emphasized, however, that social workers also work beyond the clinical domain in their efforts to influence the administration and structure of programs through which clients are served well or badly. Another assumption is that scientific definitions of groups need to be extended and adapted to maximize their use in the setting of hospital or clinic. Some social work writers and 641

sociologists correctly state that a group is defined as a unit of two or more people who are in a relationship of psychic interaction with each other over a period of time, and in which they share certain common goals, values, norms, patterns of communication, and a sense of cohesiveness. This definition, however, seems too restrictive. For purposes of this paper, the group is an aggregate of persons who are together even for a brief period of time; the characteristics of duration and cohesiveness may not exist in such a group. This flexible adaptation of the definition makes it possible to include brief encounters on hospital wards, where the social worker connects the needs of one patient to those of other patients. It makes it possible to include single sessions, in which there is no way that continuing relationships can develop and in which one’s focus is not on the development of a group per se, but on meeting the immediate psychosocial needs of a collectivity.

Trends in the Use of Groups in Health Settings From the earliest days of professional social work practice, some farsighted leaders in both medicine and social work recognized that people need people if they are to overcome many disabilities connected with illness and its consequences. Indeed, the first group therapy was used in Massachusetts General Hospital in 1905 with patients suffering from tuberculosis. In one of the very first books on social work practice, Ida Cannon set forth principles of diagnosis and treatment (Cannon, 1913). Her emphasis was on people and their environments. She thought that social workers must

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work with individuals, families, and groups of patients. She was influenced by Mary Richmond’s early emphasis on families and environments and Richmond’s urging that social workers “view clients from the angle of small group psychology” (Richmond, 1920). Those were in the days before distinctions were made between social casework and social group work as separate methods, requiring special education. For a variety of reasons, interest in work with individuals and work with groups soon diverged, and work with family units was almost forgotten. Some practitioners were trained as social caseworkers and others as social group workers. In the field of health, social workers, in reality, became caseworkers. Gradually, in the 1940s, hospitals began to recognize the value of groups and employed social group workers to organize and lead groups of patients, primarily on children’s wards and in Veterans Administration and Army hospitals. Enough interest was generated by 1959 for the National Association of Social Workers (NASW) to appoint a committee to study the use of groups in health settings and to identify questions and issues that would warrant further study. The first book on the use of groups in health settings was published in 1966, based on the work of the NASW committee (Frey, 1966). The bibliography listed twenty-three articles that described group work. By far the greatest number were about services to children, either on pediatric wards or in community agencies. Only three articles dealt with adult patients, one with ward living, and one with the group worker as member of an interdisciplinary team. Two were general articles that described the roles of group workers in hospitals. 643

There has been a gradual increase in the literature on groups in health settings since 1965. Slightly more than one hundred articles have been published in the last fifteen years. As would be expected, there has been a slow but regular increase in the number of contributions over the years. The last five years have been particularly productive; about three-fourths of the total number of articles have appeared that recently. The articles are generally descriptions of particular groups or programs, although there were five instances in which evaluation of outcome was made by means of client and worker judgments and one example of a quasi-experimental evaluative research design.

Helping Groups

and

Healing

Factors

in

Experiences in groups have potentials for helping people in many ways. The basic premise is that a basic need of all people is to make and sustain satisfying connections with others. Human relatedness is the key to healthy physical and mental development. Personality is largely formed through relationships with other people in ever widening circles, from the infant’s symbiotic relationship to his mother to varied adult object relationships. Changes in personality and in relationships with others are inseparable: an individual’s capacity for effective social relationships is indicative of his personality integration. Personality and social relationships are influenced also by the obstacles and opportunities in a person’s environment and by the values and norms of the group to which he belongs, including his family. People simply need people.

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William Schütz, who has studied interpersonal relationships, introduces one of his books with the following story about his daughter: Laurie was about three when one night she requested my aid in getting undressed. I was downstairs and she was upstairs, and … well. “You know how to undress yourself,” I reminded. “Yes,” she said, “but sometimes people need people anyway even if they know how to do things by theirselves.” As I slowly lowered the newspaper, a strong feeling came over me, a mixture of delight, embarrassment, and pride; delight in the realization that what I had just heard crystallized many stray thoughts on interpersonal behavior; anger because Laurie stated so effortlessly what I had been struggling with for months; and pride because, after all, she is my daughter. (Schütz, 1966) The point is that patients and their families need other people to help them to adapt as effectively as possible to the ravages of illness and disabilities. A social work group, of course, cannot substitute for normal relationships at home and in the community, but it can make use of interpersonal relationships in the process of preventing or treating problems in psychosocial functioning (Benne, 1975; Guttmacher and Birk, 1971; Yalom, 1975). Among the many values inherent in the group experience, perhaps the most important for the patient or distressed members of his family is the climate of acceptance, through 645

which a person can gain a sense of belonging and identification with the group. A feeling that a patient is accepted by his peers as well as by a professional helper and that he, in turn, accepts other members is a powerful dynamic in the process of change. When a person feels he is regarded favorably by members of the group, his self-esteem rises. He feels he is accepted in spite of his illness or disability; this can lead to increased acceptance of self. As he feels accepted, a member tends to identify with the group; which, in turn, enhances the group’s influence on his attitudes and behavior. He becomes more comfortable in disclosing his feelings, concerns, and ideas. Research indicates that self-exposure is not necessarily helpful; but when it occurs under conditions of acceptance, it is one factor in successful outcome. Thus, acceptance becomes a powerful dynamic in the process of change. Another potential source of help is that the group often serves as a corrective for distorted perceptions and relationships. It is a medium for reality-testing. In the light of reality, denial is difficult, as is holding to false ideas. As a person dares to disclose and test out his feelings, judgments, and solutions to problems, he gains a better perception of himself in relation to others. The group puts pressure on its members to face reality and work on it. The multiplicity of reactions and viewpoints from peers and from the professional helper provide the person with feedback relating to particular interpersonal needs or life issues. Ambivalent attitudes can be tipped toward the direction of reality. The patient can come to better understanding of himself and his situation in its unique and universal strengths and limitations.

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Universalization is another potentially helpful dynamic in groups. Release of anxiety seems to occur rather quickly with the knowledge that feelings and concerns are shared by others. The person comes to feel that he is no longer unique and alone with his difficulty. When the patient comes to realize that other people share a condition or problem and yet have good qualities and much to offer to others, his own self-esteem and sense of adequacy are increased. “I found out that I was not alone”; “I can’t live in a void. I need to talk with other mothers like me,” are the most frequent kinds of comments made by clients in expressing the meaning of the group to them. Later they come to recognize and appreciate their own individuality and the differences among members. Groups have an important impact on people because they instill hope. People are given positive expectations that things can be better in their lives. Since the group’s purpose is one of enhancing a person’s functioning in relation to his illness or the illness of a family member, it is implicit that he is expected to grow toward physical and social health. The individual, through identification with the group, catches the group’s optimistic goals. This is the concept of positive contagion of motivation toward change. As one patient said it, “You can’t live thinking you’re going to die every minute. You do that at first. Then you learn to live” (Driscoll and Lubin, 1972). The group helps. These helping and healing dynamics are all interrelated and based on the fact that, as William Schwartz says, a group is a system of mutual aid (Schwartz, 1961). In a group, a member is expected to engage in a process of give and take; he learns from others and he gives to others. People are interdependent. The essence of mutual aid 647

is the need for and creation of group mechanisms for coping with individual or social problems. Yalom and others emphasize the great importance of altruism as a curative factor (Yalom, 1975). As a person contributes to the group, he no longer needs to feel that he is just a sick or handicapped person to be protected by and dependent upon others; he becomes someone who is capable of giving to others.

Rationale for Using Groups The rationale for providing group services in health settings derives from the nature of the difficulties faced by patients and their families, combined with the fact that the dynamics that operate in groups are exceptionally well suited to meeting the needs of people whose normal interpersonal relationships have been disrupted by illness or disability, or whose premorbid problems in relationships have aggravated the illness or handicap (Kahn, 1978; Mailick, 1980). These people often suffer from a sense of loss, depression, anxiety, hopelessness, helplessness, low self-esteem, negative selfimage, discrimination, and superstitious fears (Strauss, 1975). The particular reactions, of course, vary with the individual. Illness is not just a private matter, but a social one. The patient is affected by the medical event as are members of his social network; they, in turn, influence the nature and course of the illness. In the words of Hans Falck (1978): “The situation is social, the event is social, and the intervention is social.” The illness or handicap of one member of a social network upsets the steady state and requires shifts in role expectations and role behavior of all concerned. A serious

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illness or handicap in a person requires complementary adaptations by other family members, friends, and colleagues. Each person influences and is influenced by all other persons in the system. Others may support or fail to encourage realistic adaptation; they may sabotage efforts to cope. The stress created by the illness is aggravated when there are other problems in the family or at work or school. Patients are indeed fortunate when they have close family ties and a network of friends to provide support and encouragement. This is the ideal, but not often the reality. There is evidence from research that those patients who are alone or isolated are more apt to have serious difficulties in coping realistically with the demands and consequences of the illness or handicap than are those with supportive social networks (Feldman, 1980). Groups have special value in helping patients and their families to cope with the emotional distress and changes in social living occasioned by the illness or disability. The dynamics of acceptance, reality testing, universalization, and instillation of hope contribute to helping people to face and deal with their emotional reactions and the realities of social living. Through the interaction of these dynamics, problems in daily living can be utilized to cope with and solve problems related to the reality of the illness for patients and their families. Heavy doses of both support and challenge, adapted to the needs and readiness of individuals, are the key forces that produce change. At present there are no clear-cut criteria for determining what mode of therapy—individual, family, or group—will benefit an individual the most. Any decision needs to be based on the 649

assessment of the persons who are involved in the situation, the goals of service, and the values and risks involved in each mode of practice. Understanding the special characteristics of the different forms of treatment is essential to planning a service for an individual or a family (Northen, 1981). What evidence there is, however, suggests that the group may be the modality of choice under a number of circumstances. Formed groups are found to be especially useful in certain situations. They are most useful when the problems concern relationships with others. Many people need considerable support from their peers. They need to learn how they come across to other people and to practice new interpersonal behaviors in a social situation that is removed from their daily routines and relationships, one in which feedback comes from other members, in addition to coming from the professional practitioner. The perspective provided by multiple views of problems, people, and situations provides a context for reality-testing and makes the group particularly desirable when clients have distortions in perception of themselves and others. Socially isolated individuals and couples may overcome a sense of alienation from others in a setting that fosters acknowledging needs and problems and sharing common feelings about selves and others in a climate of mutual acceptance and support. When intense relationships with other significant persons are fraught with frustration, dissatisfaction, or conflict, help is often best given outside of the social system in which the conflict occurs. Groups are the modality in which a person can learn new attitudes and patterns of relationships, once removed from the original source of difficulty. Examples are 650

instances of sibling rivalry, adolescent and parent conflicts, or a stormy relationship with a caretaker, nurse, or employer. Even when there is a problem in family functioning, which usually indicates service to the family unit, a member may benefit from a group service. A person may not be able to bear the anxiety of family sessions, or may not trust the worker to protect him from retaliation by other members of his family. In group experience, the relationship with the worker and other members can begin at whatever level of participation the person is ready for until, through observation of happens to others, he learns that the worker is interested in all and that there is enough caring, acceptance, and empathy to go around. This experience may make it possible for the patient to then benefit from help within his family. McBroom, from an intensive study of socialization, has concluded that the group is the most natural and effective modality for intervention when people need assistance in the process of socialization (McBroom, 1976). Many patients and relatives need to learn new roles that are related to physical illness and disability, or they need to be resocialized into changed role expectations. Socialization becomes impossible for an isolated individual. According to McBroom, “There is a direct connection between interaction and motivation. Therefore primary groups are the optimal settings for socialization: they promote maximal feedback and the chance for alternatives and experiment without disaster” (McBroom, 1976, p. 280). She further noted, “… the very terms of socialization theory suggest that group work is usually the method of choice: the social interaction aspects of personal change are enriched and accelerated in the group as a socializing environment” (McBroom, 1976, p. 299). The

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major targets for socialization efforts are populations at risk, such as new parents or parents whose children have atypical needs, as is true in serious illness or physical disability; persons facing major changes or loss in family and work roles or in body image or bodily functions; and those experiencing radically altered social expectations and opportunities. Many patients and their families are in this category of populations at risk. People may refuse to participate in family or group treatment: the only alternative then is individual help. This is true also if a person is imbued with the idea that his problem is so unique and difficult that he can only be helped by an expert and that the presence of other clients would dilute the change effort (Pincus and Minahan, 1973). Some persons are too fearful of groups, or they are governed by values that forbid discussion of personal feelings and problems with others. These may be the very people who most need a corrective group experience. Nevertheless, individual help must be given, at least until the initial resistance to family or group can be modified. There are practical matters that need to be recognized and taken into account in making decisions about the type of service to be offered or provided. Obviously, one of these considerations is client choice. People have different attitudes toward individual, family, and group modalities, which influence their motivation to accept and use a particular type of service. The important point, however, is that the choice should be an informed one, so that the client can understand some of the benefits, risks, and consequences of a particular decision. If a person is not currently a part of a family constellation, the choice is limited to an individual or formed group modality. The size of a hospital influences the extent to 652

which formed groups can be utilized; there must, of course, be a sufficient number of applicants or clients with a common need to make possible the formation of a group.

Goals and Types of Groups It has been fascinating to read the literature and discover the variety of types of groups used by social workers in health settings, each with its own set of major purposes. In most instances, multiple goals are specified.

Educational Groups Formal and informal groups are organized to impart knowledge and develop competence in areas of common interest to their members. They are frequently used to prepare patients for hospitalization, surgery, or other types of treatment or to provide accurate knowledge or cognitive understanding of the illness, its treatment, and the common demands on patients and relatives. Physicians and nurses often serve as co-leaders of such groups. In many instances, the groups aid the leaders to go beyond the imparting of information to helping the members understand and begin to cope with the feelings and emotional reactions to the information, through the use of group process. Kane reminds us that education and psychotherapy are closely akin and that social workers realize that emotions and relationships can obscure educational messages; the need is to bridge transitions between cognitive and affective aspects of learning (Kane, 1981).

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Therapy Groups By far the most prevalent in the literature are groups that have a therapeutic purpose. The goals may be: the relief of social isolation and alienation; enhancement of capacity to understand and cope with the emotional reactions to illness or handicap and the threat of death; effective ways to cope with stress and strains related to changes in roles and adaptations of functioning in roles; or learning to communicate with others in more appropriate ways. The general purpose of such groups is to help each person to change or improve in certain aspects of his psychosocial functioning that are interfering with his own or a family member’s progress toward health. Patients often need to improve their ability to face and master reality situations by enhancing understanding of themselves in relation to the illness and understanding their own part in creating or maintaining problems. They often need help to cope with and solve problems and issues that threaten self-esteem and identity. Some therapy is done through crisis groups. The use of groups at times of personal or family crisis, as is often true when there is a diagnosis of a life-threatening or other catastrophic illness or disability, is thought to be warranted because crisis is a leveling phenomenon and people in crisis tend to relate to one another with empathy and helpful support. In the group, the precipitating event and related problems are identified, feelings are ventilated, alternative means of coping are evaluated, and new ways of coping discovered (Allgeyer, 1973; Parad, Selby, and Quinlan, 1976).

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There is a growing use of groups for therapeutic purposes that concern adaptation to life transitions. The purpose is to help patients or their relatives to overcome feelings that interfere with successful adaptation and to cope more effectively with concerns and problems in meeting new or changed expectations in role performance. Such groups would fall within the general category of groups for socialization or resocialization.

Self-Help or Self-Government Groups Self-help groups have been proliferating at a rapid rate in the field of health (Gartner and Reissman, 1977; Lieberman, Bowman, and Associates, 1979; Katz and Bender, 1976). The primary purposes for which these groups are organized tend to be: (1) to control what is perceived to be undesirable behavior, such as overeating, child abuse, smoking, or drug and alcohol abuse; (2) to provide support and mutual aid from peers to coping with stress related to severe loss, physical handicap, or chronic illness; (3) to combat discrimination and enhance self-esteem for persons who feel stigmatized due to lack of understanding by others of their illness or handicap. With such groups, the professional worker is not likely to be the leader of the group, but rather engages in referring clients, organizing new groups when a need for such is indicated, consulting with indigenous leaders or members at their request, and developing indigenous social networks.

Social-Change Groups Some task-oriented groups aim to change the social situation or conditions outside the group. They attempt to seek

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modification of some aspect of the ward, institution, or community. The goals are achieved through collective problem-solving by patients and often also with the participation of staff. The goals may also be achieved through pressure, dissemination of information, and modification of attitudes of outsiders (Hartford, 1971). The specific goals of such groups range from attempting to change procedures or the social climate of the ward so that it might become a more therapeutic milieu to trying to make changes in legislation concerning Medicare benefits, to gaining of access by physically handicapped people to community facilities.

Staff Groups Groups are an integral part of the administration of a hospital or clinic. They are used for purposes of collaboration in teams or interdisciplinary practice. They are also being used as support systems for personnel—for example, nurses and social workers—who need the stimulation and support from their colleagues in understanding the behavior of patients and the many pressures on them that contribute to burnout. In some instances, the main goals are to effect some change in the staff’s knowledge about the impact of disease on patients’ or relatives’ attitudes and functioning, thus enabling the staff to work more effectively with patients, relatives, and each other. The interacting network of groups and subgroups on a ward and those related to the health care setting and the wider community have tremendous influence on the patient’s attitudes toward the illness or handicap, his self-image, the progress of his treatment, and the use he makes of medical

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resources. Attitudes and behaviors are influenced by the interactions of patients with each other and with staff in the normal course of daily living, and they are influenced also by the physical arrangements, schedules, and policies governing the provision of health care.

Selected Problems Groups have a great contribution to make to the rendering of social services in health settings. Yet, too often, the promise is not fulfilled. There are many reasons why groups are not used as fully as they might be and why, when they are used, they are not as effective as they might be. Among the most important obstacles, two seem especially crucial: lack of adequate planning and inadequate competence on the part of the social worker to facilitate group relationships and processes.

Inadequate Planning Inadequate planning is one of the most frequent deterrents to effective practice. Too often, groups have been organized by a particular practitioner who has a special interest in this modality, rather than according to a plan in which groups are integrated into a program of services to meet psychosocial needs of patients and their families. As Kurland has reported (1978), planning is a neglected component of social work with groups. Planning is “a deliberate rational process that involves the choice of actions that are calculated to achieve specific objectives at some future time” (Siporin, 1975). It is a decision-making process through which the means for achieving objectives is determined. Planning requires 657

attention to a number of salient issues. An adequate plan is based on an accurate assessment of the needs and problems of clients. The planning process requires that decisions be made concerning: 1. the social context of service 2. the needs, problems, and goals of clients that will serve as an initial focus in the group’s work 3. whether or not the group is an appropriate modality for achieving a particular purpose 4. the structure of the group, including its anticipated duration, time elements, composition, and such mundane matters as costs and fees, and 5. means for admitting clients into the group. In relation to each of these components of planning, there are alternatives to be selected, based on the professional judgment of the practitioner, the potential clients’ preferences and capacities, and the organization’s structure, policies, and resources. In studying examples of practice with groups, it is evident that they are often started without adequate planning. An extreme perhaps is one presented by a student who observed a group in a medical center. The process of setting goals was attended to only minimally; the worker defined the purpose vaguely as providing a support group for patients suffering from cystic fibrosis. The age range of patients was from twelve to twenty-nine. All patients were invited by their physicians to attend the group. Fourteen of the thirty patients decided to become members. The eight members who were in junior high or high school

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were preoccupied with such issues as being misunderstood by their schoolmates and teachers, feeling ashamed, inability to find and keep friends, the adolescent dependence-independence conflict aggravated by dependence on medical care, inability to compete with their peers in physical prowess and social situations, and coping with the knowledge that most sufferers die at an early age. The older members of the group were concerned about broader issues such as discrimination in employment and educating the public about the illness and the resources needed by patients. They desired to develop the group into a large self-help organization. In the meantime, they dominated the decision-making processes. They proposed, for example, that they make presentations at the younger members’ schools in order to increase the teachers’ and other pupils’ understanding of their illness. This suggestion horrified the pupils. One was able to say, “Oh, never, not at my school, you don’t.” The group was unable to deal with the conflict. It was not surprising that most of the younger members did not return to the group. The naive idea that any group has magical and mystical qualities that will help people still is abroad in the land. Within the planning process itself, it is evident that too little attention is often given to the medical center as the social context of service. Often, there is inadequate sanction from the various administration units. The sanctioning of a service is dependent upon understanding the goals of the service, the means used to achieve the goals, and the ways in which the program contributes to the basic purposes of the health care system. Administrators and line personnel cannot support a service unless the social workers are clear about the contribution that particular groups will make to the well-being 659

of clients and the mission of the organization. Unless a tentative plan is carefully made and changes in it are then negotiated with all parties who will be affected by the service, there is little chance of success. In order to have a group, there must be plans for selecting and involving members, appropriate rooms for meetings and other facilities; a schedule that does not conflict with necessary medical care and treatment; and a plan for coordinating the group experience with other components of the patients’ treatment and other aspects of their lives. If plans are not made in the best interests of all concerned, the hospital does not receive the full benefit of social work expertise.

Competence in Use of Group Process Not all groups are helpful. There is indeed power in the group, but groups are not mysterious cure-alls for the problems of patients and their significant others. As is true in work with individuals and families, casualties do occur with group work also (Galinsky & Schopler, 1977). The positive attributes are not experienced by every member. Each person’s experience is very personalized. In any given situation, a group may be very helpful to most members, inconsequential for others, and unhelpful or even harmful to others. The potential casualties arise from a combination of qualities of individuals who comprise the group and the qualities of human groups, rather than from the intent of members to harm others. Group structures and processes may be constructive or destructive in their effects. Every group has a purpose, which may or may not be in harmony with the needs

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and goals of particular individuals. Without such congruence, it is unlikely that an individual will benefit. Although most groups develop relationships that are characterized by a predominance of positive ties of acceptance, empathy, genuineness, and positive identifications, the opposite may be true. Members can be very cruel to one another in overt or subtle ways. Members do attack others, they often need to find scapegoats, and they exclude and isolate some of their members. Some members fear rejection or expulsion; they feel lonely, misunderstood, or inadequate to achieve what the worker and other members expect of them. Acceptance and empathy by the leader and other members is a necessary condition for a patient to benefit from any form of group help. Every group develops a system of norms that governs the behavior of the members. These norms provide safeguards against more freedom, flexibility, and conflict than the members can cope with. Members often put pressure on others to behave in relation to the norms. Conformity may be demanded or individual differences may be appreciated. The norms are not always those that help members to move into the mainstream of community living. When groups are not able to develop the cohesiveness that motivates members to remain in the group, the result is that the group disbands, either by decision of the members or simply because members stop coming. Such groups are not meeting the needs of the members. In some instances, as in the group of cystic fibrosis patients, there are differences of agreement about goals, problems in group composition, conflicts among subgroups, and an inability to resolve tensions or conflicts among the members. The group disbands, but the upset members are left to deal with their 661

problems as best they can. In some groups that do not disband, there is sporadic attendance and numerous dropouts, due to dissatisfactions of many kinds. Former members may or may not have been harmed, but they were not helped. The complexity of group relationships and interactions create challenges even for experienced practitioners. Since group process is the prime therapeutic agent, the social worker facilitates it in ways that advance movement toward individual and group goals. He is able to initiate, sustain, use and end the group process. It is essential that he be in tune with each individual but also be able to make split-second assessments of the group. These assessments determine his interventions. Some practitioners find it difficult to initiate and sustain working relationships because they become overwhelmed by the intensity, pervasiveness, and multiplicity of feelings and problems that are ventilated in the group. A practitioner is tempted to deal with each member’s expressions and concerns one by one, but he will not be effective unless he can find the common ground that underlies the apparent chaotic diversity. When a group goes through the almost inevitable phase of testing the worker’s acceptance of and ability to help its members, it is not easy to be empathic and accepting. Throughout the group’s life, the worker has the responsibility to pay attention to the problem-solving processes. These are but a few of the typical challenges to becoming competent to facilitate group processes. Unleashing the potential positive factors in groups is dependent upon knowledge and competence. Competent practitioners are able to assess the potency of the dynamics 662

that are generated within groups in relation to the purpose of the group and its composition. They know how to assess the capacities and difficulties of individuals. They know also how to assess the intragroup problems. They understand and can accurately assess the dynamic relationship of each individual to the worker and the relationships of members to one another. They are competent to intervene in the natural group processes so as to assure their beneficial influences on members. They know when to use selected procedures and techniques to help the members individually and to help the group as well. The work is demanding, but it is also fascinating and rewarding. It is my conviction that the use of groups should be an integral component of an individualized plan of service for each patient and his family. The practitioner should be able to use individual, family, group, and community contexts in a purposeful and planned way. Ron Baker, a British social worker, has summarized well the major arguments for a generically oriented and skilled professional social worker. In order to begin where the client is and to meet his needs, his perspective is that: The individual or group that becomes the focus of social work intervention is caught up in a network of relationships, or psychological and social systems, that link the client to his physical and psychological past and present, his family, small groups, neighborhood, and community. When these systems are under excessive strain and in a state of extreme imbalance, social work intervention is likely to be needed. Thus, in his everyday practice, the social worker is faced with a wide range of psychological needs and unhelpful social systems which push him to act at individual, group, or community 663

levels, either at the same time or in rapid succession. If method is to be his servant and not his master, then the social worker needs educating in a wide range of interventive strategies and to be given the opportunities to use them…. The human situation is always psychosocial. [Baker, 1975]

Note Reprinted from Social Work in Health Care, Volume 8(3), Spring 1983.

References Allgeyer, Jean, “Using Groups in a Crisis-Oriented Out-Patient Setting,” International Journal of Group Psychotherapy, 23(2), April 1973, pp. 217-222. Baker, Ron, “Toward Generic Social Work Practice—A Review and Some Innovations,” British Journal of Social Work, 5(2), Summer 1975, pp. 193-215. Benne, Kenneth D., “The Uses of Fraternity,” in Warren G. Bennis, Edgar H. Schein, Fred Steele, and David Berlew (eds.), Interpersonal Dynamics, Dorsey Press: Homewood, III., 1968, pp. 301-305. Cannon, Ida M., Social Work in Hospitals, Russell Sage Foundation: New York, 1913 (revised edition, 1923). Cohen, Jerome, “The Nature of Clinical Social Work” in Patricia L. Ewalt (ed.), Toward a Definition of Clinical Social Work, NASW: New York, 1980. 664

Driscoll, Chancellor A., and Lubin, Harold A., “Conference with Parents of Children with Cystic Fibrosis,” Social Casework, 53(3), March 1972, p. 144. Falck, Hans, “Social Work in Health Settings,” Social Work in Health Care, 3(4), Summer 1978, p. 401. Feldman, Frances Lomas, Work and Cancer Health Histories, California Division, American Cancer Society: Oakland, California, 1980. Frey, Louis A. (ed.), Use of Groups in the Health Field, National Association of Social Workers: New York, 1966. Galinsky, Maeda J., and Schopler, Janice, “Warning: Groups May Be Dangerous,” Social Work, 22(2), March 1977, p. 89-94. Gartner, Alan, and Riessman, Frank, Self Help in the Human Services, Jossey-Bass: San Francisco, 1977, p. 31-57. Guttmaker, Jonathan, and Birk, Lee, “Group Therapy, What Specific Therapeutic Advantages?” Comprehensive Psychiatry, November 1971, 12(6), p. 144. Hartford, Margaret E., Groups in Social Work, Columbia University Press: New York 1971, p. 29-62. Kahn, Elsbeth, The Challenge of Cancer for the Social Worker, California Division, American Cancer Society: Oakland, California, 1978.

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Kane, Rosalie, “Editorial: Thoughts on Parent Education,” Health and Social Work, 6(1), February 1981, pp. 2-4. Katz, Alfred, and Bender, E., The Strength in Us, Franklin Watt: New York, 1976. Kurland, Roselle, “Planning: the Neglected Component of Group Development,” Social Work with Groups, 1(2), Summer 1978, pp. 173-178. Lieberman, Morton, A., Bowman, Leonard, D. and Associates, Self Help Groups for Coping with Crisis, Jossey-Bass: San Francisco, 1979. McBroom, Elizabeth, “Socialization Through Small Groups,” in Robert W. Roberts and Helen Northen (eds.), Theories of Social Work With Groups, Columbia University Press: New York, 1976, pp. 268-303. Mailick, Mildred, “The Impact of Severe Illness on the Individual and Family: An Overview,” Social Work in Health Care, 5(2), 1980, pp. 11-28. Moos, Rudolf H., ed., Coping with Physical Illness, Plenum: New York, 1977. Northen, Helen, Clinical Social Work, Columbia University Press: New York, 1982, Chapter 5. Parad, Howard J., Selby, Lola G., and Quinlan, James, “Crisis Intervention with Families and Groups,” in Robert W. Roberts and Helen Northen (eds.), Theories of Social Work

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With Groups, Columbia University Press: New York, 1976, pp. 304-330. Pincus, Allen, and Minahan, Anne, Social Work Practice, F. E. Peacock: Itasca, III., 1973, p. 201. Richmond, Mary E., “Some Next Steps in Social Treatment,” Proceedings National Conference of Social Work, University of Chicago Press: 1920, p. 256. Schwartz, William, The Interpersonal Underworld, Science and Behavior Books: Palo Alto, California, 1966, p. 7. Schwartz, William, “The Social Worker in the Group,” Social Welfare Forum, 1961, Columbia University Press: New York, 1961. Siporin, Max, Introduction to Social Work Practice, Macmillan: New York, 1975, p. 39. “A Statement of Scope and Credo in Health Care,” Social Work in Health Care, 1(1), Fall 1975, pp. 5-6. Strauss, Anselm, Chronic Illness and the Quality of Life, C. V. Mosby: St. Louis, 1975. Yalom, Irvin D., The Theory and Practice of Group Psychotherapy, Basic Books: New York, 1975, pp. 3-104.

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The Legacy of the Group: A Study of Group Therapy with a Transient Membership Susan S. Bailis, ACSW Susan R. Lambert, ACSW Stephen B. Bernstein, MD At the time of writing Ms. Bailis was Director of Social Service, Tufts-New England Medical Center Hospital, 171 Harrison Avenue, Boston, MA 02111, and Assistant Professor of Psychiatry, Tufts University School of Medicine. Ms. Lambert, formerly a psychiatric social worker at Tufts-New England Medical Center, was in private practice with M.A.S. Associates, Wayland Massachusetts. Dr. Bernstein was Assistant Professor of Psychiatry, Tufts University School of Medicine. This article won the Maida Solomon Award of the Simmons College School of Social Work for 1976-1977. SUMMARY. This paper describes the development and growth of two long-term groups with highly transient membership and questions the need for stability of group membership for progress in group therapy. Two groups of relatives of psychiatric inpatients lad a total of 150 members in 18 months. Average membership has been 2-3 sessions. The groups have progressed from beginning to advanced

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stages of group development. Clinical examples describe the subtle passage and evolution of group norms-the legacy of the group—from generation to generation of members. It is frequently assumed that stability of psychotherapy group membership is necessary for group development and progress, both for the individual and for the group. Yalom (1970) has stated that “stability of membership seems to be the sine qua non of successful [group] therapy.” It would follow that in groups without stable membership, with short-team membership, and frequent entrances and departures, group formation would be severely impeded. The group would always be forming and would remain in the beginning stages. Phenomena observed in stable, long-term groups would be rare or nonexistent. In other words, the hallmarks of a beginning group—dependency to a great extent on the leader, lack of group cohesiveness, denial of problems, and use of clichés and formulas in seeking to aid other members—would be constant and repetitive issues. What would not be frequently observed would be the signs of later group development, such as group cohesiveness, reliance on other group members, the ability to use insight and interpersonal learning, and the security necessary for confrontation and self-disclosure. We propose that group and individual progress in group therapy is less dependent on the stability and constancy of group membership and more dependent on the subtle passage of group norms and values among leader and members (i.e., such norms as the importance of expressing feelings and sharing experiences). Although this does not dispute the helpfulness of stable group membership in the conduct of a 669

therapy group, our hypothesis focuses on the investigation of group process on a primary area in group development and one that is difficult to explore in stable groups, namely, how expectations and norms are passed on in the group. In this investigation, high turnover aids in the observation because of the frequency of the passage of norms. Our investigation comes from experience heading two groups composed of highly transient (average 2-3 sessions) members, the families of hospitalized psychiatric patients. The turnover has been high; 150 people in 18 months have participated. In the groups we shall describe, all that remain constant are the leader, the room, and the time, and yet there has been the sense of a continuous, growing group, in which new members either bypass the earlier stages or move more quickly through them. The group continually reproduces new generations as its members come and go. The evolution can be easily charted. Although structurally these groups have properties of beginning groups, the issues dealt with are those found in long-term, stable groups. We propose that this has occurred by the passage of group norms and values—the legacy of the group—from generation to generation, and the elaboration and growth of the legacy in subsequent generations.

Setting The setting where this work occurred is in a psychiatric inpatient service in an urban, general hospital and the teaching facility of a medical school. The unit offers evaluative and short-term treatment services to a heterogeneous population with acute problems. The patients’

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problems cover a wide range of diagnostic categories and diversity of socioeconomic groups. Teaching and training are emphasized, the unit serving as a training program for psychiatric residents and social work, medical, and nursing students. The patients are initially seen five or six times a week for evaluation; then, based on need, they are seen up to six times a week for a total average of 3 to 6 weeks. Families are required to be involved in the hospital program for the purpose of evaluation and treatment, and this expectation is clearly spelled out upon admission. The most relevant family members—those commonly are a spouse or parents—are seen. Family members are expected to commit themselves to two individual sessions per week, usually with a psychiatric social worker; regular family meetings attended by the patient, family, resident, and social worker; home visits; family night, a patient-staff family dinner, and discussion group; and since the onset, weekly participation in group therapy. The purpose of family work is to evaluate family problems and to help the family deal with the immediate issues and crises that are impairing functioning.

Structure of Groups This paper is particularly concerned with participation in one of the two family groups. In starting these groups, our hopes were to provide more for the family members as well as to facilitate our individual treatment by speeding up certain processes, such as dealing with resistances to seeing themselves as part of the problem and treatment program, and expression of affect, such as guilt, anger, and hopelessness.

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Two groups were started. Structurally, the two groups are composed of what we might call transient members-family members whose group participation is dependent upon their relative’s stay in the hospital, which may be anywhere from 1 week to several months. Group membership from week to week may vary from 1 to 10 members. Group membership is unstable; several weeks after starting, the groups have none of their original members. They become new groups in terms of membership every week. There has always been an overlap of at least 1 old member from week to week.1 The constant factors in these groups, then, are the leaders who have remained the same, the time of the group meetings, and the room in which they meet. When considering all the factors that might influence the evolution of these groups, we must consider the milieu in which they operate, other staff members’ feelings, reactions to family work in groups, and the contact the group members have with one another outside of the group meeting. The milieu of the unit, in which there is a great deal of staff and patient interaction, consists of numerous activity, discussion, and therapy groups. The family members, in addition to the group, have certain institutionalized contact outside of the group—that is, during visiting hours and family nights, although they are generally excluded from the milieu in other respects. The group therapy literature covers little in the area of groups such as ours or groups with transient membership. A basic assumption seems to prevail that stable, long-term membership is essential for the meaningful, progressive, therapeutic development of group dynamics. For example, 672

Yalom (1970) states emphatically the need for stable group membership. He also feels that the initial composition of the group has a powerful influence on the outcome of the group in terms of careful selection of members. Obviously, our initial group of patients is long since gone, and we do not utilize any selection process other than balancing numbers in the two groups. In terms of Yalom’s discussion of younger and older groups, we continually observe some of each in our groups. He states, for example, that as the group grows older, group treatment goals shift from relief of suffering to interpersonal goals, such as communication, trusting, and learning to love. All of these phenomena have been observed as ongoing in our groups. Janis (1968, pp. 80-90) sheds some light on group cohesiveness in groups such as ours. He suggests that group cohesion is sped up in times of group stress, such as loss of a member. The process of grieving and identifying with the lost member facilitates cohesion, as, for example, in a group of soldiers in action. Similarly, John and Elaine Cumming (1962) found that in work-oriented groups in mental hospitals, new members of groups get clues as to what behavior is appropriate, thus anticipating the group’s demands, receiving the group’s approval, and becoming central to the group’s functioning. The converse is also true. Gotland (1972) discusses a long-term group with both transient and long-term membership. He found that the work of the group involved saying “hello and goodbye,” though with each meeting the group handled the issues on a deeper, more meaningful, more appropriate level. Maxmen (1973) studied the patient’s view of short-term group therapy and 673

was surprised that group cohesiveness evolved so rapidly in a group of hospitalized patients, but attributed this to extensive contacts between patients outside of the group situation.

Discussion of Group Change Over the 18 months that these groups have been observed, there has been a shift in the ability of group members to tolerate and express affect, increased group cohesion, a capacity to come as a patient rather than as a relative, a sense of concern and intimacy toward other group members, and a decreased need for guidance from the leader. What also seems to have occurred is an increase in the ability to use insight and interpersonal learning, and an increase in the security necessary for confrontation and self-disclosure.

Ability to Tolerate and Express Affect In particular, the affects expressed that seem to have changed are anger and sadness. Throughout the group we have noticed a tendency to rely on displacement of affect, and we have noted a change. Early on in the groups the major defenses to deal with affect were denial, displacement, and projection onto the patient. An early example of how one of the groups might deal with depressed and guilty feelings occurred during the third meeting of the group, where some tentative discussion of failure of group members in their lives and families was immediately followed by the following dialogue: Group It seems as if the people in the group feel as if they Leader: have failed.

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Mrs. W.: Mr. P.: Mrs. P.: Mrs. R.: Mrs. W.: Mrs. R.: Mrs. W.:

I do. I don’t. I have to try my best. Kids feel they should get everything. It was difficult when we grew up. Times have changed. I feel children should speak up if they’re right, but some neighbors feel they are insolent. The youth of today will run the world of tomorrow.

This kind of defensiveness and tendency to fall back on platitudes and clichés was very common in the early stages of the group. An example 1 year later in the same group, and over 50 patients later, took place as follows: The 10 group members drifted in and began to discuss the past weekend. Mrs. F. My weekend was a disaster. My daughter [describes criticized me at a restaurant on Saturday, and I this with cried publicly in front of everybody. It was mounting absolutely awful. I felt so ashamed. [Other sadness and group members chimed in to tell her that the desperation): first weekend is always very difficult.] Mrs. B. How is your wife? [turning to Mr. M.]:

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Mr. M. I don’t know; my wife has been in and out of [with his mental hospitals for 14 years. She was head bent in a state hospital during the summer and ran and in a low away. She ran away from this hospital last week voice]: and was picked up by the police a hundred miles away, and I had to drive down and get her. I just don’t know if it’s ever going to end. [Mr. M. turns red, chokes up, then turns toward the group.] I can’t go into the bathroom and cry like you [looking at Mrs. W.]. Mrs. V.: My husband cried. Mrs. H.: It’s okay for men to cry. The average number of sessions attended by all members was two, and for the man who cried, it was his first session in the group. What seems to have happened is some increased security and comfort in the open expression of affect from the beginning to later stages of the group, even though none of these patients had been present during the early months of the group. These examples are typical of the consistent changes that occurred first in the early stages of the group and then in the later stages. Similarly, in the expression of aggression, progress has occurred. During the 1st month of the groups, the following interchange took place: Mrs. Is your family member depressed? B. [to Mrs. P.]:

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Mrs. P.: Mrs. B.: Mrs. P.: Mrs. B.: Mrs. P.:

He tried to commit suicide. That’s too bad. It sure is. I’d like to put him through the wall. When you say you’d like to put him through the wall, I don’t think I know what you mean. He’s selfish, thinks I don’t pay him enough attention. I didn’t come to visit him one day, and he got mad at me. He thinks all my time should be spent coming to see him. My wife, too. But it doesn’t bother me, I go to work.

Mr. H.: Mr. I do crossword puzzles. L.: Mrs. Anyway, they’re sick. We have to be understanding B.: with them. They don’t mean it.

In contrast, the following took place a year later with totally different members but in the same group: Mr. A.: My wife doesn’t seem to be cooperating with the program. She won’t admit she has a problem. She’s mad at me because I won’t take her home. I don’t know what to do with her. One minute, she’s okay, the next, like what happened on the street last night, she starts yelling at me and makes a scene. She really makes me mad [with mounting anger]. I feel like yelling at her all the time. I’m at the point where I don’t want to visit her anymore. 677

Mrs. S.: I just saw my son. He’s a mess. One month ago he was self-sufficient, now he has to be fed, dressed, and wheeled in a chair. He’s a vegetable, a thing, I can’t stand him like this. I don’t want him. I can’t have him at home. Mr. R.: I used to feel that way. After all, I’ve been going through this for 9 years, but for the first time my wife is admitting she has a problem. If only your wife would do that, it would be a big step [to Mr. A.]. But I know what you mean. I’d feel like slapping her on the behind and telling her to get out of that bed. Mr. A. And we came here expecting to get some answers, [turning and you just sit there and ask how the group feels. to the leader]: Mrs. S.: Yes, that gets me too. You’re the professionals. All we want is a little guidance, but you refuse to give it. Mr. A. You’re all the same. You just ask us how the group [with feels when we come to you to do something about mounting it. anger]: These examples illustrate the progression of the group’s ability to deal with aggression, the first showing the group members’ need to deny, displace, and cut off angry feelings of one member, and the second showing group members’ ability to deal with these angry feelings.

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Group Cohesion With regard to the increased group cohesion in the early months of the two groups, it was not unusual to have meetings with only one or two people. There was a high degree of lateness and members wanting to leave early; members might come for only one or two sessions and then drop out or come sporadically. In the later sessions we have noted an increase of members continuing to come throughout the hospitalization. Generally, the group members are now in the group room when we arrive, whereas in the beginning there was a tendency for the members to linger in the hall or in the patient’s room, and often they had to be invited to come into the group. There is also a corresponding decrease in confusion as to where the room is. In the 7th month of one of the groups, the one room change in the history of the group was made, and the patients’ feelings about the change seem to reflect increased cohesiveness: Mrs. D.: Mr. Q.: Mr. F.: Mrs. D.:

I don’t like this room very well. It’s like a classroom. There’s no carpet on the floor. It’s cold and bare. The other room was cozy, maybe it was because it was crowded but we were close. I almost felt like we were a family.

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Group Focus It has appeared to us that the family members are more able now to see themselves as primary patients in the group rather than as coming for their relatives. The process is sped up. Initially they see themselves as coming for the relative. Within one session they now see themselves as the primary patient. An example of an earlier experience occurred in the second meeting of one of the groups— where the group members saw themselves as coming for the hospitalized patients. After a brief period of introduction the following dialogue ensued: Mrs. My daughter is starting day care after 5 weeks; things T.: have improved. She moved to another apartment and dreaded the move, as she was secure staying in the hospital overnight. Mrs. They say my son does fine here all day. G.: Mrs. My daughter doesn’t want to be alone and discuss the P.: problems. Mrs. My daughter doesn’t want to be alone either. T.: Mrs. My daughter insisted on coming into the hospital over P.: the weekend though we tried to reassure her so she wouldn’t. Mrs. My daughter felt the same way. T.: A later example with totally different members illustrates change both in the primary focus of the group and how they

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regard themselves. This group meeting occurred 1 year after the inception of the group. There were six members in attendance, four for whom it was a second group meeting and two for whom it was a first. Mr. R. [to I think maybe you can’t give us answers. Maybe the what’s helpful is for us to talk together. leader]: Mrs. S.: I call this group therapy. Mr. B.: I think it is. Sometimes just blowing off steam makes me feel better. Mrs. S.: We seem to find lots to talk about even though I never thought I’d be able to talk in a group. Mr. R.: Sometimes I think I’m as much a patient as my wife. Mr. L.: Absolutely, I think that’s what you come to learn, that emotional problems don’t develop in a vacuum. Similarly, it seems to us that initially the process was more superficial and displaced and that the subject was the patient; though this has continued throughout both of the groups, there is an increase in more meaningful dialogue in terms of interpersonal learning and an increased ability to use insight. Members relate to each other directly rather than to and through the hospitalized family member.

Heightened Intimacy There seems to have evolved an increased sense of caring and concern among group members. As the group has become

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more cohesive, the members are more able to relate to each other in an open and honest way, be supportive to each other, and show concern. Initially, they did not even know one another’s names; gradually we noticed group members beginning to call each other by their names, thinking about one another during the week, and looking for one another during the visiting hours. The process of heightened intimacy seems to occur considerably faster. Similarly, the group members are more able to deal with the ongoing issue of loss. Later in the groups, group members often comment on the missing members or terminated members. For example, in a later session there was the following discussion. After a group meeting in which the basic themes were hopelessness and fears of recurrence of their relatives’ symptoms, the following interchange took place: Mr. Do you remember that woman 3 weeks back who talked S.: about her daughter going to a long-term hospital? Mrs. Yes, that was Mrs. Y. Her experiences were very W.: frightening to me when she talked about her daughter needing 6 months of hospitalization. Mrs. Do you remember that man who talked about his wife F.: having been sick for years? It made me feel very hopeless. This vignette illustrates the members’ increased capacity to deal with loss openly and with caring and concern for other group members. It also reflects the group’s awareness of the sense of history of the group.

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Dependence on the Leader In both groups members have gradually depended less on the leader for the focus of the here-and-now feelings of the group. Early on we found ourselves frequently focusing the group on the issues at hand and defining the feeling tone of the group. Later we found that group members were more able to take on this task. The following example occurred in one of the groups: Mr. My wife didn’t want to come to the hospital. She made a L.: suicide attempt and had to come. Now she wants to leave. I don’t know what to do with her. Mrs. You feel helpless I bet. I know exactly what you’re D.: going through, caught in the middle. You wanted her to get some help, yet if you push her, she’ll get mad.

What Made for Changes Why have these changes occurred in the groups? It seems to us that there are a number of variables that might be considered causative factors: (a) the milieu of the unit surrounding the groups changed from a primarily occupational therapy approach to a group-oriented approach to patient care; (b) the leaders have evolved, grown, and changed; and (c) group norms and culture get passed on to new group members through a legacy.

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Shift in Milieu The shift in the milieu served as an impetus and support to family groups through our regular reporting at patients’ rounds of our groups and our utilization of our own group experience and our supervising other kinds of groups in the milieu. The commitment around the worth of the groups has been enhanced by a supportive milieu. This has clearly had some impact. However, the milieu made this radical change 9 months after the inception of our groups, and the changes we are describing here were already in the process of occurring.

Skill of Leaders There is no question that the group leaders have grown a great deal during the course of the groups. Though having had some knowledge and understanding of group therapy prior to running family groups, neither had led a group. Clearly, increased knowledge and comfort with the groups have enhanced the therapeutic process. One of the difficult countertransference problems dealt with is the issue of continual loss and the frustration inherent in that. Probably some of the difficulties around this have been worked through in ongoing weekly supervision. In fact, though the groups have continually changed in membership, one constant has been the supervision. Clearly, the leaders’ growth and increase in sophistication played a role in the evolution of the group, but whether this is sufficient explanation is an open question.

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The Legacy of the Group The most important factor in the evolution of the group seems to be some kind of legacy whereby group norms and group culture get passed on from generation to generation. The legacy can be subtle interaction between the group leader and certain group members and/or an interaction among group members themselves. An example of the leaders’ encouragement transmission of the legacy is as follows:

of the

Mr. B. was the only one of the six in the group who had attended one group session previously. The group might thus begin: Mr. B. Who do you have in the hospital? [looking to a new group member]: Mr. W.: My daughter. Mr. B.: My wife is in the hospital. [Silence.] Mr. W. What is the purpose of this group? [looking at the leader]: [Leader remains silent but unconsciously glances at Mr. B.]

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Mr. B.:

She doesn’t answer questions. She never says anything. This is a place that families have to come and talk about their feelings, and you sort of find out that other people are in the same boat. Sometimes you can learn from other people’s experiences.

Thus the norm of the groups doing the work and the value placed on feelings get passed on to the new members. In some ways this might be seen as a kind of didactic experience or conditioning technique where actual learning is transmitted. As in the above example, the leader may encourage the old group to transmit the legacy and focus the group’s attention on the old member, thereby giving added emphasis to his words; the leader may also at other times unconsciously play down, ignore, or exclude certain members of the group who do not conform to the norms of the group. The process of the passing on of the legacy can also be independent of a conscious or unconscious intervention of the leader; that is, the legacy is passed on by a group member. In the 10th month of one of the groups the following dialogue occurred. One group member who had been in the group for approximately 10 sessions was terminating. Mrs. Well, I guess this is my last time today. I feel like the D.: grandmother of the group. Mrs. I guess you have been here the longest. B.: Mrs. I’ve been here 10 times. I’ve only missed 1.1 remember D.: when I first came. The leader had a hard time getting me to come back. We didn’t know what to talk about. There 686

were long silences, but then we gradually began to talk about how hard it was for us and how mad we got sometimes or how sad. I began to feel like the group was a second family. 1 remember one time when there were only two of us here. Mrs. B. was the other member. I often wonder how she’s doing. She was the woman whose husband had tried to commit suicide. I think of her from time to time. We have exchanged phone numbers, but I haven’t spoken to her since she left the hospital. Then there was Mr. B. I think he was here as long as me. His wife was depressed and he was discouraged, but she got much better and he seemed to be more hopeful about the future. And there was Mr. D. He was something else. He disagreed with everything everybody said. I’ve seen a lot of people pass through here. When my daughter had her first admission there was no group, but for this admission there is and I’m glad. It helps you to feel that you’re not alone. I might even forget that I’m leaving and come back next week. In this case we see an active transmission of the group’s history from one member to the group. Similarly, here is another example of a man who had attended the group every other week for a total of four sessions during his wife’s 9-week hospitalization. At his last group meeting he said the following: Mr. Before the group ends today I guess I’d better say my B.: goodbyes. My wife is leaving today and she has improved a lot. It’s not going to be an easy road ahead, but we’re going to continue at the mental health center. My wife was here before, about a year and a half ago. 687

The program was very helpful, this time too. I didn’t want to come at first, and I haven’t been able to come every time because of work. But each time I come, I’m glad I did. As most of you know, I’m an outspoken person. I don’t beat around the bush, and I’ve been able to do that in here. When I first came I felt terrible, but talking with everybody we all felt terrible together. We even put you on the hot seat sometimes [to the leader]. But I’ve had the feeling that everybody cares, and I know that even though I’m leaving I won’t forget the hospital. I hope people aren’t going to forget me. I’d like to just feel that sometimes I can drop into the hospital and say “hello. “ Mrs. I didn’t even know you before today, but I find myself R.: hoping that everything goes well for you. Good luck. These vignettes are overt examples of the passage of the legacy. However, almost every session is marked by covert expression of group culture and norms—that is, the group member who is able to express directly certain affects, raise certain issues of group process, or deal with transference issues. This kind of group behavior demonstrates to new group members how one behaves in a group, and perhaps what a leader wants in a group member. The old group members serve as models for identification, set the stage and the tone, and after some observation and learning on the part of new group members, some learn how to be a part of the group. An example occurred in one group in its 11th month. Present were one member who was terminating after five sessions and a couple who were in the group for the first time.

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Mr. L. Well, as the old member and this being my last [old time I guess I should tell you what the group is member]: like. It’s a helpful place where all members have something in common- someone who is close to them is hospitalized. In the group we talk about anything we want, the patient’s problems or our own problems. We get help from others, and we give help to others. Mr. G.: My son has colitis. It’s really a medical problem. [He goes into great detail about the colitis.] Our son is a little low in spirits because of this medical problem. He also has lost a lot of weight. I guess he’s over here for a rest and to gain weight. Mr. L.: I’ve heard that colitis is related to emotional problems. I think that as you keep coming to the group you will realize how much of an emotional problem it is. I think you’ll change some of your ideas. What we have all learned is that we’re involved in the problem. Here is a concrete example of the old member passing on certain group values. The new member is focusing on an early group issue—the patient; the old member cuts through the denial and corrects the new member. A certain amount of identification, imitation, peer pressure, learning, and competition for the leader may operate. Clearly, the group members learn group processes more readily from one another than from the leader, as is often the case in group phenomena.

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Conclusions This paper questions the emphasis on stability of group membership as vital for group progress and proposes an evolutionary process. Experience leading two groups composed of highly transient members (relatives of patients on a psychiatric inpatient unit) has shown that despite the high turnover a steady process of group formation and growth has occurred. These groups were initially concerned with the beginning group issues of dependency on the leader, lack of group cohesiveness, denial of problems, and use of clichés in seeking to aid other members. But instead of these becoming the only themes, characteristics of later group development have consistently been present, such as group cohesion, reliance on other group members, the ability to acknowledge and express affect, the capacity to feel and express intimacy, the ability to use insight and interpersonal learning, and the security necessary for confrontation and self-disclosure. The ability of group members either to pass rapidly through or to bypass the beginning stages, and to participate in relation to later issues, seems to be due to subtle passage of group norms and values among leader and members. We have used the instability of our groups’ membership as a model to study the way in which these norms or group history are passed from generation to generation of group members, and to trace the effect of this passage on the evolution of the group. This passage, or legacy, may be transmitted through an interactive process between the leader and the group members or independently by old members to new members. The legacy carries over from generation to generation and seems to stabilize the group in spite of its instability of membership.

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We have also considered several other factors that might contribute to the growth and progress of these groups, such as the increasing skill of the leaders, the environment in which the groups occurred, and the various factors reported in relation to short-term or time-limited psychotherapy that seem to speed up the therapeutic process.

Notes 1 For one group, the mean number of sessions attended by members is between 2 and 3, and (he median is 3. The longest time spent by one member in this group is 14 sessions; the shortest is 1 session. For the other group, the mean number of sessions is 2, and the median is 4. The longest time spent by one member is 17 sessions; the shortest is 1 session. Reprinted from Social Work in Health Care, Volume 3(4), Summer 1978.

References Cumming, & Cumming, E. Ego and milieu. New York: Atherton Press, 1962. Gotland, J. H. A “hello” and “goodbye” group. International Journal of Group Psychotherapy, 1972, 22, 258-261. Janis, I. L. Group identification under conditions of external danger. In D. Cartwright & A. Zander (Eds.), Group dynamics: Research and theory. New York: Harper & Row, 1968. 691

Maxmen, J. S. Group therapy as viewed by hospitalized patients. Archives of General Psychiatry, 1973,28,404-408. Yalom, I. D. The theory and practice of group psychotherapy. New York: Basic Books, 1970.

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Rehabilitation Mastectomy: The Process

After Group

Sona Euster, MSSA, ACSW At time of writing Ms. Euster was a social worker assigned to the Breast Service, Memorial Sloan-Kettering Cancer Center, 1275 York Avenue, New York, NY 10021. The author wishes to thank Mrs. Evelyn Côopcr, CSW, and Ms. Judith Trachtenberg, CSW, for their invaluable assistance in the preparation of this article. SUMMARY. Mastectomy is a frequently performed, emotionally stressful surgical procedure. Based on theories of loss and grief and crisis intervention, an in-hospital group program has been established to facilitate rehabilitation of patient and family. This paper discusses the alleviation of grief reactions and the fostering of growth-producing behavior through early postoperative participation in such groups. The function of the social worker as a member of an interdisciplinary team is examined, with particular focus on skills involved in promoting and enhancing the group process.

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Crisis Aspects Mastectomy

of

Diagnosis

and

Despite the frequency of mastectomies among the rich and famous who return to careers and hobbies with little apparent difficulty, according to the upbeat, optimistic communication media, women of all ages react with dread to breast cancer and the treatment of choice, mastectomy. One-third of the 90,000 women who develop breast cancer each year will die from it. It is the number one cancer killer of women. Because of the emotional upheaval experienced by patients who undergo breast surgery, it is incumbent upon mental health professionals to utilize intervention modalities that enable women to cope with the meaning and impact of the mastectomy as a traumatic experience. The hospital social worker with specialized skills in crisis intervention, understanding the interrelationships of psychological, social, and environmental factors is uniquely suited to these tasks. This paper will discuss a program developed and instituted at the Memorial Sloan-Kettering Cancer Center utilizing the group modality to assist patients and families with the crisis aspect of the mastectomy experience. The program is composed of two groups, one for the patients and one for patients and spouses. The role of the social worker, and the usefulness of a method based on crisis theory, will be explored. “Crisis in its simplest terms is defined as an upset in a steady state” (Rapoport, 1962). The homeostasis with which a person is comfortable is disrupted, and previously successful coping mechanisms do not sufficiently and rapidly lead to 694

reestablishment of equilibrium. The diagnosis of cancer and the loss of a breast combine as an extremely traumatic event that frequently precipitates a crisis. The mastectomy patient undergoes an experience that poses a threat not easily handled by past coping patterns (Rapoport, 1962). The prospect of prolonged illness and possible death creates a sense of vulnerability and loss of control that is not quickly alleviated. Postoperatively, the patient is aware that a precipitating stressful event, the mastectomy surgery, has led to significant and rapid cognitive and affective disruption. This upheaval, characterized by anger, depression, fear, and lack of comprehension, lasts for days, even weeks, and is unusual for the person experiencing it (Bloom, 1965). The state of crisis refers to the state of the reacting individual who finds him/ herself in a hazardous situation that may be perceived as a threat, a loss, or a challenge (Rapoport, 1962). The mastectomy poses threats and losses that are likely to induce a crisis state of varying degrees of intensity in most patients. Almost every aspect of an individual’s life is threatened by this procedure. Physical health, physical capacity to function effectively, self-image, sexual identification, and previously accepted roles as worker, homemaker, wife, mother, all seem jeopardized in the initial postoperative period.

Integration of Loss The losses incurred by mastectomy are potential and real, emotional and physical. The diagnosis of cancer itself represents a number of losses for a majority of women. The most threatening and frightening is possible loss of life. Patients often begin anticipatory grief work by reviewing their lives and reassessing their priorities. Coupled with the 695

possibility of death is the destruction of one’s sense of immortality. Intellectually, we realize that we will not live forever, but often the diagnosis of cancer drives home one’s mortality and vulnerability in a way not previously experienced. The sudden onset of serious illness induces feelings of loss of control over one’s physical well-being and of betrayal by one’s body. Patients may experience a lessening of security and welleing. They express sadness over their inability to feel safe and healthy, and resentment about their anticipated loss of freedom— freedom from illness, fear, and constant medical supervision. Margaret Mead (1949) held that in the United States the female breast is the primary source of feminine identification. The breast as a symbol of sexuality and femininity does not appear to be affected by age or cultural factors. It represents physical wholeness and attractiveness. The loss of the breast shatters a woman’s body image. Therefore, women have altered feelings about their femininity at the time of mastectomy. They feel, as many have stated, “ashamed,” “mutilated,” “freakish,” “half-a-woman,” “sexually repulsive.” They have lost a part of themselves and often feel uncertainty about their identity. There is a sense of no longer knowing or recognizing one’s own body, and the necessity to integrate a changed self-image. Often, the positive and secure feelings that contribute to one’s sense of self are diminished, and the question “Who am I?” is raised repeatedly. “The most universal reaction to such loss is that of grief, accompanied by depression and anxiety” (Schoenberg & Carr, 1970).

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Patients may mourn the removal of the breast as they would the death of a loved one. They grieve for the loss of the body part as well as what it has meant to them.

Past Losses Revisited This surgery often reactivates past losses. “When closely examined the reactions of grief… may be related to a revival of feelings about a previous significant and symbolic loss” (Schoenberg & Carr, 1970). A widow relives the death of her husband, and many patients actively mourn the loss of a parent. This is particularly so when they have not completely integrated the death or when, as is often the case, it was caused by cancer. It is the threat to instinctual needs that triggers these unresolved conflicts and forces them into consciousness (Rapoport, 1962). Recognition of this phenomenon is important because it provides the helping professional with some understanding of how the patient has dealt with past losses. These past patterns have implications for how present losses will be managed and what new coping mechanisms need to be developed. Reactions to these losses are consistent with the grief reactions described by Freud (1974). Patients experience denial, sadness, anger, withdrawal of interest in outside activities. They are self-involved after surgery and manifest little concern for others except in a narcissistic, self-referential manner. “Profoundly painful dejection, abrogation of interest in the outside world, loss of the capacity to love, inhibition of all activity” are clearly visible. Patients welcome the protection of the hospital and are relieved at not having to deal immediately with the “real”

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world. They often refuse visitors, except close family, preferring to involve themselves with other patients undergoing the same depression and pain. This process of mourning is a slow, difficult journey that begins prior to surgery and continues well after discharge from the hospital. It is one of the most common crisis responses evidenced by mastectomy patients.

Sequence and Timing of Changes Although emotional reactions do not rigidly follow a timetable, there are certain predictable responses during hospitalization. It is during this period that patients begin to absorb the impact of the mastectomy, although initially it may be denied. At the Memorial Sloan-Kettering Cancer Center, as in most of the United States, it is difficult not to know that mastectomy surgery is performed primarily for cancer. However, women often deny the seriousness of the illness or the reality of the breast amputation. Once this denial diminishes, often within a few days, we see sadness, depression, anxiety, fear, and anger. Anger is typically the most unacceptable feeling for these patients, and they displace it onto their surgeons, other hospital personnel, and family members. Hospitalization itself represents a disruption in daily living, and patients find themselves resentful of hospital routine and temporary loss of self-determination. There is a dependence engendered by the medical care system which most patients have difficulty tolerating. A few, however, become overdependent and refuse to perform the simplest tasks of self-care. In either situation, patients are reacting emotionally to an experience that is new and uncomfortable. It is these reactions that must be coped with in 698

order to accomplish the long-range goals of crisis resolution specified by Klein (1971). Ultimately, a woman must accept the breast loss by mourning it fully, she must reintegrate a worthy self-image, and she must make peace with the constant threat of potential recurrence. These goals cannot be realized fully during the brief hospitalization mastectomy requires. They can be approached, however, and the foundations for future work laid. In order to do so, patients must achieve (a) correct cognitive perception of the situation coupled with seeking new information, (b) management of affect through awareness of feelings and their verbalization, and (c) development of patterns of seeking help by using interpersonal and institutional resources (Rapoport, 1962). If these intermediary steps toward crisis resolution are begun during hospitalization, the long-term goals (Klein, 1971) are more likely to be realized.

Intervention by Group Process At the Memorial Sloan-Kettering Cancer Center the use of group modality as the vehicle for approaching the tasks identified by Rapoport (1962) has proved successful. Although crisis theory does not provide the rationale for group work intervention, it is helpful in the effective use of this modality. At time of crisis, people become more susceptible to the influence of “significant others” in the environment (Rapoport, 1962). Group members and leaders are significant others from whom a patient derives support and assistance. From these others patients can hear information that provides correct understanding of their situations. Presence in a group lessens a patient’s sense of isolation and aloneness. The group 699

permits and encourages verbalization of feelings and assists in developing patterns of help seeking. The patient becomes aware of the universality of some of her questions and reactions. The group is a vehicle that provides hope through the presence of members who have already coped with a particular problem and through the shared experience of the problem-solving process. Groups provide a format for imparting information, developing imitative behavior, interpersonal learning, and catharsis (Yalom, 1975), all of which are crucial in the process of crisis resolution.

Structure of the Group Program within the Hospital At the Memorial Sloan-Kettering Cancer Center approximately 4,000 mastectomy patients in the past 8 years have participated in a program composed of two groups. These groups have been structured to focus on the tasks described by Rapoport (1962). Although the program is now an integral part of patient care in the Memorial Hospital Breast Service, approved by the medical staff and strongly supported by physicians in their contacts with patients, historically, the instrumentation of these groups incurred resistance and a multitude of problems. Memorial Hospital is uniquely suited to such a group program because it serves only cancer patients, it is organized by site of disease so all mastectomies are on one unit, and it provides a large population (approximately 750 mastectomies in 1977). Even so, such difficulties in program development as may be expected in any hospital setting were encountered. Initially, physicians were skeptical of the need and purpose for such a

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program. Significant factors in the diminishing of this skepticism were: the sanction of the chief attending physician of the Breast Service, ongoing discussions among group leaders and surgeons, and patients’ positive responses to the group which began as a 3-month pilot project (Trachtenberg, 1972). The primary group comprises all mastectomy inpatients and is an important component of total rehabilitation (Trachtenberg, 1972). It meets daily and is led by an interdisciplinary team of physical therapist, nurse, and social worker. The secondary group meets weekly, its purpose being to enhance communication between couples in order to facilitate family adjustment. It is led by the social worker and serves patients and their husbands or close male friends. Both groups incorporate volunteers who have had mastectomies. Effective interdisciplinary leadership requires understanding each other’s roles and supporting one another within the group. The achievement of openness and comfort with other disciplines entails ongoing questioning, challenging, and examination of roles, skills, and techniques. No interdisciplinary team functions perfectly; each discipline has its own goals and concepts of patient care. However, with a commitment to purposeful communication this kind of teamwork is a substantial asset to the rehabilitation of the postmastectomy patient. The relationship between professionals and volunteers was a potential source of friction. Volunteers do not necessarily understand the roles of the professionals, particularly that of the social worker. Since they have undergone the same experience, they may feel that they are capable of meeting all of the patient’s needs. Some 701

volunteers feel threatened by any new program that appears to diminish their role. To minimize these difficulties and enhance the volunteers’ functioning, there must be opportunity for interaction between staff and volunteers. Exchange of reactions, questions, and suggestions is needed. The volunteer is another team member with her own particular skills, and therefore, the principles of communication and discussion apply to the shared work. Mechanical problems about length, time, and content of group meetings have been worked out by study and recognition of applicable theoretical materials as well as trial and error.

Content and Format The Post Mastectomy Rehabilitation Group meets every weekday morning for an hour and a half. Prior to each session, the group leaders confer with nursing staff to exchange information about patients. Their medical situations, physical or emotional problems, and reactions to previous group sessions are discussed, and treatment plans for the group and the hospital unit are formulated. Patients begin to attend the session on the 2nd postoperative day and continue until discharge. Attendance is not mandatory but strongly encouraged by all staff. Introduction of the group and its design are presented by the social worker at each session. Patients are informed of the group structure and its purpose in aiding them with the initial physical and emotional adjustment to mastectomy. Following this, an exercise program is conducted by the physical therapist to aid patients in achieving a normal range of motion in the affected arm. These women have experienced physical losses such as decrease of arm and shoulder function during the initial 702

postoperative stage. Removal of chest muscles, pain, and discomfort produce a limited range of motion in the operative arm. This restriction of activity contributes to a sense of helplessness and loss of mastery. The therapist teaches and supervises the execution of five specific exercises, explaining their purpose and importance. After the exercises, Tuesday and Thursday, the nurse informs patients about types of surgical procedures and removal of lymph nodes, and instructs them on the need for hand and arm care, and care of the wound postdischarge. She also provides preliminary information regarding prostheses. Three times a week, Monday, Wednesday, and Friday, patients participate in a discussion of their concerns and emotional reactions related to the diagnosis of cancer and the surgery. The group size is 9-12 patients per session, with each patient attending an average of three to four times prior to discharge. Each day new patients may attend and others may be discharged. The daily repetition of the exercises serves a double purpose: It provides patients with an opportunity to complete one of five exercise sessions prescribed per day, and it enables them to begin the work of developing trust and group cohesion. By working together on a physical activity, patients meet one another and begin to recognize commonalities in their situations. They begin to know one another through a shared mutual task. Since this is an open-ended group, there is a continual need for emotionally safe common ground for the initiation of group process. The exercises provide this. Repetition of the nursing information twice weekly and alternation of this with the discussion periods contribute to a

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unique meshing of facts and feelings, each enhancing the other. The nursing sessions enable patients to gain control over their situations by learning factual material. These also provide “breathing space” to integrate the emotional strides made during the discussion sessions. The physiological information provided during the nursing sessions, particularly the subjects of hand and arm care and prostheses, often triggers emotional reactions. Fears of restricted activity and anger and sadness at the need for an artificial breast are expressed. Patients may become tearful at the sight of the prostheses or reveal their anxiety verbally through excessive and repeated questions. Although professional recognition of these responses is immediate, a more in-depth exploration of the feelings and methods of dealing with them is provided during a discussion session the following day. These discussion sessions, approximately 45 minutes in length, are conducted by the social worker with the assistance of a Reach to Recovery volunteer. Reach to Recovery is a branch of the American Cancer Society consisting of trained volunteers who have previously undergone mastectomies. The former patient volunteer provides honest reassurance. Although she looks, acts, and is healthy, she does not present a Pollyanna picture of her experience. She shares negatives and positives of having undergone a mastectomy and, in so doing, allows patients to see that they can overcome their sense of devastation and eventually achieve a satisfying life-style. As well as hearing about another’s experience, patients are encouraged to begin talking about their own. Often, patients are unclear about the specific factors in their overall reactions. 704

The social worker facilitates expression and articulation of feelings. She questions patients about their experience, clarifies the meaning of their statements, and, if necessary, confronts them with her perception of their behavior. This focused discussion yields identification of particular concerns. Thus, the patient takes the first important step in understanding and assimilating this event.

Helping Group Members Help Each Other As patients share what they soon learn are common concerns, the greatest source of support stems from the group itself. Through their exchange of reactions, they begin to lose their sense of isolation and strangeness. There is a feeling of working together on mutual problems, and the emotional bond is very strong. The social worker builds upon this underlying commonality and uses it to facilitate openness in the group. Such a process makes the group a safe place to express oneself (Rapoport, 1962). Mrs. M. came to the group on Friday, her 2nd postoperative day, and remained silent. She was tearful at times during the discussion but made no move to verbalize her reactions. Her behavior indicated that she was not yet ready to participate actively. By not calling upon her, the social worker gave her permission to remain silent and withdrawn. On Monday, however, her halting verbal participation and her body language indicated her desire to talk. Aware of this, the social worker assessed the other patients’ emotional readiness to

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hear what might be offered. This assessment consisted of recognizing the intensity of Mrs. M.’s struggle, judging the other patients’ emotional states from the tenor of the discussion, and weighing the risks and benefits of Mrs. M.’s ventilation for herself and the entire group. Having quickly accomplished these tasks, the social worker paved the way for Mrs. M.’s tears and fury. The patient proceeded to express and, by means of the social worker’s questions, clarify her anger at her mutilation, loss of control, and sense of helplessness in the face of the “monster cancer.” Mrs. M. was encouraged to vent completely and honestly her true feelings. Relinquishing what she thought to be the control she had struggled to maintain until this time relieved Mrs. M. of a tremendous emotional burden. Having put these vague feelings and tensions into words, she had a greater understanding of her reactions, and, therefore, regained some sense of equilibrium. At the end of the session, she thanked group members for bearing with her and aiding her to gain the comfort she felt. The group members and the social worker allow for this honesty. The social worker must be continuously alert to group interactions. She evaluates patients’ readiness to give and accept painful feelings, she protects patients in distress by accompanying them in each step of the sharing process, she draws out other group members who verbally identify with and support the speaker. She uses her knowledge to assess whether one issue has been covered sufficiently and, when indicated, moves the group to focus on another. The key issues for all patients are the meaning of the cancer diagnosis and the loss of the breast. They may be expressed in a variety of ways, directly or 706

indirectly. To assess when to move the discussion to a different issue, the social worker must be attentive to physical reactions such as facial expressions and shifting of positions as well as to verbal distractions such as jokes. Each group has its own needs and tolerance for these issues, and the social worker must be sensitive to the tone of the sessions. The social worker also uses her skill to maximize the impact of the Reach to Recovery volunteers. She determines at which points during the discussion a volunteer’s experience would prove most beneficial and facilitates this participation. It is the climate of openness and ability to share that enables patients to identify specific problems and work on them in order to begin arriving at possible solutions. Discussions often center on whether and how to tell children what has happened, the anticipatory anxiety of returning to work, how to deal with curious and sometimes tactless visitors, and what being out of the hospital will be like. Examination of such specific concerns often assists patients in clarifying their own thinking and ultimately arriving at a plan or solution either during hospitalization or postdischarge. During a group session, Mrs. W. raised the vital and common concern of looking at her incision. She stated in the group that she would never look at herself. Group members pointed out to her the impracticality of such an attitude. A few patients told of their experience of “looking,” and their sense of relief at having accomplished this previously dreaded task. The interchange, coupled with the social worker’s probing questions, enabled Mrs. W. to realize that she did not want to look because by not looking, and with the presence of bulky bandages, she could pretend her breast was still there. The group discussion provided her with a conscious choice: She 707

could continue her fantasy, or she could knowingly take a giant step toward coping with her present reality by looking at her incision. A few days later, Mrs. W. shared with the group that she had thought about what had been said. She decided she needed to see herself as she actually was and chose to do so while still in the hospital where she felt the support of fellow patients and professional staff. She expressed her relief at having seen herself, stating “it wasn’t as bad as I’d imagined.” In this instance, as is often the case, the group aids each patient in arriving at solutions and generates the support and encouragement needed to implement them. Mrs. W. used the group to work through her denial of the breast loss, mourn its absence, and begin to integrate her new body image. Through the use of the group, patients actively participate in their physical and emotional recovery, thereby achieving a sense of control and mastery.

Differential Use of Casework and Group Work Not all patients willingly take part in the group program. Miss D., a 53-year-old single woman, walked out after 10 minutes of her first discussion session. Other patients were talking about cancer, recurrence, and the possible suffering and death that might result. It was clear to the social worker that Miss D. found this talk threatening because it touched those areas most painful to her. Therefore, the social worker 708

interviewed this patient individually, as she does routinely with certain patients, to explore what was behind her departure and, hopefully, to enable her to return to the group. The individual session focused on helping the patient express and clarify her reactions to the surgery and the group discussion. Exploration with the patient revealed deep underlying anger, a conflict around dependency needs formed in early childhood and intensified by a recent hospitalization for an unrelated problem, as well as a nagging fear of losing control in the group. Having assessed Miss D.’s ego strength, the social worker connected these issues to the patient’s reaction in the group concentrating on her need to repress her feelings rather than her sense of deficits of the group program. This social work intervention, coupled with the extremely important reinforcement it was given by the patient’s surgeon, enabled Miss D. to return to the group and use it to begin exploring concerns of looking at the incision, telling friends about her surgery, and discussing what she saw as the unique problem of an unmarried woman. Continued participation in the group along with ongoing casework allowed Miss D. by the end of her hospital stay, to share with other patients the benefits of the group for her and the process she had undergone to arrive at this stage. By so doing, she was consolidating her growth as well as reaching out to assist new patients in overcoming similar difficulties. Because Miss D. presented a number of long-standing problems, she continued individual counseling with the social worker postdischarge. The focus of these contacts was to explore in greater depth Miss D.’s resistance to looking at her 709

incision. This intervention resulted in Miss D.’s clarification of her fears of death and invalidism as well as her past sense of failure as a woman which was reinforced by the mastectomy. Short-term casework allowed her to resolve this crisis rather than be overwhelmed by it and, thereby, to resume her previous life-style (Klein, 1971). It is important to recognize that although Miss D. and other patients like her require individual social work intervention to utilize the group program and to explore their fears and anxieties, most patients approach this task within the group. In order to assess which patients will require most extensive professional intervention, the social worker must be aware of past history, previous psychological problems, and overt and covert messages conveyed by patients leaving the group, refusing to attend, behaving disruptively during a session, or overreacting to what has occurred. Individualizing patients, bridging any existing gaps between the group process and specific patient reactions to the group, and coordinating individual and group treatment to enhance patient care are among the most important tasks of the social worker in the Post Mastectomy Rehabilitation Group.

Couples’ Group The second group in the program was proposed because of the usefulness of the daily group and the high percentage of married women undergoing mastectomies. Recognition of the impact of this experience on families and intimate relationships provided the theoretical basis for this group. Relatives react with fear, sadness, and anger, and very often the mutual responses of husband and wife set the tone for

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those closest to them. In order for both patient and husband to receive the support needed during the hospital stay and to lessen feelings of isolation, this group was added to the program. It is an evening couples’ group that meets once a week and is composed primarily of patients still in the hospital and their husbands or close male friends. It provides an opportunity for couples to explore with others in similar situations the meaning of the mastectomy for themselves, for their relationship, and for their families. A volunteer couple, a woman who has previously undergone a mastectomy and her husband, are present and serve a purpose similar to that of the Reach to Recoveiy volunteers in the daily session. The evening group serves as a springboard for further in-depth communication between each couple. It is often the first chance these men and women have had since surgery to talk about the issues involved. The group provides the safety and trust often required for patients or husbands to initiate discussion of “painful” concerns such as threats of recurrence or fears about sexual intimacy. Mr. and Mrs. Κ., although obviously a close and caring couple, had not talked together about their sexual relationship prior to the couples’ group. Mr. K. had ignored the subject; Mrs. K. had joked about it in the daily group. Discussion in the evening allowed their worst fears to be verbalized. Mrs. K. hesitantly expressed the shame about her body she anticipated when home. This statement and the subsequent support the couple received from the group enabled Mr. K. to voice his fears of temporary impotence during their first intercourse. Although stating the fears does not immediately eliminate them, the sharing removed some of the barrier and awkwardness Mr. and Mrs. K. had felt in relation to each other. At the end of the 711

session they were relieved, seemed close to one another, and were saying honestly, for the first time since surgery, that they were looking forward to her homecoming. The couples’ group adds another dimension to the program of rehabilitation for the mastectomy patient. It includes one of the patient’s closest loved ones, and almost immediately the crisis is shared verbally. This communication lessens the burden for both the patient and her husband and allows for cooperation in problem solving. Because patients in crisis are amenable to the influence of people important to them (Rapoport, 1962), this time-limited group experience offers benefits far beyond its temporal significance. What couples feel and say to each other in an hour and a half matters and will be drawn upon repeatedly by family members as they continue to work at crisis resolution at home.

Conclusion These two groups for postmastectomy patients have proved a viable method of assisting them and their families in coping with this crisis. Recent data indicate that participation in the postmastectomy program shortens the time necessary for physical and emotional adjustment (Winick & Robbins, 1977). Patients and families are better equipped for discharge after approximately 1 week’s hospitalization because time spent in the hospital is used productively. The process of crisis resolution is well underway. As one woman commented in her response to the questionnaire evaluation of the program, “The very existence of such a group shortened the long hospital stay with a positive, productive, and provocative experience, helping me define, understand, and start to accept

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the fact of my mastectomy. Seeing and sharing with others their similar operations and emotions tended to soften my self-pity as I realized the universality of reactions.” Participation in a structured group program that addresses the physical, medical, and emotional aspects of mastectomy surgery allows patients to regain a sense of control and mastery over themselves and their situation. “Sharing thoughts, emotions, fears, aches, and pains; exploration of the surgery; demonstration of the exercises; group discussion—all helped me accept the whole idea of my mastectomy more realistically and less traumatically.” This kind of patient response is not unusual. Analysis of questionnaire evaluations revealed that 98% of the patients found the Post Mastectomy Rehabilitation Group Program helpful (Winick & Robbins, 1977). Such responses indicate that participation in group programs is a significant aid in coping with the impact of radical surgery and changed body image. Out of knowledge and conviction, social workers in health care can provide primary impetus for initiating and institutionalizing groups to help patients and families handle the crises of illness, disability, and treatment.

Note Reprinted from Social Work in Health Care, Volume 4(3), Spring 1979.

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References Bloom, B. L. Definitional aspects of the crisis concept. In H. J. Parad (Ed.), Crisis intervention: Selected readings. New York: Family Service Association of America, 1965. Freud, S. General psychological theory. New York: Collier Books, 1974. Klein, R. A crisis to grow on. Cancer, December 1971, 28, 1662. Mead, M. Male and female: A study of the sexes in a changing world. New York: William Morrow, 1949. Rapoport, L. The state of crisis: Some theoretical considerations. Social Service Review, 1962,36, 24. Schoenberg, B., & Carr, A. Loss of external organs: Limb amputation, mastectomy, and disfiguration. In B. Schoenberg, A. Carr, D. Peretz, & A. Kutscher (Eds.), Loss and grief: Psychological management in medical practice. New York: Columbia University Press, 1970. Trachtenberg, J. Team involvement and the problems incurred. In Rehabilitation of the cancer patient. Chicago: Year Book Medical Publishers, 1972. Winick, L., & Robbins, G. Physical and psychological readjustment after mastectomy. Cancer, February 1977,39, 478.

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Yalom, I. D. The theory and practice of group psychotherapy. New York: Basic Books, 1975.

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Commentary An early emphasis on social work with individuals (casework) has been maintained through the past decades, somewhat modified by the shift toward population-based approaches in health care settings. Social work practice has always been family focused in recognition of the vital part played in the patients’ treatment, recovery, and care by family members who are caregivers, supporters, providers, comforters, and advocates (Miller, 1983). In recent years, with ever shorter episodes of in-patient care and the ever-growing prevalence of chronic illnesses, direct service programs have shown a resurgence of attention to families and support networks (Vera, 1980; McCollum, 1979; and Ross, 1978). In medical settings, social workers lead groups for patients and family members to provide help around the impact of hospitalization; coping with and adjusting to illness, disability, and treatment; the process of planning for discharge from the hospital and the assumption of caregiving functions (Appolone and Gibson, 1980; Johnson and Stark, 1980; Ross, 1979). Groups are particularly effective in sharing information about specific illnesses and facilitating mutual aid and support among members (Brown, Glazer, and Higgins, 1983). A population approach permits consideration of how to best help patients with particular kinds of problems in specific settings. It provides the basis for determining whether the unit

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of attention will be the individual patient, the patient and family together, a group of patients, family members experiencing similar difficulties, or any combination of these. Whatever the unit of attention selected, social workers practicing in health care call upon a repertoire of skills to fulfill a variety of functions; working directly with patients and families, advocating, collaborating, educating others, and influencing organizational policies on their clients’ behalf. Population approaches to needs assessment make possible the treatment-of-choice instead of the more haphazard decisions based on worker interest and skills or physician identification and preference. A population approach can also provide a base for preventive programs and data for influencing needed institutional changes in patient care programs. This approach benefits from social work research that identifies predictable service needs of specific populations and reciprocally provides a stimulus for further research to examine outcome data of groups of patients. These activities broaden our knowledge base and foster refinements of practice. Among the new and valuable programs thus developed are preadmission screening and orientation for patients and their families and a variety of short and longer term groups such as waiting room groups, pre- and postsurgical groups, problem-solving, health advocacy, bereavement, preventive, and referral groups. Drawn from public health and sociology, population and systems approaches identify the universal, repetitive, recurrent needs of discrete groups of individuals (populations), such as children with leukemia, women with breast cancer, and families of patients with dementia via a variety of assessment tools and mechanisms (Clarke, 1983). 717

Before the appropriate method and the treatment of choice can be selected, the nature and “morbidity” of the psychosocial problems need to be mapped out.

References Appolone, Carol, and Gibson, Patricia. “Group Work with Young Adult Epilepsy Patients,” Social Work in Health Care 6(2), Winter 1980, pp. 23-32. Brown, Diana Guida, Glazer, Haley, and Higgins, Monica. “Group Intervention: A Psychosocial and Educational Approach to Open Heart Surgery Patients and Their Families,” Social Work in Health Cate 9(2), Winter 1983, pp. 47-59. Caroff, Phyllis, and Mailick, Mildred D. “The Patient Has a Family: Reaffirming Social Work’s Domain,” Social Work in Health Care 70(4), Summer 1985, pp. 17-34. Clarke, Sylvia S. “Hyman J. Weiner’s Use of Systems and Population Approaches: Their Relevance to Social Work Practice in Health Care Today,” Social Work in Health Care 9(2), Winter 1983, pp. 5-14. (See Part 1 of this volume.) Johnson, Edith M., and Stark, Doretta E. “A Group Program for Cancer Patients and Their Families in an Acute Care Teaching Hospital,” Social Work in Health Care 5(4), Summer 1980, pp. 335-349.

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McCollum, Eric E. “A Family-Oriented Admission Procedure on an In-Patient Psychiatric Unit,” Social Work in Health Care 4(A), Summer 1979, pp. 423-430. Miller, Rosalind. “Shaping a Theoretical Case for Family-Focused Social Work Practice,” in Proceedings of Maternal and Child Health Conference, The Family in Health Care Today, Columbia University School of Social Work, May 1983, pp. 15-29. Ross, Judith W. “Social Work Intervention with Families of Children with Cancer: The Changing Critical Phases,” Social Work in Health Care 3(3), Spring 1978, pp. 257-272. ______“Coping with Childhood Cancer: Group Intervention as an Aid to Parents in Crisis,” Social Work in Health Care 4(4), Summer 1979, pp. 381-391. Vera, Maria I. “On the Therapeutic Aspects of Psychiatric Admission,” Social Work in Health Care 5(4), Summer 1980, pp. 361-371.

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Additional Readings Barmettler, Donna, and Fields, Grace L. “Using the Group Method to Study and Treat Parents of Asthmatic Children,” Social Work in Health Care 7(2), Winter 1975-6, pp. 167-176. Berger, Jeanne Manchester. “A Drop-In Support Group for Cancer Patients and Their Families,” Social Work in Health Care 10(2), Winter 1984, pp. 81-92. Bloom, Naomi Dagen, and Lynch, Joseph G. “Group Work in a Hospital Waiting Room,” Health and Social Work 4(2), August 1979, pp. 48-63. Carosella, Jean. “Picking up the Pieces: The Unsuccessful Kidney Transplant,” Health and Social Work 9(2), Spring 1984, pp. 142-152. Epstein, Laura. “Short-term Treatment in Health Settings: Issues, Concepts, Dilemmas,” Social Work in Health Care 8(3), Spring 1983, pp. 77-98. Foster, Zelda. “How Social Work Can Influence Hospital Management of False Illness,” Social Work 10(4), October 1965, pp. 30-35. Foster, Zelda, and Mendel, Sally. “Mutual Help Group for Patients: Taking Steps Toward Change,” Health and Social Work 4(3), August 1979, pp. 82-98.

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Frey, Louise (Ed.). The Use of Groups in the Health Field. New York: National Association of Social Workers, 1966. Goldner, Rose, and Kyle, Eleanor H. “A Group Approach to the Cardiac Patients,” Social Casework 41(7), July 1960, pp. 346-353. Kohn, Ingrid. “Counselling Women Who Request Sterilization: Psychodynamic Issues and Interventions,” Social Work in Health Care 11(2), Winter 1985-6, pp. 35-60. Kornfeld, Marcia S., and Siegel, Irwin M. “Parental Group Therapy in the Management of a Fatal Childhood Disease,” Health and Social Work 4(3), August 1979, pp. 99-118. Levitt, John L. “Treating Adults with Eating Disorders by Using an In-patient Approach,” Health and Social Work 11(2), Spring 1986, pp.133-140. Levy, Lorraine Pokart. “Services to Parents of Children in a Psychiatric Hospital,” Social Casework 58(4), April 1977, pp. 204-213. Lonergan, Elaine Cooper. “Humanizing the Hospital Experience: Report of a Group Program for Medical Patients,” Health and Social Work 5(4), November 1980, pp. 53-63. Lurie, Abraham, Rosenberg, Gary, and Pinsky, Sidney. Social Work with Groups in Health Settings, New York, Prodist, 1982.

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Macnab, Andrew J., Sheckter, Lorraine A., Hendry, Nancy J., Pendray, Margaret R., and Macnab, Gundy. “Group Support for Parents of High Risk Neonates: An Interdisciplinary Approach,” Social Work in Health Care 10(4), Summer 1985, pp. 63-71. Marples, Margot. “Helping Family Members Cope with a Senile Relative,” Social Casework 67(8), October 1986, pp. 490-498. Piening, Suzanne. “Family Stress in Diabetic Renal Failure,” Health and Social Work 9(2), Spring 1984, pp. 134-141. Roback, Howard B. Helping Patients and Their Families Cope with Medical Problems: A Guide to Group Work in Clinical Settings. San Francisco: Jossey-Bass, 1984. Rosengarten, Lucy. “Creating a Health-Promoting Group for Elderly Couples on a Home Health Care Program.” Social Work in Health Care 11(4), Summer 1986, pp. 83-92. Soricelli, Barbara, and Utech, Carolyn Lorenz. “Mourning the Death of a Child: The Family and Group Process,” Social Work 30(5), September-October 1985, pp. 429-434. Wasow, Mona. “Support Groups for Family Caregivers of Patients with Alzheimer’s Disease,” Social Work 31(2), March-April 1986, pp. 93-97. Weiner, Hyman J. “The Hospital, the Ward and the Patient as Clients: Use of the Group Method,” Social Work 4(4), October 1959, pp. 57-64.

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Zeitlich, Susan. “Helping the Family Cope: Workshops for Families of Schizophrenics,” Health and Social Work 5(4), November 1980, pp. 47-52.

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Social Work in Health Care A Handbook for Practice

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About the Editors Kay W. Davidson, DSW, is Associate Professor at Hunter College School of Social Work in New York City. She brings to her current teaching position many years of experience working in England and the United States as a practitioner and administrator in social work in health and mental health care. Dr. Davidson has published articles on social work issues in health care and social work education. She is an active member of the Society of Hospital Social Work Directors and the National Association of Social Workers. Sylvia S. Clarke, MSc, is a nationally known leader in health care social work who has spent the major portion of her career as administrator of social work departments in two large, urban medical centers. She has also been active as a social work educator. The editor of the journal Social Work in Health Care (The Haworth Press, Inc.) since its inception in 1975, she has conducted numerous workshops and seminars in writing for professional publication.

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Social Work in Health Care Part II A Handbook for Practice Kay W. Davidson, DSW Sylvia S. Clarke, MSc Editors

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© 1990 by The Haworth Press, Inc. All rights reserved. No part of this work may be reproduced or utilized in any form or by any means, electronic or mechanical, including photocopying, microfilm and recording, or by any information storage and retrieval system, without permission in Writing from the publisher. First published by: The Haworth Press, Inc., 10 Alice Street, Binghamton, NY 13904-1580 This edition by Routledge: Routledge Taylor & Francis Group 270 Madison Avenue New York, NY 10016 Routledge Taylor & Francis Group 2 Park Square, Milton Park Abingdon, Oxon OX14 4RN Library of Congress Cataloging-ln-Publication Data A Handbook for practice. Selected articles reprinted from Social work in health care. v.1-11, 1974-86. Includes bibliographical references. 1. Medical social work. 2. Medical social work—United States. I. Davidson, Kay W. II.

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Clarke, Sylvia S. III. Social work in health care. [DNLM: 1. Delivery of Health Care. 2. Social work. W 322 H236] HV687.H26 1990 362.1’0425 89-24535 ISBN 0-86656-846-8 (set) ISBN 1-56024-025-3 (pt.I) ISBN 1-56024-026-1 (pt.II) ISBN 0-86656-907-3 (pbk.set) ISBN 1-56024-005-9 (pt.I) ISBN 1-56024-006-7 (pt.II)

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Contents PART I Preface Kay W. Davidson Sylvia S. Clarke PART 1: HEALTH CARE SOCIAL WORK: HISTORY AND CONTEMPORARY ISSUES Introduction Social Work in Health Settings: A Historical Review Martin Nacman, DSW The Role of Social Workers in Medical Education: A Historical Perspective Mildred M. Reynolds, LCSW Hyman J. Weiner’s Use of Systems and Population Approaches: Their Relevance to Social Work Practice in Health Care Today Sylvia S. Clarke, MSW, ACSW

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An Ecological Perspective on Social Work Practice in Health Care Carel B. Germain, DSW Social Work in Health Settings Hans S. Falck, PhD Commentary Additional Readings PART 2: WORKING WITH PATIENTS AND FAMILIES Introduction Psychosocial Responses to Traumatic Physical Disability Barbara A. Lilliston, MSW, CSW The Impact of Severe Illness on the Individual and Family: An Overview Mildred Mailick, DSW The Social Nature of Chronic Disease and Disability Neil F. Bracht, MA, MPH, ACSW Families, Transitions, and Health: Another Look Carolyn Dillon, MSW, LICSW

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Social Work in Home Dialysis: Responding to Trends in Health Care Sally E. Palmer, MSW The Anatomy of Discharge Planning Grace Fields, MSW, ACSW Evolving Social Work Roles in Health Care: The Case of Discharge Planning Kay Wallis Davidson, MS, CSW Commentary Additional Readings PART 3: RESEARCH AND EVALUATION Introduction Social Work Services as a Component of Palliative Care with Terminal Cancer Patients Helen Allison, RN, MSW James Gripton, DSW Margaret Rodway, PhD Family Coping with the Crisis of Heart Attack Surjit Singh Dhooper, MSW, PhD 734

Evaluation of Social Work Practice in Health Care Settings K. Jean Peterson, DSW Sandra C. Anderson, PhD Commentary Additional Readings PART 4: WORKING WITH COLLEAGUES Introduction The Interprofessional Team as a Small Group Rosalie A. Kane, DSW A Multimodel Approach to Collaborative Practice in Health Settings Mildred D. Mailick, MSW, ACSW Pearl Jordon, MSW, ACSW Diagnosing the Hospital Team Frances Nason, MSW, LICSW The Impact of Illness on Patients and Families: Social Workers Teach Medical Students Susan Hunsdon, MSW, ACSW

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Sylvia S. Clarke, MSW, ACSW A Gerontology Internship Program for Medical Students Alice Ullmann, MS Hirsch S. Ruchlin, PhD Commentary Additional Readings PART 5: DEVELOPING PROGRAMS AND DELIVERING SERVICES Introduction A Systems Approach to the Provision of Social Work Services in Health Settings Martin Nacman, DSW A Preventive Program for Bereaved Families Kristine S. Stubblefield, MSW, CSW The Short-Term Treatment of Depression of Physically Ill Hospital Patients Mildred D. Mailick, DSW Terminal Cancer: A Challenge for Social Work Carleton Pilsecker, MSSW, ACSW 736

The Case of Ann: A Sleep Disturbance in a 3-Year-Old Child Emily Hancock, MSW Family Treatment in the Health Setting: The Need for Innovation Beth Kemler, PhD, LICSW Social Work Groups in Health Settings: Promises and Problems Helen Northen, PhD The Legacy of the Group: A Study of Group Therapy with a Transient Membership Susan S. Bailis, ACSW Susan R. Lambert, ACSW Stephen B. Bernstein, MD Rehabilitation After Mastectomy: The Group Process Sona Euster, MSSA, ACSW Commentary Additional Readings

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Contents PART II PART 6: PROFESSIONAL AUTHORITY, AUTONOMY, AND ACCOUNTABILITY Introduction A Social Work Department Develops and Tests a Screening Mechanism to Identify High Social Risk Situations Barbara Berkman, DSW Helen Rehr, DSW Gary Rosenberg, PhD The Impact of Early and Comprehensive Social Work Services on Length of Stay Charlotte R. Boone, MSW, ACSW Claudia J. Coulton, PhD, ACSW Shirley M. Keller, MSSA Myocardial Infarction Patients in the Acute Care Hospital: A Conceptual Framework for Social Work Intervention Joanne Sulman, MSW, CSW

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Goldie Verhaeghe, MSW, CSW Medical Handmaidens or Professional Colleagues: A Survey of Social Work Practice in the Pediatrics Departments of Twenty-Eight Teaching Hospitals Jane H. Pfouts, PhD Brandon McDaniel, MS Initiation of a Quality Assurance Program for Social Work Practice in a Teaching Hospital Kris Ferguson, ACSW M. Leora Bowden, ACSW Donna Lachniet, ACSW Anne Malcolm, BA Gladys Morgan, MSW Clinical Social Work with Young Adult Perspectives of Patients, Parents, and Clinicians Mollie C. Grob, MSW, ACSW Susan V. Eisen, PhD Golda M. Edinburg, MSW, ACSW

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Inpatients:

Predicting Patterns of Social Work Staffing in Hospital Settings George I. Krell, MS, ACSW Gary Rosenberg, PhD A Survey of Patient and Family Satisfaction with Social Work Services Leslie Garber, ACSW Susan Brenner, ACSW Diane Litwin, ACSW Commentary Additional Readings PART 7: SPECIAL POPULATIONS AND CONTEXTS Introduction Social Work and Alzheimer’s Disease: Management in the Absence of Medical Cure Stephen Berman, ACSW Meryl B. Rappaport, LCSW Social Work and AIDS Anne-Linda Furstenberg, PhD 742

Psychosocial

Miriam Meltzer Olson, DSW Developing Responsiveness to the Health Needs of Hispanic Children and Families Sylvia Guendelman, LCSW, DSW Factors Affecting Coping of Adolescents and Infants on a Reverse Isolation Unit Margarita Kutsanellou-Meyer, CSW Grace Hyslop Christ, CSW Trauma Centers: A New Dimension for Hospital Social Work Jean M. Moonilal, LCSW, ACSW The Intensive Care Unit: Social Work Intervention with the Families of Critically Ill Patients Cindy Cook Williams, RN, MSW, ACSW Donetta G. Rice, MSW, ACSW Social Work and Primary Health Care: An Integrative Approach Joan R. Brochstein, MSW, MPH George L. Adams, MD Michael P. Tristan, MD, MPH

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Charles C. Cheney, PhD Commentary Additional Readings PART 8: PREPARATION FOR SOCIAL WORK IN HEALTH CARE Introduction Interprofessional Education and Social Work: A Survey Rosalie A. Kane, DSW The Social Worker New to Health Care: Basic Learning Tasks Claire Johnson Bennett, MSW Gail Green Grob, MSW The Psychiatric Emergency Service as a Setting for Social Work Training Susan F. Walsh, PhD Commentary Additional Readings PART 9: AN EXPANDED ROLE FOR SOCIAL WORK Introduction 744

Advancing Social Work Practice in Health Care Gary Rosenberg, PhD Rape Crisis Intervention in the Emergency Room: A New Challenge for Social Work Maria I. Vera, MSW, ACSW The Ecology of Social Work Departments: Empirical Findings and Strategy Implications Bruce S. Jansson, PhD June Simmons, MSW, LCSW An Expanded Social Work Role in a University Hospital-Based Group Practice: Service Provider, Physician Educator and Organizational Consultant Sylvia S. Clarke, MSW Linda Neuwirth, MSW Richard H. Bernstein, MD Commentary Additional Readings Index

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Part 6 Professional Autonomy, Accountability

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Authority, and

Introduction Clearer definitions of professional role and functions have helped social workers accrue greater autonomy and accountability in complex health care organizations. The articles included in this chapter examine this development; they illustrate the progression from services based on referrals by others toward broader, population-based approaches in which social workers themselves identify patients’ psychosocial needs, initiate services, establish independent priorities, and develop social work management systems in response to calls for greater accountability in an era of increased fiscal and regulatory constraints.

Development Autonomy

of

Authority

and

The articles selected for this section demonstrate achievements in moving toward increased professional authority and autonomy in practice through development of systems for identifying appropriate recipients of service, for instituting case-finding mechanisms, and for defining professional roles and activities. Berkman, Rehr, and Rosenberg’s article illustrates how social workers in health care can initiate the development of professional criteria for identifying patients’ needs for social work services. The authors demonstrate that when social workers

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cease to rely on the perspectives of others to define their role, their services may be outlined clearly and used effectively. Boone, Coulton, and Keller report study findings that support the value of early and self-defined intervention. They demonstrate the benefits of research to test and confirm the effectiveness of autonomous social work practice in health care. The conceptual framework for identifying patients at risk for medical and psychosocial complications that Sulman and Verhaeghe present in their article about social work with myocardial infarction patients supports autonomous decision making about timely and appropriate social work intervention and services. The article by Pfouts and McDaniel examines persistent issues of autonomy, “handmaiden” status, and bureaucratic constraints on social workers in hospitals. It provides a challenging analysis of ways in which social workers define their roles and activities, illustrated by a study of social work services in the pediatric department of a teaching hospital.

Management and Accountability Given the changing nature of social work practice, social work managers place emphasis on staff development programs that support, promote, and reward staff for the continuing accrual of a professional knowledge base which includes ideas adapted from other sources and tested for their applicability to health care social work. Although space did not permit their reproduction here, articles that offer reports

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of varying programs for staff supervision and development are suggested as additional readings. The articles that are included here report innovative approaches to management and accountability. Many articles about these issues that appeared in the pages of the journal have by now been established as classics reprinted many times in a variety of professional publications (see, for example, Lurie and Rosenberg, 1984; Bracht, 1978). Rather than reproduce articles that are readily available elsewhere, we have selected for this chapter articles that, although less frequently cited and reprinted, make a valuable contribution to understanding management and accountability from the perspective of the social work practitioner. These articles were selected because they expand the concept of accountability beyond that of responsibility to external authorities, such as funding sources, employing agencies, and regulatory bodies, to a broader one that considers responsibility to the recipient of services, the client, and seeks to answer the practitioner’s question, “Is what I do helpful?” The article by Ferguson et al. illustrates an early effort by practitioners to implement and evaluate a quality assurance program. The authors demonstrate the critical importance of peer review and staff participation in the accountability system. This innovative work forms an excellent base for comparison with reports of subsequent efforts by the same authors to refine this quality assurance program (see Ferguson et al., 1980).

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Grob, Eisen, and Edinburg contribute an example of a client satisfaction study in a psychiatric hospital setting. Adolescent and young adult patients and their parents and social workers were interviewed to develop data about the adequacy of social work services to meet clients’ needs. The report of the study’s findings and discussion of its implications provide the basis for a widely replicable model. Krell and Rosenberg’s article on social work staffing furnishes a framework for studying and predicting patterns of social work staffing for hospital settings. The steps in the development of the proposed formula constitute a seminal effort to approach systematically a critical management issue of universal concern to social workers in health care. Garber, Brenner, and Litwin’s article reports on a client satisfaction study. Although some of the research assumptions need further exploration, the study, based on a survey, is clearly reported and replicable. It is of particular significance as an example of a research study and accountability program undertaken by practitioners.

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A Social Work Department Develops and Tests a Screening Mechanism to Identify High Social Risk Situations Barbara Berkman, DSW Helen Rehr, DSW Gary Rosenberg, PhD At the time of writing Dr. Berkman was Adjunct Associate Professor of Community Medicine (Social Work) at the Mount Sinai School of Medicine of the City University of New York, and Research Associate at the Department of Social Work Services, Mount Sinai Hospital, One Gustave Levy Place, New York, NY 10020. Dr. Rehr was Edith J. Baerwald Professor of Community Medicine (Social Work) at the Mount Sinai School of Medicine. Dr. Rosenberg was Assistant Professor of Community Medicine (Social Work) at the Mount Sinai School of Medicine, and Director, Department of Social Work Services, Mount Sinai Hospital. SUMMARY. and testing psychosocial intervention

This paper described a model for developing a screening mechanism to identify high risk patient situations in need of early by social workers. Although the criteria

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developed need further refinement, it was found that multiple criteria are significantly more predictive of high risk than single factors and that three variables, (1) severity of illness: life threatening, (2) severity of illness: physically dysfunctional; and (3) chronic illness, were good predictors of need for social work services. It is suggested that similar screening mechanisms be developed and utilized in hospitals throughout the country. A major problem which has handicapped the delivery of comprehensive social work services in the hospital setting is the dysfunctional aspect of the traditional case finding system. In that system other health care professionals determine who is in need of social work services and when that help should be requested. Social workers in the health care system have not assumed consistent responsibility for finding those persons who could benefit from their services, except in a few social programs such as young unmarried pregnant girls, neonatal defects, drug addicted pregnant women, and those entering renal care programs. Because persons outside social work perceive psychosocial need from their own professional view, and because they may not be familiar with the types of problems dealt with and the range of services offered by social workers, a referral-based system tends to lead to referrals of those clients with obvious, easily visible needs, but often fails to refer those patients and family members who could utilize help with the range of psychosocial stresses that accompany illness and hospitalization (Berkman and Rehr, 1973). When referrals are made, most of them come to the social work department late in the course of the patient’s hospitalization, and thus limit 752

the service the patient and family can receive by imposing a time constraint that can adversely influence the outcome of the situation (Berkman and Rehr, 1972). Despite the existence of several vanguard programs where social work casefinding is institutionalized, this characteristic referral system has remained basically unchanged through the years and even appears to have been introduced into the newer “innovative” health settings, such as the neighborhood health center and the health maintenance organization (Berkman, 1977). Clarification of the role of the social worker and appropriate utilization of social work services will not be assured as long as social workers continue to rely on the perspectives of other professions to determine not only the timing of social work intervention but also the specification of the problems with which they can help. In a move to grapple with the problem of late referrals of limited perspective, social workers at the Mount Sinai Medical Center, a 1,200 bed acute care hospital in New York City, have been developing a high social risk (HSR) screening procedure. The mechanism tries to identify those patients and their family members whose social situations, stress, or predicted social and physical problem resulting from the illness and hospitalization may interfere with their ability to make an optimum plan for the post-hospital period or to cope with daily life expectations. This paper presents the steps in developing and testing a screening mechanism with criteria relevant to the hospitalized population served in this medical center (Blum· berg, 1957; Cochrane and Holland, 1971).

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A Model for Development of the Screening Mechanism There were four phases in the development of the screening mechanism (Chart I): Phase I involved the development of the High Social Risk Indicators by the professional staff; Phase II involved a test utilization of the screening mechanism on all admissions with expected lengths of stay of 7 days or longer; Phase III utilized Master’s degree level social workers to act as judges in the review of all patients scored as positive for High Social Risk by the screening device. In this process, they were expected to determine the validity of high social risk situations uncovered in the screening. During Phase IV those patients who were screened as non-high social risk were followed statistically through departmental records to assess the validity of that determination.

Phase I: Development of High Risk Indicators The social work staff of the adult medical and surgical inpatient units met over a three month period to determine indicators of high social risk (HSR) for patients and families. From their knowledge of the impact of illness on social functioning, and their experience-based views of the relationship of illness and social problems, they worked to identify the characteristics of social work clients in this health setting. They then worked to translate the social factors into screening criteria that could uncover “at admission” those patient/family situations at presumptive high social risk who would then be followed with a psychosocial diagnostic assessment (Appendix A). The screening mechanism was

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designed so that the risk variables projected by professional social workers could be identified from data available on the patient’s admission sheets by a trained non-professional screener at the time of the patient’s admission.

Chart 1 Model for High Social Risk Screening Study Group “A” is monitored statistically for two nonths to see what proportion of cases are referred to social workers after screening is Completed. This will capture false-negatives which may occur in Group “A.” In addition, a random sample of Group “A” should be interviewed during hospitalization as another way to determine whether screening represented a

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false-negative (i.e., screening mechanism found patient not potentially at risk but interview proved differently.) Also monitored are Groups “E” and “H” to be sure the judgments of the social workers were sound.

Phase II: Screening All Admissions During six days in April 1978, a secretary trained in the screening procedures reviewed all daily admissions to the adult in-patient medical and surgical services of the hospital. Utilizing the eight criteria established by the social workers, she screened the daily admission sheets, pulling those which fell into a high social risk category. For this pilot study, those patients with expected lengths of stay of under seven days were excluded from review. This policy was based on past experience which demonstrated that long stay patients were the primary users of the service. This policy derived from the extent of social work services available rather than the judgment that short stay patients are without social problems. At the end of each day, admission which was designated high social risk was assigned to the social worker who covered the appropriate service area.

Phase III: Social Work Review This phase checked on the validity of the positive screenings, i.e., those patients who were identified by criteria as High Risk through a review (Appendix B) within three days by one of fifteen staff social workers who acted as judges in determining the validity of the screening decision.

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This study was designed purposely to fit the department’s organizational structure wherein social workers cover designated service areas. It would have been better to distribute the screenings randomly among the fifteen MSW social worker judges, protecting us from possible sources of bias due to variations in workers’ clinical experience. In addition, staff members covering services which had a larger number of high social risk admissions experienced a greater impact of review work. An alternate study approach which would have reduced the impact on those workers, would have been to select randomly from among the high risk screenings designated for their review. In future studies of this nature this procedure is suggested if randomization across all workers is not feasible. The method of review was left to the discretion of each social worker-judge and could consist of an in-person intake interview, review of information available in the medical chart, discussion with the physicians and nurses, informal rounds, or through combinations of these approaches. Excluded from review were patients discharged or those who died within three days of admission. Following review there were three options for worker decision: (1) to consider the patient at High Social Risk and needing social work intervention; (2) to decide not to give service because of “no need”; (3) to defer decision at that time with a plan for a second review one week later. Those latter two options indicated possible errors in the High Social Risk screening mechanisms. “Too many” of these would be an indicator that the instrument was screening in too many “false positives.”

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Phase IV: Monitoring This phase monitored through departmental records those patients who had been screened out as Non-High Social Risk. The question to be answered was whether they would be referred to the social work department at any time during the course of the patient’s hospital stay. If a large number of these patients were subsequently referred to social workers, it would be an indication that the screening mechanism was not working adequately and was screening out too many “risk” cases. In addition, those HSR situations which the social workers reviewed in Phase III and determined there was “no” need for social work intervention, or which they “deferred,” were also monitored at this time to insure the validity of the early judgments by checking whether they were not served later in the patient’s hospitalization.

Findings In the six day period 613 adult patients admitted to the Medical and Surgical Services of the hospital with expected lengths of stay of seven days or more were screened. Three hundred ninety-four (67%) of the patients were screened as Non-High Social Risk “at admission.” One hundred ninety-three patient situations (33%) were designated as potentially at High Social Risk and referred to social worker-judges for review. Twenty-six situations were excluded from the review: 22 patients who were discharged and four patients who died within 3 days of admission.

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The High Risk Patients The first question asked during analysis was which, if any, potential risk factors were prevalent in the admissions identified as High Social Risk. Would one or two factors, or combinations of factors, account for a major proportion of the admissions screened as high risks? It was found that two factors were present in 57% of all the screenings which designated patients as High Social Risk: (1) severity of illness: life threatening, occurred in 33% of the HSR cases and (2) severity of illness: physically dysfunctioning, occurred in another 34% of the HSR situations. Among the diagnoses included in these categories were those patients with metastatic or terminal cancer, those with blood dyscrasias, patients admitted to the various intensive care units, patients with organic and/or mental brain syndrome, and sight threatening conditions (Appendix A). Of the 193 patients screened in as High Social Risk, the social worker-judges agreed that 68 situations (35%) were high risk and needed immediate intervention. Thirty-five (18%) were assessed “at possible risk” by the social workers but not considered of immediate priority when compared to other situations in which they were intervening. Thus, while they believed there was a “possible risk” they did not intervene “at admission.” In an additional 42 cases the workers could not make an “at admission” decision because of limited information and re-reviewed those situations one week later when eight (4%) were confirmed as high risk. Thus the total number of situations validated as high risk (true positives)

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were 111 or 58% of the total screened “in” High Social Risk cases. In 48 screenings (25%) the social worker-judges determined “no need” for intervention because their social assessments indicated there were adequate psychosocial supports in the family situation to allow the situations to be handled without social work intervention. Adding to this number the 34 deferred cases (17%) which were re-reviewed and then determined not in need of social work services brought the total of “false positive” screenings to eighty-two or 42%. The issue which must still be determined is whether these “no need for intervention” situations, for whatever reasons posed, should be considered “false positive” screenings. It is important to note that the instrument utilized was intended for identification of high social risk from specified documented data available at the time of admission to the hospital. Information available either from professional in-person interviews with the patient-family system or from interactions with or materials derived from the provider system, following the admission, would need to be considered additive to early casefinding. Therefore these “no need” or “deferred” situations would need to be reviewed in the context of later referrals, if any. It would be helpful to learn more about these types of situations to see if other dimensions need to be deliberated for early casefinding. Of the 193 patients screened as at high social risk, 120 (62%) had one risk factor present (Table 1). Seventy-three cases (38%) had multiple risk factors. Of the one risk factor screenings, 52% were true positives in the judgment of the social workers. Of the multiple factor cases significantly 760

more, 67%, were judged true positives (X2 = 3.82, df = 1, P *lth .05). Thus it would appear that the presence of more than one risk criterion is a better predictor of high social risk than a single risk criterion. In continuing the comparative analysis of High Social Risk situations that were judged “true” positive or “false” positive, individual risk factors and combinations of factors were reviewed to determine which were predictive of high risk (Table 2). It became clear that neither of the age criteria alone were predictive of high risk, i.e., neither those patients in their eighties, nor those in their seventies and living alone, were judged at risk because of these factors Table 1 Distribution of High Social Risk Screenings by Number of Risk Factors Present and Validity Judgments

Table 2 Distribution of High Social Risk Screening by Risk Criteria Present and Valldltv Judgement

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solely. Nor was an “emergency admission,” as a single indicator, predictive of High Social Risk. However, severity of illness that was life-threatening, as a single criterion, and the presence of chronic disease, as a single criterion, were predictive of high risk in two out of three situations. Severity of illness that was physically dysfunctional was not predictive as a single criterion. In analyzing those situations with multiple risk criteria present, we find that severity of illness which is physically dysfunctional, in combination with one or more other factors, is predictive of high risk in four out of five instances. Severity of illness which was perceived as life-threatening, combined with one or more other criteria, was predictive in approximately two out of three situations.

The Non-High Social Risk Patients Three hundred and ninety-four patients (67%) were screened as non-high social risk since there were no high risk screening criteria identified. To test the validity of the screening determination these patients were followed through departmental statistics for two months to determine whether these “non-risk” patients were referred to social service through traditional referral methods. Any of the “non-high risk” cases which were referred would be considered an error, a false negative, for the screening process. Only 11 cases (3%) were referred to social work services during the course of the patients’ hospitalization, indicating the “screening-out” process may be working effectively. However, the ideal way to have carried out this study would have been to interview those patients who were screened out to see whether professional social workers would have agreed with the screening. It is our plan to repeat the study and interview

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patients who are screened out as non-high risk to further substantiate this observation.

Discussion The primary intent of a casefinding system is to identify individuals and their families with specifically defined problems that have placed them at high social risk and then to link them with the appropriate, available social work services. Identifying high social risk factors is not difficult for social workers. They work with those in social need and with social problems. Education and experience sharpen their perceptions. Case reviews, chart assessment, and medical social rounds are other effective means to cull out “risks” in those utilizing the setting. In these early efforts to develop a casefinding instrument, the professional staff stated their preference to continue interviewing patients and family members to confirm need. They also indicated a preference for continued utilization of medical-social rounds for essential interprofessional collaboration. It was clarified that the benefits of interprofessional rounds as useful in collaborative decision making and communication would continue, however, the traditional means of uncovering patients at social risk through professional interview of each admitted individual or through medical social rounds were costly structures for casefinding. The introduction of a valid screening mechanism utilized by a non-professional may prove more cost effective than these other methods.

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This study demonstrated that the high social risk screening mechanism could screen out patients not-at-risk as evidenced by the very small percentage of hospitalized patients who entered the service by other referral methods. However, this finding is considered tentative until restudied with direct interviews of patients screened as non-risk to substantiate the validity of the finding. In this experience the screening “out” of patients was easier to achieve than the valid screening “in.” It had been anticipated that a small proportion of patients screened as High Social Risk would be judged by the social workers as not needing their intervention since many patients have strong family supportive help or adequate resources which cannot be identified by the data on an admission fact sheet. At this time, the high social risk screening instrument has been developed for early casefinding only, and not for uncovering the internal or external resources in the patient-family or provider systems to deal with those risks. But a finding of major consequence in this pilot study was the large number of cases screened “in” as high risk via the screening mechanism and subsequently determined by the social worker-judges to be “non-risk.” Because only 58% of the high social risk cases screened were considered valid as to needing social work services by the reviewing judges, the major question raised was whether the screening net as designed was too broad. The one hundred and eleven patients screened “in” as HSR represented 18% of the adult admissions. This percentage represents approximately the same number of adult inpatient medical and surgical cases which social workers reach through traditional referral methods. However, at this time we do not know if the instrument is identifying the same patients. This must be determined in future study. If they are the same 765

patients who were formerly reached near the time of discharge or at point of crisis, then the screening mechanism is clearly preferable because it enables us to reach patients earlier and allows for the necessary processes in intervention. If they are different patients than those reached through traditional referrals, the fact that we screen in the same proportion of cases will raise the question of how the current departmental resources can absorb a larger number of patients in need of social work service than we are currently serving. Earlier intervention obviously is the preferable professional expectation. It would allow more time to be spent on each situation and enable social workers to deal with problems they were able to identify but were not able to deal with under the constraints of brief, limited service. However, the administrative and professional significance of potentially added numbers of clients would need to be considered before implementing any new method of casefinding. The instrument must now be taken back to staff and refined based on the findings of the study. Further modification of the instrument is needed to increase the specificity of the screening process.

Implications Can social work in health care develop reliable social risk screening instruments? The immediate response is “yes.” They are already in development and are being demonstrated as valuable by those initiating their own casefinding systems. We have suggested that screening instruments should be valid and economical. The objectives of a department must be clearly determined, resources have to be available and ready for achieving these objectives, and the screening program

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must be planned and tested before implementation. The achievement of a departmental screening device requires professional commitment and the allocation of time, money, and resources. Training and refresher meetings for staff, which affect the cost of the program, are essential for sound implementation and maintenance of the system (Rehr et al., 1980). It is envisioned that screening mechanisms such as the one described will be utilized in hospitals throughout the country within the near future (Massachusetts General Hospital, Department of Social Services and Johns Hopkins Medical Center, Department of Social Services are utilizing screening mechanisms of this nature). A major issue in the process of implementing screening approaches is the orientation of hospital administration and medical staff to the new system. In the present case, this was done at the Medical Board level to secure a hospital mandate and policy decision. In these discussions we identified social work’s focus, its roles and functions. Independent screening clearly establishes social work as the profession to deal with psychosocial problems in the medical setting. In addition, the possibilities for cost containment through the early identification of patients “at risk” for discharge cannot be underestimated. Early casefinding can help deter delays in appropriate medically indicated discharge. Also, those service areas which have greater numbers of high social risk patients can be identified and appropriate deployment and/or redeployment of manpower planned. Once we can anticipate the number of people and types of problems to be dealt with, we can plan for the types of services needed. The benefits of early intervention to patients and their families are self-evident. 767

Administrators, particularly in times of scarce resources, are asked to set priorities. High Social Risk screening mechanisms are one means offered to determine priorities in a rational and systematic manner. It is believed that the methodology used for developing and testing this screening mechanism may be useful to comparable departments in their efforts to develop screening procedures geared to potential users of social work service.

Note Reprinted from Social Work in Health Care, Volume 5(4), Summer 1980.

References Berkman, B. Innovations for social services in health care. In F. Sobey (Ed.), Changing roles in social work practice. Philadelphia: Temple, 1977. Berkman, B. & Rehr, H. The ‘sick role’ cycle and the timing of social work intervention. The Social Service Review, 1972, 46, 567-580. Berkman, B. & Rehr, H. Early social service case-finding for hospitalized patients: an experiment. The Social Service Review, 1973, 47, 256-265. Blumberg, M. Evaluating health screening procedures. Operations Research, 1957, 5, 351.

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Cochrane, A. L., & Holland, W. W. Validation of screening procedures. British Medical Bulletin, 1971, 27, 3-8. Rehr, H., Berkman, B., & Rosenberg, G. High social risk screening principles and problems. Social Work, 1980.

Appendix A

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HSR Screening Form A

Appendix B

Patient-Family HSR Review Form B

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The Impact of Early and Comprehensive Social Work Services on Length of Stay Charlotte R. Boone, MSW, ACSW Claudia J. Coulton, PhD, ACSW Shirley M. Keller, MSSA At the time of writing Charlotte R. Boone was Director, Social Service Department, Akron City Hospital, 525 East Market Street, Akron, OH 44309. Claudia J. Coulton was Associate Professor, School of Applied Social Sciences, Case Western Reserve University, Cleveland. Shirley M. Keller was Assistant Director, Social Service Department, Akron City Hospital. The authors are indebted to the entire Social Service Department and especially to Laura Schrank for her participation in this study. SUMMARY. The efficient use of health care resources requires that patients remain in in-patient facilities only as long as is necessary, High-quality patient care requires that patients are physically, socially, and psychologically prepared for leaving the hospital and that plans for their post-hospital care are adequate. The authors discuss a study of Orthopaedic patients which demonstrates that early and comprehensive social work intervention can reduce the length of time patients stay in the hospital. They also describe the effect of

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the study on expanding the role of social work within the acute care, general hospital.

Introduction As the cost of health care rises, there is increasing interest in utilization of hospital services in a more effective and efficient manner. Since in-patient hospital care is the most expensive health care service today, attention has focused on decreasing the length of time patients stay in the hospital. Comparisons showing substantial regional differences in average length of hospital stay per patient have supported the view that some patients may be staying in the hospital when an alternative arrangement would be acceptable given their physical condition (NCHS, 1979). Thus, various procedures have been instituted in hospitals with the goal of assuring that patients’ stays in the hospital are only as long as is medically necessary (Health Care Financing Administration, 1979). Although social workers support the appropriate utilization of acute health care beds, they are well aware of the fact that the length of time a patient remains in the hospital depends on many factors. Length of stay is not only dependent on physical condition, but also on the patient’s personal capacities and resources in the environment. This perception is supported by numerous research findings. Glass et al. (1977) found that 18% of the hospital days for patients they studied were due to social factors rather than medical factors. Zimmer (1974) found that 11.9% of hospital days could not be attributed to medical need. Mason et al. (1980) reported that, for 21% of patients admitted to a metropolitan hospital,

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social factors were very important in the admission decision. Boaz (1979) noted that for patients admitted to the hospital on an emergency basis, length of stay was strongly affected by social factors. This may reflect these emergency patients’ lack of opportunities to prepare emotionally and realistically for their hospital admissions and discharges. Although social workers have known that services directed toward alleviating social and psychological problems are a vital component of reducing length of stay, this has been difficult to demonstrate. There has long been concern about whether patients with social and psychological problems were actually receiving timely and appropriate social work assistance. For example, Berkman and Rehr (1972) found that patients tended to be seen by social workers relatively late in their hospitalizations. In addition, in hospitals where social workers depend largely on referrals to identify their clients, the evidence from one hospital suggests that many patients who could benefit will never be seen by a social worker (Berkman & Rehr, 1973). This interest in timely and comprehensive social work intervention has been based on the knowledge that the stress of illness and hospitalization can create a high level of anxiety in the patient and family. Early intervention is seen as increasing the possibility that the patient wilt be helped to cope with illness and/or anxiety in a more realistic manner. The reduction of the patients’ anxiety level, which can be related directly to the illness and/or social problems, is expected to lead to more effective total health care. It is essential that emotional, behavioral, and social factors be included in defining adequate care and rehabilitation plans in

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order to guarantee patients’ right to achieve their maximum health potential (American Hospital Association, 1980). This article will report on a study of the effect of early and comprehensive hospital social work services to a group of Orthopaedic patients. The purpose of the study was to determine whether the provision of early and comprehensive social work services would affect the number of days that patients spent in the hospital. The propositions underlying this study were the following: 1. In any patient group, some patients will face social and psychological barriers that prevent them from being discharged from the hospital as soon as their physical condition permits. 2. If these patients can be identified early and receive comprehensive social work services, these problems are more likely to be resolved so that timely discharge can occur. 3. If social work services result in appropriate post-hospital care plans, if patients and families are prepared to cope effectively with these plans, and if follow-up contact is provided, timely discharge will be beneficial to both patients and society. This study provides a test of only the second proposition. The authors recognize that there may be debate about the veracity of the third proposition. Some may argue that certain patients need extra time in the hospital for psychosocial reasons regardless of the timing and effectiveness of social work intervention. Resolution of this question awaits additional research.

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By involving the patient early in the hospital stay, one of the goals of this project was to increase the patients’ participation in active decision-making (Janis & Mann, 1977). Early intervention could enable the social worker to assist the patient and family in exploring a full range of sound, comprehensive services resulting in a plan tailored to their needs and preferences. Not only would the patient receive benefits, but the hospital would also be benefitted by proper utilization of acute health care beds and resultant reduction in the length of stay. The hoped for result of early and comprehensive social work services would be increased effectiveness and efficiency in the delivery of health care. An additional result might be that unnecessary réadmissions through the Emergency Room would be prevented.

Methodology With increased emphasis on better utilization of health care facilities, Akron City Hospital became interested in studying the impact of early discharge planning upon length of stay. The Chairperson of the Orthopaedics Department at the hospital was particularly interested in participating in a research project to investigate the effect of early and comprehensive social work intervention on reducing the length of stay on the Orthopaedic units. This study gradually evolved from a general question to a clearly defined research plan. In the preliminary stages, it was crucial to provide an orientation regarding the study to the various disciplines involved, which included the Orthopaedic physicians and nurses. Throughout the study, monthly

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progress meetings were held with the key participating physicians, nurses, and social work staff. The sample for this study was limited to Orthopaedic patients on the two Orthopaedic units at the hospital admitted during a six-month period. The study only included Orthopaedic patients directly admitted to the Orthopaedic units and those transferred to the units within three working days of admission. Orthopaedic patients who were transferred to other floors were eliminated from the sample. This study utilized an experimental design in which 371 Orthopaedic patients were randomly assigned to two groups. One group was the experimental group and the other was the control group. Random assignment was accomplished by use of the date, time of admission, and last digit of the patient’s admission number. The patients with even numbers were assigned to the experimental group. The patients with odd numbers were assigned to the control group. Every patient in the experimental group received early and comprehensive social work services from a social worker for whom this service was a full time responsibility. During this study period, a temporary full time social worker was hired to permit the assignment of this experienced social worker for full time participation in the experimental group. Approximately 15 experimental patients were hospitalized at all times during the study. In the experimental group, the social worker made contact with the patient and/or family within three (3) working days of admission to the Orthopaedic units. She immediately began 776

to evaluate the psychosocial needs of the patient and/or family. A thorough assessment was made of the patient’s physical condition and medical disability, if any; limitations imposed by diagnosis; social situation; psychological, cultural, and financial factors. Then an individualized discharge plan was developed with the patient and/or family or significant other to meet the physical, social, and emotional needs. To assist in forming the most comprehensive discharge plan, the social worker reviewed the medical chart; collaborated with the medical staff/nursing staff and other involved professionals; and contacted appropriate community agencies. After these assessments were completed, a plan was formulated with the patient and family or significant others. Patients were strongly encouraged to involve themselves actively in this planning process. This plan not only included the actual discharge of the patient, but provided a linkage to community agencies for additional counseling and/or other appropriate services. Patients in the control group were provided with routine hospital services. At the time of this study, Orthopaedic patients were receiving social work services only on the basis of physician referral. These referrals were usually initiated late in the patient’s stay and only a small proportion of patients were referred. Further, the social worker responding to these referrals served patients in many parts of the hospital and was not an integral part of the Orthopaedic team. One limitation of the experimental design was that control group contamination could not be ruled out. In other words, since the many hospital personnel were aware that the study was underway, they may have been sensitized to the need for social work services. Thus, the control group possibly 777

received more social work services than they would have prior to the study. If this were, indeed, the case, the result would be a smaller difference between the experimental and control groups than would have occurred in the absence of contamination. However, since this bias was against finding differences between the two groups, the internal validity of the study was not seriously jeopardized. Social work intervention for both groups was documented in the standard department’s Progress Notes. The documentation included initial assessment, on-going progress notes, post-hospital care plans, and discharge summaries. For all study patients, information regarding their age, sex, the nature of surgery or discharge diagnosis, dates of admission and discharge, source of payment, disposition, actual length of stay, and certified length of stay by diagnostic category were entered on a data collection form. The information was retrieved from the medical record, and this coding was checked for its reliability.

Results The patients included in this study had a mean age of 62.68 (SD = 18.52) with the distribution being slightly skewed toward the older end of the age continuum. The average length of stay in the hospital for all study patients was 12.50 days. Table 1 presents some relevant characteristics of the experimental and control patients. There were no significant differences between the two groups in age, sex, discharge destination, or source of payment for medical care. The table reveals that the majority of patients in both groups were

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covered by Medicare or private insurance and were being discharged to their own homes. It will be recalled that the major study hypothesis was that patients receiving early and comprehensive discharge planning (i.e., experimental group) would remain in the hospital for fewer days than patients receiving routine hospital services (i.e., control group). Table 2 suggests that all the differences are in the expected direction. For all diagnostic categories, patients in the experimental group spent, on the average, fewer days in the hospital than did patients in the control group. Overall, experimental patients remained in the hospital an average of 1.25 fewer days than did control patients. TABLE 1 Description of Sample

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In order to test the significance of the above differences, a twoway analysis of covariance was performed. Age served as a covariate due to its strong correlation with length of stay. The results of this analysis are presented in Table 3. The difference between the experimental and control group on mean length of stay is significant at the .001 level (F = 10.10, df = 1,362). Diagnosis and age are also shown to have statistically significant effects on length of hospital stay. The Eta2 of, .21 suggests that 21% of the variance in length of stay in this patient group can be explained by age, diagnosis, and discharge planning. During the six-month period of the study, there was a total saving of 234 hospital days for the experimental group as compared with the control group. This resulted in a savings of $53,762.50 in health care dollars. TABLE 2 Means and Standard Deviations* For Length of Stay (in days) By Treatment Group and Diagnosis

Diagnosis

Treatment Group Experimental Control

IIip Replacement

M=14.74 M=15.79 SD= 6.47 SD= 5.47 (34) (29)

Knee Replacement

M=13.00 M=16.64 SD= 2.69 SD= 6.59 (14) (14)

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Diagnosis

Treatment Group Experimental Control

IIip Fracture

M=15.50 M=17.34 SD= 5.43 SD=5.83 (50) (41)

Other Fractures

M=8.58 M=10.14 SD=4.78 SD=7.21 (89) (100)

All Diagnoses

M=11.88 M=13.13 SD=6.07 SD=7.36 (187) (184)

* Numbers in parentheses represent cell frequencies.

Conclusions In addition to reducing health care costs and providing better patient care, an exciting gain from this study was that the Social Work Department demonstrated to itself, as well as to the hospital administration, the effectiveness of research as a social work tool. It was a new format for the department, and it opened many doors which had remained closed for years. It became clear, as a result of our experience with this study, that the social work profession has never been in a better position to demonstrate the effectiveness of service. The mandated need to demonstrate quality assurance combined with the professional commitment to providing effective discharge planning provided a winning combination. TABLE 3 Analysis of Covariance of Length of Stay by Diagnosis and Treatment Group with Age as a Covariate 781

The findings of the study demonstrated the cost effectiveness of hiring a full time social worker to cover the Orthopaedic units. It was statistically shown that the experimental group remained in the hospital on an average of 1.25 fewer days than the control group. In terms of cost, the average savings for Medicare and other insurances was a little more than a day of hospitalization cost. With the present health care concern about better utilization of hospital beds and cost-containment, this finding has great importance. Although the reported findings are limited to the studied Orthopaedic patients, the implications of the results probably have relevance for other hospitalized patients. The Social Service Department found that the research design could be used in the future in other areas of the hospital to demonstrate the need for additional staffing. With the success of the study, the Social Service Department has been able to increase its entire staff by four social workers in the past year. This increase was a result of the study as well as other research projects in which the department participated. A future 782

publication by the authors will illustrate the steps taken to achieve the staff increase. As a direct outgrowth of the Orthopaedic study, the Social Service Department continued to retain the privilege of intervention in all cases when the department felt services would be most effective. This is a professional privilege which has been difficult to achieve in some places, but one which might never have been obtained except through demonstrated measurable results. Another important gain from the study has been increased interest in the social work role on the multi-disciplinary team. This has led to further development of the team approach to total patient care and increasing respect for the social worker’s contribution to this approach. It is recognized that there are many factors not examined in this study which can slow down the discharge planning process. Studies have shown some of these factors might be lack of nursing home beds, change in patient’s physical condition, and the lengthy welfare process (Schrager et al., 1978). Even though these factors can impede the discharge planning process, the reported findings still suggest the importance of early and comprehensive discharge planning in reducing additional overstays. Because the Orthopaedic study was so successful and has demonstrated the effectiveness of timely social service intervention, future research to measure the quality of social service intervention is planned.

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Note Reprinted from Social Work in Health Care, Volume 7(1), Fall 1981.

References American Hospital Association (Committee on Discharge Planning of the Society of Hospital Social Work Directors) “Discharge Planning,” American Hospital Association, Chicago, Illinois (1980). Berkman, B. G. and Rehr. H. The Sick Role Cycle and the Timing of Social Work Intervention, Social Service Review, 46: 567-580,1972. Berkman, B. G. and Rehr, H. Early Social Service Case Finding for Hospitalized Patients: An Experiment, Social Service Review, 47: 256-265, 1973. Boaz, R. F. Utilization Review and Containment of Hospital Utilization, Medical Care, 77:315-330, 1979. Glass, R. I.; Mulvihill, M. N.; Smith, H.; Peto, R.; Bucheister, P.; and Stoll, B. J. The Four Score: An Index for Predicting a Patient’s Non-Medical Hospital Days, American Journal of Public Health, 67: 751-755, 1977. Health Care Financing Administration, 1979 PSRO Program Evaluation (Washington D.C.: Health Care Financing Administration, 1979).

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Janis, I. and Mann, L. Decision-Making, New York: The Free Press, 1977. Mason, B.; Bedwell, C. L.; Zwagg, R. V.; Runyan, J. W. Why People Are Hospitalized, Medical Care, 18: 147-163, 1980. National Center for Health Statistics. Utilization of Short Stay Hospitals (PHS 79-1557). (Washington D.C.: Department of Health, Education and Welfare, 1979). Schrager, J.; Halman, M.; Myers, D.; Nichols, R. and Rosenblum, L. Impediments to the Course and Effectiveness of Discharge Planning, Social Work in Health Care, Vol. 4 (Fall 1978). Zimmer, J. G. Length of Stay and Hospital Misutilization. Medical Care, 12: 453-462, 1974.

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Myocardial Infarction Patients in the Acute Care Hospital: A Conceptual Framework for Social Work Intervention Joanne Sulman, MSW, CSW Goldie Verhaeghe, MSW, CSW At the time of writing Joanne Sulman was a Supervisor and Goldie Verhaeghe was a Clinical Social Worker at Mount Sinai Hospital, 600 University Avenue, Toronto, Ontario, Canada, M5G 1X5. The authors thank Verna Chandler, MSW, CSW, Renata Block, MSW, CSW and Gordon Dickinson, MD, FRCP(C) for their help. SUMMARY. This paper describes a conceptual framework for identifying myocardial infarction patients in the acute care hospital who are at risk for medical and psychosocial complications that may impede recovery. Because of their precarious medical status, these patients present special issues for social work practice. Psychosocial factors affecting outcomes are reviewed and interventive strategies are outlined. The crucial role of adaptive denial in recovery is highlighted.

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Introduction A successful outcome for myocardial infarction patients is usually defined as physical survival and the resumption of a productive lifestyle. As with other seriously ill patients, a major goal of social work intervention is participation in the treatment plan to promote successful outcome. For myocardial infarction (M.I.) patients the interplay of medical vulnerability, psychological response and social characteristics calls for a unique practice approach. The paper reviews a selection of the literature addressing psychological, social and demographic factors that influence outcome. Using these data, we propose a conceptual framework to identify patients who are at risk for medical and psychosocial complications that interfere with optimal rehabilitation. The implications for social work practice are discussed.

Psychological Factors The meaning ascribed to the heart in human terms encompasses sympathy, courage, affection and survival itself. When one’s heart is threatened with crushing pain, the dread evoked is overwhelming. Human beings react with shock, denial, massive anxiety and depression to this event which can radically alter or eliminate their future. These same emotions, although normal, can be major components in poor prognosis and death. During the past fifteen years, researchers have investigated the links between these psychological responses and recovery 787

from M.I. Most attention has been focused on denial, anxiety and depression. Other psychologically related factors that have been studied are control and predictability, behavioral adjustment and the effectiveness of psychotherapy.

Denial Denial can have a positive or a negative effect on outcome depending upon its intensity and time of occurrence. Hackett and Cassem (1982) define denial as the repudiation of part or all of the total available meaning of an event in order to minimize or reduce anxiety. In their early work, as part of consultation-liaison in a large general hospital, Hackett, Cassem and Wishnie (1968) studied 50 patients in the Coronary Care Unit (C.C.U.) and found initial evidence that denial may have a positive influence on survival. In further work, Hackett and Cassem (1971, 1979, 1982) noted that denial can also be maladaptive if it causes critical delay in the recognition of cardiac symptoms or non-compliance with treatment. Croog, Shapiro and Levine (1971) and Garrity, McGill, Becker and Blanchard (1976) also found that denial can produce a lack of compliance with rehabilitation measures.

Anxiety The mobilization of denial may be viewed as an initial defense against the overwhelming, realistic anxiety that accompanies an encounter with one’s mortality. Some patients experience this anxiety to a marked degree and a number of reports point to this having an adverse influence on both psychosocial (Cay, 1982; Winefield & Martin, 1981) and

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physical dimensions of recovery (Thomas, Lynch & Mills, 1975; Minckley, Burrows, Ehrat, Harper, Jenkin, Minckley, Page, Schramm, & Wood, 1979; Taggart & Carruthers, 1981).

Depression Denial not only defends against anxiety but also acts as a mechanism to avoid acknowledging the physical, psychological and social role losses that can result from M.I. When denial of loss is no longer tenable, depression may ensue (Billings, 1980). Initial depression in the C.C.U. does not appear to be related to outcome. However, in a 2-1/2 year study patients who did not survive had displayed significantly more pessimism and depression at 3, 6 and 12 months post infarct (Obier, MacPherson & Haywood, 1977). This finding is in accord with the early work of Engel and Schmale (1967) who described the “giving-up, given-up” state of helplessness and hopelessness in illness behavior, and of Kimball (1969) who found the greatest incidence of death following open-heart surgery in depressed patients.

Control and Predictability Control and predictability may also be related to positive outcome for M.I. patients. “The greater perceived controllability of a stressor, the less harmful are its effects on the organism” (Krantz, 1980). Similarly, Buell and Eliot (1980) provide strong support for the negative impact of unpredictability. In reviewing animal experimentation they found that heightened sympathetic arousal, hopelessness and helplessness were strongly linked to sudden death.

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Behavioral Distress In an interesting study that took a more global look at behavioral distress in the C.C.U., Garrity and Klein (1975) differentiated 48 M.I. patients as adjustors and non-adjustors when assessed for the presence of emotional/behavioral disturbance using a 21-point scale. The scale consisted of 18 items that described behavioral disturbance such as anxiety, hostility, and depression, and 3 items, calmness, cheerfulness and friendliness, that described positive behavior. Observations were made during the first five days of hospitalization following M.I. Patients were judged to be non-adjustors if they showed greater behavioral disturbance and little positive behavior over the five days, or if they showed increasing behavioral disturbance and decreasing positive behavior. Despite the preponderance of scale items relating to behavioral disturbance and nonadjustment, as many adjustors as non-adjustors were found in the sample. When these patients were followed for 6 months after discharge, Garrity and Klein discovered that 41% of the non-adjustors had died versus 8% of the adjustors. The relationship between behavior and mortality held even when the severity of the attack and the presence of prior heart disease were statistically controlled. To account for this finding, they suggest that chronic psychophysiological arousal, especially in subjects with already impaired hearts, will lead to greater risk of reinfarction and death. Byrne, Whyte and Lance (1979) further analyzed behavioral responses of post-infarct patients and organized their data into four response clusters ranging from highly emotional reactions such as anxiety and depression to denial of illness

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and its consequences. The authors noted the hazards of both extremes. They state that anxiety has biochemical concomitants noxious to a vulnerable myocardium in the first few days after M.I., whereas denial, though initially protective, can become maladaptive if rehabilitation regimens are ignored. In a later prospective study, patients with poor cardiological outcomes at eight months were more likely than others to have reported a history of life stress prior to the M.I. and concern about somatic functioning following the infarct (Byrne, White & Butler, 1981). In the same study, patients who still had not returned to work at eight months were those who had accepted the sick role and who reported subjective feelings of tension.

Effectiveness of Psychotherapy In an effort to deal with the negative impact of psychological reactions to M.I., the effectiveness of psychotherapy has been examined. Cassem and Hackett (1971) found a significant reduction in the mortality rate of patients provided with help for anxiety, depression and behavior disturbances in the C.C.U. Gruen (1975) randomly divided 70 patients between the ages of 40 and 69 with first M.I.’s into a treatment and a control group. The treatment group was provided with brief cognitively focused psychotherapy. The control group received no special psychotherapeutic intervention. Gruen found that the treated patients had shorter stays in hospital, were less likely to develop medical complications in the form of arrhythmias and congestive heart failure, showed fewer manifestations of depression or anxiety and were able to return to normal activities at four months follow-up.

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However, adaptive denial that defends against disruptive anxiety and allows patients to participate in treatment should not be challenged. Gentry and Haney (1975) report on Foster’s 1971 unpublished study where psychotherapy was provided to M.I. patients in the C.C.U. These patients were given the opportunity to ventilate feelings and thoughts about their illness and were offered realistic information and implications for the future. The intervention was found to be harmful to those patients who employed denial because they responded with greater anxiety following the treatment. Gentry and Haney conclude that psychosocial intervention should be directed only at patients experiencing emotional stress and not at patients for whom denial is an adaptive coping mechanism. These results suggest that certain forms of psychological intervention can have a beneficial impact on the M.I. patient’s emotional adjustment and physical recovery. Factors addressed in such intervention include excessive anxiety, depression, pessimism, non-compliance, somatization, and feelings of lack of control. Psychological factors, however, comprise only one area for exploration.

Social and Demographic Factors Age Age, sex and social class appear to exert a significant effect on outcome after M.I. Age-related indices suggest that older patients are better able to cope with social stress, pain and anxiety. Billing, Lindell, Sederholm and Theorell (1980) found that both older men and women reported less social 792

stress, that older men required fewer analgesics and older women reported less anxiety than their younger counterparts.

Sex The Framingham Study correlated the incidence and prognosis of M.I. with the sex of the patient (Kannel, Sorlie, & McNamara, 1979). That 20-year follow-up of 5,127 men and women initially free of coronary heart disease reported that although men were three times more likely to sustain an M.I., the prognosis was distinctly worse in women. Women had a 27% early mortality rate versus 16% in men, and a 40% reinfarction rate versus 13% in men. Other studies report that female M.I. patients are more likely to come from the lower social strata (Kottke, Young, & McCall, 1980) and are more likely to display anxiety than men (Byrne, 1980-81; Billing, Lindell, Sederholm, & Theorell, 1980).

Socio-economic Class Outcome varies directly with socio-economic class. Blue collar workers are at greater risk for being non-compliers and dropouts from cardiac rehabilitation programs, especially if they smoke, do light work as opposed to hard work, and are inactive during leisure time (Oldridge, 1979). Kottke, Young and McCall (1980) used the five social strata developed by Hollingshead (1957) and found that only 35% of the lowest socio-economic class (Class 5) patients returned to work or to major activities, while almost 90% of Class 1 patients resumed these activities. Their findings indicate a direct relationship between socio-economic class and return to work or to major activities. The authors comment that when all

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cardiac events (death and reinfarction) are treated together, the lower socio-economic class patient apparently suffers from an excess burden of disease. These patients are exposed to multiple risk factors such as uncertain work opportunities, fragmented social supports, economic hardships, and reduced access to information (Ruberman, Weinblatt, Goldberg, & Chaudhary, 1984). Such risk factors may produce a lack of compliance with medication regimens and with necessary changes in lifestyle that adversely affect cardiac outcomes.

Life Events Another measure of risk factors is seen in life events signifying change or distress prior to M.I. Obier Ell, de Guzman and Haywood (1983) support the contention that high risk is conferred by social stress. They found that the higher the pre-onset stress as measured by life change scores, the poorer the level of recovery. Byrne and Whyte (1980) found that M.I. patients reported more upset, depression and helplessness in response to life events than non-M.I. hospital patients, although the sums of life change scores showed no significant difference. They suggest that it is the meaning of the event to the M.I. patient rather than the event itself that is significant. Berkman (1982) proposed that the lack of social networks can increase the negative impact of life events.

Risk Factors and Outcome Given the profusion of variables related to survival and quality of life, we need to differentiate the positive and neutral factors from the negative. Some reactions such as 794

denial have been shown to have both positive and negative characteristics. Others, like depression, are neutral if experienced in a limited way, but negative if protracted. It is important to note that positive or negative impact on outcome has little to do with the normalcy of a given behavior. When one is threatened with death, profound anxiety is a normal response; however, its effect on the M.I. patient is clearly negative. Positive factors for survival and recovery include moderate denial of anxiety and loss, a sense of control and predictability, optimism, and compliance with treatment. Negative factors include excessive denial that delays initial treatment or gives rise to non-compliance with treatment and rehabilitation; anxiety; prolonged depression; younger age on some indices; being female; being from a lower socio-economic class, and high levels of social stress and life change.

Conceptual Framework Identifying High-Risk Patients

for

Although we have identified some primary psychosocial risk factors associated with outcome following M.I., this information is of limited help unless it can be structured into a clear conceptual framework. By this we mean that it must be available for use in identifying patients most in need of social work service and for informing our assessments and interventions.

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M.I. patients who are high-risk for medical and psychosocial complications may be identified early in the C.C.U. or later, after they are transferred to a regular care floor. In some settings, all cardiac patients in the C.C.U. are reviewed by the social worker. In other settings, social work referrals are determined by the application of a high-risk screening tool (Obier Ell, de Guzman, & Haywood, 1983). In our setting, both in the C.C.U. and on the regular, cardiac care floor, we accept referrals from patients, families, medical, nursing and other patient care staff. In addition, we review all patients on the cardiac care floor on a weekly basis during multidisciplinary rounds. We developed our conceptual framework as part of a multidisciplinary rehabilitation program for M.I. patients in our acute care hospital. The framework was designed as a screening and intervention guide for social workers, and is also taught to nursing, medical and other patient care staff on the cardiac care floor and in the C.C.U. in order to help them identify M.I. patients requiring social work intervention. The framework combines four clusters of risk factors outcome. The key concepts determining outcome maladaptive versus adaptive responses paired compliance or non-compliance with treatment rehabilitation (see Table 1).

with are with and

Group I consists of patients who are at risk for recurrence and TABLE 1

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IDENTIFIABLE GROUPS RISK FACTORS

OUTCOMES

I

II

Maladaptive Anxiety Anxiety or Depression Depression Excessive Dependence Dependence Non-compliance Compliance Risk of Recurrence Cardiac Invalidism

III Adaptive Denial

Maladaptive Denial

Excessive Independen Compliance Non-compli Independence

Rehabilitation Best Rehab Potential Potential

cardiac invalidism owing to their incapacitating anxiety or depression. Through their maladaptive attempts to cope with the crisis of their illness, they become pathologically dependent and non-compliant with rehabilitation measures. Group II patients are moderately anxious or depressed but comply with treatment. They are dependent, but not excessively so, and have rehabilitation potential. However, their ability to participate in their recovery is tenuous because they have difficulty denying distressing affect. Group III patients are characterized by the adaptive use of denial to ward off anxiety and depression (Billings, 1980). They appear optimistic and independent and participate in treatment. They employ isolation of affect as a defense mechanism which allows them to acknowledge their illness without the intrusion of significant emotion. This group displays the

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IV

Increased R of Complicatio Recurrence

greatest rehabilitation potential (Wrzesniewski, 1980; Garrity & Klein, 1975; Byrne, Whyte & Lance, 1979). Group IV comprises patients who react to M.I. with maladaptive denial. Some refuse to acknowledge that they have had a heart attack and most deny that it will have much impact on their lives. They may speak as if fate alone rather than their own behavior will determine outcome. Excessively independent, they are notoriously non-compliant with rehabilitation efforts and therefore run a greater risk of complications and recurrence. In Byrne, Whyte and Lance’s study (1979) this type of patient numbered half the sample.

Intervention Strategies with Patients For the social worker on the cardiac service, the assessment of the patient’s response to M.I. should point to distinct strategies of intervention. Approaches that may be effective with one group of cardiac patients can be contraindicated for another.

Group I Patients Patients in Group I require urgent intervention. They are unable to defend against the feelings associated with real losses of health and security, and therefore experience disabling anxiety and/or depression. Their feelings are so severe and prolonged as to render them incapable of actively participating in their treatment. Fears of inducing further damage and pessimism about the future pose barriers to recovery that, left untended, lead to cardiac invalidism. Patients in this group need help to manage their 798

anxiety and depression more effectively so that they can comply with treatment. Methods which have been proven effective include empathie listening combined with information and reassurance; prescription of anxiolytic medication, and the use of relaxation therapy (Billings, 1980; Hackett & Cassem, 1982). Relaxation techniques not only aid in reducing anxiety but also act against depression by promoting a sense of mastery. A time of particular risk for this group of patients is the transfer from C.C.U. to a regular care floor. While the reduction of medical surveillance has positive connotations for staff, these changes tend to be perceived negatively by patients. Preparation for anticipated change can reduce the resulting anxiety. Mr. B., a 65-year-old married librarian, suffered an M.I. shortly after retirement. Instead of slowly increasing his activity level, the patient was apprehensive about any physical self-care task, and unless prodded, would spend all his time in bed. He brooded about the future, was acutely sensitive to any bodily change, and was preoccupied with death. Mrs. B. mirrored her husband’s feelings and thus increased the patient’s sense of doom and hopelessness. Both husband and wife rejected support from family and friends, and became increasingly dependent upon professional staff. Social work intervention consisted of regular meetings with the couple, individually and conjointly, to listen to their concerns, to identify areas requiring medical clarification, and to help the patient and his wife acknowledge progress. The social worker also maintained a close liaison with the 799

cardiologist and nursing staff in order to ensure a consistent approach to information and support. Anti-anxiety medication prescribed by the cardiologist, combined with a co-ordinated team approach, helped Mr. B. to overcome enough of his misgivings to begin to participate in treatment. The social worker arranged discharge plans with maximum community support for the patient and his wife, and continued contact until Mr. B. was well-established in an out-patient cardiac rehabilitation program.

Group II Patients Patients in Group II comply with treatment despite their anxiety and depression. Unlike patients in Group I who clearly signal their need for intervention, patients in Group II are deceptive. They are easily perceived as “good patients” because they make benign requests for encouragement and readily acknowledge apprehension and sadness. When their compliance with treatment is credited to the expression of these feelings, staff fail to identify the risk for these patients and are apt to encourage further exploration of anxiety and depression. Since these affects can have negative physiological consequences, Group II patients require preventive intervention that supportively acknowledges their participation in treatment regimens. Their consequent sense of mastery reinforces ego-strengths and promotes adaptive denial. Strategies suggested for Group I are equally effective with Group II and provide these patients with some armor once they are outside the hospital’s protective cocoon.

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Miss H., a 58-year-old unmarried secretary, in hospital for her first M.I., was referred to social work by her cardiologist. In spite of the patient’s compliance with treatment, her anxiety appeared to be interfering with optimal recovery. Prior to her illness, Miss H. had experienced her job as demanding and had devoted all her time and energy to it. She had no social network apart from her job and no recreational outlets. The social worker helped Miss H. to re-evaluate her priorities and also provided much-needed emotional support. In addition, the worker introduced the patient to relaxation tapes so that she might gain a sense of control over her anxiety. These interventions helped to relieve Miss H.’s apprehension, but her anxiety resurfaced prior to discharge. Careful discharge planning, including referral to a women’s support group and an out-patient cardiac rehabilitation program, helped to reduce Hiss H.’s fears and ease her transition to a new lifestyle.

Group III Patients Patients in Group III may be described as adaptive deniers. Their optimistic attitude and compliance with rehabilitation measures bode well for a successful outcome. Research provides evidence that their denial should be encouraged and supported, not challenged. When medical and nursing staff refer a Group III patient to social work, the request frequently reflects staff anxiety rather than patient need. Patients in Group III and their families generally cope well with the emotional and practical consequences of illness; so well, in fact, that staff may feel that affective issues are not being

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addressed. However, as long as the patient participates in treatment and rehabilitation, optimism need not be tempered with pessimistic versions of potential reality. When denial is more tenuous, and anxious or depressive feelings break through, staff should listen empathically and then actively point out positive aspects of the patient’s progress and prognosis. The social worker’s primary role with Group III is to alert staff to the need to support these patients in their successful adaptation. Mr. L., a married 58-year-old man, suffered his first M.I. while he was in town attending a sales convention. Instead of the anxiety that one might anticipate in a patient who becomes seriously ill in a strange city, Mr. L. was jovial, outgoing and optimistic. Nursing staff referred him to social work because they felt that he wasn’t taking their teaching efforts seriously. They were distressed that the patient responded with humor and mild sexual innuendo, instead of dealing with his feelings about the M.I. The social worker asked staff whether the patient was complying with treatment, and whether his family, who had flown in to be with him, were supportive of rehabilitation efforts. Nursing staff replied, “Oh yes. There’s no problem there.” The social worker then suggested that the nurses should join Mr. L. in his lighthearted approach, and support his adaptive denial. When staff followed this plan, their concerns about the patient disappeared.

Group IV Patients Group IV patients, however, require specific intervention strategies aimed at altering their maladaptive coping methods.

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These are the patients whose denial prevents them from co-operating with treatment and rehabilitation. Members of this group are more likely to be men and frequently, though by no means exclusively, from lower socio-economic strata. Women are seldom found in this group because they are socialized to express feelings and are psychologically less likely to utilize the defense mechanism of denial. In hospital, these patients may request special privileges to work from their bedside and are eager for discharge. Some have difficulty absorbing information because of their need to deny reality. For others, denial is compounded with faulty communication from caregivers. Once out of the hospital, Group IV patients refuse to pace their activity levels, discontinue medication without consultation, resume smoking, fail to recognize physical symptoms and drop out of cardiac rehabilitation programs. Their denial is clearly maladaptive. Maladaptive denial ensues when reality and its consequences are perceived as overwhelming. Such patients employ excessive denial to defend against the anxiety aroused by a loss of control over destiny. The goal of intervention is to reconnect these patients with reality while bolstering their sense of mastery. This is done by providing patients with clear information regarding the rationale for medical protocols and then including them in making decisions about the rehabilitation process. Early involvement in physical rehabilitation is a powerful method for increasing the patient’s sense of competence. Membership in a peer support group can also help to consolidate the rationale for compliance (Boyce, 1981). By reducing feelings of isolation and disability, the peer group encourages patients to 803

participate in rehabilitation and to adopt a more constructive means of re-establishing control. Mr. Κ., a 65-year-old married businessman, led an intensely active lifestyle prior to M.I. He took great pride in his success and the luxuries that accompanied it. Because his selfesteem was closely tied to his accomplishment, he was extremely resistant to treatment recommendations that appeared to limit his pace and undermine his sense of control. He bullied his somewhat passive wife into bringing him food that contravened his anti-hypertensive diet. He refused to learn about medication, stating that he never took pills. Predictably, he agitated for an early discharge. The social worker assessed the patient as one who employed maladaptive denial to defend against anxiety and loss. Her efforts to provide Mr. K. with realistic information about the need for co-operation in treatment met with little success. She believed, however, that in a climate of peer support, Mr. K. might begin to participate in his treatment and rehabilitation. She therefore suggested that the cardiologist refer Mr. K. to a prestigious cardiac rehabilitation program in the city, and that the doctor emphasize the fact that many successful businessmen and professionals attended the program. The worker then met with the patient’s wife to clarify rehabilitation goals and to enlist her help. To ensure that Mr. K. became connected to the rehabilitation program, the worker spoke to staff at the center and asked them to make special efforts to introduce Mr. K. to patients similar to himself. On follow-up, Mr. K. had not reduced his pace of activity, but was complying with medication, diet and exercise regimens.

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Intervention with Families The preceding intervention strategies can only be effective if families and other social support networks are perceived as crucial to the patient’s recovery (Mailick, 1979). The crisis of M.I. causes a major upset in the stability of the family system. Initial reactions of shock and disbelief can reinforce the patient’s denial and delay treatment. Once the event is acknowledged, anxiety about the patient’s survival prevails throughout the C.C.U. period. The common practice of centering all attention on the patient and ignoring the family’s need for information and support exacerbates this anxiety (Speedling, 1980). Rarely are provisions made for the family to meet regularly with physicians and nurses to ask questions and receive information about the patient’s medical progress. When families are viewed by the medical team as passive outsiders, they tend to relate to the patient on the basis of their anxious misconceptions. This creates a barrier between family and patient that can turn visits into a source of stress rather than comfort. Instead of accepting this exclusion, the social worker should ensure that the family’s unique knowledge of the patient and genuine desire to be helpful are harnessed to the common goals of recovery. This task is accomplished by facilitating the information flow between hospital staff and the patient’s family. Greater input from the family not only enhances the care of the patient but also gives family members an opportunity to share their own feelings and regain a sense of control.

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Mr. E., a 65-year-old employed man, reacted to his first M.I. with denial about the severity of his illness, and displacement of his anxiety onto his job. In fact, his job was not in jeopardy. Nevertheless, C.C.U. staff were worried that he might sign himself out of hospital. The patient’s wife responded to staff’s concern by criticizing her husband for not realizing how sick he was. Her reaction forced Mr. E. into a more extreme form of denial and he demanded a phone by his C.C.U. bed so that he could call his customers. The social worker learned from the patient’s family that Mr. E. was unable to tolerate inaction and tended to cope with problems by accelerating his pace of activity. In order to help Mr. E. reestablish a sense of control over some events in his life, the social worker conveyed the family’s perceptions to staff and asked them to allow the patient some limited access to the telephone. She then counselled Mrs. E. to reassure her husband that he was improving and would soon be moved to a floor where he could gradually increase his activity. This intervention reduced the maladaptive responses of patient and family, and demonstrated to staff that the patient’s co-operation with treatment could be improved when family perceptions were included in the treatment approach. The family’s participation is vital throughout the recovery period. As the patient improves, the family needs specific information about levels of activity, the purpose and effects of medication, recommended changes in diet and smoking habits, methods of reducing stress and resumption of sexual relations. This information can reduce the impact of new anxieties as the family shifts its focus from survival of the patient to long-range adaptation. Part of the social worker’s role with

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the family is to help members obtain and clarify information and deal with necessary adjustments in their lifestyle. Assuming that information needs are being met, the family still must contend with other feelings such as guilt, anger and depression that can impede adaptation. If family members feel that they precipitated the patient’s M.I., their guilt feelings may prevent them from providing optimal support. Spouses may feel that they should have urged the patient more vigorously to slow down, change eating habits or exercise. Since M.I.’s are associated with business worries and are not uncommon following arguments (Kavanagh & Shephard, 1973; Greene, Goldstein & Moss, 1972), families may feel that they should have done more to protect the patient from life stresses. When these guilt feelings are not dealt with directly, they express themselves as over-protection of the patient and in demanding behavior towards staff. Families need help to examine the realistic basis for their feelings, not only what they have a right to feel guilty about, but also what they have taken unwarranted responsibility for. Family members need to be helped to understand that the patient’s vulnerable physical condition was such that the M.I. could have occurred at any time — if not this stress, then the next. Their realistic guilt feelings can be further reduced by encouraging them to become positive participants in the patient’s rehabilitation. Mrs. S., an active professional woman in her mid-fifties, suffered a severe first M.I. following a stressful period of family contention. She responded with anxiety, demanding behavior and feelings of helplessness, and this was compounded by her family’s over-protectiveness. Because her husband and her son felt guilty about the events in the 807

family, they consequently complained to staff about inadequate care. In addition, they refused to allow Mrs. S. to do anything for herself, even when self-care activities were prescribed by the physician. The social worker met with the patient’s family and explored their feelings of responsibility. She praised their care and concern for Mrs. S., and pointed out that all families have stressful periods. She then helped them to meet with the physician to clarify that they could best help the patient by encouraging her in a graduated activity program and by reinforcing progress. Once the family was able to reframe its helping efforts in a way that was consistent with rehabilitation goals, Mrs. S. began to participate in her care. Anger in families can occur as a mask for guilt feelings but also arises in response to the growing awareness of the disruptions that the M.I. brings to the family’s former equilibrium. Family members are understandably reluctant to express their negative feelings towards the cardiac patient for fear of making things worse. Since this concern is a valid one, the social worker can help family members share and understand their feelings and prevent them from going underground or being acted out in a disruptive way towards staff. Families may, however, experience anger about genuine problems with the caregiving system. It is important to identify these problems and to act as an advocate in order to prevent the escalation of these feelings. Mr. P. was a 47-year-old married businessman in hospital following a first M.I. His course in C.C.U. was uneventful and he presented an impatient but cheerful demeanor to staff after transfer to the regular cardiac care floor. The patient’s wife made a complaint that her husband was not happy with 808

his meals because they differed from what he had selected. Unfortunately no action was taken on the complaint, and two days later Mrs. P. again took her grievance to the nursing staff in a more heated fashion. At this time the nurse referred the patient to the nutritionist and his wife to the social worker for assessment. In rounds, other staff commented that the patient and his wife were not dealing with their feelings about the illness and were complaining about the food instead. The social worker assessed the patient and his wife and observed that they understood most of the treatment requirements, were optimistic about the future, but annoyed with the care in the hospital. The social worker contacted the nutritionist and asked her to explain the reasons for Mr. P’s diet to both the patient and his wife. She then shared with the nursing staff her perception of the patient as one who used adaptive denial to cope with his M.I. She also suggested that if there had been an earlier consultation from the nutritionist, Mrs. P. might not have moved from complaint to anger. Depression, sadness and grief are a response to the loss of what was. Hopes for the future are jeopardized. Along with health and financial stability, the integrity of the family is at issue (Dhooper, 1983). Feelings of anxiety and depression are especially prevalent at the time of discharge, a time when most families expect to be elated. It is as if the grim reality has set in and the change in health of the patient is most evident. To be prepared for this reaction can help family members reduce its impact. They need to know that this response is normal and common during the process of recovery. Reassurance consisting of realistic optimism and ready access to information can help patient and family master this phase. 809

Mrs. A., a 54-year-old self-employed married M.I. patient, was referred to social work because his depression was preventing him from increasing his activity level and delaying his discharge from hospital. He believed that he had lost his capacity to work and to lead a normal life. His wife shared his sadness and openly worried about being left a widow. The social worker assessed that the couple’s information needs were not being met and so she intervened to increase communication by involving medical staff in regular joint meetings with the couple. The meetings reviewed the patient’s progress, offered encouragement and helped to prepare for discharge. By treating this couple as a unit and offering them generous access to accurate information and support, their adaptation to the M.I. was infused with a sense of optimism. A major support to families of M.I. victims can be provided through links with community services following discharges. Cardiac rehabilitation programs, public health nursing, and family counselling agencies are underutilized resources that can make an enormous difference to patients and families (Dhooper, 1983). One goal of social work follow-up is to identify and refer families that can benefit from these sources of help. Because high-risk patients are more likely to drop out of rehabilitation programs, continuing support may be required to maintain the connection.

Discussion During the past two years, social workers in our acute care hospital have been using the framework as a guide for their

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assessments and interventions with M.I. patients. They report that the framework has significantly altered their perceptions and practice with this patient population. Even those workers who have infrequent contact with cardiac patients note that the framework has helped them to focus their assessments and clarify goals for intervention. The framework seems to be especially suited to social work’s value base because it helps to identify and support the strengths and adaptive coping mechanisms of M.I. patients and their families. The approach also highlights the crucial role of patient and family as participants in the treatment and rehabilitation process. In order to use the framework effectively, social workers need to differentiate those M.I. patients who can benefit from a rehabilitation approach from cardiac patients whose circumstances require palliation. The former include M.I. patients who have a reasonable hope of returning to an active lifestyle; the latter include patients with severe cardiomyopathy and other forms of end-stage heart disease. If the social worker assigned to the C.C.U. or cardiac care floor does not personally assess every M.I. patient, then nursing, medical and other patient care staff need to be trained so that they can use the framework to identify patients for referral to social work. In our setting, as part of our cardiac rehabilitation program, we have discussed the framework with cardiologists and have participated in formal in-service training sessions with staff from nursing, physiotherapy, nutrition and pharmacy. This process has enhanced communication among team members, has

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improved the quality of referrals, and has promoted a more consistent approach to patients. Although our evaluation of the effectiveness of the framework is anecdotal, the high-risk patients identified through its use and provided with appropriate intervention seem to have more success in linking up with out-patient cardiac rehabilitation programs, staying on medication regimens, and returning to an active lifestyle. We are in the process of designing a systematic evaluation of outcomes to examine these impressions.

Summary Social work practice with M.I. patients differs from approaches to other patients seen in the acute hospital setting. Many patients referred to social work require concerted exploration of anxiety and depression or confrontation of denial in order for them to benefit from treatment. When M.I. patients experience excessive anxiety, depression, denial or social stress, they are also at risk for psychosocial and physical complications. However, methods which are helpful to M.I. patients are markedly different. Strategies are indicated which support adaptive denial and increase compliance with treatment and rehabilitation measures. Families can also be a positive or negative force for recovery and call for careful attention to their own needs for information and support. The framework outlined in this article enables social workers to differentiate between adaptive and maladaptive responses to Μ.I., to meet the needs of patients and families more effectively and to avoid unproductive interventions.

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Note Reprinted from Social Work in Health Care, Volume 11(1), Fall 1985.

References Berkman, L.F. Social network analysis and coronary heart disease. Advances in Cardiology, 1982, 29, 37-49. Billing, E., Lindell, B., Sederholm, M. & Theorell, T. Denial, anxiety and depression following myocardial infarction. Psychosomatics, August, 1980, 21(8), 639-645. Billings, C.K. Management of psychologic responses to myocardial infarction. Southern Medical Journal, 1980, 75(10). Boyce, M. Borgess hospital has outstanding example of cardiac rehabilitation program. Michigan Medicine, April 1981, 185-186. Buell, J.C. & Eliot, R.S. Fundamentals of clinical cardiology: Psychosocial and behavioral influences in the pathogenesis of acquired cardiovascular disease. American Heart Journal, November, 1980, 100(5), 723-740. Byrne, D.G. Effects of social context on psychosocial responses to survived myocardial infarction. International Journal of Psychiatry in Medicine, 1980-81, 70(1), 23-31.

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Byrne, D.G., & White, H.M. Life events and myocardial infarction: the role of measures of individual impact. Psychosomatic Medicine, January, 1980, 42 (1), 1-10. Byrne, D.G., White, H.M. & Butler, K.L. Illness behaviour and outcome following survived myocardial infarction: a prospective study. Journal of Psychosomatic Research, 1981, 25(2), 97-107. Byrne, D.G., White, H.M. & Lance, G.H. A typology of responses to illness in survivors of myocardial infarction. International Journal of Psychiatry in Medicine, 1978-79, 9(2), 135-144. Cassem, N.H. & Hackett, T.P. Psychiatric consultation in coronary care unit. Annals of Internal Medicine, 1971, 75, 9-14. Cay, E.L. Psychological problems in patients after a myocardial infarction. Advances in Cardiology, 1982, 29, 108-112. Croog, S.H., Shapiro, O.S. & Levine, S. Denial among male heart attack patients. Psychosomatic Medicine, 1971, 33, 385-397. Dhooper, S.S. Family coping with the crisis of heart attack. Social Work in Health Care, Fall, 1983, 9(1), 15-31. Engel, G.L. & Schmale, A.H., Jr. Psychoanalytic theory of somatic disorder: conversion, specificity and the disease onset situation. Journal of the American Psychoanalytic Association, 1967, 15, 344-365.

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Foster, S.B. Effects of interpersonal communication on urinary sodium-potassium ratio (a stress indicator). Unpublished Master’s thesis, Washington, D.C., Catholic University of America, 1971. Cited in Gentry, W.D. & Haney, I. Emotional behavioral reaction to acute myocardial infarction. Heart and Lung, September-October, 1975, 4(5), 738-745. Garrity, T.F., & Klein, R.F. Emotional response and clinical severity as early determinants of six-month mortality after myocardial infarction. Heart and Lung, September-October, 1975, 4(5), 730-737. Garrity, T.F., McGill, A., Becker, M. & Blanchard, E. Report of the task group on cardiac rehabilitation. In Weiss, S.M. (Editor), Proceedings of the National Heart and Lung Institute Working Conference on Health Behavior. Department of Health, Education and Welfare, Publication No. 76-868, 1976. Gentry, W.D. & Haney, T. Emotional and behavioral reaction to acute myocardial infarction. Heart and Lung, September-October, 1975, 4(5), 738-745. Greene, W.A., Goldstein, S. & Moss, A.J., Psychosocial aspects of sudden death. Archives of Internal Medicine, May 1972,129, 725-731. Gruen, W. Effects of brief psychotherapy during the hospitalization period on the recovery process in heart attacks. Journal of Consultation in Clinical Psychology, 1975, 43, 223-232.

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Hackett, T.P. & Cassem, N.H. Coping with cardiac disease. Advances in Cardiology, 1982, 31, 212-217. Hackett, T.P. & Cassem, N.H. Psychological aspects of rehabilitation after myocardial infarction. In N. Wenger & H.K. Hellerstein, (Eds.), Rehabilitation of the Patient after Myocardial Infarction. Chichester: Wiley & Sons, 1979. Hackett, T.P., Cassem, N.H., & Wishnie, H.A. The coronary-care unit—an appraisal of its psychological hazards. New England Journal of Medicine, December, 1968, 279(25), 1365-1379. Hollingshead, A.B. Two-factor index of social position. Mimeographed, 1957. Cited in Kottke, T.E., Young, D.T. and McCall, M.M. Effect of social class on recovery from myocardial infarction. Minnesota Medicine, August, 1980, 590-597. See also Hollingshead, A.B. and Redlich, F.C. Social Class and Mental Illness. New York: John Wiley & Sons, 1958. Kannel, W.B., Sorlie, P. & McNamara, P.M. Prognosis after initial myocardial infarction: The Framingham Study. American Journal of Cardiology, July, 1979, 44, 53-59. Kavanagh, T. & Shephard, R.J. The immediate antecedents of myocardial infarction in active men. Canadian Medical Association Journal, July, 1973, 109, 19-22. Kimball, C.P. Psychological responses to open-heart surgery. American Journal of Psychiatry, September, 1969, 126, 348-359.

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Kottke, T.E., Young, D.T. & McCall, M.M. Effect of social class on recovery from myocardial infarction. Minnesota Medicine, August, 1980, 590-597. Krantz, D.S. Cognitive processes and recovery from heart attack: a review and theoretical analysis. Journal of Human Stress, September, 1980, 27-38. Mailick, M. The impact of severe illness on the individual and family: an overview. Social Work in Health Care, Winter, 1979, 5(2), 117-28. Minckley, B.B., Burrows, D., Ehrat, Κ., Harper, I., Jenkin, S.A., Minckley, W.F., Page, B., Schramm, D.E. & Wood, C. Myocardial infarct stress-of-transfer inventory: development of a research tool. Nursing Research, January-February, 1979, 28(1), 4-10. Obier, K., MacPherson, M. & Haywood, J.R. Predictive value of psychosocial profiles following acute myocardial infarction. Journal of National Medical Association, 1977, 69, 59-61. Obier Ell, Κ., de Guzman, M. & Haywood, L.J. Stressful life events: a predictor in recovery from heart attacks. Health and Social Work, Spring, 1983, 8(2), 133-142. Oldridge, N.B. Compliance with exercise programs. In M.L. Pollock and D.H. Schmidt (Eds.). Heart Disease and Rehabilitation. Boston: Houghton Mifflin Professional Publishers, 1979.

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Ruberman, W., Weinblatt, E., Goldberg, J.D. & Chaudhary, B.S. Psychosocial influences on mortality after myocardial infarction. The New England Journal of Medicine, August, 1984, 311(9), 552-559. Speedling, E.J. Social structure and social behavior in an intensive care unit: patient-family perspectives. Social Work in Health Care, Winter, 1980, 6(2), 1-22. Taggart, P. & Carruthers, M. Behaviour patterns and emotional stress in the etiology of coronary heart disease: cardiological and biochemical correlates. In D. Wheatley, (Ed.). Stress and the Heart, New York: Raven Press, 1981. Thomas, S.A., Lynch, J.J. & Mills, M.E. Psychosocial influences on heart rhythm in the coronary-care unit. Heart and Lung, September-October, 1975, 4(5), 746-751. Winefield, H.R. & Martin, C.J. Measurement and prediction of recovery after myocardial infarction. International Journal of Psychiatry in Medicine, 1981-82, 77(2), 145-154. Wrzesniewski, K. The development of a scale for assessing attitudes toward illness in patients experiencing a myocardial infarction. Social Science and Medicine·, 1980,14A, 127-132.

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Medical Handmaidens or Professional Colleagues: A Survey of Social Work Practice in the Pediatrics Departments of Twenty-Eight Teaching Hospitals Jane H. Pfouts, PhD Brandon McDaniel, MS At the time of writing Dr. Pfouts was Associate Professor, School of Social Work, University of North Carolina at Chapel Hill, 223 East Franklin Street, Chapel Hill, NC 27514; and Ms. McDaniel was Chief Social Worker, Pediatrics Department, Duke Hospital, Durham, NC. SUMMARY. This paper, based on questionnaire data gathered in the summer of 1975, analyzes the ways in which social workers in the pediatrics departments of twenty-eight teaching hospitals define their roles and describe their activities. Data on overall social work coverage in these hospitals is briefly described, with emphasis on hospital size, professional preparation of staff, academic rank, and staffing

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patterns. Within this context, data analysis focuses on the extent to which pediatric social workers exercise autonomy in direct service, teaching, and research. Areas on the pediatric service which are examined include worker-bed ratios, direct practice coverage, and participation in grand rounds, medical rounds, policy-level committees, teaching, and research. Social work role priorities and obstacles to quality role performance are also discussed. Autonomy has been called the hallmark of the professional practitioner. According to Carr-Saunders,1 social workers lack professional autonomy because the employer lays down the limits to the service and, to some extent, determines its kind and quality. Using this standard, Carr-Saunders would probably rate hospital social work as particularly vulnerable to the “handmaiden” label because of the formidable set of organizational pressures and constraints under which it operates. However, we believe that role definition is a fluid, interactive process between social work and its host institution. Even in the most difficult settings, social work is always involved, either actively or passively, in shaping its own destiny. Social workers are not the only professional group who must cope with the dilemmas of institutional adaptation. Increasingly, all professions have members who are salaried staff personnel in host agencies. Yet, with similar institutional constraints, autonomy varies among ancillary groups. Therefore, we suggest that the autonomy problem of hospital social workers involves more than constraints imposed by doctors and administrators. It also involves the way hospital social workers define themselves. Hallowitz2 asserts that, in his experience as a social work director at a number of hospitals, “social workers do little more than 820

complain bitterly to each other or to the administrator about their low level work and their treatment as physicians’ handmaidens rather than as professional colleagues.” Hallowitz pensively asks, “Do they really expect the administrator to call the physicians together, chastise them, and persuade them to treat social workers as professionals?” Hallowitz glumly opines that “these low status conditions have long persisted and the social workers, not the physicians, perpetuate the system.” Most of us who have worked in hospitals would consider this to be an exaggerated and one-sided explanation of what actually goes on, but we would also have to admit that hospital-based social workers cannot escape some measure of responsibility for unsatisfactory as well as satisfactory role definitions. This paper looks at the current role performance of social workers in twenty-eight teaching hospitals, based on information supplied by the social workers themselves. In the summer of 1975, social workers in the pediatrics departments of fifty-four teaching hospitals were asked to respond to a questionnaire, and thirty-four (63%) did so. Eight of these responses were later discarded because of incomplete data, leaving a total of twenty-eight questionnaires on which this analysis is based. A comparison between the twenty nonresponding and the thirty-four responding institutions revealed no significant differences between the two groups in size or type. Part I of the paper describes characteristics of the teaching hospitals and their social work departments. Part II analyzes some of the ways pediatric social workers in these hospitals define their roles and describe their activities. Data analysis focuses on the extent to which professional autonomy is 821

presently exercised by pediatric social workers in the areas of direct service, teaching, and research.

I. Characteristics of the Twenty-Eight Teaching Hospitals and Their Social Service Departments Hospital Size The twenty-eight hospitals in our survey are, in the main, large, complex teaching hospitals attached to prestigious university medical schools. Approximately one-half of these institutions have from 600 to over 1000 beds; one-fourth have 300 to 600 beds, and one-fourth are small, pediatric teaching hospitals with 100 to 300 beds. In all but two of these hospitals, the medical social workers are members of a centralized social service department.

Professional Training of Total Social Work Staff Seventy-eight percent of staff members in our sample are master’s level social workers, and 22% are BAs, BSWs, non-social work MAs, and others. In all cases, staffs include both MSW and non-MSW workers, but in only one instance are MSWs in the minority. The universal pattern is one in which the MSWs serve as administrators, supervisors, and case workers, and non-MSWs as case aides working under MSW supervision. Clearly, in this sample, MSW social workers continue to dominate the social work departments in teaching hospitals, and there is no evidence of a trend toward

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lower educational positions.

requirements

for

professional

staff

Academic Rank of Hospital Social Workers Exclusive of Psychiatry The extent to which social workers on medical services, outside psychiatry, hold academic rank in these hospitals varies widely. In 29% of the cases, no medical social workers have an academic appointment, in 35% the only medical social worker holding rank is the departmental director, and in 36% other medical social workers also have faculty status. In only one department do all medical social workers also have faculty status. In only one department do all medical social workers with the MSW hold academic rank. These findings can be contrasted with those from a 1971 study by Large and Robinson of social workers in seventy-seven academic departments of psychiatry.3 This study found that in 29% of the psychiatric departments surveyed, all social work clinicians with the MSW held academic rank, in 61% some of the workers held rank, and in only 10% did none have appointments. Clearly, for whatever reason, social work roles are more likely to be viewed as meriting academic status in psychiatry than in the medical services. We can also contrast our data with the Large and Robinson study on source of academic rank. In the case of psychiatry, over 90% of the appointments were in the psychiatric department or elsewhere in the medical school. On the medical side, in our study, roughly two-thirds of the appointments are also of this type, while one-third involve no medical school appointments at all, where only the director of social work holds academic rank, and that usually from a school of social work.

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In our study, the rank held is mainly that of clinical instructor, with a minority of assistant professors and only two associate professors. There are no comparable data from the Large and Robinson study, but it is probable that tenured professorships are the exception in psychiatry as well. It appears clear that although many social workers in teaching hospitals can legitimately point with pride to their faculty status, it is important to remember that there are obvious autonomy problems for any group whose members are almost entirely confined to the untenured junior faculty ranks in an academic setting.

Staffing Patterns Although, admittedly, worker-bed ratio is only one of several factors involved in staffing pattern decisions, this measure gives a rough estimate of staffing uniformity among hospitals. The average ratio of medical social workers to hospital beds in our survey is one to thirty, and the average number of medical social work staff is twenty-three. However, there is great variation among institutions, and there appears to be no generally accepted ratio of social work staff to hospital size. For example, the six hospitals in our sample with from twenty to thirty workers range in size from 250 to 1200 beds. Or, conversely, the seven huge medical centers in our sample with at least 1000 beds have medical social work staffs which vary between seventeen and fifty-five workers. A landmark 1954-55 survey of the social work departments of twelve hundred general and TB hospitals by the American Hospital Association, the Medical Social Work Section of NASW, and the United States Public Health Service4 found the same disturbing lack of staffing uniformity and urgently

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recommended that social work develop criteria to establish professionally acceptable staffing patterns for hospitals by type and size. A 1969 survey of 359 hospitals (275 of which were teaching institutions) conducted by the American Society of Hospital Social Service Directors5 had similar findings, and the researchers commented on the disappointing evidence of the lack of clear trends which might suggest some consensus on standards.6 Recently, Abraham Lurie has argued in this journal that social work in health care agencies needs to reexamine its unsolved staffing problems now because of funding pressures, third-party payments, and administrative demands for explicit definition and measurement.7 Our limited data on staffing patterns suggests that not much has changed in twenty years. Social workers have still not carried out the recommendations of the 1957 American Hospital Association report which urged that studies be conducted to determine the need for social work by inpatients and outpatients, the nature and extent of services needed, and the number of social workers required to provide these services.8 In the absence of empirical data, arbitrary standard setting is meaningless.

II. Pediatric Social Work Activities In our questionnaire, we inquired about pediatric staffing patterns, referral sources, case loads, roles, participation in medical rounds, teaching, and research.

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Staffing Patterns Not surprisingly, in view of the special needs of ill children, the average worker-bed ratio of pediatric social workers in our sample is one to twenty-four, in contrast to an average of one to thirty for total hospital beds. Our sample also shows that the average worker-bed ratio in the eight small pediatric hospitals (one to seventeen) is much more favorable than that of the twenty pediatric departments in general hospitals (one to twenty-six). The average number of pediatric social workers in the twenty-eight hospitals in the sample is eight. The average in the eight pediatric hospitals is thirteen and in the twenty pediatric departments of general hospitals is six. The proportion of total social work staff which is assigned to pediatrics in general hospitals suggests that both pediatricians and social workers set a high value on social work with sick children and their families. The even greater use of social workers by pediatricians in their own hospitals indicates that, given the administrative power to increase social work staff, pediatricians do exactly that.

Referral Sources As Helen Rehr and her colleagues have documented,9 the traditional system of case referral determines in advance the kinds of clients medical social workers see and do not see. Gorden and Rehr assert that, by not defining its own case-finding system, social work relinquishes the right to set its own priorities.10 According to Weiner,11 pediatric social

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workers have time and personnel to serve only 10% to 15% of the total pediatric population. In our study, an average of 11% of all pediatric patients is seen by social workers. Client needs will always outrun worker resources; therefore, it is essential that we give priority to the fraction of cases that need us most. To do so, we must control our case assignments. In order to assess the extent to which our sample displayed autonomous behavior in choosing clients, the pediatric social work respondents were asked to list referral sources in order of frequency. Social services case-finding ranks third, behind referrals from physicians and nurses, but ahead of patient and family, other hospital personnel, and outside agencies. The relatively high case-finding activity among our sample suggests a trend toward greater professional autonomy, and an important step away from the handmaiden role.

Pediatric Caseloads and Coverage Our pediatrics sample differs widely in estimated average case load for workers. The reported range among departments of from twenty-five to one hundred twenty-five cases per month suggests that case loads are determined more on the basis of external pressures than on professional criteria. The question of how social work priorities are set can also be approached by looking at which services are chosen to receive 100% coverage. Almost all the pediatric social work staffs in the study give total coverage to one or more specific patient groups, but the basis for choice is not apparent. Every conceivable pediatric problem group is given priority by somebody, but there appears to be little professional

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consensus among pediatric social workers about which groups are likely to profit most from intensive social work intervention. It is true that 100% coverage is most often given in the intensive care nursery and in areas of abuse and neglect, hematology, birth defects, and cystic fibrosis. However, differences in 100% coverage are far more evident than similarities, which suggests that service priorities are determined more by idiosyncratic factors within each department than by any widely held social work consensus concerning our professional mandate, knowledge, and skills.

Participation in Rounds The strong interdisciplinary emphasis in the direct service activities of the pediatric social workers can be inferred from the data concerning their participation in rounds. Ninety-three percent of the respondents or their colleagues are routinely involved in pediatric medical rounds, and 75% have participated in grand rounds case presentations. Unfortunately, we did not request data about social work rounds, but a number of respondents mention the utility and success of this type of interdisciplinary case conference in their departments. It is easy to forget that not long ago social work participation in rounds was an issue, not an accomplished fact. The importance of our gains in this area cannot be overestimated because rounds offer opportunities for early case-finding and coordinated case management, in addition to serving as vehicles for social work teaching and consultation.

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Teaching and Consultation In our sample, the teaching of medical students and house staff, nursing students, social work students, and other trainees in the medical center is given high priority by the pediatric social workers. Ninety-three percent of the respondents report they are engaged in formal and informal teaching activities. Unstructured, informal teaching involving clinical demonstration and consultation about specific cases is frequently mentioned, but an impressive amount of formal teaching also takes place. There is widespread use of pediatric social workers as guest lecturers in courses taught by other faculty members, and a sizeable minority carry responsibility for conducting seminars, modules of courses, or elective courses for a wide variety of professional and paraprofessional groups. Subjects frequently covered in formal presentations include normal growth and development, interviewing, psychosocial components of health and illness, family dynamics, child abuse and neglect, and parent-child interaction. Undoubtedly, much of the teaching activity of social workers in hospitals, particularly in case demonstration and consultation, is hidden from official scrutiny and is not labeled as such by others. Nevertheless, our data indicate that pediatric social workers are recognized throughout the hospital structure as authorities on the social components of health care. In some instances official recognition takes the form of academic rank, and in almost all instances unofficial recognition is evident through the widespread demands for social workers as formal and informal educators.

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Research William Gordon has characterized social workers in health care as the least theoretically and most realistically oriented of all social workers.12 In our sample, 43% of the respondents report no research activity at all among their pediatric social work colleagues, 29% have members serving on medical research teams, 27% list involvement in both medical and social work research, and one person reports involvement in social work research only. Our questionnaire did not include an exploration of the extent or type of research activity involved, but our scanty data do suggest that where research activity exists there is a strong likelihood it will be on a medical team. Yet, Gordon has warned hospital social workers of the limited professional value to social work of involvement in medical research: “These studies conducted by someone else and to which you contribute are fine; but unless they provide for your testing and extending your own knowledge they contribute only to your appreciation and not to the growth of your professional base.”13 The claim to autonomy of any profession rests, in large part, on the fund of knowledge which it creates and validates. Harriett Bartlett argues that by clarifying social work knowledge in the health field, social workers would be better able to specify the times and places at which intervention would be most fruitful, would be less dependent on referrals and guidance from physicians, and would have more to contribute to interdisciplinary practice and education.14 Because teaching hospitals are research institutions, all professionals, including social workers, are encouraged to

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conduct investigations in their areas of competence. Therefore, it is not lack of autonomy or institutional resources, but rather the lack of commitment of social workers themselves (and the schools of social work which trained them) to the research role that is the impediment.

Role Priorities of Pediatric Social Workers Respondents were asked to state their most important social work roles in the pediatrics departments of the twenty-eight teaching hospitals in order to assess the relative emphasis given to direct service, consultation and teaching, research, and systems change. There is almost complete agreement (93%) that demonstration through direct service is the central social work role. Teaching and consultation activities also receive high priority. Nobody mentions research as an important role, and only one person lists program planning. In general, our data are in agreement with findings of the 1971 study by Ullmann et al.,15 which compares the professional activities of over 600 NASW hospital-based social workers and nearly 500 NASW social workers functioning in non-hospital settings. The Ullmann study concludes that even though there are some variations according to rank, the hospital is distinctive in its configurations of activities and interactions. Compared with non-hospital social work roles, it places more emphasis on direct service to clients as well as on interdisciplinary practice and teaching medical students, less emphasis on research and administrative program planning and roughly equal emphasis on collaboration with community agencies, consultation on community health needs, teaching 831

social work students, participation in administrative staff conferences, and record keeping.16

Conclusion Handmaidens or colleagues? As is the case with most social work questions, there is no clear-cut answer. In this paper, we have attempted to show that, in some aspects of their practice, hospital social workers are more autonomous than myth would have it, but that in others the opportunities to achieve greater autonomy are not grasped. The findings support our contention that it is not institutional forces alone, but the interaction of social workers and institution which determine the professional status of social work in the teaching hospital.

Notes An earlier version of this paper was presented at the Annual Forum of the National Conference on Social Welfare, Washington, D.C., June, 1976. Reprinted from Social Work in Health Care, Volume 2(3), Spring 1977.

References 1. Alexander M. Carr-Saunders, “Metropolitan Conditions and Traditional Professional Relationships,” in The Metropolis in Modem Life, ed. Robert M. Fisher (Garden City, N.Y.: Doubleday, 1955), p. 283.

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2. Emanuel Hallowitz, “Innovations in Hospital Social Work,” Social Work 17 (July 1972): 89-97. 3. Dorothy Large and Marie Robinson, “Social Workers in Academic Departments of Psychiatry,” Social Service Review 47 (December 1973): 613-615. 4. American Hospital Association, National Association of Social Workers—Medical Social Work Section, and United States Public Health Service, Social Work in Hospitals: A study of social service departments in general and tuberculosis hospitals in the United States, 1954-55, U.S.P.H.S. Publication 519 (Washington, D.C.: U.S. Government Printing Office, 1957), p. 117. 5. Report circulated to members of the American Society of Hospital Social Work Directors on questionnaire responses from 359 members concerning hospital programs and staffing, Leone Renn, chairman, December 1969. 6. Ibid, p. 2. 7. Abraham Lurie, “Staffing Patterns: Issues and Program Implications for Health Care Agencies,” Social Work in Health Care 2, no. 1 (Fall 1976): 85-94. 8. Social Work in Hospitals, p. 84. 9. See Barbara Berkman and Helen Rehr, “Unanticipated Consequences of the Casefinding System in Hospital Social Work,” Social Work 15 (April 1970): 63-68; Barbara Berkman and Helen Rehr, “Early Social Service Casefinding for Hospitalized Patients: An Experiment,” in Social Service

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Review 47 (June 1973): 256-265; Barbara Gorden and Helen Rehr, “Selectivity Biases in Delivery of Hospital Social Services,” Social Service Review 43 (March 1969): 35-41. 10. Gorden and Rehr, “Selectivity Biases in Delivery of Hospital Social Services,” p. 41. 11. Hyman J. Weiner, “The Workshop on Administration,” in Social Services in Pediatric Hospitals, ed. Mary M. Lewis (Indianapolis, Ind.: The James Whitcomb Riley Hospital for Children; and Rockville, Md.: Maternal and Child Health Services, Public Health Service, Department of Health, Education and Welfare, 1972). 12. William E. Gordon, “The Challenge of Research to Today’s Medical Social Worker,” Social Worker 1 (January 1956): 81-87. 13. Ibid., p. 85. 14. Harriett Bartlett, “Frontiers of Medical Social Work,” Social Work 7 (April 1962): 75-83. 15. Alice Ullmann, Mary M. Goss, Milton S. Davis, and Margaret Mushinski, “Activities, Satisfaction, and Problems of Social Workers in Hospital Settings,” Social Service Review 45 (March 1971): 17-29. 16. Ibid., p. 27.

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Initiation of a Quality Assurance Program for Social Work Practice in a Teaching Hospital Kris Ferguson, ACSW M. Leora Bowden, ACSW Donna Lachniet, ACSW Anne Malcolm, BA Gladys Morgan, MSW At the time of writing the authors were employed in the Social Work Department of the University of Michigan Medical Center. SUMMARY. This first-stage paper describes the steps taken in implementing a quality assurance program. The rationale for writing social work protocols based on medical diagnosis or tasks rather than on psychosocial diagnosis is explained in detail. Protocols for adult rheumatoid arthritis, pediatric cancer, adult discharge planning, and adult nursing home placement are included to demonstrate the result of the medical diagnosis/task approach. One critical issue in the field of social work is accountability. This issue has become particularly relevant because Professional Standards Review Organization (PSRO)

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legislation has raised difficult questions, such as to whom and for what social workers will be held accountable. These need to be addressed. Although much has been written about the general issues related to peer review, such as the nature of the legislation and the impact of medical PSROs on hospital practice,1 the profession of social work is just beginning the process of implementing peer review. Chernesky and Lurie2 describe one aspect of quality assurance, assessing time spent in direct client versus nonclient activity. A description of one phase of peer review, that of establishing standards to define quality social work practice, is the focus of this first-stage paper. A follow-up paper on the results of this type of program will be presented 1 year following its implementation.

The Setting The Department of Social Work of the University of Michigan Medical Center employs 66 social workers in its various clinical units. The medical social work division, from which the current materials have generated, consists of 24 master’s degree level and 5 bachelor’s degree level staff. Staff assignments are made according to medical service and/or geographic units within the hospital and may involve both inpatient and outpatient responsibilities. The initial work in the Quality Assurance Program was coordinated by a five-member committee comprised of one

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chief social worker, one bachelor’s degree level social worker, and three master’s degree level social workers. The committee’s tasks included assuming a primary role in establishing a quality assurance program, obtaining input from all staff members regarding the essential components of such a program, and serving for 1 year as the coordinators of review activities.

Purpose and Philosophy The primary purpose of a quality assurance program is to devise the means for monitoring the quality and consistency of social work services in a way that demonstrates to any reviewer the effective delivery of service. In the process of designing such a program, several serendipitous outcomes of quality assurance were discovered. In addition to monitoring delivery of service, quality assurance can also include: collecting information about staff development needs and recommending programs for meeting those needs; compiling detailed written descriptions of social work activity in various medical services for students and new workers; and using written material to describe social work practice to physicians and other allied health professionals. Once the objectives for quality assurance have been established, the next step is identifying a system that can provide the information necessary to measure achievement of objectives. The decision to establish standards by medical diagnosis and tasks was made for several reasons. First, social work standards could then parallel programs being

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established by the medical profession in this center as well as in other medical settings. Second, specificity and uniformity are more attainable when medical diagnosis or actual task is used. Third, standards for practice should reflect the uniqueness of social work practice in hospitals. And finally, the staffing pattern of the department facilitated the medical diagnosis/task approach.

Parallel Medical Review Since the medical profession is establishing its standards based on medical diagnosis, and because the future goal of PSRO legislation is for medicine and allied health professionals to conduct interdisciplinary reviews, it follows that social work should anticipate merging with medical reviews and establish standards that will facilitate that process. For example, a medical protocol for breast cancer might include referral to social work as one component of service delivery for quality care. If specific social work standards for care of patients with breast cancer are already established, information for an interdisciplinary review can be easily retrieved and understood by disciplines other than social work.

Specificity of Diagnosis Approach The more specific protocols are, the easier it is to achieve consistency in practice. The committee decided it was possible to be more specific in using diagnostic and task-centered categories than psychosocial diagnostic categories that might cross multiple medical diagnoses.

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For example, if a diagnosis such as “adjustment to illness and disability”3 is established, the intervention of a social worker dealing with the family of a child with cancer would differ significantly from the intervention of a social worker dealing with an adult with rheumatoid arthritis. Operating from the diagnostic perspective, workers at this center were able to be very specific about what information needed to be obtained and what behaviors the individual or family engaged in that would indicate “adjustment to illness and disability,” thus outlining specific measurable behaviors and eliminating some of the subjectivity inherent in assessing adjustment to illness or disability.

Uniqueness of Social Work in Hospitals By defining standards according to medical diagnosis, recognition is given to the unique requirements of individuals affected by illness or injury. This then legitimizes the specialization of social work in medical settings and emphasizes the special knowledge required in dealing with patients and families around the stress or crisis precipitated by medical problems, injury, or disease. In her description of crisis theory Rappaport4 has indicated the need to identify specific events that a person or family needs to master in order to deal with stressful events successfully. The crisis event of a premature birth and the steps necessary to deal with it are described in detail by Kaplan.5 Since social workers who work with specific disease categories are usually aware of what the patient and family 839

need to master in order to deal successfully with the illness or injury, the logical next step in quality assurance is to identify social work tasks that facilitate mastery of illness or injury and to set standards accordingly.

Staffing Pattern Consideration of the setting also contributed to the decision to establish standards by diagnosis or task. Workers are assigned to medical services and work with patients and families that have a range of diagnoses within that medical specialty or subspecialty. Since each worker was asked to establish standards for his or her own practice, and since most activity is centered around a diagnosis or specific task, establishing standards on that basis seemed reasonable.

Task Protocols While the disease/disability categories worked best for most services, there were certain situations in which this system was not appropriate, specifically when activity was primarily task oriented. For example, assisting with discharge planning and nursing home placement is consistent regardless of the patient’s diagnosis or medical service.6 In those circumstances, then, protocols were established according to the task rather than by diagnosis. Although task protocols apply more to bachelor’s degree level workers than MSW personnel, all protocols are intended to be used by staff at both levels. For example, nursing home placements should be done consistently throughout the department.

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Implementation In order to implement the program, full participation of social work staff was essential. Throughout the process staff input has been requested and incorporated into the program. Once the committee presented and discussed the proposal of diagnosis and task protocols, individual workers were asked to write a protocol describing quality practice for the diagnosis or task they encountered most frequently. Since the intent of peer review is to assure the overall quality of service, initially it is necessary to establish standards only for the most common social work activities. The written protocols were then reviewed by the Quality Assurance Committee, and recommendations were made for revisions. Based on the information obtained by reviewing these initial protocols, a standard format for outlining necessary information, the process for gathering information, and the process of service delivery was established. Information to be included was to be organized as follows: (a) criteria for referral to social work; (b) protocol for social work intervention (subheadings of assessment, goal setting, implementation of plan, recording); (c) unexpected complications; and (d) criteria for termination. As mentioned earlier, different diagnoses necessitate different types and levels of assessment. Specifying this information sets objective criteria that help determine the validity and comprehensiveness of social work objectives. The decision to omit outcome criteria as part of the initial protocols was made primarily because including them made

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the task too overwhelming. As Levy7 points out, there are many extraneous variables that limit social work’s ability to predict consistent outcome accurately. It also may be possible to obtain more meaningful data for outcome criteria through the initial review process rather than in advance, so inclusion of outcome criteria has been postponed. As a final step in establishing a quality assurance program, the committee has completed reviewing the final drafts of most protocols. Those that have been reviewed by the committee, with the author present, and submitted to social work administration include: breast cancer, suspected child abuse, childhood seizure disorder, failure to thrive, respiratory distress, obesity, adult nursing home placement, pediatric nursing home placement, adult discharge planning, childhood cancer, adult rheumatoid arthritis, juvenile rheumatoid arthritis, cystic fibrosis, migraine headaches, leukemia, and terminal cancer in adults. Four examples appear as appendices. Those yet to be reviewed include: adolescent pregnancy, burns, renal disease, and quadriplegia.

Review Process Although the final audit procedure has not yet been determined, actual review will involve all members of the department at some time during the year. As mentioned earlier, because of the specificity of protocols, each worker should be able to review any other worker, regardless of educational background or experience. In the actual review, the Quality Assurance Committee will set up task forces comprised of three or four social workers.

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In keeping with the interdisciplinary intent of the PSRO law, representatives from other allied health disciplines may be invited to participate. For example, if the physician, physical therapist, occupational therapist, and social worker all work closely together with spinal cord patients, then it would be appropriate for all of them to conduct an interdisciplinary review of that diagnosis. If physicians will be expected to have allied health personnel included in their PSROs, then allied health personnel will be expected to cooperate with physicians and each other in monitoring overall quality of health care. Once each task force appointed by the committee has completed review of one diagnosis or task, it will disband. Each year new groups will be established to equalize the responsibility for review activities. The committee has elected to have social workers do the initial reviews, rather than Medical Records personnel, because we believe the process itself will have educational value. Medical Records personnel will be involved in obtaining records and consulting about process, but will not be responsible for actual reviews. In the future, after the reviews have been done several times, it may be possible to have Medical Records personnel pull charts and quantify discrepancies which the Social Work Department could then review. At the present time, the system has not been refined enough to permit delegation of that responsibility, nor is such delegation required.

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Feedback Once cases for review have been retrieved by Medical Records, each task force will take the protocol assigned and compare it to social work recording on the charts. Discrepancies will then be summarized and shared with the worker whose charts are being reviewed. After review by social work administration, recommendations for change in the protocol or in actual social work activity will be made. At the conclusion of that review we will have a better idea of how the system works and what its value is to the department.

Evaluanon Because the concepts of quality assurance as described are as yet untested, there is no way to predict how this system will work in this particular setting or in any other institution. The entire process thus far has been a learning experience. The members of our department have learned new practice techniques as a result of discovering what other staff members are doing. We have also found that it is possible to describe our practice in terms of stated objectives and achievement of those objectives, and that by doing so practice can be improved. The purpose of this paper has been to share the thinking that went into one way of establishing a quality assurance program. Its success in the setting described and its applicability to other settings have yet to be tested. It may be that what works in a large referral center cannot work in a small community hospital, but it is also possible that the

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principle of combining diagnostic categories could be relevant in institutions in which strokes, mastectomies, and nursing home placements are more common than childhood cancer or rheumatoid arthritis.

Conclusion The University of Michigan Medical Center Social Work Department is in the process of establishing a quality assurance program based on actual quality of service delivered to complement existing administrative review. The system utilizes both diagnostic categories and task categories, since using one or the other does not adequately cover all activities of the department. The entire Social Work Department will be involved in establishing standards for practice. The format for establishing protocols is the same throughout the department and specificity in assessment and goal setting has been requested. Standards will be applied to only those cases opened after standards have been approved. The intent of review is to give peers responsibility for assessing their own practice. Social workers can no longer argue about the merits of peer review but should begin to develop objective measures of quality practice. This is a challenge but the potential rewards are great. Instead of being told by others what social work in hospitals should be, the profession can demonstrate in a positive way the value of social work intervention.

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References 1. Newman, Edward, and Turem, Jerry. “The Crisis of Accountability.” Social Work 19 (1974):5-16. 2. Chemesky, Roslyn H., and Lurie, Abraham. “The Functional Analysis Study: A First Step in Quality Assurance.” Social Work in Health Care 1 (1975-76):213-23. 3. Meites, Mable E. ‘One Adaptation of Social Work to A Peer Review System.” PSRO Workshop Papers, E. W. Sparrow Hospital, Lansing, Michigan, February 1976. 4. Rappaport, Lydia. “Crisis Intervention as a Mode of Brief Treatment.” In Theories of Social Casework, edited by Robert W. Roberts and Robert H. Nee. Chicago: University of Chicago Press, 1969. 5. Kaplan, David M. “Problem Conception and Planned Intervention.” In ‘Health and Disability Concepts in Social Work Education. Minneapolis: Vocational Rehabilitation Administration of the Department of Health, Education, and Welfare, 1964. 6. Kerstein, Jerrold. Research Studies I through V and Narrative Article. PSRO Publication, National Association of Social Workers, August 1975. 7. Levy, Charles S. “Inputs versus Outputs as Criteria of Competence.” Social Casework 55 (1974):375-80.

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Appendix A Protocol for Arthritis

Adult

Rheumatoid

1. Criteria for referral to social worker (one of the following is sufficient justification for referral) 1. Patient in need of additional community resources, including medical assistance, financial assistance, follow-up counseling 2. Patient and/or family having difficulty understanding disease and treatment, with resultant lack of adherence to treatment program 3. Patient and/or family requests contact with social worker 4. Patient having personal or interpersonal problems that interfere with treatment of disease 5. Patient having difficulty adjusting to disease symptomatology, including pain, fatigue, decreasing mobility 6. Patient having functional pain 2. Protocol 1. Assessment 1. Description of patient, disease, length of time patient has had disease, general condition, prognosis, other illnesses

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2. Patient’s general attitude about and adjustment to disease, that is, denying, accepting, depressed 3. Patient’s family composition, response to disease, employment status of household members, health of family members, financial constraints, division of labor at home 4. Patient’s employment status, potential for employability, and desire to work 5. Patient and family’s usual response to pain and stress 2. Goal setting 1. List of problems as seen by patient, family, physician, and other staff 2. Goals established with patient and relevant staff 3. Implementation of plan 1. Make recommendations to patient regarding appropriate community resources 2. Reinforce medical information and need for particular treatment with follow-up on questions. Refer to other medical personnel when appropriate 3. Provide counseling to patient and/or family members or refer to community agency when family

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lives too far away or clinic visits are infrequent 4. Recording 1. Summary of assessment and treatment plan in chart 2. Progress toward goals noted in chart 3. Documentation of recommendations to patient regarding community resources in chart 3. Unexpected complications 1. Patient’s refusal of service 2. Patient discharged prior to being seen by social worker 4. Criteria for termination 1. Cases will be terminated when goals have been reached or 2. When it appears that goals cannot be achieved

Appendix B Protocol for Pediatric Cancer 1. Criteria for referral to social worker (one of the following is sufficient justification for referral) 1. Parental interest expressed in extended discussions on how to cope with their child’s illness 2. Problems in the family’s social or economic situation requiring special planning 849

3.

4. 5.

6. 7. 8.

9.

(examples: parents not being United States citizens, patient being court ward, another handicapped child in the family, extended unemployment of breadwinners) Unusual and unabating expressions of anxiety, depression, or fear on the part of either parent or the child that may show themselves in behavior disruptive to patient unit Conflict between parents regarding illness (example: what to tell patient or significant others about the illness) Parental delay or reluctance in accepting medical treatment program for child that extends beyond 1 week after presentation of a treatment plan Social isolation of family—that is, no close relatives, neighbors, friends, or church contacts Preexisting mental illness, substance abuse, or chronic illness in any of the child’s caretakers Lack of adherence to recommended treatment, including pattern of missed appointments, suspicion that drugs are not given as prescribed despite adequate education Pattern of minimal visiting by family of inpatient (once a week or less with children 12 and under) or prolonged absence of either parent if still part of nuclear family

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10. Parents are increasing child’s anxiety by inappropriate information sharing or their own maladaptive behavior 2. Protocol for social work intervention 1. Assessment 1. Process • a) Review medical chart • b) Clarify extent of parental information and stage of medical planning through discussion with house staff and appropriate specialty service (pediatric hematology, neurosurgery, orthopedic surgery, thoracic surgery, etc.) • c) Initiate contact with at least one parent/caretaker of the child to establish mutual problem definition and contract 2. Information to be obtained about • a) Adequacy of family’s medical information • b) Adequacy of resources, both financial and emotional • c) Adjustment to diagnosis and treatment up until time of social work assessment • d) Previous adjustment to stresses • e) Child’s role within the family before illness 851

• f) Level of social and emotional functioning prior to diagnosis including marital relationship, family composition, life-style, level of physical activity of patient • g) Extended family’s and community’s response to the diagnosis • h) Parent’s attitudes toward physicians and “experimental” treatment for terminal illness 2. Goal setting 1. Define initial goals with caretakers, staff, and social worker within 1 week of receiving referral 2. Redefine goals as problems are resolved and new critical events present themselves (such as relapse, tumor recurrence, recall for additional therapy, unexpected complications from treatment, impending death) 3. Implementation of plan 1. Engage in brief intermittent or ongoing treatment with family members needing assistance 2. Identify appropriate community agency when local intervention is required (obtaining releases for information sharing) 852

3. Inform appropriate local agencies (including school, DSS, LMD) of availability for ongoing consultation when patient is followed jointly 4. Arrange and lead team discussions with appropriate hospital staff when medical record is insufficient for information sharing and good parent/ family care 4. Recording 1. Summary of assessment and treatment plan in medical chart 2. Progress toward goals or resolution of major problem noted in medical chart 3. Documentation of recommendations made to patient regarding community resources (including names of agencies, name of contact person, address, phone numbers) 3. Unexpected complications 1. Parent’s refusal of service 2. Patient withdrawn from medical treatment 3. Family crisis occurs (another serious illness, divorce, death, layoff) 4. Lack of community resources 4. Criteria for termination 1. Medical treatment transferred elsewhere 2. Parents refuse social work service 3. Goals achieved and family appears stable with coping skills intact 4. Patient is in long-term remission 5. Goals cannot be achieved 853

6. Above recording is complete

Appendix C Protocol for Planning*

Adult

Discharge

1. Criteria for referral 1. Patient or family unable to state or complete feasible discharge plans 2. Significant personal care or nursing care needs identified that require investigation prior to discharge 3. Patient’s behavior or care at home prior to admission causally related to medical problems or need for admission 4. Patient’s mental limitations preclude his planning living arrangements after discharge 5. Patient or family identifies problems to hospital staff regarding patient’s return to community, such as housing, finances, care arrangements, and social isolation, which cannot be handled exclusively by the home care coordinator** 6. Evidence of conflict between patient and the family to which he plans to return that may interfere with discharge planning or medical follow-up 7. No family member available to assist patient in completing plans

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8. Need for assisting family to make transportation arrangements to leave hospital and/or keep return clinic appointments 2. Protocol for social work intervention 1. Assessment 1. Process • a) Review patient’s chart • b) Obtain information from physician and relevant staff • c) Interview patient and family 2. Information to be obtained about • a) Level of self-care and nursing needs • b) Problems precipitating referral • c) Anticipated discharge date and confirmation that patient and/or family have been informed of discharge date and plans • d) Patient’s prior living arrangements and life-style • e) Adequacy of family’s ability to care for patient and commitment to caring for patient • f) Financial resources • g) Available community resources

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• h) Patient and family’s understanding of medical problems, nursing needs, and their ability to plan adequately • i) Patient and family’s existing posthospital plan and adequacy of that plan 2. Goal setting 1. Major problems needing resolution specifically identified and discussed with family, hospital, and involved agencies 2. Discharge objectives identified and discussed with patient, family, agencies, and hospital staff 3. Implementation of plan 1. Assist patient/family in evaluating the feasibility of their posthospital plans 2. Assist family in determining whether they can meet the patient’s physical, emotional, and nursing needs. If not, discuss alternatives such as obtaining needed equipment and making modifications in living arrangements or placement in a nursing care facility. (See Appendix D, Protocol for Adult Nursing Home Placement.) If necessary, contact physician for referral to home care 856

coordinator for provision of home nursing services or referral to Vocational Rehabilitation for modification of home situation 3. Instruct patient and family regarding application for financial benefits to which they may be entitled 4. Assist patient and family to plan and accommodate to needed changes in their roles in the family and community 5. Determine with patient and family their transportation plans for discharge and follow-up appointments. Make tangible arrangements if family cannot 4. Recording 1. Summary of assessment and plan in medical chart 2. Progress toward goals or resolution of major problem(s) noted in medical chart 3. Documentation in chart of recommendations made to patient or family regarding community resources (including names of agencies, name of contact person, addresses, phone numbers) 3. Unexpected complications 1. Family uncooperative in making plans or resistant to discharge 857

2. Family difficult to contact for necessary interviews 3. Medical change in patient that alters previous plan 4. Patient/family refuses social work service 4. Criteria for termination 1. Assessment of patient and family reveals that they are able to plan adequately or have already planned for discharge without assistance 2. Discharge plans successfully completed and/ or patient discharged

Appendix D Protocol for Adult Nursing Home Placement 1. Criterion for referral 1. Placement in an extended care facility identified as most appropriate discharge plan by staff, family, and/or patient. Social work protocol for discharge planning to be used for initial assessment and determination of plan (Appendix C) 2. Protocol for social work intervention 1. Assessment 1. Process • a) Review medical chart

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• b) Contact referring physician to determine family and patient’s knowledge and understanding of medical conditions necessitating transfer to a nursing care facility • c) Interview patient and family 2. Information to be obtained • a) Medical chart, medical and nursing staff • (1) Medical diagnosis and prognosis • (2) Anticipated discharge date • (3) Level of nursing care required (e.g., skilled or basic, ambulation status, mental status, hygiene requirements) • (4) Medications • (5) Mode of transportation • (6) Extent of medical follow-up expected by this institution 859

• b) Family and patient • (1) Understanding of medical condition, recommended care plan • (2) Ability to plan adequately • (3) Patient and family’s attitude about and adjustment to diagnosis, prognosis, and need for extended care • (4) Adequacy of financial resources and coverage for extended care • (5) Any preference regarding particular facilities • (6) County in which patient resides 2. Goal setting 1. Nursing home placement identified as mutually accepted goal by patient, family, social worker, and medical staff 2. Tasks for completion of arrangements identified and

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discussed with patient, family, and medical staff 3. Date of transfer set after consultation with physician, patient, family, and nursing care facility 4. Redefine goals or reset transfer date due to • a) Change in medical status • b) Lack of beds in chosen facility • c) Lack of cooperation and participation by involved parties 3. Implementation 1. Obtain authorization for release of information from patient and/or family 2. Counsel patient and/or family regarding adjustment to illness, change in life-style, and long-term care 3. Contact significant community agencies currently involved with patient and/or family for explanation of patient’s needs, anticipated plans, and information sharing 4. Place patient transfer form on chart for completion by medical staff 5. Determine which available nursing care facilities in patient’s county meet care requirements

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6. Provide explanation of extended care coverage to patient and family • a) If insurance is inadequate, instruct family regarding application for medical assistance (Medicaid) at the Department of Social Services in county of nursing care facility • b) Have public health form R-19 completed by physician or nurse and sent to state agency for determination of level of care when coverage is provided through Medicaid 7. Assist family in determining selection criteria for choosing a facility 8. Have family and patient, if possible, contact and visit facility for approval 9. Contact nursing care facility chosen to provide relevant information 10. Confirm with medical staff, family, nursing care facility, and ambulance service appropriate transportation arrangements 11. Send with patient • a) Transfer form • b) Recent chest X-ray report • c) Discharge summary (if required) 862

• d) Other medical information requested by facility 12. Refer to appropriate community agency when counseling or ongoing contacts are needed 4. Recording 1. Note in progress notes of patient’s medical chart social work involvement within 24 hours of receipt of referral and/or request for assistance 2. Record relevant assessment data and plans in medical chart, and progression of these plans with explanation of any unexpected complications that may delay disposition 3. Final recording to include • a) Name, address, and telephone number of nursing care facility • b) Financial coverage • c) Key resource person within client system • d) Transfer date and transportation arrangements • e) Medical information required from staff upon transfer

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3. Unexpected complications 1. Change in medical condition 2. No beds available in nursing care facility (which may result in an unavoidable extension of patient’s hospitalization) 3. No family member to assist with transfer or family refusal to participate in arrangements 4. Patient and/or family refusal of social work services 5. Lack of insurance coverage 4. Criteria for termination 1. Successful transfer to nursing care facility 2. Successful completion of alternative discharge plans (see Appendix C, Protocol for Adult Discharge Planning) 3. Withdrawal of request for social work assistance 4. Death of patient

Notes Reprinted from Social Work in Health Care, Volume 2(2), Winter 1976-77. * Submitted by John Suttinger, ACSW. ** Home care coordinators are part of the nursing staff and are primarily responsible for visiting nurse and public health referrals.

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Clinical Social Work with Young Adult Inpatients: Perspectives of Patients, Parents, and Clinicians Mollie C. Grob, MSW, ACSW Susan V. Eisen, PhD Golda M. Edinburg, MSW, ACSW At the time of writing Mrs. Grob was Director of the Evaluative Service Unit, McLean Hospital, 115 Mill Street, Belmont, MA 02178. Dr. Eisen was Coordinator of Patient Care Evaluation in the Evaluative Service Unit and Ms. Edinburg was Director of Social Work, McLean Hospital. SUMMARY. This article describes an empirical study designed to identify the unique role of the clinical social worker as a member of the hospital team in the treatment of young adult psychiatric inpatients. Fifty-five patients, their parents and social workers were interviewed at admission and 60 days later to ascertain: (1) initial attitudes and expectations regarding social work services, (2) specific services desired by clients, (3) actual services provided, and (4) helpfulness of the services. Results indicated that the services most frequently desired were those most often provided. These included providing information to families about patients’ progress, helping families deal with hospital procedures and

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helping with aftercare planning. Most services provided were viewed as helpful. Social workers were seen as more helpful to families than to patients and more so by parents than by patients. Clients who felt the social worker understood their needs and was available when needed, felt he/she was more helpful to them. The implications of these findings for definition of the social worker’s role are discussed. An ongoing debate taking place among our colleagues today concerns the unique focus of clinical social work intervention. This dialogue is a healthy indication of the continuing effort within the social work profession to reaffirm basic values with respect to its historic role and evolution in response to social, economic and cultural needs (Goldstein, 1980; Meyer, 1979; Weick, 1981). In the past role definition has been primarily conceptualized by the professional as part of his/her theoretical sophistication and practice. More recently its exploration has been pursued with the use of a more empirical approach. Beginning steps are being taken to include participants in the treatment process as collaborators in this endeavor; for example, the consumer who is central to the process and the ultimate determinant of outcome (Warfel, Maloney & Blase, 1981). That consumerism in social work practice can embrace families as well as the identified client or patient expands the potential value of an empirically based approach to role definition by utilizing multiple sources of information. With this orientation McLean Hospital and the Simmons College School of Social Work undertook an investigation of the role of the social worker from the joint perspective of patients, families, and clinical social workers.1 866

Among the questions to be answered by our study were the following: 1. What concept of the social worker’s role is implied in the services desired by patients and their families? 2. What are the actual services provided and views of the social worker’s helpfulness? 3. What factors influence views of helpfulness, e.g., initial reactions to the social worker, earlier experiences, patient’s outcome? 4. What are the implications of these findings for definition of the social worker’s role?

Method Treatment Setting At McLean Hospital, a private psychiatric hospital with 280 beds and 17 inpatient units, social work intervention for patients and families is recognized as a method for facilitating successful coping of families and enabling the identified patient to improve optimally. The critical assumption behind this viewpoint is that most families need help in dealing with the crisis of mental illness and the hospitalization experience. At or about the time of admission, patients and their families are routinely provided with a social work evaluation and treatment plan by the social worker on the unit to which the patient is assigned. The extent to which the social worker is actively involved varies; families are usually seen by appointment on a regular basis, and patients also by formal agreement or informally on the hall. Within the hospital 867

setting, the social worker is a member of the treatment team, and his/her functions vary according to differences in philosophy, treatment style, and patient population. These may include supportive case work, individual group, marital or family therapy.

Sample The sample consisted of consecutive admissions to the adult service of unmarried adolescents and young adults ages 14 to 23 (N = 55). Young, single patients were chosen to provide a homogeneous sample of patients and family members receiving social work services. Almost 70 were 19 years of age or under; more than two-thirds were male. All but five were living with their parents at the time of the admission; the rest were in school dormitories. Almost three-quarters were from two-parent families, the rest, single-parent families. The most common admitting diagnoses were schizophrenia (35%), personality disorder (27%), and transient situational disorder (20%). Approximately one-third had not experienced a previous psychiatric hospitalization; another one-third had three or more. The median duration of the current McLean hospitalization was 58 days.

Procedure Data collection involved the use of structured interviews administered separately to patients, their mothers and fathers one to two weeks after admission and again at discharge, or two months after admission, whichever came first. Patient and

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family interviews were completed in person or by telephone by social work graduate students who had no clinical involvement with the informants. The McLean Hospital clinical social workers assigned to each case participated in the data collection by completing mailed questionnaires parallel in content to the interviews administered to the patients and their parents. At the initial interview all informants were asked a number of specific questions to identify their views about the type and extent of social work involvement desired. In addition, patients and parents were asked to assess their understanding of the social work role in the hospital and their expectations as to whether or not social work services would be helpful to them. Also included were questions about prior experience and satisfaction with social work intervention and initial reactions to the current social worker. The later interview reviewed the extent of contact and type of services actually received. Patients and parents were also asked to assess the helpfulness of each specific service and the overall helpfulness of the intervention.

Results A total of 377 interviews were conducted, yielding an overall response rate of 86%, with all categories of informants well represented (six fathers and one mother were not available due to death/divorce/separation). Seventy percent of the patients and parents had met their social worker at the time of the admission, the rest shortly thereafter. Included among those who did not see a social

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worker at admission were readmitted patients. Plans were made for regularly scheduled appointments with almost all of the parents (91%) and about one-half of the patients (46%), with the rest to be seen on an informal basis as needed. A majority of all the respondents reported that they found these arrangements satisfactory. In the initial interview, a greater proportion of mothers than fathers or patients reported that they understood the role of the social worker, that a social worker might be helpful, and that the social worker understood their needs (see Table 1). Patients and fathers were more skeptical, particularly in response to the question, “Do you think the social worker understands your needs?” Less affirmative responses reflected uncertainty rather than negativity (only 11% of responses across all informants were unfavorable). Fourteen areas of service to patients and families had been identified by the social work department prior to the investigation as relevant for social work intervention. In most of these areas the social worker functioned as a liaison between patients and their parents or between the hospital and the family. Nine services focused exclusively on work with family only; two involved patients and their families; three patients alone. When asked to indicate which of these services they would like to receive, more than one-half of the informants wanted 12 of the 14 services (Table 2). Least desired services were help with resolution of parents’ marital problems (36%) and with other family problems (50%). Thus, while services for the family were clearly indicated,

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Table 1 Percentane of Informants with Favorable Initial Views of the Social Worker Informant Category Mother Father Patient

Area of Inquiry Do you understand the social worker’s role? Do you think social worker might be helpful? Does social worker understand your needs?

94%

79% 75%

75%

63% 61%

65%

53% 40%

Table 2 Extent to Which Specific Social Work Services Were Desired

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the areas of intervention focused on those relating to the patient’s illness. When we examined the informant’s view at the later interview of actual services provided, those most frequently desired were also most frequently provided; similarly, those least frequently wanted were least frequently provided. The highest agreement between social workers and all informants about services provided was in the area of (1) informing

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family about patient’s progress and (2) helping with aftercare planning. Very high agreement between social workers and other informants also occurred regarding help in resolving marital issues; they agreed that it was not provided. Least agreement was reported in the area of helping the patient deal with hospital procedures; ambiguity seems to be greater here. Across respondents, most specific services received were judged to be “quite” helpful, although patients generally felt the services were less helpful than did either fathers or mothers. Social workers were seen as more helpful to families than to patients by all family members; parents were more favorable in their ratings of the social worker’s general helpfulness (to both patients and families) than were patients (see Table 3). Table 3 Mean Ratings of General Helpfulness of Social Worker Respondent Helpfulness to Patient Helpfulness to Family Patient Mother Father

3.25* 2.84 2.68

2.92 2.43 2.42

* Scale: 1 = extremely, 2 = quite, 3 = moderately, 4 a somewhat, 5 = not at all The majority of patients and parents agreed that the social worker had been available to them when needed; similarly, they agreed that the social worker “understood their needs.” Perceptions of the social worker’s understanding of the clients’ needs were usually related to personal qualities

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(“sensitive and likable” — “listens well and is available” — “insightful, understanding”) or to skills and activities (“tried hard to find solutions”—“goes to morning report and talks with the doctors” — “helpful in trying to figure out our individual needs” — “listens to our complaints” — “thorough and knowledgeable”). A central theme that emerged in this view of the social worker was that of provider and coordinator of social services for the patient and the family. Frequently when family members reported dissatisfaction with the social worker, there were expressions of dissatisfaction with the hospital system in general.

Factors Influencing Satisfaction A question often raised relates to the identification of factors that influence consumer satisfaction. With this objective, we examined the relationship between a number of variables and views of the social workers’ helpfulness. In the initial interview, the social workers’ understanding of the clients’ needs was significantly related to later views of helpfulness (p < .01). Clients who felt the social worker understood their needs within two weeks of their first meeting, judged them as more helpful two months later. Ratings of helpfulness were significantly correlated with social worker’s availability and understanding of needs at the later interview as well. Social workers who were available when needed and who understood their clients’ needs during the course of hospitalization were seen as more helpful (p < .01). By contrast, the extent of intervention, hospital length of stay, and clinical outcome were not related to views regarding the social workers’ helpfulness.

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Summary and Discussion This report presents the results of an investigation exploring the role of the clinical social worker with young adult inpatients and their parents. With the increase in the number of young people seeking or requiring psychiatric hospitalization in the last two decades, services were created to meet their special needs. A number of investigators have reviewed the hospital experiences and follow-up outcome of this population with some attention to the characteristics and involvement of their families, yet relatively little has been reported on the process and effectiveness of the social work intervention carried out in their behalf (Garber, 1972; Gossett, Lewis, Lewis & Phillips, 1973; Grob & Singer, 1974; Hartmann, Glasser, Greenblatt, Solomon & Levinson, 1978). Our study provides an empirical view of the social worker’s role from the perspective of patients, parents and the professionals. The young adult sample was predominantly male with schizophrenia or personality disorder as the more common diagnosis. Among the priorities identified for social work activities were helping the family deal with issues around the hospitalization and the patient’s illness, helping the family understand the patient, and relieving family stress. The major focus in expectations about service was on work with the family with the basic need relating to aspects of the patient’s illness. The burdens placed on families of the mentally ill and the need for further efforts on their behalf have been highlighted elsewhere as well (Hatfield, 1978; Kreisman & Joy, 1974).

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Hartman (1981), recognizing the potential of families, urges that the delivery of services be carried out to strengthen rather than to undermine the families. Reporting on family intervention with severely disturbed inpatients, Anderson (1977) emphasizes the importance of a patient-oriented family approach, the goal being to reduce family stress and enhance the patient’s potential for achieving the treatment goals. One of the mothers interviewed in our study expressed this idea in personal terms, “The social worker was extremely helpful to me so that I in turn could be more helpful to my daughter.” Respondents also gave priority at the initial timepoint to aftercare planning as a major aspect of the social work role. This finding echoes Adelson and Leader’s (1980) conclusion regarding its significance following a recent survey of 26 private psychiatric hospitals in which social work directors were asked to identify the relative importance of various professional duties. In their words, “Social work has always represented the link between the patient and the community in the broadest sense” (p. 780). By an examination of the relationship among variables, some indicators were identified that might be influencing client satisfaction (here derived from the rating of helpfulness). The social worker seen as more accessible during the intervention was viewed as more helpful. In addition, how well the social worker understood the client’s needs was predictive. This correlation between the perceptions of understanding of the client’s needs and of the professional’s helpfulness may derive from an underlying process centering on the quality of their relationship. Additional data from the study describing the social worker’s 876

attributes further serve to strengthen the idea that the ability to form an alliance is a key factor in the success of the social work intervention. Increasing recognition is being given to the rights of the client to be involved in decision making and evaluation of treatment modes and outcome (Maluccio, 1979; Prager & Tanaka, 1980). The inclusion of patients and families enhances our ability to broaden the empirical base of our understanding of the intervention. With this in mind the goal of a true collaboration between the social worker and the client in the planning and delivery of service may yet become a reality.

Notes 1 Preliminary data have been included in Beck et al., An Evaluation of the Delivery of Social Work Services to Young Adult Psychiatric Patients and Their Families: Part 1, 1978, and Ashley et al., Part II, 1979. Unpublished masters dissertations, Simmons College School of Social Work. The authors wish to acknowledge the enthusiasm and support of Dr. Helen Reinherz, Chairperson, Research Department, Simmons College School of Social Work and the second-year graduate students who participated in the project. Reprinted from Social Work in Health Care, Volume 8(2), Winter 1982.

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References Adelson, G. & Leader, M. The social worker’s role: A study of private and voluntary hospitals. Hospital and Community Psychiatry, 1980, 31, 776-780. Anderson, C. Family intervention with severely disturbed inpatients. Archives of General Psychiatry, 1977, 34, 697-702. Garber, B. Follow-up study of hospitalized adolescents. New York: Brunner/Mazel, 1972. Goldstein, E.G. Knowledge base of clinical social work. Social Work, 1980, 25, 73-178. Gossett, J., Lewis, S., Lewis, J., & Phillips, V. Follow-up of adolescents treated in a psychiatric hospital: A review of studies. American Journal of Orthopsychiatry, 1973, 43, 602-610. Grob, M.C. & Singer, J. Adolescent patients in transition: Impact and outcome of psychiatric hospitalization. New York: Human Services Press, 1974. Hartman, A. The family: A central focus for practice. Social Work, 1981, 26, 7-13. Hartmann, E., Glasser, B., Greenblatt, M., Solomon, M.H., & Levinson, D.J. Adolescents in a mental hospital. New York: Grune and Stratton, Inc., 1978, 197 pp.

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Hatfield, A. Psychological costs of schizophrenia in the family. Social Work, 1978, 23, 355-359. Kreisman, D. & Joy, V. Family response to the mental illness of a relative: A review of the literature. Schizophrenia Bulletin, 1974, 10, 34-57. Maluccio, A. Learning from clients: Interpersonal helping as viewed by clients and social workers. New York: Free Press, 1979. Meyer, C.H. What directions for social work practice? Social Work, 1979, 24, 267-272. Prager, E. & Tanaka, H. Self-assessment: The client’s perspective. Social Work, 1980,25, 32-34. Warfel, D.J., Maloney, D.M., & Blase, K. Consumer feedback in human service programs. Social Work, 1981, 26, 151-156. Weick, A. Reframing the person-in-environment perspective. Social Work, 1981, 26, 140-143.

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Predicting Patterns of Social Work Staffing in Hospital Settings George I. Krell, MS, ACSW Gary Rosenberg, PhD At the time of writing George I. Krell was Director, Department of Social Work, The Mount Sinai Medical Center of Greater Miami, Miami Beach, FL 33141. Gary Rosenberg was Director, Department of Social Work Services and Associate Professor of Community Medicine (Social Work), The Mount Sinai Medical Center, New York, NY 10029. SUMMARY. One long-standing problem of social work departments in acute care hospitals has been their diverse patterns of staffing. The lack of a standard or guide has tended to diminish the utilization of social work services in hospital settings. Over a period of six years, the Society for Hospital Social Work Directors of the American Hospital Association developed and revised a guide for inpatient staffing. The guide is designed to assist hospital and social work administrators establish an inpatient line staffing plan which is based on the number of hospital beds, the number of patients to be served and the number of functions carried. The logic of the inquiry and the findings can serve as a base for future research in inpatient, ambulatory care and other settings that serve special populations.

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Introduction The purpose of this article is to provide a framework for studying and predicting patterns of social work staffing in hospital settings. It can be useful to social work managers in assessing their current and projected staffing patterns. Hospital managers, concerned with the provision of social work services and the overall allocation of scarce resources, can use it to obtain a rationale on how many social workers are necessary to meet the missions and goals of the setting.

History Although there were many state standards for social work, it had not achieved a major official place in national health care until the conditions of participation of Medicare established a standard. These acknowledged the need for social health services and identified social work as one of the main providers of these services. Except in the major academic teaching centers characterized by their low income, multi-problem population, hospital managers have been reluctant to commit extensive resources to social work services. This diffidence is linked with less than clearly defined hospital missions; with the question of how much the provision of social health services belongs in the community-based practice as opposed to hospital-based practice; and with the fact that social workers have not had the tools to demonstrate their services in outcome/output, cost-efficiency/cost-effectiveness or cost-benefit terms. The literature which suggests that social work can provide useful systems of support for the patient, family and team members is not well known to hospital administrators. 881

Thus, the picture at the present time is one of great unevenness. Between 3,000 and 4,000 hospitals have organized social work departments. Most of them are staffed by one to two persons. The major Medicare conditions of participation, which at least refers to social work, is now under a review which may result in the removal of social work as well as other professions from the standards. In studies of health care providers, social work productivity is not even mentioned. It is in a complex scene of conflicting values, policies and programs that a step towards rational approaches to staffing patterns is required. The development of staffing patterns in health care has not been a particular strength in the professions which are the major providers in health care. Thus, social work need not be defensive with regard to the development of its standards so far. There are a number of national studies which represent serious efforts of the social work profession to deal with this issue.

Relevant Literature The pertinent literature consists of accumulated studies all of which are descriptive rather than analytic or experimental. They suggest some guidelines for in-patient staffing. For example, it is projected that 55-60% of patients in hospitals need psychosocial intervention. Assuming that a social worker gives 60-70% direct service time to patients, • – for a 60-bed acute medical/surgical unit, two MSWs and one BSW are needed;

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• – for high risk groups, one MSW for each 25 beds; • – for psychiatry, two MSWs for 20 beds where the MSW is involved in the primary delivery psychotherapy; • – for psychiatry, two MSWs for 24 beds when this is a shared responsibility. (Lurie, 1976) The literature on out-patient staffing is less clear. However, for outpatients the following staffing patterns are suggested: • – of each 10,000 patients that generate approximately 35,000 visits, it has been determined that 85% need psychosocial services; therefore, 3 MSWs and 3 BSWs for each 10,000 patients is a suggested staffing ratio; • – for emergency room visits, 30,000 patients require 3 MSWs on staggered shifts. (Lurie, 1976) Other professions have attempted to deal with staffing patterns. Physicians per person in a population is one standard sometimes used to project numbers of physicians needed in underserved populations. The need for psychiatrists is viewed in terms of incidence and prevalence by regions so that distribution patterns can be seen. Frequently, however, the statistics utilized have to do with national distribution patterns and not with distribution patterns within a particular health care facility. Nursing has come the closest to having a reasonably well-developed staffing patterns formula developed in conjunction with the federal government and Medicus. Its key notion is the level of patient “acuity,” that is, the complexity of care the patient requires. Social work has used this idea, too, although in a

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parallel way, with mutual benefit of interaction between the two professions absent. Social work’s patient “acuity” factor is that of high social risk which identifies individuals at risk and aggregates populations at risk (Productivity and Health, 1980).

Factors Which Influence Staffing Patterns There are factors which are key in influencing staffing patterns. Some are more significant than others, but all help explain the variations in different settings and need to be applied to current work and future research. 1. Institutional Factors The size of the health care setting is a major factor relevant in social work staffing. Included in size are number of beds, average daily census, average length of stay, number of ambulatory care visits, number of registered ambulatory care patients and number of clinics. The purpose of the hospital is another crucial variable. Is it a chronic or acute care setting? Do its missions and functions include teaching and research in addition to service? 2. Patient Factors This is a second major area. What is the nature of the population served: ethnicity, socio-economic background, race, culture? The mix of patient illnesses, sophistication of patients and families about social work, their requests for social work services, the number and severity of their social

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problems related to illness, their premorbid psychosocial problems all influence staffing. 3. Physician Factors Physicians’ attitudes and beliefs about social work are crucial factors. Do they recognize the psychosocial component as important in care? Do they control the entry or exclusion of social work services for patients? Can social work itself identify the population it will serve? 4. Department Factors Departmental factors such as the mission of the department, the functions it carries, the current or proposed level of staffing, the size of the support staff, the organization of the department, the ordering of priorities, the sanctions regarding case entry and pickup and the extent of its primary treatment functions are all crucial to staffing.

Predictors to Staffing Patterns This paper identifies a set of factors and variables, and their use in establishing staffing patterns. It summarizes three studies conducted to test their usefulness as good predictors of staff needed. Their rationale is based on deductive logic and the logic of stepwise multiple regression analyses. Although the formula approaches are not problem free, they are usable, objective ways to arrive at staffing needs. They are described in detail because they establish the foundation of thinking and study on which further efforts to refine and perfect them can be built.

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Developing a Staffing Guide The long overdue need for some standard of uniformity was no more aptly illustrated than by a 1975 survey of 79 acute hospitals (Salary Survey, 1975). Thirteen hospitals with 125 beds or less had staffing patterns ranging from a low of one to a high of 6 professionals; 27 hospitals with 126-249 beds had professional staff ranging from one to 21 plus; 27 hospitals with 250-499 beds had staffs ranging from one to 21 plus; and 12 hospitals with 500+ beds ranged from a low of 7 to more than 21 plus. The latter group included hospitals with staffing patterns of 40 to 50 plus. In 1975 the Society for Hospital Social Work Directors, American Hospital Association began to develop a plan for determining social work staffing for acute care hospitals. The Board charged an ad hoc committee to develop such a guide by 1976. However, a usable plan was not finalized and agreed to until 1981, some six years later. The involvement of 252 hospitals and 2 studies were needed to complete the project. The long delay, despite the sustained effort maintained over the years, speaks to the complexity of the problems inherent in developing any plan that purports to be a national guide for the hospital field. The process also speaks to the difficulties in quantifying the delivery of human services, difficulties which become even more monumental when the services are provided in settings where social work often is viewed as a guest. The project moved in three phases. Phase One saw the development of basic concepts and the testing of these concepts in 10-12 leadership hospitals in 1975-1976. Phase

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Two used a national research forum to conduct a scientific testing of the original concepts; and saw the evolution of a new approach developed from 1976-1979 from the test results of 67 hospitals. Phase Three saw the substantiation of the original concepts and the simplification of the formula as the result of data obtained through a national study and agreement of the final formula in 1979-1981.

Phase I: The Deductive Formula The committee approached the task with this objective: to develop a gross formula which could be refined in the years ahead but which could be immediately applied to any general hospital. Key goals were set. The formula should reflect the staffing patterns of the leadership hospitals; but at the same time consider the realities in the entire hospital field. The formula should be usable by the administrator of the hospital which did not have an existing structured department as well as by the administrator of the hospital which did have a department, and who, in concert with the social work director, needed assistance in planning and revising a staffing pattern. Formulae were needed which could establish a minimum service level and yet allow for consideration of a maximum of service to meet the special needs of an individual institution. These concepts were enunciated as critical to the development of an effective staffing plan. 1. The scope of functions which constitute a social work program must be identified and agreed to for staffing purposes. While all hospitals do not have to provide the full range of functions, each hospital should

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specifically identify each service it planned to provide from a list of social work functions. 2. The number of functions provided by a social work department relates directly to the size of the staff required. Functions relate to program services and the more functions the department carries, the greater the time demands upon staff, and the greater the number of staff required. 3. For inpatients, the total number of patients to be served at any given point in time is limited by the number of hospital beds. It is necessary to approximate the number of patients requiring social work from the total inpatients being served by the facility. 4. It is possible to extract a service population by identifying and agreeing to a certain number of high risk factors that tend to characterize those in need. High risk factors would include patients 65 years of age or older, low income patients, especially those on public programs, and certain categories of high medical and/or psychosocial need, i.e., illnesses such as cancer, stroke, heart disease. An agreed upon set of percentages for patients at risk would be applied to the total patient population to extract a social service “at need” population. The formula to be devised would predict for the general hospital only the line staff needed, regardless of educational level, and would make no attempt to identify supervisorial and administrative staffing levels. Utilizing these concepts, the first inpatient formula developed is shown in Figure 1.

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The significant features of this first generation formula were:

Figure 1 First In-patient Formula 1. The active case ratio (ACR) was an approach to determine the percent of patients who required social service. The formula used a base percent developed for the major medical service areas of the hospital, i.e., surgical services beds, out of the experience of the ad hoc committee members. The hospital was then allowed to increase the percentages of patients to be served beyond the base percentage by taking into account high risk factors. It was possible under this system to project up to 100% of the patient population as a service group and to plan the size of staff accordingly.

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2. The staff/caseload ratio was an approach to determine the number of functions the hospital wanted to carry out; it provided a weight value of these functions in line with the significance of the functions. These were 11 basic functions such as psychosocial counselling and 11 optimal functions such as patient health consultation, spread over four categories. The hospital social work department checked the functions it desired to provide; this achieved a point value. The higher the point value, the greater the number of staff required. This was achieved in the formulae by allowing a staff ratio of one worker to IS cases (1-15) for maximum functions; a staff ratio of one worker to 25 cases (1-25) for medium number of functions; and a staffing ratio of one worker to 35 cases (1-35) for minimum functions. The actual numbers used were based on the following considerations. 1. The use of the one worker to 15 cases ratio derived from social work experience in psychiatric settings, often regarded as providing the most intensive level of professional services. In those settings the worker to case ratio is low in order to allow more time per case and staffing ranges from one worker to 10-15 active cases. 2. The use of the one worker to 35 case ratio was based on federal reimbursement standards to state/county welfare departments for family and children programs. This ratio was regarded as the maximum number of cases a worker could carry at a given point in time and maintain an acceptable level of professional practice.

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3. The ratio of the one worker to 25 cases was based on awareness that in most social agencies actual practice falls somewhere in between the high and low caseload ratios and level of contact intensity.

Positives and Problems—Phase I Formula During 1975-1976, the initial formula was revised three times to reflect the knowledge gained by the input of data from the hospitals where the committee members worked; and by the testing of data from 12 hospitals in three categories of bed size (small, medium, large) which were seen as “leadership” institutions because of “manpower” ratios and program reputation (AHA, 1977). A large number of respondees found the application of the formula relatively accurate as it called for a size of staff that reflected the respondees’ personal observations of their institutional needs. Major problems which reduced the effectiveness of the formula arose from the tendency of many directors to be unrealistic in the number of functions they indicated their departments provided and in their projections of high risk cases beyond the base number. Some small one member departments indicated that they carried many functions more congruent with that of a large well staffed hospital. The results of formula application thus overstated the number of staff required. When the formula was recomputed with data which accurately reflected functions carried, the staffing results came closer to expectations. It became obvious that the formula concepts needed to be clarified and simplified. The formula allowed too much flexibility and could propose overstaffing. Another

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major concern related to the use of the formula in out-patient settings where it resulted in projecting staffing out of line with reality. The effectiveness of the formulae in this area was seriously questioned. Because it mathematically utilized volume as a factor, the formula was not reflecting the reality of most settings which provided only nominal social work services to its ambulatory patient population.

Phase II: The Analytic Formula The second major phase of the formulae development was initiated in 1977 when the Society entered into an agreement with the Program Evaluation Resource Center, (PERC), an independent research team in Minneapolis, Minnesota, for the development and evaluation of staffing pattern formulae for hospital social work departments. The beginning point for the study was to be the January, 1977 report. The primary objective of the research is to determine the degree to which the initial version of the staffing formula compares with established practice in social work. A secondary objective is to examine possible modifications in the formula to enhance its predictive accuracy. (Sherman, 1978) The method used by PERC involved the development of a questionnaire germane to the determination of social work staffing needs. This was sent to a random sample of 100 general medical/surgical hospitals of moderate size (100-999 beds) drawn from the membership list of the Society for Hospital Social Work Directors. The questionnaire was 892

completed and mailed October, 1977. Sixty-seven (67) questionnaires were returned with sufficient information to allow application of the proposed staffing formula. The final report from PERC was completed November, 1978. The study revealed that the initial formula (the Deductive Formula) provided estimates that considerably exceeded current staffing practice. A revised or second generation version was proposed which involved a simplification of the initial formula; that is, algebraically it was possible to reduce the formula to only three variables: the active case ratio, the staff case ratio and the number of beds. The Active Case Ratio fixed at 0.40 to provide staffing estimates which would compare more realistically to actual practice. The revised formula reads as follows:

PERC’s formula was based on a model suggested by statistical analysis called the Analytic Formula. The two instruments were remarkably close in estimating staffing need, but the analytic formula had features “that seem to favor it over the deductive formula for further development and refinement” (Sherman, 1978). The basic assumptions and concepts of this alternate formula is that other things being equal, the social work staff requirements will be proportional to the following: the size of the hospital’s patient population; the need in the patient population and the extent of services offered. Actual social work staff size will tend to stand in some fixed ratio to the social work staff need.

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The assumptions resulted in the development of a multiplication model built around the following variables: social work size, annual number of hospital admissions, average length of stay, number of services provided, level of patient population, and adequacy of existing service population. After an assessment of each variable “using standard least squares analysis” it was determined that “annual hospital admissions (AHA), average length of stay (ALS) and number of services provided (NSP) related significantly to the size of the actual social work staff required.” The analytic formula is as follows:

By early 1979 the study committee faced a dilemma. Neither of the two major formulae met all the criteria that had been initially set. The initial deductive formula, based on data of leadership hospitals participating in the test, did not conform to actual hospital social work practice and produced staffing estimates somewhat in excess of the actual practice. The formula was congruent with hospital staffing patterns of the “leadership” hospitals. The value of the formula lay in its ability to determine what a quality staffing pattern should be based on: its adaptability to differential manpower needs within an institution; its fit to leadership hospitals; and as a guideline to other hospitals trying to reach a standard. Although its concepts and approach had produced a positive membership response, its greatest weakness lay in the still unproven percentages used in the formula to determine the

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patient population requiring social work and the worker caseload. The analytic formula which had not been tested by the membership but which was developed around a “best fit” regression line for the hospitals in the PERC survey, mirrored staffing practice as it actually existed in the field. It introduced and gave mathematical considerations in the formula to such factors as total in-patient volume and average length of stay.

Phase III: Revised Deductive Formula At this point in time an independent activity provided the “rescue” of the staffing formula. In response to federal legislation calling for a “uniform reporting” system in hospitals, the Society for Hospital Social Work Directors and the National Association of Social Workers joined forces to carry out a comprehensive survey of hospital social work practice. By the summer of 1979 complete data was collected for 173 hospitals, representing all regions of the country and sizes of hospitals. Survey instruments on 4,381 patients were completed (Coulton, 1979). The significant aspect of this study was that it provided a wealth of data that related to and could be utilized by the deductive formula to enhance its predictive reliability, to simplify its application and reduce the margin for error in its use. It provided the deductive approach with proven data that could be inserted into the formula: this negated one of the remaining criticisms of the formula. What was even more remarkable was the ease with which the data fit the deductive formula and the similarity of the studies. The following data 895

obtained by the nationwide survey of hospital social work practice was considered pertinent for the revitalization of the deductive concept. • – The median staff size for a small hospital (1 to 200 beds) was 1 to 2 social workers; the mean number of functions was 12.77; and the mean of in-patient admissions served by the social work department was 15%. • – The median staff size for medium hospital (201 to 500 beds) was 3 to 9 social workers; the mean number of functions was 14.47; and, the mean of in-patient admissions served by the social work department was 26%. • – The median staff size for a large hospital (501 to 1,000 beds) was 10 to 19 social workers; the mean number of functions was 14.66; and, the mean of in-patient admissions seen by the social work department was 23%. • – The median staff size for very large hospitals (1,000 plus beds) was 20 plus social workers; the mean number of functions was 17.62; and, the mean of in-patient admissions served by the social work department was 46%.

Further Revision The deductive formula was further revised for predicting the number of in-patient admissions to be served by a social work department. Following the PERC concept that in estimating patients to be served (ACR), an agreed upon and set percentage (PERC suggested 0.40 as valid related to their

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testing findings) should be used rather than the original approach of estimating at-risk percentages; it was decided that the National Survey data allowed for a refinement that would enable three (3) percentage factors to be utilized, based on the size of a hospital: 1. For a small hospital 28% was selected as characteristic of the patients requiring social work services; 28% was the average of the base percentages for leadership general hospitals without a high risk consideration in the Phase I Deductive Formula. In the National Survey Data 27.5% was the mean between the in-patient admissions served by the smallest hospital and those by the largest hospital. In addition, the workers in the combined small through medium hospital categories served a high of 26% of hospital admissions. 2. For a medium sized hospital, 34% was selected as characteristic of the patients requiring social work service. This figure was derived from data in the National Survey Data: it combined the 26% mean of the admissions seen by the medium size hospitals with the 46% mean of admissions seen by the large size hospitals to achieve an average of 36% patients requiring social work services. In the PERC Study the highest mean of patients to be served was 40%; when this was averaged with the 26% mean for National Survey Data medium size hospitals a 33% average was derived. 3. For a large size hospital, 40% was selected as characteristic of the patients requiring social work services; this specific percent built around the PERC suggested maximum. The National 897

Survey Data for admissions seen by large hospitals and very large social work departments was 46%. The Deductive Formula concept was validated; increased functions mean increased services and require a greater number of line staff to provide these services. The number of functions a department serves is significantly related to the department size; the difference is most striking between the very small and the very large hospitals (Coulton, 1979, p. 23). In order to reflect these new data, the Deductive Formula included the 19 functions characteristic of a social work department. These are described in Appendix I. The revised deductive formula is applied by deciding how many of the 19 functions will be carried. Once the number of functions is determined, the formula factors in a social worker to caseload ratio that takes into account the number of functions chosen. The National Survey provides comprehensive data by hospital bed size and makes it possible for an institution to develop its functions using the experience of hospitals as a group (Coulton, 1979), as below.

Functions and Hospital Bed Size 1. From one to 13 of these 19 functions are carried by social work departments of small (1-200 beds) hospitals, according to the National Survey Data, with a mean of 12.77 (scale of 19 functions); or 67.2% of the total functions. The Phase I Deductive Formula used an approximate range based on points of 1 to 11.1 functions (scale of 22 functions) or 50.4% of the total functions.

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2. From 14 to 17 functions are carried by social work departments of medium size hospitals; the National Survey Data indicated a mean of 14.47 functions or 76% of the total functions. The Phase I Deductive Formula used 11.3 to 18 functions as the range for medium hospitals and 15.09 or 69% was seen as the mean of the total functions. 3. Eighteen plus functions are characteristic of a large hospital; Coulton indicated 14.66 functions for large and 17.62 functions for very large hospital social work departments; 16.14 or 84.9% of the total functions (Coulton, 1979). Phase I Deductive Formula indicated that 19.1 or 86.8% of the total functions were characteristically carried by departments in large hospitals. While the actual numbers finalized in the adjustments were decided upon arbitrarily, the numbers both in the Active Case Ratio and functions carried fall within the range of the data developed in three separate surveys: the “leadership” hospital data reflected in January, 1977 report; the PERC data as reflected in Phase I report; and the data as reflected in the 1979 report of the National Survey. The staff caseload ratio, which in the original plan was applied to the number of functions based on points, is now applied to the number of functions based on hospital size. A small hospital with 1 to 13 functions now picks up to 1 to 35 caseload ratio to determine staff, a medium hospital with 14 to 18 functions a 1 to 25 caseload ratio and a hospital with 18 plus functions a 1 to 15 caseload ratio.

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The Revised Deductive Formula The foregoing factors revise the deductive formula to that depicted in Figure 2.

Figure 2 Revised In-patient Formula

Using the Formula As illustration, the formula is applied here to a 400 bed hospital:

Step 1. Establish the number of beds to be served • (a) Total beds = 400 or • (b) Total beds adjusted for one year utilization experience-80%

900

= 320 beds or • (c) Total beds by major service areas or • (d) Beds by Service Areas Adjusted one year utilization

Step 2. Establish the in-patient population to be served Multiply the number of beds by one of the following averages of active case ratio: • – In 1 to 200 bed hospitals 28% of the in-patient population is characteristically served. • – In 201 to 500 bed hospitals 34% of the in-patient population is characteristically served. • – In 501 plus bed hospitals 40% of their in-patient population is characteristically served. In the case of this 400 bed hospital, 34% would be applied as the active case ratio.

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Step 3. Determine the worker to caseload ratio by functions carried Divide the results of multiplying Steps 1 and 2 with one of the following: • – 1 to 200 bed hospitals tend to carry out 1 to 13 social work functions which the formula applies as one worker to 35 cases. • – 201 to 500 bed hospitals tend to carry out 14 to 17 social work functions which the formula applies as one worker to 25 cases. • – 501 plus bed hospitals tend to carry out 18 plus social work functions which the formula applies as one worker to 15 cases. In the case of this 400 bed hospital, the one worker to 25 cases would apply.

Step 4. Establish the staffing pattern • (a) Total Beds 400 = 5.4 staffing need or • (b) Beds adjusted 320 = 4.3 staffing need for one year utilization experience or

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Formula Variations and Refinements The formula allows for variations and refinements in its use to accommodate institutional differences: 1. The formula is more discriminately utilized when the total number of patients to be served is computed on a service/ward basis; large hospitals are encouraged to utilize the patient population to be served on a unit by unit basis. 2. In the event that every patient on a given service area is to receive social work services because of the nature of his/her medical problems, i.e., psychiatry, oncology, etc., then the base percent of patients to be served can be adjusted up to 100% for those particular beds. However, it should be regarded as unlikely that an acute general hospital as a whole should be adjusted higher than 40% for small hospitals, 46% for a medium size hospital and 52% for a large hospital. 903

3. Hospitals with a bed size close to the dividing point between the hospital categories may find their risk/ service population percent more characteristic of another category; if so, the other category, either higher or lower, should be used. 4. Hospitals with special functions, i.e., trauma center, public hospital role, high risk populations, etc., may find their risk/service population more characteristic of the next highest category; if so, the next highest category should be used. 5. Hospitals which tend to carry the number of social work functions characteristic of another bed category should also try the formula weight of that category; these functions should be those carried on an ongoing regular basis.

Summary Until now the social work profession has not had a staffing standard or guide for its work in acute hospitals. Institutions similar in program and size have operated with staffing levels that are so dissimilar as to make social work practice and the meaningful meeting of the hospital patient and family psychosocial needs an uneven enterprise. This has been true for many years and the increases in the health care needs of individuals as reflected by an aging population, chronicity, and the high costs of in-patient hospital care intensify the need for an organized, uniform system of social work services delivery. The literature to date reports no approaches which have been tested or have universal applicability.

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The work begun in 1975 under the auspices of the Society for Hospital Social Work Directors, American Hospital Association, has resulted in the development of a usable guide for staffing inpatient service areas of acute hospitals. The formula developed considered bed size, special in-patient services, the number of social work functions to be provided, and the number of patients to be served as the basis for projecting a social work staffing pattern for an institution. The formula offers a staff norm that has universal application but allows flexibility for individual institutional situations. The formula promotes more accurate hospital and departmental planning which relates the size of social work staff to a variety of professional and administrative factors. The deductive formula approach provides a significant step forward for the establishment of social work standards in hospitals and sets the foundation for further work, refinements and the development of new approaches.

References An Approach for Determining Uniform Social Work Staffing in Acute General Hospitals, January, 1977. Draft. George I. Krell with the Ad Hoc Committee of the Board on Staffing Patterns, Society for Hospital Social Work Directors, American Hospital Association. An Approach for Determining Uniform Social Work Staffing in Acute General Hospitals, July, 1981. Society for Hospital Social Work Directors, American Hospital Association. Coulton, Claudia J., et al. Nationwide Survey of Hospital Social Work Practice, Human Services Design Laboratory,

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Case Western Reserve University, Cleveland, Ohio, 1979. Unpublished. Lurie, Abraham “Staffing Patterns: Issues and Program Implications for Health Care Agencies,” Social Work in Health Care, 2(1), Fall, 1976, pp. 85-94. Sherman, Robert E., Lund, Sander H. and Kiersuk, T. Survey on Staffing Patterns for Hospital Social Service Departments, Program Evaluation Resource Center, Minneapolis, Minnesota, November, 1978. Unpublished.

Other Suggested Readings Barker, Robert L. and Briggs, Thomas L., Differential Use of Social Work Manpower, National Association of Social Workers, New York, 1968. Berkman, B., Rehr, H. and Rosenberg, G. “A Social Work Department Develops and Tests a Screening Mechanism to Identify High Social Risk Situations,” Social Work in Health Care, 5(4), Summer, 1980, pp. 373-385. Clark, Eleanor High Social Risk-Audiotape, Society for Hospital Social Work Directors, 1980. Kim, Paul Η. Κ., Hasan, S. Zafar, Egli, Dan Mental Health Professionals Perceive Knowledge and Skills Need, College of Social Work at the University of Kentucky: Kentucky, 1981.

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Productivity and Health-A Review and Evaluation of Health Personnel Productivity, Medicus Systems Corp., Washington, D.C., August, 1980. Rehr, H., Berkman, B. and Rosenberg, G. “Screening for High Social Risk: Principles and Problems,” Social Work, 25(5), September, 1980, pp. 403-406. Salary Survey, October 29, 1975, Massachusetts Chapter of the Society for Hospital Social Work Directors. Unpublished.

Appendix I** • A) NINETEEN SOCIAL WORK FUNCTIONS 1. *INFORMATION AND REFERRAL Information provided to the patient and family about the types of community resources available; connection made with resource so identified. 2. *FACILITATING COMMUNITY AGENCY REFERRAL Assistance beyond information is provided to ensure patient access to appropriate resources; i.e., applications are completed in behalf of patients and processed; conferences and visits are earned out to agencies in behalf of or with patients; representation of patient and patient interest is directly made to community social agencies; escort transportation and child care are provided. 3. *PRE-ADMISSION PLANNING Counseling on patient and family problems

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4.

5.

6.

7.

8.

directly related to planning and arranging for hospital admission. * CASE FINDING OR SOCIAL RISK SCREENING A structured ongoing outreach program geared to identifying those patients potentially in need of social work services and arrangements for the provision of those services. * DISCHARGE PLANNING Counseling on patient problems directly related to planning and arranging for post hospital care in order to consolidate gains made during hospitalization. FACILITATING USE OF HOSPITAL SERVICES Advocacy role is assumed within hospital in behalf of patient and family with all departments and hospital personnel. COUNSELING OF PATIENTS AND FAMILIES Counseling directed toward helping patients and their families deal with their situations more effectively as these situations relate to health and medical care. PSYCHOSOCIAL EVALUATIONS The gathering of information about the patient’s social, psychological, cultural, environmental and financial situation and utilizing this information for a psychosocial assessment and treatment plan or formal report.

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9. HEALTH EDUCATION The enhancement of patient knowledge through a structured program geared to provide factual knowledge to patients and/or families; i.e., family planning, birth control, sickle cell anemia, alcoholism, etc. 10. FINANCIAL ASSISTANCE Financial or other concrete aid is provided directly by the hospital social work department; transportation assistance, medications, prosthetic devices, etc. 11. UTILIZATION REVIEW Participation in the formal concurrent review process of the hospital related to the P.S.R.O. requirements. 12. CASE CONSULTATION TO HOSPITAL STAFF A structured meeting which provides specialized knowledge to other health care personnel regarding patient psychosocial problems, procedures or services. It can be of an individual and/or team nature. 13. CASE CONSULTATION TO COMMUNITY AGENCIES A structured meeting which provides specialized knowledge to health care personnel of an outside agency regarding the psychosocial problems of a patient active with the outside agency. 14. PROGRAM CONSULTATION TO HOSPITAL STAFF Assesses patient population to determine unmet needs, investigates and channels 909

15.

16.

17.

18.

19.

information about patient care problems to appropriate departments, identifies and makes recommendations for changes in hospital policy and procedure as related to patient/family rights. PROGRAM CONSULTATION TO COMMUNITY AGENCIES A structured meeting which provides specialized knowledge to institutions. HOSPITAL PLANNING ACTIVITIES Involvement in the structured activities and mechanisms of the institution which relate to short term and long term planning and program development that relates to outreach and community services. COMMUNITY HEALTH PLANNING ACTIVITIES Working with the community and its agencies to develop necessary programs and uncovering community resources to meet patient needs. COMMUNITY SERVICE ACTIVITIES Responsibility to represent the hospital to the community on matters pertaining to social work; participation with community groups in carrying out appropriate programs. RESEARCH A structured system of study of the psychosocial factors of patient care and needs. A structured system of review of the quality of social work services provided as part of both the hospital’s and the department

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of social work’s patient care evaluation and peer review program.

Notes This work emanates from the interest of both authors as well as the work of the Society for Hospital Social Work Directors. Of particular importance to the development of some of the thinking are the contributions of a number of individuals who participated in the process: Barbara Berkman, Claudia Coulton, Abraham Lurie, Helen Rehr, Roben Spano, Salie Rossen, Robert Stepanek. Reprinted from Social Work in Health Care, Volume 9(2), Winter 1983. * The 5 functions most common to social work departments. ** (An Approach to Determining Uniform Social Work Staffing in Acute General Hospitals.) Society for Hospital Social Work Directors, American Hospital Association, 1981.

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A Survey of Patient and Family Satisfaction with Social Work Services Leslie Garber, ACSW Susan Brenner, ACSW Diane Litwin, ACSW At the time of writing Leslie Garber, ACSW, was Supervisor; Susan Brenner, ACSW, Assistant Director; and Diane Litwin, ACSW, Social Worker, Department of Social Work, St. Vincent’s Hospital and Medical Center of New York, New York, NY 10011. An earlier version of this article was presented at the 19th Annual Meeting of the Society for Hospital Social Work Directors, New York, NY, March 26, 1984. SUMMARY. Client satisfaction can be an important indicator of the quality of social work services. This article reports the results of a survey conducted by a social work department of a large urban teaching hospital to elicit patient and family reaction to its services. A random, proportionate sample of inand out-patient cases in medical and psychiatric programs was used. In general, staff was seen as helpful, although with interesting variations depending on the social work function performed. The findings have implications for education, supervision, quality assurance, levels of staffing and staff’s perception of their usefulness.

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What do our clients think of us? The answer to this question must be included in any thorough assessment of the value of social work services and in planning for future service delivery. Client satisfaction, if it can be demonstrated, can speak for us to the money managers in our agencies. In 1982, these considerations led a department of social work in a large urban voluntary medical center to conduct a consumer survey. The project was an aspect of a Quality Assurance Program and a part of the department’s effort to meet the hospital and professional objective of maintaining quality care.

Goals and Assumptions The goals of the project were to maintain a high quality of social work services and to convey to clients, both patients and families, our interest in and respect for their opinions. We began with the following assumptions: (1) there is a relationship between clients’ perceptions of staff attitudes and their perceptions of staff effectiveness; (2) clients see the provision of tangible services as a more significant social work function than counseling; (3) clients prefer to see social work staff at point of entry into the hospital system, rather than when a crisis develops, and more frequently than they had been seen; (4) the level of satisfaction varies with the service provided, and is lowest in those areas where resources are limited; (5) the level of satisfaction is lower among in-patient clients, who are in an acute care setting with bed-utilization restrictions, than among out-patient clients, who have a more extended period to decide on their options; and (6) clients referred by non-social work staff have not received a specific explanation of the nature of social work 913

services, may have been led to have unrealistically high expectations and are, therefore, less satisfied.

Literature Review Both social work and mental health practitioners have published client survey results comparing client satisfaction to outcome (Edwards, 1978); to staff perceptions of the impact of their services (Maluccio, 1979); and to demographic data. The literature highlights several issues that were of particular relevance to our survey: (1) the difficulty obtaining a representative sample from an inner-city population (Ogren, 1975); (2) the prevalence of over-positive responses (Edwards, 1978); (3) clients’ perceptions of improvement of specific target symptoms (Fineberg, 1982); and (4) the correlation between clients’ reactions and their perceptions of practitioners’ affective behaviors, for instance, “devotion,” “time,” and “interest” (Ben-Sera, 1976).

Methodology Tools Our tool was a telephone questionnaire. A letter was sent to potential respondents to prepare them for the questionnaire and reassure them about confidentiality. Mail questionnaires were sent only when we were unable to reach clients by phone, and a stamped, self-addressed envelope was included.

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Case Selection We selected a proportionate random sample of the 533 cases closed in the Department of Social Work in May, 1982. Within four groupings (In-Patient and Out-Patient, General Hospital and Psychiatiy), every third case was selected for a total of 168 cases (31% of closed cases). This was done to assure a statistically significant response rate of at least 15% of closed cases. In drawing the sample, we excluded 22 cases and selected the next case on the list. The cases excluded were: (1) eleven in which the clients’ whereabouts were unknown—i.e., A.M.A. discharges, street people who refused to accept planning or give information; (2) five in which contact might have been harmful or especially painful to the client—i.e., some victims of sexual abuse, including children; (3) four in which the patient had died or had significant organic impairment, and there had been no available family; and (4) two in which the patient had a pending legal suit against the hospital. The 168 cases fell into three groups: (1) one hundred one (60%) in which only the patients could be surveyed, because there had been no family available for social work intervention; (2) twenty-eight (17%) in which both the patient and family were surveyed; and (3) thirty-nine (23%) in which only the family was surveyed, because of the patient’s extreme youth or age, major organic impairment, or death. The sample of 168 cases produced 196 potential respondents—129 patients and 67 family members.

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Process This 813 bed metropolitan area hospital serves a heterogeneous patient population, including some hard-to-locate clients. To keep our sample representative of this population, we retained among our potential respondents 23 who went to shelters or single-room occupancy hotels, 3 who went to other treatment facilities, and 18 who had no phone. Since response rates are higher for phone surveys than for mail surveys, we attempted to phone as many clients as possible. However, 64 mail questionnaires were sent to clients who could not be reached by phone. Telephone surveys were initiated three months after cases were closed, and two weeks after pre-survey letters were mailed. Phone interviewers were available, when needed, in Spanish, Italian, and Chinese. Phone interviews were conducted by seven social work staff members other than those who had provided the service. We attempted to insure uniformity by instructing them to conduct the survey by reading the questions precisely as they were written, while still allowing for free expression by respondents.

Response Rate We received responses in 87 of 168 cases (52%), and from 96 of 196 potential respondents (49%). The response rate was higher for family members (67%) than for patients (40%), and substantially higher on phone surveys (68%) than on mail surveys (7%). 916

Survey Responses Responses were reviewed in four categories: (1) perception of staff attitudes; (2) perceptions of staff effectiveness in specific areas; (3) perceptions of service delivery system; and (4) overall perceptions of the helpfulness of social work services. The question about their expectations of social work services prior to contact did not elicit responses that could be analyzed, and will not be reported. Within each category, we also compared patient/family responses and in-patient/out-patient responses.

Clients’ Perceptions of Staff Attitudes Two questions were used: (1) “Did the social worker seem to understand what you wanted?” and (2) “Did the social worker seem to care about what happened to you?” Overall response rates were 78% positive, 7% negative, and 16% unsure (Table 1). There were only slight variations between patient and family responses and between in-patient and out-patient responses.

Clients’ Perceptions of Staff Effectiveness in Specific Areas Clients were asked to rate staff effectiveness in any or all of 13 service categories (Table 2). Clients viewed staff as most effective in providing those services not dependent on the availability of community resources: counseling, providing information about hospital services, group work, and 917

providing information and education about the illness. Staff was also viewed as effective in arranging follow-up care. Clients viewed staff as somewhat less effective in providing services for which hospital social work staff most often have to turn to community agencies, i.e., medical insurance problems, arranging TABLE 1 CLIENTS’ ATTITUDES

PERCEPTIONS

OP

STAFF

QUESTION #2 Did the social worker seem to understand what you wanted?

YES NO UNSURE 75 6 15 (78%) (6%) (16%)

QUESTION #6 Did the social worker seem to care about what happened to you? 74 8 14 (77%) (8%) (15%) TABLE 2 CLIENTS’ EFFECTIVENESS

PERCFPTION

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OF

STAFF

transportation, planning for care of people at home, and arranging home help.

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Social work staff were viewed as least effective in referral to residential facilities, applying for financial assistance, and housing problems. We speculate that both lack of availability of resources and attitudes at some community agencies influence these responses. Patients were more satisfied than families with effectiveness of service in the areas of care of people at home, arranging transportation, and referral to residential facilities. They were less satisfied than families in the areas of applying for financial assistance and arranging follow-up services. We noted that 90% of family members were satisfied with group work services, as compared with 73% of patients. In-patient clients and their families consistently found social work service more effective than did out-patient clients-most notably in the areas of planning for care of people at home, providing information about hospital services, medical insurance problems, arranging home help, and referral to residential facilities. This may be because discharge planning often requires more intense and/or frequent client contact. Further, out-patients may be less satisfied because they are not in a protected environment while waiting for important community services-i.e., food stamps, home help.

Clients’ Perceptions of Service Delivery System Clients were asked to respond to questions on the source of their referral to social work, and on the timeliness and frequency of social work contact (Table 3). The majority of referrals, 65%, came from physicians, social workers, or clients themselves.

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Slightly more than half of our clients (53%) were satisfied with the timeliness of the initial social work intervention. A somewhat higher number (76%) was satisfied with the frequency of social work contact. Patients were less satisfied than family members with both the timeliness and frequency of social work intervention. Outpatients were less satisfied than in-patients in both areas. TABLE 3 CLIENTS’ PERCEPTIONS OF SERVICE DELIVERY SYSTEM

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Clients’ Overall Perceptions of the Helpfulness of Social Work Services Clients were asked to comment on the helpfulness of seeing a social worker, and if they would refer themselves or others to a social worker in the future (Table 4). There were positive response rates to both questions (81% and 80%, respectively).

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Clients were also asked if there was any way the social workers at this hospital could improve their services. Of the 80 clients who answered this question, 63% said “No,” and 37% said “Yes.” In the latter group of 31 respondents, 7 (23%) noted problems in the area of staff attitudes, 5 (16%) in staff effectiveness, 7 in timeliness and frequency of social work intervention. Twelve (39%) gave answers that were non-specific or inconclusive. Patients and families showed similar positive response rates (80% and 82%, respectively) to the question about the overall helpfulness of social work services. Family members showed a slightly higher positive response rate (84%) than patients (76%) on the question of future referrals to a social worker. There was virtually no difference in positive response rates on both questions between in-patient and out-patient clients.

Findings and Conclusions 1. This similarity of positive response rates to questions on staff attitudes and overall helpfulness of social work services reinforces the importance of an empathetic attitude and of conveying one’s understanding of what the patient wants, thus validating our initial assumption. 2. Clients perceived social work staff as more effective in counseling, groups, and information/education services than in community resource services. Moreover, clients who received services without counseling were twice as likely to be dissatisfied as clients who received these services along with counseling. This finding did not validate our initial assumption.

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3. Forty-seven percent of clients were not fully satisfied with the timeliness of the initial social work intervention and would have preferred earlier intervention; thirty-three percent would have preferred TABLE 4 CLIENTS’ REACTIONS TO SOCIAL WORK INTERVENTIONS

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to see the social worker more frequently. These figures, which validate our initial assumption, imply a need for adequate staff to provide timely services. 4. Perceptions of staff effectiveness varied with the specific service provided. Staff was seen as least effective when the service requested was for a limited community resource, such as housing or financial assistance. This validates our initial assumption. 5. In- and out-patient clients reported similar levels of satisfaction in all categories surveyed, a finding which does not validate our initial assumption. 6. Seventeen of the 18 clients who did not find social work services helpful were self-referred or referred by other hospital staff. This supports our initial assumption that clients referred by nonsocial work personnel have a less realistic understanding about what social workers can provide and as a result may be less satisfied with services.

Implications and Uses Consumer surveys have implications for hospital social work departments in the areas of staff education and training, management of staffing resources, and demonstration of the value of social work services to hospital administration. Survey results were presented at a departmental meeting, with follow-up discussion in individual and group supervision. Based on the findings noted above, three issues were highlighted. First, clients who perceive staff as empathetic

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and understanding may be generally satisfied even when particular services cannot be provided. Second, clients do value and appreciate the counseling aspect of the social work role. Both findings provided a boost for staff morale and emphasized the importance of a caring attitude. Third, the lower level of satisfaction among clients referred by non-social work staff indicates the need for social workers themselves to define for clients the nature of the social work role. Survey findings about the timeliness of social work intervention support the need for social work departments to take the initiative in case-finding through pre-admission screening, patient-care rounds, and high-risk screening mechanisms. The Department was already participating in patient-care rounds, and had developed high-risk screening tools which continue to be used effectively. Pre-admission screening is being explored. In addition, the positive perceptions of the effectiveness of social work groups (albeit in our small sample) supports the Department of Social Work emphasis on groups. Several new groups have been initiated since the survey was reported to staff. Finally, the survey was distributed to hospital administration, and the findings reviewed with the administrator to whom our Department is responsible in order to demonstrate the effectiveness and value of social work services, and to point out that the positive image of social work staff has an important public relations value to the hospital. The survey finds were among the factors contributing to more rapid approval of open social work positions.

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Note Reprinted from Social Work in Health Care, Volume 11(3), Spring 1986.

References Ben-Sera, Zeer. The function of the professional’s affective behavior in client satisfaction. Journal of Health and Social Behavior, March, 1976, 77. Edwards, D.W., Yarvis, R.M., Mueller, D.P., & Langsley, D.G. Does patient satisfaction correlate with success? Hospital and Community Psychiatry, March, 1978, 29 (3), 188-190. Fineberg, Beth L., Kettlewell, Paul W., & Sowards, Stephen, K. An evaluation of adolescent in-patient services. American Journal of Orthopsychiatry, April, 1982, 52 (2), 337-345. Maluccio, Anthony N. Perspectives of social workers and clients on treatment outcome. Social Casework, July, 1979, 394-401. Ogren, Evelyn H. Sample bias in patient evaluation of hospital social services. Social Work in Health Care, Fall, 1975, 7 (1) 55-63.

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Commentary Social workers have struggled to overcome the roles defined for them by others and to replace them with professional contributions that they themselves define as needed components in patient care. As they do in all organizations, professional social workers in hospital settings encounter tensions between the sometimes conflicting needs of the institution, its other constituencies, and those of the consumers it services. The resultant strain may engender the role ambiguity that Butrym has noted as “a continuous feature of the history of the profession” (1967, p. 22). Cannon acknowledged that in the early years the special function of social service was not clearly defined in the minds of the social workers (1952). As professional social work in health care settings expanded and evolved there was diminished satisfaction with early roles of augmenting the doctor’s care of patients in a “facilitating service role” (Teague, 1971). Social workers began to define and extend their roles to include those of preventing and reducing psychosocial factors that exacerbate illness or impede appropriate use of resources for care or cure. These often include organizational and system barriers to access and use; as well as attitudinal barriers about social work held by physicians, nurses, and hospital administrators who may define the social work role narrowly. Influencing these impediments calls for skills and time as the processes are interpersonal, developmental, and political. As Freidson notes, the collaboration and positive interest of physicians are

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vital ingredients in the development of greater autonomy for health care workers as are acceptance of their services by patients (1970). In a setting where health care administrators or professional colleagues of other disciplines often have defined and limited the services that social workers provide, one consequence has been that professional authority and autonomy have been limited as well, so that some sociologists have termed social work a “semi-profession” (Toren, 1972; Etzioni, 1969; and Carr-Saunders, 1955). A more autonomous professional role, with the authority to define functions and services that will be provided, requires a distinct knowledge base and strong systems of accountability and internal controls (Goode, 1969) as well as a primary commitment to clients. As Epstein notes about professionals in social work agencies in general, “although practitioners and agencies agree in principle that service to clients is paramount, their interests do not necessarily coincide” (1973). In the wake of stringent cost-containment policies of the past decade, external requirements for accountability have provided a stimulus to social workers to identify what is unique in their contribution to total patient care. Autonomous practice is predicated on assuming professional responsibility for accountability, documented via mechanisms established for quality assurance (Germain, 1980). A strong professional identity is essential to deal with the impact of institutional and regulatory constraints that derive from cost-containment measures such as DRGs and the 930

competition for functions traditionally assigned to the social worker. Changes in legislation have led to opportunities for power inherent in the institutional role of discharge planning coordinator, which was mandated by cost-containing legislation in the ’70s. The process of helping patients plan for care after their hospitalization is clearly an appropriate professional function (Caputi and Heiss, 1984) and social workers have developed new approaches to demonstrate their effectiveness in fulfilling this role in the best interest of the patient and at the same time promoting the hospital’s interests. The task of balancing these interests can be accomplished when social workers are in charge of defining the nature of their services and of the procedural systems basic to efficient implementation.

Management and Accountability The stresses experienced by social work departments in health care during times of tightened budgets and calls for increased accountability have reinforced social work’s search for increased autonomy and self-definition and have led to reexamination of priorities, choices of targets, and methods for intervention and relationships to other health care professionals. This search has stimulated the development of new case-finding mechanisms, systems for early intervention, attempts to develop uniform standards of practice, redeployment of staff, and modifications in staff training and development (Carrigan, 1978). The need to be accountable to many constituencies, to clients, employers, governmental and regulatory agencies, colleagues

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in other disciplines, and the social work profession itself has stimulated study and research in management systems. The process of reexamining what social workers in hospitals do, how effectively they meet their goals, how well they communicate what they are doing to colleagues, and how well they prepare staff for changing responsibilities has confirmed many established practices. It has also promoted new ventures in areas such as systems for resource location, quality assurance, educational and supervisory programs, and documentation systems, including medical chart recording (Kagle, 1982; Rosenberg, 1980; Biagi, 1977; Spano, Kiresuk, and Lund, 1977; Spano and Lund, 1976; Kane, 1974; Volland, 1976). Seeking to improve the quality of their programs, to increase their visibility, and to demonstrate their value to the health care system and its clients, social work departments have developed accountability systems that demonstrate effective professional practice grounded in knowledge and ethical principles (Rosenberg and Weissman, 1981). The achievement of these important goals has required the active participation of social workers at all levels (Chemesky, 1981). Sophisticated business management and accountability systems also provide a secure fiscal base for social workers in these settings. Their acceptance and use depend on molding these structures to fit the shape of social work’s practice and principles. Administrators of social work departments in health care settings provide direction, resources, education, and other supports to the social work staff practicing in a challenging and complex health care system. Management programs are designed to help staff develop competence for effective 932

practice, even in a context of declining resources and diminished support for social work programs, and to insure availability and retention of adequately trained, skilled, and committed staff who can work with the independence necessary for current professional responsibilities.

References Biagi, Ettore. “The Social Work Stake in Problem-Oriented Recording,” Social Work in Health Care, 3:2, Winter 1977, pp. 211-222. Bracht, Neil. Social Work in Health Care: A Guide to Professional Practice. New York: The Haworth Press, 1978. Butrym, Zofia. Social Work in Medical Care. London: Routledge and Kegan Paul, 1967. Cannon, Ida. On the Social Frontier of Medicine. Cambridge: Harvard University Press, 1952. Caputi, Marie A., and Heiss, William A. “The DRG Revolution,” Health and Social Work 9(1). Winter 1984, pp. 5-12. Carrigan, Zoe H. “Social Workers in Medical Settings: Who Defines Us?” Social Work in Health Care 4(2), Winter 1978, pp. 149-163. Carr-Saunders, Alexander M. “Metropolitan Conditions and Traditional Professional Relationships” in Robert M. Fisher

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(Ed.), The Metropolis in Modem Life. New York: Doubleday, 1955, pp. 279-288. Chernesky, Roslyn H. “Attitudes of Social Workers Toward Peer Review,” Health and Social Work 6(2), May 1981, pp. 67-73. Epstein, Laura. “Is Autonomous Practice Possible?” Social Work 18(2), March 1973, pp. 5-12. Etzioni, Amitai (Ed.). The Semi-Professions and Their Organizations. New York: The Free Press, 1969. Ferguson, Kristi; Bowden, Leora; Halman, Marc; Huff, Arlene; Langlie, Joann, and Morgan, Gladys. “Social Work Quality Assurance Based on Medical Diagnosis and Task: A Second-Stage Report,” Social Work in Health Care 6(1), Fall 1980, pp. 63-71. Freidson, Eliot. Professional Dominance: The Structure of Medical Care. Chicago: Aldine, 1970.

Social

Germain, Carel B. “Social Work Identity, Competence and Autonomy: The Ecological Perspective,” Social Work in Health Care 6(1), Fall 1980, pp. 1-10. Goode, W. J. “The Theoretical Limits of Professionalization,” in Amitai Etzioni (Ed.), The Semi-Professions and Their Organizations. New York: The Free Press, 1969, pp. 266-313. Kagle, Jill Doner. “Social Work Records in Health and Mental Health Organizations: A Status Report,” Social Work in Health Care 5(1), Fall 1982, pp. 37-46.

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Kane, Rosalie A. “Look to the Record,” Social Work 19Ά, July 1974, pp. 412-419. Lurie, Abraham, and Rosenberg, Gary (Eds.), Social Work Administration in Health Care. New York: The Haworth Press, 1984. Rosenberg, Gary. “Concepts in the Financial Management of Hospital Social Work Departments,” Social Work in Health Care 5(3), Spring 1980, pp. 287-297. Rosenberg, Gary, and Weissman, Andrew. “Marketing Social Services in Health Care Facilities,” Health and Social Work 6(3), August 1981, pp. 13-19. Spano, Robert M., and Lund, Sander H. “Management by Objectives in a Hospital Social Service Unit,” Social Work in Health Care 7(3), Spring 1976, pp. 267-276. Spano, Robert M.; Kiresuk, Thomas J., and Lund, Sander H. “An Operational Model to Achieve Accountability for Social Work in Health Care,” Social Work in Health Care 5(2), Winter 1977, pp. 123-141. Teague, Doran. “Social Service Enterprises: A New Health Care Model,” Social Work 76(3), July 1971, pp. 66-74. Toren, Nina. Social Work: The Case of a Semi-Profession. California and London: Sage Publications, 1972. Volland, Patricia. “Social Work Information and Accountability Systems in a Hospital Setting,” Social Work in Health Care 7(3), Spring 1976, pp. 277-285.

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Additional Readings Bennett, Claire, and Beckerman, Nancy. “The Drama of Discharge: Worker/Supervisor Perspectives,” Social Work in Health Care 11(3), Spring 1986, pp. 1-12. Berkman, Barbara, and Rehr, Helen. “Seven Steps to Audit,” Social Work in Health Care 2(3), Spring 1977, pp. 295-303. ______ “Social Work Undertakes Its Own Audit,” Social Work in Health Care 3(3), Spring 1978, pp. 273-286. Blackey, Eileen. “Social Work in the Hospital: A Sociological Approach,” Social Work 1(2), April 1956, pp. 43-49. Brody, Stanley J. “Common Ground: Social Work and Health Care,” Health and Social Work 7:1, February 1976, pp. 16-31. Chernesky, Roslyn, and Lurie, Abraham. “The Functional Analysis Study: A First Step in Quality Assurance,” Social Work in Health Care 7(2), Winter 1975-6, pp. 213-223. Christ, Winifred R. “A Method for Setting Social Work Staffing Standards Within a Psychiatric Setting,” Social Work in Health Care 8(2), Winter 1982, pp. 87-103. Coulton, Claudia J. Social Work Quality Assurance Programs. Silver Spring, Md.: National Association of Social Workers, 1983.

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_______ “Confronting Prospective Payment: Requirements for an Information System,” Health and Social Work 9(1), Winter 1984, pp. 13-24. Coulton, Claudia J., and Butler, Nathaniel. “Measuring Social Work Productivity in Health Care,” Health and Social Work 6(3), August 1981, pp. 4-12. Davidson, Kay W. “Evolving Social Work Roles in Health Care: The Case of Discharge Planning,” Social Work in Health Care 4(1), Fall 1978, pp. 43-54. (See Part II of this volume.) Haber-Scharf, Michele. “Costing Social Work Services in a Hospital Setting,” Social Work in Health Care 77(1), Fall 1985, pp. 113-129. Harris, Dorothy V., and Allison, Elizabeth Keith. “Performance Management and Professional Development as Separate Functions of Supervision,” Health and Social Work 7(4), November 1982, pp. 283-291. Hirsch, Sidney, and Schulman, Lawrence C. “Participatory Governance: A Model for Shared Decision Making,” Social Work in Health Care 1(4), Summer 1976, pp. 433-446. Jansson, Bruce S., and Simmons, June. The Ecology of Social Work Departments: Empirical Findings and Strategy Implications,” Social Work in Health Care 11(2), Winter 1985-6, pp. 1-16. (See Part 9 of this volume.)

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______ “The Survival of Social Work Units in Host Organizations,” Social Work 31(5), September-October 1986, pp. 339-343. Kulys, Regina, and Davis, Sister M. Adrian. “Nurses and Social Workers: Rivals in the Provision of Social Services?” Health and Social Work 12(2), Spring 1987, pp. 101-112. Lister, Larry. “Role Expectations of Social Workers and Other Health Professionals,” Health and Social Work 5(2), May 1980, pp. 41-49. Lurie, Abraham. “Staffing Patterns: Issues and Program Implications for Health Care Agencies,” Social Work in Health Care 2(1), Fall 1976, pp. 85-94. Nacman, Martin. “Reflections of a Social Work Administrator on the Opportunities of Crisis,” Social Work in Health Care 6(1), Fall 1980, pp. 11-21. Olsen, Katherine M., and Olsen, Marvin E. “Role Expectations and Perceptions for Social Workers in Medical Settings,” Social Work 12(3), July 1967, pp. 70-78. Reamer, Frederic G. “Facing up to the Challenge of DRGs,” Health and Social Work 10(2), Spring 1985, pp. 85-94. Rehr, Helen. Professional Accountability for Social Work Practice: A Search for Concepts and Guidelines. New York: Prodist, 1979. Reinherz, Helen; Berkman, Barbara; Ewalt, Patricia L., and Grob, Mollie C. “Training in Accountability: A Social Work

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Mandate,” Health and Social Work 2(2), May 1977, pp. 42-56. Segal, Brian. “Planning and Power in Hospital Social Service,” Social Casework 57(7), July 1970, pp. 399-405. Spano, Robert M., and Lund, Sander H. “Productivity and Performance: Keys to Survival for a Hospital-Based Social Work Department,” Social Work in Health Care 11(3), Spring 1986, pp. 25-39. Ullmann, Alice, and Kassebaum, Gene. “Referral and Services in a Medical Social Work Department,” Social Service Review 35(3), September 1961, pp. 263-264. Wax, John. “Developing Social Work Power in a Medical Organization,” Social Work 13(4), October 1968, pp. 62-71. ______ “Power Theory and Institutional Change,” Social Service Review 45(3), September 1971, pp. 274-288. ______ “Clinical Contributions to Administrative Practice,” Social Work in Health Care 8(3), Spring 1983, pp. 129-142.

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Part 7 Special Populations Contexts

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Introduction With the explosion of biomedical knowledge and the revolutionary advances in diagnostic and treatment methods, specialty practice, a continuous trend in medical care since World War II, has proliferated, divided, and subdivided into ever more discrete units of expertise. As social workers respond to the multiple and changing needs of clients of all ages, and ethnic, cultural, and socioeconomic status when medical and psychiatric problems affect their lives, core planning and practice principles are applicable universally when adopted for the particular characteristics of programs as diverse and specialized as home care, emergency trauma, in vitro fertilization, coronary bypass, organ transplant, pediatric oncology, renal dialysis, and care for chronically ill psychiatric patients, to name only a few. Program models developed for one specialized area of practice or one set of special needs have obvious relevance for work with similar populations and settings. Caregivers of patients with chronic illness and disability, whether they are young or old, have spina bifida or Parkinson’s disease, need a similar range of support, respite, and counseling services available over extended periods of time to help them in their accommodation to long-term social dislocations. Thus social workers in many settings can review the reported experiences

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of their colleagues who serve special populations for program ideas with potential for adaptation and replication. As health care technology expands, new populations and new contexts for social work practice emerge. Out of new technologies that provide life-saving treatments for the acutely ill, such as trauma victims, premature infants, and even the unborn in embryo states, new populations develop whose special needs challenge social workers to design new approaches and adapt traditional ones. For older chronically ill patients, current policies, implemented through the PPS program, shift the focus of care outside the hospital to home and ambulatory care systems. Different models of continuing care such as home care, foster care, and institutions for long-term care need to be revamped to fit better with basic quality-of-life issues. A range of potential models is needed to assist clients with their management of social needs over a continuum of time, as needs change. In addition to those populations whose special needs derive from their prolonged survival in the face of chronic illness and disabilities that require complex, exhaustive, and exhausting medical care, other groups have psychosocial needs that derive from ethnic and cultural characteristics. Sensitive social work practice can enable these clients to make better use of health care services that in all probability were not designed with concern for adapting their systems to patients of differing cultural roots. Chronically ill patients who are treated in settings that utilize high levels of technological intervention present particular challenges and pressures for staff. Rarely having the satisfaction of seeing a cure, they witness on a daily basis 942

their patients’ deterioration and the erosion of families’ endurance. Staff are in the position of initiating and administering rigorous medical requirements and may have little time, emotional energy, or ability to provide comfort and relief. Seven articles were selected to illustrate these issues. Berman and Rappaport’s report on patients with Alzheimer’s disease details the phases of this progressive, devastating illness and its powerful impact on patient and caregiver alike. It spells out the range of services needed and interventive methods that social workers can use to help patients and families adapt to the chronic and exhausting effects of this deteriorating disease. Applicability to other progressive conditions is identified. In their review of the nature of AIDS and its effects on its victims, Furstenberg and Olson highlight the generic and specific elements of social work practice needed by this growing population of patients and their friends, families, and staff caring for them. They map out an expanded role for social workers in the development of needed social policies for this population. The critical topic of cross-cultural and ethnically sensitive practice is addressed by Guendelman. Her analysis of social work activities responsive to the special needs of Hispanic families in a hospital setting illustrates the expanded professional knowledge and skills entailed in work with various ethnic and cultural groups. The special context of a reverse isolation unit treating children with life-threatening illness and immune deficiency 943

problems is the subject of Kutsanellou, Meyer, and Christ’s analysis of the role of social work practice in a particularly complex and technologically sophisticated setting. Although this article does not focus on practice methodology, it does define the need for a systems approach to practice, with differential interventions to help patients, families, and staff cope with the extreme stress of the medical situation. Since this paper appears to have broken new ground in reporting on social work in an evolving medical specialty, the authors turned to literature from fields other than social work in developing their analysis of a new and highly specialized area of practice. Moonilal’s article on trauma centers analyzes the multiple social work roles called for in situations of complex traumatic injury and high-tech lifesaving treatment. The article applies concepts of crisis theory useful in assisting patients and families deal with actual or threatened loss of life, limb, or function. Williams and Rice illustrate other aspects of social work practice with the critically ill, in this case with families of patients on intensive care units. The special nature of care on such units, their unique impact on families, and their needs for service are the basis for the comprehensive proposed plan of care, which includes crisis intervention and mobilization of multiple supports within the setting. Brochstein, Adams, Tristan, and Cheney’s article demonstrates an expanded role for social work developed within the context of primary care setting. The authors build on earlier work, such as that of Nason and Delbanco (1977), 944

to develop new definitions of social work services as an integral component of primary health. A strong role for social work is further developed in the Clarke, Neuwirth, and Bernstein article included in Part 9.

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Social Work and Alzheimer’s Disease: Psychosocial Management in the Absence of Medical Cure Stephen Berman, ACSW Meryl B. Rappaport, LCSW At the time of writing Stephen Berman, ACSW, was Assistant Chief, Social Work Services and Coordinator, Extended Care Services; Meiyl B. Rappaport, LCSW, was Coordinator, Hospital Based Home Care Program, Veterans Administration Medical Center, Palo Alto, Menlo Park Division, 3801 Miranda Avenue, Palo Alto, CA 94304. SUMMARY. Because the illness erodes and destroys an individual’s humanness and personality, patients and families affected by Alzheimer’s Disease have particularly critical needs for help with its psychosocial sequelae. This article develops a model of psychosocial management and details specific interventions to help patients and caregivers develop and maintain adaptations during the long course of the disease.

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Introduction Alzheimer’s disease, fifth leading killer in this country, destroys the human personality and creates social problems of magnitude. Sometimes referred to as the silent epidemic, it is the most frequent cause of irreversible dementia in an estimated 1.2 to 4 million Americans age 40 and older, including about half of the population in nursing homes. The statistical spread reflects different epidemiological studies (Thomas, 1983). At present there is no cure or medical treatment for Alzheimer’s Disease (U.S. Department of Health & Human Service, 1983). Recent investigations suggest biochemical changes, viral agents, aluminum intoxication, genetic defects, and changes in the immune system as possible causative factors (Schneck, Reisber and Ferris, 1982) but a specific cause is not known. The consequences of the illness are well known: gradual and unrelenting deterioration of memory, intellect, and self-care ability. “By altering, and, in some cases, destroying the personality, dementia strikes the patient at the core of his humanness, his ability to relate to the world around him” (Cath, 1978). With its history of helping the chronically ill mobilize inner and outer resources to cope with problems of living, social work is uniquely suited to the “case management” of Alzheimer’s disease. This paper defines social work practice with Alzheimer’s disease as psychosocial management in the absence of medical cure. The model described outlines social work practice within each of three phases. The phases, forgetfulness, confusional, and dementia, are not distinct with finite and predictable beginnings and endings, but reflect

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irregular and progressive deterioration of functioning over a period of time. The model gives the social worker two primary roles. In one role the social worker coordinates the interdisciplinary treatment of the patient, ideally as a case manager. Because the resources needed for optimal management of Alzheimer’s patients and family are frequently not in place, this ideal will be difficult to achieve in most health care delivery systems without significant changes in national policy for reimbursement for psychosocial support and programming for those with dementing and other chronic illnesses. Therefore, for the present, it is likely that the social worker, or several social workers over the course of time, will become involved with the family intermittently. The model presented here can help social workers at different entry points understand the psychosocial upheavals and issues taking place at that time. In the second role, the social worker is the direct practice generalist who gives a broad spectrum of psychosocial services to patients and families. Many of the principles and functions described in the model are applicable to other progressive dementing illnesses such as multiinfarct dementia, Pick’s disease, and Huntington’s chorea. Throughout the three phases of the illness, the social worker is instrumental in two areas: values clarification and working with the emotional impact of the disease. Value questions arise around specific issues which are noted in the paper. Where societal values are unclear, social workers need to assist families in clarifying their own values and making decisions consonant with them. The progressive downhill course of the illness 948

necessitates a keen sensitivity to issues of loss, grief and bereavement. The social worker plays a vital role in supporting the patient and family in working through anger, frustration, guilt and mourning they may experience. Counseling and grief work are key interventions to be implemented intermittently through the duration of the illness.

The Forgetfulness Phase During the forgetfulness phase (Schneck, Reisber and Ferris, 1982) which can last from one to ten years, the patient experiences subjective cognitive deficits. The major area of impairment is recent memory: there is a tendency to forget where things are placed, difficulty remembering names; the person starts to write things down in order to remember them. Family and social disruptions, increased marital conflict, employment problems, and patient abuse of alcohol and medications may occur. During this period of uncertainty, the major social work functions are to provide support and counseling to the patient and family, to facilitate an interdisciplinary work-up and to develop a psychosocial assessment.

Diagnosis Until the assessment and work-up are completed, there is no diagnosis of Alzheimer’s disease. All the symptoms and problems described mimic many other disorders which have to be ruled out in this “prediagnosis phase” before Alzheimer’s disease can be diagnosed (Easterly, 1981). The only time that a diagnosis of Alzheimer’s disease can be made with absolute certainty is upon autopsy (U.S. Department of 949

Health and Human Services, 1980). Because this diagnosis carries with it such a dismal prognosis, the primary care physician needs to take great care in evaluating the work-up before deciding that the patient has Alzheimer’s. The patient and family need to know that Alzheimer’s diagnostic work is a process in which the health care team backs into a differential diagnosis by systematically discounting all the other conditions and illnesses that might cause “senile” symptoms. In line with this, the initial social work task is to help the patient locate a primary care physician who is accessible, knowledgeable about dementing illness, and willing to spend the necessary time with the patient, family, the other members of the treatment team. The next step is to help them move through the tedious, frustrating, and embarrassing evaluation process which typically includes evaluation by an internist, a neurologist, a psychiatrist, a psychologist, and a social worker. The patient and caregiver need to receive help from the social worker in developing the emotional and practical resources to travel to many examinations and be asked a multitude of questions, some of which can feel humiliating. Because this is an exhausting experience, scheduling the evaluation over eight to twelve weeks can make it less hectic and fatiguing.

Psychosocial Assessment The psychosocial assessment, which takes place concurrently with the evaluation, is a critical part of the work-up since the decline of memory and intellectual functions characteristic of the irreversible dementias are also characteristic of certain

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reversible conditions that can be identified by the social worker. The following is an example: An 80 year old man living alone in a rooming house was referred for placement in a nursing home by his landlord, who thought he was senile and could no longer understand what people were saying to him. The social worker thought she detected a hearing impairment, later confirmed by an audiologist. His “senility” vanished when he was fitted with a hearing aid. This emphasizes the importance of reviewing sensory, psychological, emotional, and functional dimensions in the psychosocial assessment. Older persons with hearing impairments are frequently misunderstood as having poor understanding and poor memory. A person who cannot hear what other people are saying cannot possibly remember, understand, or respond to what is said. Too, malnutrition caused by a variety of psychological, economic and social factors sometimes causes symptoms which mimic dementia. The most common cause of forgetfulness, confusion, and disorientation in the aged is drug intoxication which can be reversed if recognized and treated (U.S. Department of Health and Human Services, 1980). An inventory of the prescribed and over-the-counter medication the patient is taking can be relevant. Frequently older persons accumulate medications from several different physicians and begin to use them in combination with each other without medical supervision. Although the “retired” comprise 11% of the population, they receive 25% of dispensed prescriptions. A recent study showed that about 70% of an elderly population used 951

nonprescription drugs without knowledge of the primary care physician (Graedon, 1980). Sleeping pills, sedatives, tranquilizers, antianxiety agents, and a host of other nervous system depressants are among the medications that have been most frequently associated with confusion in the elderly. The social worker is in a good position to alert the patient and family to the importance of bringing this information to the primary care physician. The most frequent psychological cause of cognitive impairment is depression, and depression masked as dementia (pseudodementia) is a frequent finding among elderly patients (Wells, 1979). Along with symptoms that mimic senility, these patients manifest clear depressive symptoms, usually have a history of affective illness, and exhibit relatively rapid onset and progression of cognitive disability. An excellent tool for differentiating pseudodementia from irreversible dementia is the Wells Comparative Table (Table 1). In depression the onset of symptoms is more precisely dated, the symptoms progress more rapidly after onset, and there usually is a history of previous dysfunction. The depressed patient’s complaints about cognitive losses are more detailed and specific than those the demented patient can describe. The depressed patient has a pervasive affective change and communicates a strong sense of distress, whereas the demented patient has a shallower affect and seems less concerned about his cognitive condition. The social worker trained in this task may complete such an evaluation or the patient can be

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TABLE 1 THE MAJOR CLINICAL FEATURES DIFFERENTIATING PSEUDODEMENTIA FROM DEMENTIA (Wells, C. Am. J. Psychiatry 136:7, July 1979)

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referred to a psychologist or psychiatrist. Because behaviors considered eccentric or unconventional but normal in younger people are often considered abnormal and evidence of dementia in older people, the psychosocial assessment should link current behavior with past life patterns, behavior, quality of relationships and family interaction.

Counseling When the diagnosis of Alzheimer’s disease is made, the focus shifts to helping patients and families absorb and deal with what has happened. Families need information from the primary care physician about the disease and its probable course as well as help in coping with the psychosocial problems the diagnosis brings. Easterly has described graphically the shock, the confusion, and the fear of a newly diagnosed patient, “There are so many unanswered questions I have to face. What will happen to my health, my spouse, my relatives, my savings, my world, my everything? What will happen to me?” (Easterly, 1981). The patient’s family faces a heavy burden once this diagnosis has been made. “It may mean a lot of physical work, financial sacrifice, and changes in roles and relationships while you are learning to accept the reality that someone you love will never be the same” (Mace and Rabins, 1981). During this time the social worker plans with patients and families for the individual or family therapy they will need, probably on an intermittent basis, either at the institutional site or by referral to a counseling agency. This is the time when the social worker begins to work with the patient and family as they look at their lives and plan for what lies ahead. Planning for the future proceeds at a pace in

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sync with patient and family readiness to face the implications of altered life. An early value issue families need to consider is whether care provision and decision making should remain the domain of the family, or be shared with formal sources of support. The social worker can offer some counter-balance to the sense of hopelessness and futility the diagnosis generates by helping patients and family understand that even after a diagnosis has been made, the rate of degeneration is variable and is partly dependent on the patient’s support system. Because the progression of the disease is highly idiosyncratic, there is no way to predict what an individual patient may still be able to do many years after the diagnosis has been made (U.S. Department of Health and Human Services, 1980). A recent review reports that the progression of patients from Phase I (forgetfulness) to Phase III (dementia) varies as much as ten years (Schneck, Reisber and Ferris, 1982). Consequently, in this first phase, the focus is on enabling patients to develop the social, environmental, and emotional supports which can keep the individual employed, mobile, and in a position to interact with others as long as possible. If engaged, families, friends, and employers can use social work support to help the patient perform to his fullest potential and maintain intact cognitive functions. Mr. C was a married man, top executive of a computer company, and supervisor of 35 employees. After two years of increasing memory problems and mild confusion, Mr. C was diagnosed as having Alzheimer’s disease. Mr. C’s work performance gradually deteriorated because of his forgetfulness. Although still oriented and sociable, Mr. C had to rely on constant note taking in order to remember conversations, details of recent transactions, and names of 956

close associates. After many months of this, Mr. C’s employer suggested he retire. This angered Mr. C who initially denied any problems and said he was too young to retire. In several sessions with him, the social worker helped Mr. C acknowledge his sense of loss and disappointment. He was then able to compare the financial and emotional pros and cons of retiring as opposed to seeking a less demanding job in the company. He decided to continue working and apply for a non-supervisory position. With help, he discussed his problems with his boss and the company agreed to reassign Mr. C to another job. This patient was helped to manage his problem so that catastrophic losses in personal worth, financial security, and social stimulation were avoided. Job reassignment represented a loss of status and was not easy but Mr. C was able to maintain a work role, financial support of his family, and relate to a variety of persons outside the home. He worked successfully at this job for eight years before he retired. During the forgetfulness phase, families should make business decisions, wills and conclude other legal business which must involve the patient before his judgement becomes too impaired.

The Confusional Phase Although the length of time it takes varies, patients with Alzheimer’s disease will gradually develop increased

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impairment of cognitive functioning until the confusional phase (Schneck, Reisber and Ferris, 1982) which may last from one to ten years, is reached. Initially, the patient’s cognitive deficit is particularly severe for memory of recent events and orientation and concentration are significantly impaired. Vocabulary is spared, although the patient will have some difficulty recalling appropriate words. The patient gradually gets worse in all of these areas and will have increased difficulty with both recent and remote memory and recognizing names and faces. Intellectual functioning, particularly abstract thinking, gradually declines. The patient becomes less able to discern common themes, essential differences or use good judgement. He cannot apply experiences to new situations or separate the significant from the trivial; ideas become meager and he is unable to grasp new ones (Roth, 1980). Self-care abilities will progressively deteriorate and the patient will find it more difficult to eat with the appropriate utensils, select appropriate clothing, and use the bathroom. The two major objectives of psychosocial management of Alzheimer’s disease in the confusional phase are developing care plans for the functionally impaired patient and preserving the caregivers and family. Even in the early stages of confusion, losses in memory, orientation, and social skills impair the patient’s ability to communicate and to function without supervision. Yet with guidance from others, he can still function in some areas. Persons living alone can no longer continue to do so. Then the social worker needs to help the patient come to terms with the need to live in a supervised setting. This may mean moving in

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with such family or friends available and willing to care for the patient, or placement in a boarding home, an adult foster home, or a nursing home, depending on the patient’s abilities and limitations. This decision raises a new value concern: should the physical security of the patient take precedence over his psychosocial needs? Each family has its own way of handling stressful situations and making difficult decisions. The social worker can help them to clarify value considerations and promote decision-making which is comfortable because it is consistent with the family’s values. Elderly individuals who have always lived alone may vehemently resist giving up their independence. When the patient’s cognitive functioning permits this, the social worker can help the patient make the transition from independent living to a supervised setting gradually, in stages, through the use of homemakers, meals-on-wheels, day care programs, and volunteer visitors in his own home.

Role of Caregiver The well being of the Alzheimer’s patient depends directly on the well being of the person who is providing his or her care (Mace and Rabins, 1981). Thus, the functionally impaired patient who lives with caregivers and families will need social work assistance in preserving this support system. As the patient has more difficulty in understanding others and in making himself understood, incidents such as home accidents, abuse of medications, altered sleep patterns, and wandering, increase. This puts a tremendous strain on the patient, the caregiver, the family and their interactions with each other.

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Members of families develop reciprocal relationships in which they share responsibilities and roles which ensure that the work of the family gets done and its stability is maintained (Kapust, 1982). Within this delicately balanced system, a stress in one family member affects everyone. Shifts in the traditional ways family members share work and relate to each other must occur because Alzheimer’s so profoundly alters the patient’s physical, mental, and emotional characteristics. The employed spouse of an Alzheimer’s patient may have to do the cooking and laundry as well as go to work every day. A wife may now have to take on the role of nurse and parent to her demented husband. Years of interactive patterns and precedents are undone. Psychosocial management requires that the caregivers and the patient are treated as one system. Ways of helping the patient are also geared to helping the caregiver and vice versa.

Optimal Living Arrangement The environmental design of the patient’s living quarters requires evaluation. The goals are to make the home safer and at the same time conserve caregiver emotional energy. Very few homes, apartments, condominiums, or group living facilities are designed for mentally or physically impaired persons. Living quarters need to be made safe to eliminate accident hazards in the location of heating and cooking appliances, stairs, excessive furniture, hot water taps, and steep embankments. If these adaptations are not feasible, a move should be considered while the confused person is still able to adjust. As the disease progresses and the patient has fewer cognitive skills, any environmental change, even minor

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rearrangement of furniture, can be upsetting, disorienting and disruptive to his functioning. The social worker alerts the family to potential safety hazards and suggests way of coping with these problems. It may be unsafe for the confused person to smoke when alone. Developing a relatively nonflammable smoking area and installing a smoke alarm helps reduce the danger and the supervision needed without restricting the patient’s activity completely. When the family has a patient who wanders, good management includes setting up a system such as placing bells on the doors or locks in unnoticeable places to reduce the risk of wandering or helping the patient obtain an identification bracelet inscribed with name, home address, phone number, and memory impairment. This increases patient safety and decreases family’s need for worry, vigilance, or search for a lost patient.

Social Activities The social worker can help the Alzheimer’s patient and family develop new ways to spend time together. The goal is to promote continued functioning as a couple for as long as possible. Previous pastimes need to be restructured to accommodate the patient’s cognitive changes and new activities may also be needed. Listening to music, reading aloud, dancing, walking, attending church, going on drives, or visiting a shopping center may still be possible in this phase. To provide stimulation without frustration, these activities should take into account the confused person’s stamina, tolerance for unfamiliar surroundings, and comfort with groups of people.

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Mr. and Mrs. J always enjoyed watching situation comedies on television. Even though Mrs. J no longer understood the story, she still enjoyed laughing with her husband and the laugh track. She still seemed to look forward to watching the shows with her husband. The ability to communicate with others about Alzheimer’s is a critical skill in the caregiver’s network building repertoire. Caregivers may feel embarrassed, resentful, or puzzled by some of the things the confused person may do in public and avoid such activities. The social worker provides emotional support to the caregiver’s feelings of alarm and anxiety that the patient does not always know what is expected, and is unable to control all of his actions. The caregiver may need help in developing and practicing explanations of the patient’s condition to others, and in achieving comfort in this necessary and painful task. Role playing may help the caregiver become more comfortable in explaining this disease to family and friends. Caregivers may be taught cognitive therapy techniques to remind themselves that the patient does not understand what he is doing.

Sexual Functioning The maintenance of sexual intimacy for as long as possible is important for an Alzheimer’s couple. It is one area that may still define the relationship as a marriage in which mutual satisfaction is possible (Mace and Rabins, 1981). Alzheimer’s disease varies in how it affects the sexuality of patients: some become sexually demanding, others lose interest in sex. The Alzheimer’s patient may have the desire and ability to make love, but may forget sex happened after it is over, leaving the

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spouse distressed. In some cases, neuroleptic drugs are used to reduce behaviors such as paranoia, combativeness, sleep disturbances, and hallucinations which make intimacy or sexual contact impossible.

Promoting Residual Functioning How can the confused person’s connection with the world around him be maintained? Some can benefit from structured cuing which stimulates long-term memory and evokes habitual patterns of functioning. Simple steps such as informing the impaired person where she is going and cuing her in on names and contexts (“Jane, you remember Mr. Smith from church”), may help the confused person feel more comfortable. Structured cuing, labeling, and signals can curb negative behaviors and help the confused person adopt new behavior patterns. Mrs. H would become agitated when her daughter left her alone to run errands. She would tell her next door neighbor that her daughter was missing and insist she call the police. Sometimes she would wander down the street looking for her. The social worker suggested her daughter place a note on the door stating where she had gone and the time she would be back. Mrs. H was told that the note on the door signified that her daughter was gone on an errand and not missing. Presence of the note was a cue to catch her mother’s attention and served to keep her indoors and reassured when her daughter left the house.

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Mr. S would constantly ask his wife when he could have another cigarette. She solved the problem by setting a timer and teaching him that he could only have a cigarette on cue when the timer rang once an hour. The social worker may role model several techniques for the caregiver to use in communicating with the patient. Although impairment increasingly prevents patients from understanding all that is going on around them, many of them remain sensitive to the emotional affect of others and retain some ability to express their own emotions of joy, fear, anger, etc. While they may not understand the complete content of a conversation they do comprehend the tone and understand parts of what is being said. The use of non-verbal gestures to augment words can be particularly helpful in conversations with the patient: a smile, eye contact, holding a hand out, and use of body position are methods to relate to persons who have problems with words (Bartol). In many cases a combination of these non-verbal techniques with continual stimulation, cuing, simplified sentences, and reminders make it possible for the confused person to relate to what is going on. As the patient gets more confused, caregivers will need assistance in making difficult judgments about the impaired person’s functioning. The family must decide when the confused person is no longer capable of driving safely, cooking independently, or being alone. Decisions which restrict the patient’s span of control and personal freedom can be difficult for the caregiver because they may not be easily accepted by the patient. Families may be reluctant to restrict the impaired person’s activities, and may feel guilty or upset when they do so. The social worker facilitates the family’s 964

problem solving processes of making sound though difficult decisions and dealing with the resulting problems. When patients forget to open mail, pay bills and lose bankbooks, caregivers have to organize searches for bank statements, insurance policies, income tax records, and legal correspondence. When the patient can no longer manage property or financial affairs the social worker can support the family work in the psychologically painful process of establishing a conservatorship or guardianship of both property and person so that the conservator can take responsibility for medical treatment or placement. Families need help to balance roles and responsibilities, to make decisions about how to distribute their time and energy and to arrange for regular respite periods. As the confusional phase progresses, the focus of work is on preserving the caregiving family unit. Families care for the majority of the Alzheimer’s patients in this country (Rabins, Mace and Lucas, 1982) and for most demented patients the family can be a comprehensive and successful multiservice agency. Thus, it follows that the social worker focuses on their needs and on helping family members maintain their physical health, emotional strength and financial solvency, and on strengthening the network of family, friends, and others who can provide strong social bonds and practical resources. Persons caring for demented patients are more likely to maintain their mental health if they have an emotionally intimate relationship with at least one other person. The social worker can serve in this role. Other significant sources of psychological sustenance are self-help groups of other Alzheimer’s families. Some support groups are sponsored by the Alzheimer’s Disease and Related Disorders Association, and others by hospitals, 965

community mental health centers, brain injury rehabilitation programs, and family service agencies. Regularly scheduled times away from the care of the confused person enables the caregiver to replenish diminished physical and emotional resources; they have been identified as a key factor in facilitating home care of persons with debilitating illness (Baulch, 1980). Sources of caregiver respite must be organized to maintain service to the patient in the absence of the primary caregiver, A resource inventory can be developed in which the caregiver lists all the tasks that might be appropriate for respite care and then matches these tasks with persons or agencies that might provide respite care resources. One neighbor might help with shopping while another might agree to look in on the confused person when the caregiver goes to a movie. The social worker supports the caregiver’s right to ask others for help and offers assistance to organize this supportive social network. The caregiver can convene periodic “caregiving discussions” with family, friends, and others in which caregiving responsibilities are divided up among the participants. This can create a team approach as well as a shared appreciation for the demanding role of caring for a confused person. Caregivers who have not had respite or time out for many years may need help in identifying an inventory of activities that will provide diversion and enjoyment. They may also need “permission” to take some time out to have fun. Recent research indicates that depression can be reduced if the caregiver can have four daily events they define as pleasant (Lewinsohn and Amenson, 1978). Help with scheduling these can be particularly useful with those caregivers who 966

overidentify with the patient to the extent that they consider their well being and that of the Alzheimer’s victim as one and the same. Agencies that offer assistance with nursing care in the home, chore assistance, occupational and physical therapy, and income maintenance can supplement the help of family and friends in making respite periods possible. Helping to preserve family financial solvency is a critical goal. Familiarity with each family’s financial situation helps the social worker make appropriate use of SSD, SSI, Medicare, food stamps, and tax assistance, tax shelters and disability insurance. Families often need social work advocacy to receive these benefits. Geriatric day care programs are a good resource for Alzheimer’s families. If the patient can adjust to day care, this gives the caregiver an opportunity to work, earn money and develop social contacts outside the home. Some mildly confused Alzheimer’s patients have reported positives about geriatric day care since it puts the patients in the company of others who have similar problems (Geiger and Berman, Jan., 1983). Throughout this confusional phase the social worker helps the family make continuing and appropriate use of the primary care physician as even a minor illness can exacerbate the impaired person’s behavior and create more confusion. Urinary tract infections deserve special mention since they can be responsible for incontinence that is reversible. Continuing medical care should include careful evaluation of new symptoms to determine whether a superimposed treatable illness is the cause. Since the confused person may 967

be increasingly unable to communicate what is wrong, the caregiver needs to learn the signs and symptoms to watch for: for example, rubbing dentures and pressure points can develop into complicated problems; drug intake needs careful monitoring since delirium is a common side effect of over-medication. As the confusional phase progresses, caregivers need continuing psychological support in dealing with the painful losses they experience as the afflicted person’s functioning declines. Caregivers may feel angry or trapped in the situation, and then feel guilty about these feelings. They may become depressed over the loss of friends, favored pastimes, and the isolation which results from the increasing demands of the caregiving role.

The Dementia Phase Alzheimer’s patients will ultimately deteriorate, sometimes over a period of many years, and move into the final dementia phase of the disease in a constant state of severe and significant decline. (S)he is severely disoriented, often to the point of mistaking a spouse for a parent and being unable to identify other family and friends. Behavioral problems such as paranoid ideation, agitation, combativeness, and psychotic-like symptoms may develop. Neurological disabilities, abnormal reflexes, incontinence, and wandering become more pronounced. The person eventually becomes non-ambulatory and bedridden as the brain no longer is able to direct many aspects of functioning. This phase has been called the “funeral that never ends” (Kapust, 1982). By this time Alzheimer’s patients

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have usually lost the unique personality traits which defined them as individuals, though many live on for years. As the patient requires help with all activities of daily living, activities to preserve the caregiver accelerate. The social focus is on helping spouses who are usually the main caregiver cope and adjust to the final change in the marital relationship. Since the patient can no longer recognize people, the other partner is faced with the dilemma of being alone but not single. The caregiving spouse needs help in redefining the marriage as a new relationship, with different rules and with a different person. Rabins, Mace and Lucas (1982) illustrate the moral, ethical, and spiritual issues this raises. One husband said “I will always take care of her but I’ve started dating again. She is no longer the person I married.” Another husband said “For me caring for her, keeping my promise, is most important. It is true that she is not the same but this too is a part of our marriage. I try to see it as a challenge.” Families must make difficult, painful decisions during this final stage of dementia as they try to achieve a balance between the responsibility to care for the patient and the need to maintain the strength of the family. Families who decide to try to manage demented patients at home may need assistance in developing daily structures and supports needed to care for persons so severely disabled. Nursing care is a critical service for the patient at this stage of the illness. This care should be supervised by a professional nurse through a home health agency. The nurse can train the caregiver or assistant in the functions of needed care. For 969

example, a regular toileting schedule may be established to help with incontinence; when this no longer controls the problem, disposable diapers may be used. Also, if possible, a regular schedule of in-home help through regular homemaker visits can support home management. Managing a demented person at home means that caregivers have to cope with the unexpected, jump from one job to another, and accept interruptions as a way of life. Rather than rely on memory, a patient care chart which tracks medications and nursing needs aids the family to stay in control of the situation (Baulch, 1980). It is also a tangible record of the care provided. A major issue is that the decision to care for the patient at home is reversible. Throughout this phase the social worker helps the family reevaluate whether the plan remains tenable and feasible. When the home care plan is no longer viable, the social worker should be active in helping the family change it. The social worker repeatedly serves as a consultant, providing crisis intervention and triage. When home management is not workable, the family must consider placement of the patient in a nursing home. Usually a complex interplay of physical, psychological, and practical pressures lead to the caregiver fatigue that necessitates placement. Mrs. Y had cared for her husband for seven years, the last three years of which Mr. Y had been incontinent and needed help with bathing and feeding. A home health aide who gave sixteen hours a week left because of agency budget cuts. No one else was available to help Mrs. Y who quit her part-time job. The income from this job supplemented the family’s limited pension income and provided an important source of social stimulation for Mrs. Y. 970

Mr. Y began waking up more frequently at night and wandering. Mrs. Y complained of severe anxiety, exhaustion, and dizziness. Her blood pressure elevated and she was no longer able to manage Mr. Y’s incontinence. She was very dejected because Mr. Y no longer seemed to know who she was. Mrs. Y wanted to place him in a nursing home but a daughter from Mr. Y’s first marriage, who lived 500 miles away, berated Mrs. Y for neglecting her duty. The social worker called the daughter, helping her realize the importance of visiting and seeing the situation first hand. The daughter did visit, saw her father and participated in family conferences with the social worker and Mr. Y. After this both Mrs. Y and her step-daughter could agree that nursing home placement was the only care alternative for Mr. Y. Caregivers served by one hospital identified these major reasons for placement of demented patients: (1) physically assaultive behavior; (2) increasing needs for physical care or medical care; (3) incontinence; (4) physical and emotional illness of the caregiver; and (5) lack of financial resources to purchase supportive services to maintain the person at home (Geiger and Berman, May, 1983). In addressing the psychosocial problems in the decision to place the demented person in a nursing home, the social worker integrates understanding of family dynamics and the needs of the patient with a knowledge of community resources. Sustained, supportive and problem-solving counseling is a pivotal need of families at this time. For the older couple, institutionalization may be the first separation in 971

years of marriage, and is likely to be a final one. Caregivers need help in coping with anger about experiencing this loss. Some need psychological support in working through the guilt of “abandoning” a spouse in a nursing home. Nursing home costs may drain a couple financially and mean a changed lifestyle for the healthy spouse. A caregiver who gives up a large home or apartment when the demented person is institutionalized faces relocation at a time when financial, physical, and emotional resources may be depleted. Loss of the caregiving role can leave a huge void in the caregiver’s life. The caregiver needs the opportunity to mourn once again the loss of the demented relative. This is essential since, long before dementia proves fatal, a psychological death occurs with the deterioration of the personality of the patient. Toynbee (1968) has said that the premature death of a human spirit in advance of the death of the body is more appalling than any premature death in which spirit and body die simultaneously. Social workers play an essential role in facilitating resolutions of this complicated and protracted mourning process. Grief work, supportive therapy and self-help groups are useful in facilitating the healing process (Kapust, 1982). The caregiving spouse often needs help in letting go of the caregiver role, in learning to limit visits to the nursing home and in becoming reinvolved in former activities and hobbies. The social work role here is to help the spouse develop a renewed sense of engagement in life. A new fit between person and environment needs to be developed, organized around wellness instead of illness. New patterns of living are needed 972

to alleviate the dysphoria that has probably occurred from years of caregiving for a demented spouse (Yalom, 1980).

Community Action Role for Social Workers Social workers can fulfill a vital community role as advocates and developers of services for the demented and their families. Organized respite services, geriatric day respite, day health programs, chore and companion services for this population are scarce, and there is decreasing coverage by private insurance and Medicare. As the social brokers of resources, social workers can identify gaps in services and work to develop alliances and political support for the creation of the needed programs. The Family Survival Project for Brain Damaged Adults in San Francisco and the Palo Alto Veterans Administration Medical Center offer programmatic examples of the directions such efforts may take. The Family Service Project for Brain Damaged Adults (FSP) is a nonprofit organization which helps those who care for adult victims of chronic and degenerative brain disorders. Its purpose is to build services where none exist, to assist families directly, and to be a public voice for those facing related emotional and financial problems. FSP offers services such as a clearinghouse of statewide and national information and advice for families and professionals, family support groups, family consultations to help plan and coordinate resources and services, respite care and legal and financial advice. Professional training, publications, conferences,

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speakers and technical assistance to organizations are also offered. The Veterans Administration Medical Center, Palo Alto offers a continuum of care for Alzheimer’s patients and support for their families. Interdisciplinary teams in the geriatric outpatient clinic, inpatient consultation service and Hospital Based Home Care offer full scale assessments to establish the diagnosis. The outpatient clinic offers continuing medical care and case management once the diagnosis has been established. The Elder Veterans Day Center transports Alzheimer’s patients to a program regularly offering day respite, socialization and recreational activities, health maintenance and service referrals; psychosocial support, family counseling and caregiver network building opportunities are also provided. Hospital Based Home Care uses an interdisciplinary team to provide coordinated, comprehensive short-term medical and psychosocial management services to Alzheimer’s patients at home. The patient and caregiver are viewed as the unit of care and receive assistance in problem solving and decision making around patient management issues, long term care planning, counseling and referral linkages. Separate support groups for Alzheimer’s patients and families are offered at this facility, as well as opportunities to participate in research on Alzheimer’s disease. An inpatient respite program provides time out to caregivers and 24 hour care to Alzheimer’s patients one week out of every eight. Finally, several long term care wards specifically care for Alzheimer’s and demented patients; support groups for relatives of nursing home patients assist in working through issues of role transition and loss. Further program development efforts are under way to meet other patient care needs. 974

Conclusion The social treatment of demented people and their families presents diverse and demanding challenges to our profession. It requires a full range of social work skills, including counseling and support; resource referral; case management; grief work; family therapy and group work; patient, professional and community education; political action and advocacy; program development; and research. These tasks require strength, stamina, flexibility, and creativity as we apply our helping skills to both patients and their caregivers who carry such depleting and draining social responsibilities.

Note Reprinted from Social Work in Health Care, Volume 10(2), Winter 1984.

References Bartol, Mari Ann, RN, Nursing Care of the Patient with Alzheimer’s Disease. Unpublished guideline, Veterans Administration Medical Center, Tacoma, Washington. Baulch, Evelyn M., Home Care—A Practical Alternative to Extended Hospitalization. Millbrae, California: Celestial Arts, 1980, 106. Cath, S. H., The Geriatric Patient and His Family: The Institutionalization of a

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Parent: A Nadir of Life. Journal of Geriatric Psychiatry, 1978, 7, 25-46, 125-146. Easterly, Warren, The Alzheimer Caregiver’s Disease. Unpublished guide, June, 1981. Geiger, Deborah and Stephen Berman, Respite Care, videotape produced by the Veterans Administration Medical Center, Palo Alto, California, January, 1983. Geiger, Deborah and Stephen Berman. Personal interviews with spouses of Alzheimer’s disease patients at the Veterans Administration Medical Center, Palo Alto, California, May, 1983. Graedon, Joe, The People’s Pharmacy—2. New York: Avon Books, 1980, 354. Kapust, Lissa Robins, MSW, Living With Dementia: The Ongoing Funeral. Social Work in Health Care, Summer, 1982, 7(4), 82. Lewinsohn, P. M. and C. S. Amenson. Some Relations Between Pleasant and Unpleasant Mood-Related Events and Depression. Journal of Abnormal Psychology, 1978, 87, No. 6, 644-654. Mace, Nancy L. and Peter V. Rabins, MD. The 36-Hour Day. Baltimore and London: The Johns Hopkins University Press, 1981, 139. Rabins, Peter V., MD, Nancy L. Mace, MA, and Mary Jane Lucas, RN. The Impact of Dementia on the Family. Journal of

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the American Medical Association, July 16, 1982, Vol. 248, N. 3,333. Roth, Sir Martin, Senile Dementia and its Borderlands. Psychopathology in the Aged. Jonathan Cole and James Barrett, eds., New York: Raven Press, 1980, 211. Schneck, Michael Κ., MD, Barry Reisber, MD, and Steven H. Ferris, PhD. An Overview of Current Concepts of Alzheimer’s Disease. American Journal of Psychiatry, February, 1982, 139:2, 170-171. Thomas, Lewis, MD, Chancellor, Memorial Sloan-Kettering Cancer Center. Testimony presented at a Joint Hearing of the House Energy and Commerce Subcommittee and the House Aging Committee, August 3, 1983. U.S. Department of Health and Human Services, Alzheimer’s Disease: A Scientific Guide for Health Practitioners (Public Health Service National Institutes of Health Publication No. 81-2251). November, 1980, 2. Wells, Charles E., MD, Pseudodementia. American Journal of Psychiatry, July, 1979, 736:7,896. Yalom, Irvin D., Existential Psychotherapy. New York: Basic Books, Inc., 1980, 482.

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Social Work and AIDS Anne-Linda Furstenberg, PhD Miriam Meltzer Olson, DSW At the time of writing Anne-Linda Furstenberg was Assistant Professor, University of Pennsylvania, School of Social Work, 3701 Locust Walk C3, Philadelphia, PA 19104. Miriam Meltzer Olson was Associate Professor, Temple University, School of Social Administration, Ritter Hall Annex, Philadelphia, PA 19122. SUMMARY. AIDS (Acquired Immune Deficiency Syndrome) is a new contagious disease for which no cause or cure is known at present. The majority of people who have contracted AIDS are gay men. This paper examines individual and societal responses to this illness and to homosexuality that create issues for social work practice. These are unique to AIDS and at the same time exemplary of issues in all of health care. General principles of practice are applied to the specifics of dealing with AIDS and social work tasks with patients, families and significant others, health care staff, the community and policy makers are identified. This paper is concerned with social work practice dealing with the health problem AIDS. It operates from the premise that general principles of social work in health care are applicable to the specifics of social work practice with people with AIDS and that there are lessons to be drawn from the

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AIDS situation that have bearing on social work practice throughout the health field. Because the incidence of AIDS has been highest in gay men, and because the lessons to be drawn come from the association of AIDS with this population, the focus of this paper is primarily on AIDS and gay men. Most of the ideas discussed, however, can be applied as well to the other groups contracting AIDS.

AIDS the Disease AIDS, Acquired Immune Deficiency Syndrome, is a condition in which there is a breakdown of the body’s immune defenses. As a result, individuals become prone to developing one or more serious diseases. The most common are Kaposi’s Sarcoma, a rare skin cancer previously seen only in older people; and a variety of severe infections, called opportunistic infections because they would not be serious in people with normally functioning immune systems. The most common of these is pneumocystis carinii pneumonia (PCP), but severe infections by viruses, fungi and parasites also occur (Philadelphia AIDS Task Force, 1982; Conte et al., 1983). AIDS was first identified and named in the United States in 1981, but the first cases had been seen in 1978 (Bazell, 1983). The cause of AIDS is presently not known, but current data point to a virus that plays some role in the development of the syndrome. It is thought to be a new disease, “to which human beings had never previously been exposed” (Bazell, 1983), but several already known viruses are also suspected.

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Ninety-five percent of AIDS cases in the U.S. fall into one of four groups: 1. Sexually active homosexual and bisexual men with multiple sex partners, who make up about 71% of all reported cases 2. Abusers of intravenous drugs, 17% of reported cases 3. Persons with hemophilia, 8% of reported cases 4. Haitians, 5% of reported cases (U.S.P.H.S., 1983) (There is doubt that being Haitian in itself is a risk factor: rather, poor methods of interviewing are thought to have resulted in Haitians’ denial of the other risk factors (Bazell, 1983; Altman, 1983; Sullivan, 1983) Based on available data, scientists have concluded that AIDS is not spread by casual contact, but is transmitted only through sexual contact with a person with AIDS, and through contact with tissues, blood or other body fluids of a person with AIDS. The incubation period appears to range from a few months to approximately two years. While there are treatments of varying efficacy for the cancers and infections, there is no cure for the underlying condition. Weakened by repeated overwhelming infections, most people with AIDS eventually succumb to one of them. Early observations indicated that a year and a half following diagnosis, 75% of the victims were dead (Bazell, 1983). As of February, 1984, 3500 cases of AIDS had been identified, of whom 1,400 had died (USPHS, 1984). This new, contagious, presently incurable disease has drawn a great deal of public attention and evoked a broad range of lay 980

and professional responses. Widespread concern about the disorder has firmly established it as a public health problem. However, as with most diseases, the concerns which shape the specific responses to the problem come from many sources. As with cancer, T.B., epilepsy, heart disease and others, responses to AIDS are affected not only by scientific information and rational appraisal, but by myth, superstition, stigma and their attendant attitudes and feelings. Because gay men are the primary group at risk of contracting AIDS, attitudes, beliefs and feelings about homosexuality have played a significant part in the responses to AIDS. Reactions have ranged from overt hostility to intense commitment to treatment and cure. Hostile responses have included outright expressions of hope that AIDS will wipe out the homosexual population, and belief that the disease is deserved punishment for the sin of sexual perversion, brought upon themselves by those who, choosing to engage in illicit sex, forfeit any claim to society’s concern (Morgenthau et al., 1983; Beauchamp, 1983). Other rejecting responses have been made under the guise of concern for the public health. The proposal made by Rev. Jerry Falwell, spokesperson for the “moral majority,” that all homosexual blood donors be registered (Murphy, 1983), the medically contraindicated transfer of an AIDS patient from a Florida hospital to San Francisco (Philadelphia Inquirer, 10/9/ 83) and the refusal of some hospital, home health, social agency and other personnel to provide services to people with AIDS are examples. At the other end of the spectrum from the hostile reactions to AIDS are responses which have come from among the gay population itself. The recognition that the largest group with 981

AIDS has been gay men and that the stigma attached to homosexuality negatively affected the quality of care of patients with AIDS generated considerable social activism within the gay community. In many cities, AIDS “task forces,” organized by gays and other concerned people, have formed patient care networks and support groups, raised funds, publicized health information and referral sources, and lobbied for proper care, research on AIDS and increased protection of the civil rights of gays and lesbians (Collins, 1983; McKeown, 1983; Byron, 1983). With the help of gay activists, concerned professionals and others, there have also been informed and informative responses in the media and the health field that have advanced efforts to understand and deal with the disorder and its effects. Television, newspaper and magazine reports as well as professional articles, workshops and symposia have focused attention on the multiple impact of AIDS. This attention has encompassed the progressively debilitating physical course of the illness, its emotional trauma, disruption of family and social relationships, employment and housing dislocations and financial hardships, as well as the stress which treating people with AIDS places on health care providers and the epidemic scale fear of AIDS both within the gay and the larger community.

AIDS as Phenomenon

a

Multidimensional

The critical circumstances of AIDS and the attention given to it vividly demonstrate a proposition that underlies all of social

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work in the health field, that health and health care are not just matters of biology and physiology, or of medicine and medical technology. The situation surrounding AIDS serves to bring into sharp relief that fact that every health condition, good health, illness and disability, is at once a physical, psychological, social, economic and political phenomenon. The politics of health involves more than governmental policies and regulations. Politics involves power relationships. Disparities in power among individuals and groups affect who gets how much of what resources and under what conditions to meet their health needs. Everything from the control that physicians may exercise over the information patients get about their own medical conditions, to poverty and racism which result in, among other things, higher infant mortality rates and lower life expectancies for the poor and minorities, speaks to the role of politics in the health arena. The deleterious effects of power inequities, when combined with the vulnerability to feelings of powerlessness which illness often evokes, makes politics a particularly significant dimension of health and health care. In addition to dramatizing that health is a multidimensional phenomenon, AIDS has also illuminated another principle basic to social work in the health field: that understanding of culture is essential in health care. Discussions of AIDS have emphasized the association between the disorder and the “gay life-style.” The term “life-style” itself lacks precise meaning, but serves generally as a popular substitute for aspects of culture. Our society is comprised of numerous subgroups with different subcultures. Each has its own set of norms, values, beliefs, customs and environments, some of which are 983

necessarily developed in response to pressures from the dominant culture, that bear on the health of group members. Such cultural patterns shape people’s definition of and susceptibility to health problems, their use of lay and professional health care resources, their access to services, their responses to treatment and more. The term “life-style,” when applied to gay men, refers variously to their sexual orientation, sexual practices and/or the social milieu. Gay men, estimated to be about 10% of the male population, are highly diverse in personality, age, race, ethnicity and socio-economic status. Some are married and have children (Bell and Weinberg, 1978). Yet, as members of a minority population unacceptable to the majority, they have had certain common experiences and a number of shared ways of dealing with them. One commonality has been a need for secrecy in work and/or family life to protect against discrimination and rejection. One response to this which bears on the situation with AIDS is that it has been through leisure activities primarily that many gay men have sought acceptance, companionship and sexual partners (Warren, 1974). Particularly in large cities, to which they have gravitated because of the greater possibility of keeping the different segments of their lives separate, bars (and baths to some extent) have served as social centers (Bell and Weinberg, 1978). In many communities, home ownership has been highly valued by gays for the privacy and protection it affords. Here, home gatherings have been important in providing opportunities for gays to meet one another (Warren, 1974). Associated with this pattern of socializing is also acceptance among many gays of casual sexual encounters and sexual activity with numerous partners. Even gays in stable couple relationships tend to regard sex 984

with others as less of a threat to their stability than do heterosexual couples (Bell and Weinberg, 1978). These aspects of gay “life-style” are implicated in the transmission of AIDS, because the number of people interacting sexually contribute to the spread of any communicable disease (Bazell, 1983). Indeed, there is some speculation that the frequent bouts with a variety of sexually transmitted infections may reduce the resistance of an individual when the AIDS-producing agent attacks (Sexual Medicine Today, 1983). Engaging in anal intercourse, with consequent opening of small lesions, is also thought to be an important factor in transmitting AIDS (Bazell, 1983; Seligmann and Gosnell, 1983). Other shared experiences also shape the response of the individual to his disease. Being gay affects the relationships and resources available for his physical and emotional sustenance, and the reactions by “straight” health care and other workers to him. The concern with the relationship between AIDS and the gay “life-style” can serve as a paradigm, then, for the concern of social workers with the role culture generally plays in health. Given the fact that AIDS, like all health conditions, is a multidimensional phenomenon, it follows that health care for people with AIDS requires, as does all health care, intervention into the complete system of interacting physical, psychological, social, economic and political forces. Social workers obviously cannot perform all of the necessary health care tasks, and cannot perform many of them alone. We will discuss some tasks that social workers are uniquely equipped

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to perform and others in which they play a vital part. Common social work tasks involve activities with patients, their significant others, health care providers, the community and policy makers.

Work with Patients Emotional Reactions of Patients Social workers in health settings, particularly hospitals and home health agencies, normally see people who have already come into the system for treatment of an illness or injury. They help patients deal with the physical impact of their disorder, with difficulties in gaining access to and making use of medical treatment, with the emotional reactions to their condition and with changes required by it in role performance and relationships with others. AIDS patients may share all these needs. The diagnosis of AIDS and its subsequent course place severe demands on the coping capacities of the patient. Suspected AIDS patients often endure a long period of uncertainty before the diagnosis can be made. People diagnosed with AIDS then face a usually terminal illness, with limited possibilities for treatment, which will probably proceed through repeated but unpredictable acute episodes over a course of several years. They will probably suffer considerable pain, debilitation, bodily change and possibly physical disfigurement, and eventual death. The youth of AIDS patients makes coping with this diagnosis particularly difficult and painful. The median age of people 986

with AIDS is 35 (NASWNews, 1983). For many, this is the first experience with serious, much less life-threatening, illness, shattering the illusion of immortality they may have held until this time. As a result, many respond with massive denial of the diagnosis or its implications (NASW News, 1983). Anger and depression are also common feeling reactions. Many sick people struggle with the question, “Why me?” People with AIDS confront the association of this disease with an alternative sexual orientation, usually accompanied by contact with many different sexual partners, both patterns severely censured by much of this society. Because social attitudes so often are internalized, many people with AIDS also experience guilt and self-blame. Those who have not yet fully accepted their homosexuality may experience even greater self-rejection. One social worker “says his patients have told him, ‘I’ve heard my whole life that I’m going to be punished for being gay. And now it has happened’” (NASW News, 1983). With the feelings about their sexual orientation unresolved, dealing with an illness that lends itself so easily to definition as a punishment presents a painful challenge to people with AIDS. These features complicate the normal lowering of self-esteem resulting from the stigma attached to all illness and from the sick person’s inability to perform usual valued roles. Related to the issue of comfort with his homosexuality, the person with AIDS may not have been “out,” i.e., public about his sexual orientation, in one or more of the arenas of his life. As his illness becomes known to others, he is forced “out,” and must face all the negative reactions to homosexuality which induced him to remain “in the closet.” 987

To add to these stresses, the AIDS patient often encounters isolating behavior from those around him. Illness, particularly severe illness, usually creates a sense of distance, difference or isolation. The seriousness of AIDS, coupled with its association with socially disapproved sexual behavior, and capped by uncertain risks of contagion often produces extreme isolation and ostracism. The person with AIDS may find himself avoided by associates in the workplace, friends and family members. Even intimate friends and lovers may distance themselves, and relationships may flounder under the challenges posed by this disease. Forced to face the resulting feelings of abandonment, to deal alone with the changes in his life and to make critical decisions without support, the usual coping mechanisms of the person with AIDS may be easily overwhelmed (Hausmann, 1983).

Powerlessness Under these circumstances, social workers may find the person with AIDS experiencing a profound feeling of immobilization and loss of control, loss of control of his body, his relationships, and his future. Other external factors in the course of his treatment do much to aggravate this sense of powerlessness. In the initial stages of the disease, patients can most easily be rendered powerless by a lack of information. During the diagnostic period, there is considerable ambiguity. Some physicians, in their effort not to label the illness as AIDS prematurely, avoid providing much information at all until the case is full-blown and the diagnosis unambiguous. The patients’ stress may increase even more as physicians order tests or treatments with little or no explanation of their purpose. Many of these tests are

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painful and frightening, and patients should be prepared for them. A San Francisco source reported: “Many patients have felt violated by having violent reactions to tests and treatments that they were not psychologically prepared for” (Shanti Project, undated). While some physicians are careful about giving all possible information and some are also scrupulous about encouraging the patient to exercise choice about undergoing tests and treatments, many are not. Often there are alternative treatments or diagnostic tests, which are never offered to the patient. Instead, procedures are decided on by the physician(s) without any explanation to the patient. There have even been instances when treatments, such as placing the patient on a respirator, were carried out even though the patient had specifically requested this not be done. Terminally ill patients often feel quite dependent on their physicians, who seem their last hope for any amelioration whatsoever. Under these conditions, patients may have trouble resisting or making demands, for fear that their physicians will abandon them. While all of these conditions are commonplace in the treatment of serious and terminal diseases, the lack of much previous knowledge of or familiarity with AIDS increases its mysterious character. For most people, information contributes to the emotional mastery of uncontrollable situations. Even the doctor’s acknowledging to the patient the degree of uncertainty can have an orienting effect. Other aspects of his treatment can further increase the patient’s sense of powerlessness. When hospitalized, the person with AIDS may find that services or treatments are delayed or omitted because nursing staff refuse to come into his room or make physical contact with him (Daley, 1983). 989

The usually complex responses patients have to dependence on hospital staff can therefore be further complicated by the increased confrontation with helplessness that occurs when needed help is not provided.

Interventions These various issues faced by people with AIDS and their responses to them differ, of course, in their particulars from patient to patient; thus social work interventions need to be tailored to each unique situation. But interventions invariably will call for affording the patient opportunities to exercise some autonomy and experience some mastery over his circumstances. Ventilation or discharge of the strong feelings of patients faced with a terminal illness may be the first and most pressing need the social worker has to help with. Continued attention to the patient’s affective responses can then provide assistance in the working through of denial, in the management of anger and in the cognitive processing of the events of his life. The social worker may also need to assist the patient with reality testing in relation to self-blame based on his homosexuality as well as with possible unresolved issues in accepting his homosexuality or being forced to make it public in areas of his life he had previously chosen not to. By assisting with devising solutions to the many problems created by the illness, the social worker can help the person with AIDS regain some sense of control over his life. The social worker may need to help him to partialize, i.e., to break 990

a large, complex and overwhelming situation into small, manageable tasks. She might work with him on adhering to regimens or diets, or support his work on a series of small decisions and plans. S/he may help him in gaining access to and paying for treatment or in dealing with health professionals. The social worker may also have to act to help the patient exercise as much control over his diagnostic workup and treatment as he wants. Direct and straightforward communication with the patient to encourage and support his efforts to communicate with physicians and other health care staff may be required. Rehearsal for such exchanges or the offer to be present during discussions between patient and physician to ask questions or help the patient ask questions and review afterwards may also be indicated. The social worker also has to advocate for the right of the patient to participate to the maximum degree in the decisions affecting him, and to have his wishes regarding treatment adhered to.

Planning Periodically or permanently, the person with AIDS may become unable to work, straining his financial situation. He may lack the resources to pay for long and costly care. He may become weak and unable to care for himself and his living situation may dissolve around him because of the stigma the disease carries. “Many AIDS patients who don’t require constant care have ‘no place to go,”’ and discharge following hospitalization is often problematic (Management Rounds, 1983). In New York City, which has had about one

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half of all of the cases of AIDS, it was not until December, 1983 that a nursing home agreed to accept a patient with AIDS (New York Times, 12/6/83). The social worker also assists the patient to prepare for the difficulties that lie in the future: continuing illness, impaired functioning and death. To facilitate this, the social worker can help the person with AIDS find and use needed resources, both within the health care setting and in the community. Planning for care following discharge may require referrals for financial and legal help as well. The disposition of property and the provision for loved ones may be sources of concern. As will be discussed later, there are possible conflicts that occur between the patient’s family and his lover, if he has one, and the social worker may help him to anticipate them. The patient might, for example, find it useful to draw up a will. In the larger cities, the social worker should be able to draw on the resources of the gay community and of local AIDS task forces. These groups, which include both health professionals and lay people, have raised money (the New York group raised several hundred thousand dollars). They have organized and trained groups of volunteers and “buddies” to reduce the isolation of people with AIDS (Collins, 1983). They provide assistance to the individual with AIDS as he becomes weak and debilitated, and needs help with the basic activities of daily living. In Philadelphia, the AIDS Task Force designates service managers who coordinate and advocate for services for individuals with AIDS. These volunteers remain close to the person with AIDS to monitor new needs as they develop (McKeown, 1983). Social workers within health care 992

facilities work out clear allocation and coordination of tasks with such service managers. In the cities where the larger number of cases of AIDS has occurred, patient groups provide another vital resource for reducing isolation and the sense of powerlessness. Where such groups are linked to AIDS task forces, patients may not only work on the issues discussed but may also be able to join in the social activities of the organizations and to further their experience of empowerment.

Work with Families and Significant Others Social workers often work directly with the patient’s family members, as well as with the patient. Family situations can pose many kinds of difficulties, but that of the AIDS patient may be particularly complex. As noted, many gay people keep their homosexuality from their family. Because family members share societal standards, gays may anticipate rejection or castigation by family members, or may know that their family would be pained by knowledge of their sexual orientation. Coppola and Zabarsky (1983) report that four out of five urban gay males interviewed for a 1982 marketing survey had not revealed their homosexuality to their families. Consequently, family members may face a dual crisis, having to deal with the disclosure not only of a diagnosis of terminal illness, but of the patient’s homosexuality as well. Under these circumstances, some families have been known to abandon their ties and withhold support from their family

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members with AIDS (Hausmann, 1983), while others remain involved. Whether separated from family by his difference, or simply having established adult independence, the gay person may have a stable relationship with a lover, and/or a well-developed intimate network of gay friends that serve as kin. A disease like AIDS presents a severe crisis for whichever “family” system the person with AIDS interacts with. Any catastrophic illness threatens the existing ways of meeting the emotional, financial or other needs of family members. The needs of the patient place new and often unfamiliar demands on those involved in his life. “Significant others” are called on to change important roles to deal with the changed situation, and often, to develop new coping skills. In this situation, as with patients, social workers need to encourage and support the ventilation by family members of their own strong feelings of pain, anger, grief and fear. As they do with patients, they need to help family members to mobilize their strengths and capacities to deal with the situation. With intervention, some of the retreating network members may be helped to remain engaged with the person with AIDS. The social worker may have to assist the patient and his significant others to open or reopen lines of communication so that mutual problem-solving can take place. With the social worker’s support, friends and family members may develop new personal and interpersonal resources, find and use social and community services, plan for new tasks and work on old business. These are common social work tasks with family members, but the situation of the gay person with AIDS adds yet other complications. 994

In addition to the normal fears felt by the family of a terminally ill patient, those close to the person with AIDS confront a number of other fears. Parents uncomfortable with their son’s homosexuality may fear the revelation to others that comes with knowledge of the patient’s disease. The wives of those gay men who are or have been married face particularly difficult issues. All of the people close to the individual with AIDS are likely to experience strong fears of contagion, sometimes to the level of panic. Such fear aggravates whatever impulses the family, friends or lover may have to withdraw from the sick person. The social worker can play a critical role in helping the fearful person to become aware of his/her fears. Sometimes the fear of contagion covers other anxieties and it is important for the person to understand correctly the basis of his/her reaction. It is important that the social worker help family and other involved people to gain and use essential information about avoiding or minimizing the risk of contagion. Fears of contagion are not the only difficulty for the significant others of the person with AIDS. When he is hospitalized, his lover or his primary circle of friends may be excluded from visiting him by hospital rules limiting visiting, especially in intensive care units, to relatives by blood or marriage. They may also be harassed by hostile hospital staff. Unsuspecting or unsophisticated care providers may simply overlook the visitors’ feelings, or their importance to the patient. In this situation, the social workers’ role is to advocate for the access to the patient of all concerned with his care, “convinc(ing) hospitals to expand the definition of family to include the partners of gay AIDS victims” (NASW 995

News, 1983). It is also their task to interpret to other professionals the important role of these people in the patient’s life. In working with adult patients who are married, social workers sometimes encounter situations in which spouses and in-laws conflict over issues in a patient’s care. More commonly the two systems are articulated well enough to cooperate. Gay men, in contrast, may have kept their two “family” systems strictly compartmentalized, or there may be distance or resentment between them. Each circle may claim priority in visiting, in making decisions with or for the patient, or in communicating with the health professionals providing care. Social workers need to be available to help all who care about the patient to deal with their reactions, whether to a newly disclosed identity or to the diagnosis. Social workers may need to help mediate between the patient and the two kin networks, and between the family of origin and the family of lover or intimate friends. Most importantly, the social worker needs to be concerned with helping those who care but are in conflict to move beyond their differences to attend to the needs of the patient and to identify tasks they can each carry out, resources they can offer and ways they can work together. The help family members give patients, “(the) strong commitment to their care and nutrition,” seems to be a crucial factor in the length of survival of the person with AIDS (Hausman, 1983). To this end, techniques such as bringing together the whole network of friends and family can be most productive. As with patients, groups for family members are a resource for support and mutual problem-solving. Again, where AIDS task forces are 996

organized and family groups linked to them, relatives have also been able to join in social action.

Work with Health Care Staff Health professionals and health personnel, like other people, have strong feelings, attitudes and beliefs about health and illness. Some react emotionally or negatively to specific diseases or specific groups of patients. Social workers commonly work at solving problems in the relationship between patients and the health care staff treating and caring for them. Dealing with patients with AIDs can arouse two particular sets of problematic feelings: fear of contagion and rejection of the person not only for his disease, but also for his homosexuality. As noted earlier, medical personnel have been reported to refuse to treat or even enter the rooms of AIDS patients; caretakers leave meal trays at the door of the hospital room; service people refuse to accept anything handled by someone with AIDS (Hausman, 1983; Japenga, 1983; Starr and Gonzalez, 1983). One doctor interviewed said he had been washing some of his AIDS patients, since the hospital aides assigned refused to do the bathing (Collins, 1983). These problems have occurred even though there are clear, well-defined guidelines for health care personnel for protection from infection (Conte et al., 1983), which are the responsibility of the hospital administration and medical staff to implement. Some health care staff condemnatory of homosexuality communicate to the patient their blame of him for his illness and their view of the disease as a just punishment for his variant sexual behavior. There are three

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needs in this situation: for clear and specific information about the disease and about homosexuality, for a chance to work through feelings, and for continued support when working with patients in a threatening as well as painful and stressful situation. Part of the social worker’s mandate, therefore, is to initiate or help design in-service programs to inform health facility staff about all known facts about AIDS. These efforts have to include transport, maintenance and other non-professional staff. These personnel carry responsibility for day-to-day patient contact, but are often omitted from special training efforts. Social workers recognize that preparation for staff is not solely a question of facts, but of helping people to raise to consciousness, express, and begin to work through their feelings and fears. Moreover, people have to deal not only with their fear of the disease, but with their attitudes about gay people, feelings they may not have had to face previously. Physicians with negative emotions and stereotyped attitudes may pose a particular threat to humane medical treatment and service delivery. Doctors control decisions about patient care and are the acknowledged authority and assigned leader for other health care personnel. We have already discussed the issue of communication with patients in an earlier section; there are other issues as well. Like other staff, physicians may fear contamination by the person with AIDS. They may also experience a threat to their sense of competence and mission betokened by the very poor prognosis for AIDS. Such experiences can sometimes result in unrecognized anger toward patients, withdrawal from them and their families, low 998

morale, or disregard for ethical standards such as confidentiality or the patient’s right to information. This behavior exacerbates the feeling of powerlessness of patients already debilitated and stigmatized. In collaborating with physicians and other staff, social workers generally are required to educate them about the characteristics and needs of patients. When dealing with health care staff, just as when dealing with patients or others, the social worker needs not only to identify problems but also to mobilize people’s strengths. By creating opportunities for ventilation of feelings, support from team members and the development of coping capacities, they make it possible for staff to treat patients competently and with compassion and commitment. Their relationships with others are important tools for these tasks. One further issue, that of confidentiality and privacy, may require the attention of the social worker. How the hospital handles information can greatly increase or decrease the control the patient has over who knows either his diagnosis or his sexual orientation. Social workers may need to advocate within the hospital to guarantee that communications, both formal and informal, within the hospital or health care facility are avoided which “broadcast… the patient’s diagnosis, medical condition, sexual orientation or personal habits” (Philadelphia Aids Task Force, undated). Existing hospital guidelines for protecting the confidentiality of patients with infectious diseases should be followed for notices posted on doors, the marking of specimens for lab work, etc. Where such guidelines are lacking or inadequate, this may become an area for advocacy. In this as in other issues, by finding and

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joining with other knowledgeable and concerned staff, the social worker can broaden his/her base of influence.

Work with the Community People in the community at large as well as the staff of social welfare agencies are also apt to experience the fear of illness and of ill people, hostility towards those with AIDS and ignorance of facts that health care personnel are susceptible to. The community’s negative responses to people with AIDS make patients vulnerable to the arguments over jurisdiction and “buck-passing” which commonly occur between health, welfare and housing agencies when dealing with “problem” populations such as mentally impaired aged, the homeless, etc. Since it is the social worker who is the person in the health setting with responsibility for dealing with social agencies, it is necessary that s/he advocate with the web of community services on behalf of clients, find and mobilize the needed resources, develop and use relationships with staff in other agencies, identify barriers to care, identify and document gaps in service and stimulate the development of new services. In addition to case-by-case problem-solving with community agencies, health care social workers may also have to take the lead in developing needed educational and support workshops for community health and social service workers who will be dealing with people with AIDS. In the cities with AIDS Task Forces, members of the gay and professional communities, including many social workers, have been carrying out some of these tasks. Health care social workers will therefore find

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already developed advocacy and community education efforts with which to collaborate. A larger task confronts social workers in challenging community attitudes. The media attest to the frightened and destructive reactions to AIDS. Coworkers have demanded that an AIDS sufferer be isolated or fired. Funeral directors have refused to embalm the bodies of those who died from AIDS (Collins, 1983; Starr and Gonzalez, 1983). There have been bills to incarcerate gays “until and unless they can be cleansed of their medical problems” (Beauchamp, 1983); in more than one state there have been proposals to “recriminalize” homosexual behavior (Morgenthau et al., 1983). The number of calls to health departments and to a federal AIDS hotline, still 5,000 a day (Seligmann and Gosnell, 1983; New York Times, 8/22/83), indicate the level of public anxiety. Indeed, the panic of contagion is not limited to AIDs patients, but is transferred by many to include all gay men. People call hotlines to ask if “they can catch AIDS from a bus seat, from food served by a gay waiter… (or)… from documents handled by a gay co-worker” (Seligmann and Gosnell, 1983). Newsweek reports: In cities like San Francisco and New York… there have been reports of gays being told to leave restaurants, being refused ambulance service and being evicted from their apartments, all because they have—or might have—AIDS. (Morgenthau et al., 1983) Social workers cannot be unconcerned with the impact that this heightened stigmatization carries for the entire gay population. 1001

Social workers have to take an active part in educating the larger community through public forums and community groups. Special efforts might be taken to reach groups who have expressed specific concern about contagion, such as undertakers or the police and firefighters, who are called on in emergencies to give mouth-to-mouth resuscitation. Educational workshops can inform these groups about AIDS, dispel myths about people with AIDS and interpret the needs of patients and families. They can also educate about and advocate for the rights of all gays. Again, where AIDS Task Forces are engaged in community activity, health care social workers can contribute to or call upon their educational resources.

Work in the Policy Arena The final task for health care social workers is to wield influence in the policy arena. Legislators and policy makers, like their constituents, may be ignorant of health care needs and share some of the community’s attitudes which have negative consequences for health care. Special efforts are needed to represent the health needs of poor or disenfranchised groups. Social work intervention in the policy arena requires advocacy, collaboration with other concerned health care providers and consumers and the development of coalitions for political influence. The effectiveness of such efforts to create political influence depends upon the visible presence of a constituency that is not only concerned but informed. Direct service health care social workers occupy a particularly advantageous position to gather data, case by case, on the impact of legislation and regulations on health and health care. Specific 1002

tasks social workers may perform such as writing letters or testifying at hearings also depend upon solid documentation. In dealing with AIDS, social workers need to keep close records of their observations in order to be able to document obstacles to treatment and gaps in service. They may need to develop guidelines for recording that assure the systematic gathering and compiling of information about poorly met or unmet needs. Social workers also need to keep informed and inform patients, families and other health providers of legislative and regulatory processes, of actions in progress and of organized efforts to advocate for the interests of those affected by AIDS. They need to join and assist others in joining lobbying efforts. The designation of $20 million by the Department of Health and Human Services (Philadelphia Inquirer, 8/18/83) and $5.3 million by the State of New York (Chira, 1983) for AIDS research are responses to political pressure. Continued pressure is needed so that funds are also allocated for health and social services. Based on the service needs they identify and their knowledge of health and social welfare systems, social workers may also be able to offer specific proposals for the allocation of funds or for changes in existing institutional programs and policies, thereby lending their special expertise to the effort to bring help to the AIDS situation.

Social Work and AIDS: Conclusions All of these social work tasks have in common the goals of minimizing the negative impact of AIDS and of mobilizing the resources of individuals and institutions to deal with

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AIDS. The foregoing discussion has pointed up problems resulting from negative attitudes, beliefs and feelings. The presentation of the social workers’ tasks is not meant to imply that social workers are less susceptible than others to the reactions described—that they do not fear exposure to a contagious disease, experience difficulty working with terminal patients or lack complete comfort and knowledge in dealing with homosexuality. Social workers differ, however, from the majority of others dealing with health in taking responsibility for developing and acting with self-awareness. In order to perform the tasks identified here, social workers must examine and bring into consciousness their own attitudes, beliefs and feelings, and the ways these affect their responses. Recognizing their own responses is necessary to assure that their interventions are guided by the clients’ needs rather than their own. Understanding their own negative reactions also allows social workers to be more attuned to the fears and defenses of others. Achieving and maintaining this self-awareness can be very demanding. Considering the complexities of AIDS, social workers should not expect to be able to meet this challenge alone. To assure self-aware practice, they ought to draw on individual and peer supervision, consultation, workshops, seminars and similar resources to examine feelings, increase knowledge, check out perceptions, work through concerns and garner support. The responsibility for self-awareness, as well as the other tasks described, involves the application of general principles of social work practice to the specifics of the AIDS situation.

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The experience with AIDS has also provided some lessons applicable to all health issues. Dealing with isolation and powerlessness is one example. Identifying and challenging discriminatory practices, exploiting the power of groups and linking patients and those close to them to organizations mobilized for social action are measures social workers can employ in a variety of circumstances. These reduce isolation and help people gain control over the conditions which affect their health and health care. Collaboration is another example. The AIDS task forces have brought together patients and health care providers, professionals and lay people. By reducing barriers between groups and joining common interests, they have created a greatly expanded network of resources for all sorts of tasks, from direct patient care to lobbying. They also helped to reduce some of the power disparities that exist in relationships among health professionals and between health care providers and consumers. These task forces can serve as a model for dealing with other concerns, or at least as a reminder that there are common interests that can be served through such alliances. Regard for the culture or “life-style” of patients is a third example. Attention to the vulnerability of the gay population to AIDS and to negative reactions to their differences is only one aspect of this situation applicable to work with other cultural sub-groups; recognizing and drawing on the strengths that exist within each group is another. Involving whatever people are close to patients and drawings on the assets of the 1005

subcultural community to which the patient belongs add to the total network of available resources. They also offset the alienation of disadvantaged patients from the “dominant-culture” health care system. The focus on multiple targets to meet health care needs is a final example of the experience with AIDS useful to social workers dealing with other health care problems. Recognition of the social context of AIDS and the simultaneous intervention with both individuals and institutions within that context is a striking feature of the response to AIDS. This approach is needed in all health care, but particularly in that for stigmatized groups such as the poor, minorities and the aged. As funding issues increasingly reverse the progress toward health care as a right, it becomes imperative that, as with AIDS, social workers practice in an advocacy mode. It is also necessary to move beyond a case-by-case approach to confront the politics of health care at every level.

Notes This paper is based on papers the authors presented at a conference on AIDS and Social Work: Issues, Information, Intervention, held September 22, 1983 at Graduate Hospital, Philadelphia, PA. The authors acknowledge the generous assistance of Robert Schoenberg, MSW, Roger Stephens, MSW and Joseph Tramo, MSW in the preparation of this paper.

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Reprinted from Social Work in Health Care, Volume 9(4), Summer 1984.

References Altman, L. Debate grows on U.S. listing of Haitians in AIDS category. New York Times, 7/31/83. Bazell, R. The strange history of a new epidemic. The New Republic, August 1, 1983. Bell, A. P. & Weinberg, M. S. Homosexualities: A Study of Diversity Among Men and Women. New York: Simon and Schuster, 1978. Beauchamp, W. A second AIDS epidemic. New York Times, 8/7/83. Byron, P. AIDS and the gay men’s health crisis of New York. Gay Community News, 8/6/83. Chira, S. Cuomo says state will step up AIDS research and assist victims. New York Times, 6/23/83. Collins, G. A moral epidemic. Vanity Fair, September, 1983. Conte, J. E., Hadley, W. Κ., Sande, M., and the University of California & the San Francisco Task Force on the Acquired Immunodeficiency Syndrome. Special report: infection-control guidelines for patients with the acquired immunodeficiency

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syndrome, AIDS. The New England Journal of Medicine, 1983, 309, 740-744. Coppola, V. & Zabarsky, M. Coming out of the closet. Newsweek, 8/8/83. Daley, M. AIDS anxiety. New York, 6/20/83. Hausmann, K. Treating victims of AIDS poses challenge to psychiatrists. Psychiatric News, August, 1983. Japenga, A. Life and death in the country’s first AIDS ward. Philadelphia Enquirer·, 8/7/83. Krauthammer, C. The political uses of a deadly disease. The New Republic, 8/1/83. Management Rounds, AIDS cited as major administrative concern. Hospitals, 8/1/83. McKcown, P. No AIDS cure so buddies offer comfort. Philadelphia Daily News, 8/10/83. McKeown, P. AIDS hot line: beacon in the darkness of panic. Philadelphia Daily News, 8/10/83. Morgenthau, T., Coppola, V., Carey, J., Cooper, N., Raine, G., McCormick, J. & Friendly, D. T. Gay America in transition. Newsweek, 8/8/83. Murphy, M. Newsmakers, Newsweek, 7/18/83.

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NASW News, Workers help AIDS victims handle stress, guilt. May, 1983. New York Times, 5,000 a day reach a federal telephone hot line, 3,000 more get busy signal, 8/22/83. New York Times, First AIDS nursing home admission, 12/6/ 83. Philadelphia AIDS Task Force. AIDS questions and answers, 11/10/82. Philadelphia AIDS Task Force, Infection control guidelines for health care and related workers, 1982. Philadelphia Inquirer, U.S. to add $20 million in AIDS war, 8/18/83. Philadelphia Inquirer, Mayor angry at transfer of Florida AIDS case, 10/9/83. Seligmann, J. & Gosnell, M. AIDS: fears and facts. Newsweek, 8/8/83. Sexual Medicine Today, Facing AIDS, September 14, 1983. Shanti Project, Psychosocial needs of AIDS patients, undated. Starr, M. & Gonzalez, D. L. The panic over AIDS. Newsweek, 7/14/83. Sullivan, R. City takes Haitians off list of high-risk AIDS groups. New York Times, 7/29/83.

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United States Public Health Service. Facts about AIDS, August, 1983. United States Public Health Service, toll-free AIDS hotline, 800-342-AIDS, 2/27/84. Warren, C. A. B. Identity and Community in the Gay World. New York: John Wiley, 1974.

Additional Resource Materials Bergstrom, W. & Cruz, L. Counseling Lesbian and Gay Male Youth, National Network of Runaway and Youth Services, 1983. (Includes recommended readings and national resources.) Fairchild, B. & Hayward, N. Now That You Know: What Every Parent Should Know about Homosexuality. New York: Harcourt, Brace, Jovanovich, 1979. National Gay Health Directory. National Gay Health Education Foundation, P.O. Box 834, Linden Hill, N.J. 11354. Siegal, F. & Siegal, M. AIDS: The Medical Mystery. New York: Grove Press, 1983. (Scientific. Written by M.D. and M.A.) West, D.J. Homosexuality Reexamined. Minneapolis: University of Minnesota Press, 1977. (Good basic overview of fact and fiction.)

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Woodman, N. J. & Lenna, H. R. Counseling with Gay Men and Women. San Francisco: Jossey-Bass, 1980). (Both authors are social workers. Includes annotated bibliography.)

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Developing Responsiveness to the Health Needs of Hispanic Children and Families Sylvia Guendelman, LCSW, DSW At the time of writing Dr. Guendelman was an Adjunct Assistant Professor in the Maternal and Child Health Program, 306 Earl Warren Hall, School of Public Health at the University of California, Berkeley, CA 94720. The material for this article is drawn from the author’s experience as Clinical Social Worker, Social Service Department, Children’s Hospital Medical Center, Oakland, California. SUMMARY. Admission to a tertiary care pediatric hospital is a stressful experience for the Hispanic child and family. The stress partially stems from the institutional barriers that conflict with the psychosocial needs of Hispanic families. This article identifies six psychosocial needs of Hispanics and examines related risks for coping disturbances encountered during the hospitalization process. These risks can be reduced by increasing health providers’ understanding of the psychosocial needs of Hispanics and by specifying culturally appropriate interventions. The development of cross-cultural committees, protocols, and hospital based Hispanic self-help networks represent distinct modalities for

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improving responsiveness to the health needs of Hispanic families in a hospital setting. Admission to a pediatric hospital delivering acute and specialized care is a very stressful experience for the Hispanic child and his family. The source of stress lies not only in the child’s diagnosis and response to treatment. It is also linked to institutional barriers which conflict with the psychosocial needs of Hispanic families. The purpose of this article is to identify psychosocial needs and problems commonly encountered by Hispanic families when their children are hospitalized. The author’s experience and observations suggest that Hispanic families are at particular risk for developing disturbances in family functioning and coping behaviors that hamper delivery of medical care. These risks can be reduced by increasing health providers’ awareness of the psychosocial needs of Hispanics and by specifying culturally appropriate interventions.

Background It is amply recognized in the health field that poverty and ethnicity are significant determinants of health status. Since Blacks are four times as likely and Hispanics are three times as likely to be below the poverty level as whites (U.S. HEW, 1977), it is not surprising that non-whites suffer more medical problems. Poor children are at a particular disadvantage. A child’s health is vulnerable to overcrowded and inadequate housing, violence, poor nutrition and other health standards of his community. It is also affected by the behaviors of his

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caregivers, their responsiveness to his health needs and the resources available to them for care. A failure or delay in detecting, reporting or following up on a health problem by a parent may result in errors of prevention or treatment. Similarly, barriers that prevent a family from obtaining adequate care can result in poorer diagnosis or more severe prognosis. In fact, according to Budetti (Budetti, Butler & McMannus, 1982) poor children’s greater medical needs can be partly explained because they receive less preventive care and enter the acute care system later than the non-poor. Late entry to specialized care systems leads to a more episodic, high-cost, high technology care. High technology pediatric hospitals serve a high proportion of indigent non-white children. For example, compared to other hospitals in California, the seven children’s hospitals throughout the state provide more specialized intensive care and a higher amount of care to indigent children. A higher proportion of youngsters are in the lower age groups, requiring more medical and patient care assistance. They require more exacting rates and precise doses of medication due to lower tolerances of intravenous administration. Young children also need more psychological and social services to help them as well as their families cope with a stressful environment away from home and with the disruptions in normal growth and development. Although awareness of the psychosocial needs of children in hospitals is widespread, there is a tendency to overlook the multi-cultural needs of patients. Patients and families who have belief systems, language and cultural responses that differ from the mainstream are particularly vulnerable to 1014

encounter adjustment problems. Hence they require special attention from the health care providers. As part of an interdisciplinary team, social workers can make a significant contribution as change agents, helping health systems become more responsive to the needs of ethnic patients. The material for this article is drawn from the author’s experience as a Clinical Social Worker at Children’s Hospital Medical Center (CHMC) in Oakland, California. CHMC is a teaching hospital that provides a range of primary, acute and specialty care services to approximately 6,800 in-patients and 89,000 out-patient children a year. Between 55 and 60% of the patients receive Medicare (Medicaid). Approximately 20% of the patients are Hispanic, primarily of Mexican descent. They are predominantly from poor, working class families who have migrated to the U.S. in the last decade or two. Many are undocumented immigrants and face legal, economic and educational barriers to proper utilization of the health system.

Psychosocial Needs of Hispanic Families in a Pediatric Hospital The Hispanic child admitted to the hospital is usually accompanied by his family throughout the experience. It can be a source of strain particularly if certain needs are not acknowledged by the providers of health care. What are some of these needs?

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1. The Need for Maintaining the Family Together When children don’t feel well, they usually turn to their mothers for comfort. If in addition to feeling ill they are fearful of the unfamiliar surroundings and treatment, children normally turn to their parents for protection. Such behaviors are expected of hospitalized children. It is also expected that as they recover and become familiarized with the setting, attachment behaviors will subside. According to developmental theory, the older the child the easier the adjustment. However, frequently, this is not the case with Hispanic children. Not only do they seem to experience more separation anxiety, but they also demand continuous physical presence of the parent. Should the parent leave the bedside, Hispanic children get very upset. Very often, no other caregiver will be able to calm them down and they will not feel secure until the parent is back in sight. These reactions can be understood within the context of culture and specifically of first generation Mexican American families. Mexican American children tend to be very dependent on their parents, particularly on their mothers who are the primary caregivers (Falicov & Karrer, 1980). Children are less pressured to achieve, develop self-mastery and autonomy at early ages as compared to Anglo and Black children. Weaning from the bottle, toilet training and self-dressing skills tend to be extended several months beyond the average mainstream childrearing norms. Mexican American mothers value nurturing and perceive themselves as the main gratifiers of their children’s needs. Usually it is an external event, such as the arrival of a new

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child or entry into school, rather than an internal readiness which shifts parents’ expectations towards demanding more from their offspring (Falicov & Karrer, 1980). When a child is hospitalized, the mother’s need to offer comfort and protection to her child is strongly activated. She will cater to the child’s wishes, indulging him with food, candy and affection. She will turn down lodging arrangements that may distance her from her child. Any suggestions that prompt her to leave the bedside to seek respite are to no avail. Separation anxiety in the mother is notorious regardless of the severity of the child’s illness. In fact, insistence on separation from her child may trigger guilt reactions. The guilt is partly rooted in cultural and religious expectations. A woman’s self-image is closely tied to her role as nurturer of her children, rather than as a spouse or individual. A mother’s nurturing role is modeled after the Virgin Mary, a symbol of love and abnegation. Failure to live up to expectations of devotion to her children generates guilty feelings. Hospitalization, particularly when it happens far away from home, will separate the mother and ill child from the rest of the family. Almost always the mother chooses to protect the sick youngster and leave the other children behind. This split is a source of worry and ambivalence to parents, particularly when no suitable caregiving arrangements have been made. If the hospital visit is brief and not too far from home, the entire family may accompany the sick child. It is not uncommon for the school-aged siblings to miss school in order to remain and support the ailing one. Childrearing values prioritize cooperation among family members over individual achievement. In times of stress it is expected that the family 1017

will gather together and be cohesive. The sense of duty towards the family is valued beyond responsibilities towards meeting external obligations. This is often referred to as familismo (Hoppe & Heller, 1975). Spurred by this sense of obligation, the father usually accompanies mother and child to the hospital, although it is not expected that he partake in the child’s care. That is the role of the mother. The father is usually there to offer support in times of crises and act as a mediator and buffer between his family and the hospital. Family roles are often markedly stereotyped and boundaries are not easily crossed. The less acculturated to the American mainstream, the more apparent is this behavior in families. Fathers are looked upon as the authority figure and expect respect from their wives. They also expect to be involved in the medical plans and decisions pertaining to the sick child. Failure to do so may be interpreted as an attempt to overstep boundaries by their spouses or a lack of respect by health providers. If a father does not feel competent in acting as mediator he may bring a support person to help out, particularly for translation purposes. Other times, an older child who has a better command of English will perform this task. The interdependence among family members is strong and acts as a natural support system in times of stress. It extends to embrace compadres, relatives and godparents who may be closely involved in providing emotional, practical and financial assistance. This network plays a significant role in maintaining family stability. In situations where economic or legal constraints prevent a father from coming to the hospital, the network takes over. An older brother may take the place of the absent father. Other replacements are also

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in order: A “comadre” may fill the void left by a distant grandmother or take over the care of the children remaining at home while the family is in the hospital. The G. family’s experience is a good illustration. A.G., a three-year-old, was transported from Reno, Nevada for treatment of acute lymphocytic leukemia (ALL). She was accompanied by her parents who left their four other children behind, in care of a “comadre” who lived nearby. During the two week hospitalization period the couple remained faithfully next to A.G. spending the nights huddled in a narrow cot next to her bed. A.G. adamantly protested each time her mother left the room, while comfortably allowing Mr. G. to venture out. She often resisted the meals that her mother patiently spoon fed to her, accepting candy instead. As. A.G. improved Mrs. G. began to leave her bedside at naptime. Her anxiety shifted towards her children left behind. However, neither she nor her husband was ready to alter this arrangement. Albeit exhausted and uncomfortable, they refused to sleep in the parents’ room, insisting that it would scare A.G. Mr. G., torn by the family split and work responsibilities in a restaurant, frequently questioned whether to stay. In the evenings, when A.G. was asleep they could call home to check on their children. Despite the upheaval, both parents knew that if they chose to leave A.G. behind they would break down. Their close presence was a necessary source of support. Separation events that jeopardize family interdependence or judgmental attitudes by health professionals that label families as over-protective, anxious or intrusive, hamper

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adaptive skills necessary for coping at times of heightened vulnerability.

2. The Need for Easy Access to the Hospital Families are very often faced with practical problems that impede access to the hospital. The lack of transportation, a phone or adequate child care arrangements are not uncommon among first generation Hispanics who are still uprooted from the mainstream socioeconomic system. A family may lack the financial means to purchase a car or may not qualify for a driver’s license due to functional illiteracy or language barriers. Since families tend to have many children, child care can become a big concern. Who will take care of them if there is no money to pay someone and the family is not eligible for homemaker services? Should the father stay at home and assume the caregiving role, thereby jeopardizing his job and failing to earn the hourly wage that feeds the family? Should he accompany his wife and child to the hospital, neglecting both his job and the other children? Arrangements can be made by turning to the natural supports if available to the family. But recent immigrants often lack such resources and experience tremendous challenges to overcoming barriers to hospital accessibility. They may leave the children behind unsupervised by an adult, while both parents accompany the child at the hospital; or else the father will work, care for the children and in addition commute long hours for a brief hospital visit. In the case of a 9-year-old child, admission for chemotherapy treatment disrupted the family’s routine in many ways. M.S.

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was one of six children who had migrated to the U.S. recently with her mother and siblings to join her father. He was an undocumented immigrant worker in a chicken farm about 200 miles away from CHMC, working long hours for little pay. When M.S. was hospitalized he remained at work. He was paid by the hour and thus could not afford to stop. Since his wife accompanied the child to the hospital, the CCS worker agreed to pay for a homemaker to care for the children ranging in age between 2 and 11, while their father worked. However, the homemaker was unreliable and on those days when she did not come Mr. S. had to stay home. This family had no network to turn to for support. By the end of the month an angry Mr. S. worried over not having enough income to cover the rent and escalating telephone expenses incurred by his wife in the hospital. In despair Mrs. S. went back home leaving her child alone and depressed. Over the weekend Mr. S. came to pick her up, driving all night so that he could arrive home and not miss work the following day. Separated families face difficulties contacting each other by phone. Unable to communicate in English, they often cannot express their needs to a switchboard operator or ward clerk. As a result, the call takes a long time to get through and not always reaches the appropriate party. The expenses increase alongside the frustration. Families complain that they don’t have access to each other even by phone. Some hospitals lack sufficient lodging facilities for families, so that the option to visit with the entire family is not available either. As a result families end up being very isolated from the natural supports with increasing feelings of anxiety and depression.

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3. The Need to Be Oriented to the Hospital Delivery of care in a high-technology teaching hospital can be very confusing and threatening to families. The setting involves sophisticated equipment, collaboration with a team of medical and allied health providers and a quick tempo. For Hispanic families, particularly the undocumented immigrant, entry to this type of setting creates tremendous dissonance. Delivery of care is so different from the neighborhood health center, private practitioner, healer or home based care. It requires an array of skills necessary to function in a complex industrialized society: reading and writing; proficiency in English; assertiveness to ensure that one’s needs are met; grasp of the billing system; basic concepts of biology and technology; a sense of the immediacy of time; a sense of how complex organizations function and of how mainstream society thinks and acts. As one parent visiting his infant in the Intensive Care Nursery described his experience: “Coming here is like entering a spaceship ready to be launched to the moon.” Obviously families cannot be educated in these skills throughout the course of hospitalization. But they can be supported through the cultural shock and be provided with basic tools to familiarize themselves with the hospital setting, routines and key resources. Brochures in Spanish, bilingual switchboard operators, guided tours and parent groups can be effective vehicles for bridging this gap.

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4. The Need for Social Supports When the natural support system is disturbed or fails to meet the demands brought forth by a crisis, some families become so overwhelmed by the complexity that they withdraw, becoming very passive or else stop visiting. Others respond by reaching out. They seek out health providers who can orient them to the setting, explain the diagnosis and health plans, relieve their anxiety, provide reassurance and comfort. Individuals naturally gravitate to those who express readiness to help, whether another patient’s family or a staff member. Barriers are insurmountable, however, when health providers cannot communicate because of language limitations or because they are out of touch with the problems that families are undergoing. In a teaching hospital, communication gaps are also spurred by the discontinuity of care. In a setting where nurses shift duties which do not necessarily accommodate the same children and where medical students and house staff rotate, Hispanic patients encounter a variety of providers who have many questions but may offer few and often discrepant answers to their concerns. Under such circumstances it is difficult to develop trusting patient-provider relationships that allow for open access to medical information, clarification and reassurance. Families become very isolated, feel helpless and confused. At a time of increased vulnerability they are forced into a dependency with undermines their ability to grasp medical problems and reinforces the cultural, social and cognitive blocks already existing both in the family and the hospital systems.

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5. The Need to Understand the Child’s Diagnosis and Treatment Usually diagnoses involving acute or chronic illnesses are not readily understood. It takes several opportunities for clarification before a family can incorporate the information. There is some evidence suggesting that working through a translator as opposed to communicating with the patient in his own language reduces the patient’s trust in the physician and compliance with the treatment. It can also delay proper understanding of the medical problem and intervention plans. Several health professionals have commented that Hispanics place more emphasis on trust than on technology. Therefore explanations derived from an open, warm, clear conversation are more readily accepted than those based on pure facts or technical explanations (personal communication; Martinez, 1978). Although a few families readily accept technology as a symbol of upward mobility, the majority are wary of sophisticated equipment. Non-English speaking Hispanics need to be able to communicate with providers who can speak Spanish. They also need to review consent forms in Spanish and have the opportunity to go over these with proper help. Very often families are given consent forms to sign without adequate translation or explanation. This is another indication of the abdication of responsibility that families are thrust into, increasing their sense of helplessness and dependency on the medical system.

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Some families express interest in descriptive information that they can keep. There is a dearth of brochures and health books in Spanish directed to the non-English speaking Hispanic to help them bridge the cultural and medical gap and encourage patient self-determination.

6. Need to Be Respected in a Non-judgemental Way Hispanics share some cultural beliefs that are not readily accepted among other health professionals. Certain health beliefs conflict with Western medicine. For example, a reliance on herbal treatments as opposed to drugs for curing certain ailments; or drawing on superstition and magical or evil forces as a source of causation rather than on scientific facts. A grossly underestimated cultural difference which often clashes with the mainstream culture is the attitude towards life and death. Hispanics, particularly those who are closer to nature and religion, have a tendency to accept death as the natural course of life. When death strikes or threatens to take a person away, one does not fight it, but succumbs to “God’s will.” This acceptance or surrender to “what is” conflicts with the basic tenets of science and the striving to save lives. Consequently a spontaneous acceptance of death is often met with resistance by the medical staff who subscribe to the power and efficacy of science and technology. Health professionals interpret this “fatalistic attitude” as defeatist, a symbol of “not caring,” not valuing human life which clashes with the medical model that prescribes doing something to fight death. At other times

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it is interpreted as “ignorance” and “primitivism” rather than a coming to terms with the unknown and therefore with life itself. This attitude of acceptance without struggle can also interfere with the expected compliance towards medical treatment or consent to treat. For example, a family can be hard pressed to accept the need for continuing painful treatment of a child with cancer if the chances of survival are low or if the pain outweighs the hope of survival. These are delicate choices colored by philosophical, religious and cultural orientations that require tolerance and appreciation by health professionals. Another source of cultural variation lies in the area of food. Much has been written about the hot and cold approaches that some Hispanic cultures profess towards food and its relationship to disease (Clark, 1959; Acosta Johnson, 1979). From this perspective food ingredients are classified according to hot and cold properties and their effects on balancing the organism and curing disease. There is another dimension to food which so far has received little attention, yet is more widespread. For Hispanics food has a distinctive social connotation. It is an expression of identity and connectedness. Food denotes a person’s regional-ethnic background and historical legacy which can be readily shared with peers in order to bring them closer together. Children are raised on ethnic food which excludes hamburgers and hot dogs. It is no wonder that they reject this food in the hospital. Parents respond to this apparent lack of appetite with anxiety and worry over the child’s condition. The need for an ethnic menu that is consonant with the culture and the availability of facilities for self-cooking can significantly contribute towards family 1026

well-being. Cooking opportunities are most welcomed by mothers who through this vehicle can express their competence, please their children, regain some control and thereby enhance their self-esteem. Respect for the Hispanic family also requires a recognition of the survival difficulties that first generation immigrants encounter. Many families are undocumented immigrants (MALDEF estimates that there are approximately 1.5 million undocumented immigrants in California) and live in constant fear of deportation. They feel particularly vulnerable in a complex, unfamiliar hospital which requires filling out forms and validation of documentation. Often families refrain from seeking or accepting help for fear of disclosing their status. They need strong reassurance to overcome this fear. A lack of compliance with medical orders or treatment suggestions is not always based on inadequate communication. Sometimes families lack the adequate economic resources to afford the medication or treatment, but are afraid to disclose it because of legal repercussions, pride or shyness. Families often do not qualify for Medicaid and do not have another source of insurance to secure payment. All these needs have to be incorporated in an assessment of Hispanic family functioning in a hospital setting. Nevertheless, by themselves assessments are not sufficient. Required is a concomitant institutional awareness of the role that the hospital plays in improving responsiveness to the health care needs of the families that it serves.

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Improving Responsiveness, Reducing Barriers Failure to respond to Hispanics in ways that are consonant with their cultural and social needs undermines their capacity to function in a hospital setting. Families are frequently placed in a double-bind situation in which they are expected to actively participate in their children’s care and health plans while at the same time are forced into a dependent role which reinforces helpless behaviors, offering few mechanisms for redressing this situation. Health professionals expect that families will actively cooperate with the medical team, consent to a treatment based on an understanding of the facts and comply with the treatment regimen. However, these expectations tend to be accompanied by institutional behaviors that deter Hispanic families from meeting such expectations. Often psychosocial needs are not recognized or not met. Consequently families experience barriers to proper utilization of hospital services and coping difficulties. Families exposed to this double-bind situation stand the risk of under-functioning or over-functioning in the hospital setting. In the first case, families learn that the way to adapt to an unreceptive yet controlling environment (since it expects compliance) is to react to it rather than act upon it. This coping style is referred to as learned helplessness. Those who cope in this defensive manner become submissive, quiet and non-demanding. They express a sense of helplessness, futility and apathy that lowers their self-esteem and thwarts their motivation to act. They often 1028

exhibit depression and withdrawal during the hospital experience. On the other hand, families who struggle against this dependency and want to maintain their autonomy show increased anxiety. They overfunction, persistently seeking out help and feeling frustrated or distressed when it is not forthcoming. They are susceptible to cues from providers encouraging active participation in their child’s care while confronting personal or institutional obstacles that prevent them from doing so. Consider for example a mother who is encouraged by the nursery staff to regularly visit her premature infant. She understands the importance of bonding and is prepared to visit. As the child’s stay in the hospital lingers, her access to transportation (i.e., availability of funds and a driver) begins to dwindle, she turns to health providers for help. When they have no solution to her transportation needs, she feels stranded, anxious and guilty. She owns expectations of good mothering, yet she cannot meet them. She may try to keep up with her baby’s progress by phone contact. However, language barriers may undermine such attempts. She may call different providers, getting varying responses, all of which increase her level of anxiety and feelings of inadequacy opposite her baby and the nursery team. Consider this other case in which a mother is requested to consent to a surgical intervention to be performed on her child. She agrees to sign the consent form without actually understanding the problem. She then tries to relay this information to her spouse without much success. They seek further clarification but by then the specialist and/or interpreter are not available. They anxiously try to locate a 1029

source of information. When they do, they find that the explanation is beyond their understanding. They persist on obtaining further clarification but are met with condescending or impatient remarks by health providers. From an institutional perspective, both under- and over-functioning styles interfere with the smooth delivery of medical and patient care. This interference gets translated into increased referrals and utilization of social and mental health services; more medical team conferences per child; increased frustrations for families and health providers; and a higher risk of deterring Hispanics from further utilization of health services. The overall result is an increase in cost of services. As long as these coping styles continue to be linked to individual weaknesses or deficiencies of Hispanics rather than stemming from a combination of family needs and institutional barriers, the issues will remain unresolved. Health institutions need to promote the child and family’s well-being by strengthening decision making skills in families and extending resources and opportunities to facilitate participation in health care. To the extent that families learn how to deal effectively with their problems, they experience more self-esteem (White, 1960). And to the extent that they learn how to make health promoting decisions, they experience a greater degree of control over their lives (Lenrow & Burch, 1981). For this learning to take place, a receptive atmosphere needs to develop in the hospital setting; one which addresses the culturally specific psychosocial needs described.

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Intervention Strategies 1. Shifting the Definition of the Problem from a “Patient Problem” to an “Institution Problem” This strategy aims at developing awareness among hospital administrators and health professionals of their responsibility in helping to create conditions that support family strengths. There is a growing recognition of the need for bilingual and bicultural staff in hospitals serving non-English speaking patients. Much remains to be done in terms of developing sensitivity among health providers to the cultural idiosyncracies of Hispanics. At Children’s Hospital (CHMC) a Cross-Cultural Committee was established to focus on ways to develop cultural awareness in providers. It has organized workshops on specific cultural issues and ethnic pot-lucks aimed at sharing food, music and cultural heritages. It also has introduced multi-ethnic material in the orientation to new employees. There is an increased awareness by health providers and administrators of the value of these innovations designed to improve patient care.

2. Developing a Hospital Protocol for Hispanic Patients This protocol includes a thorough medical and psychosocial history of the family. The information is obtained soon after admission and is reviewed periodically to assess changes in family functioning. The psychosocial intake includes the following information:

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• County and region of origin; number of years in the U.S. Degree of acculturation to the American culture. • Family structure and role distribution. • Ease of access to the hospital in terms of: child care, lodging, transportation, telephone, financial resources. • Availability and quality of supports, both within the family and in the community. Linkages with other health and social agencies. • Proficiency in English. • Understanding of child’s condition. Cultural beliefs associated with it. • Capacity to function in a complex hospital environment. • Legal status (with proper reassurance of no incrimination if family is undocumented). • Concurrent problems that the family encounters. If this information suggests that the family is at risk of developing difficulties in adjusting to the hospitalization, a referral to social service or the appropriate department should be forwarded for proper follow-up. The protocol ensures that each Hispanic family has the opportunity to establish a trusting relationship with at least one health professional who communicates in Spanish (if family is non-English speaking), advocates for the family’s needs and bridges the gap between the home and the hospital, connecting the family to appropriate services. The protocol also ensures that each family is provided with ample opportunities to understand the diagnosis and treatment

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plans. Consent forms must be available in Spanish and discussed in an open, supportive environment.

3. Developing a Hispanic Social Support Network The need for social supports is predicated on the crisis intervention model which indicates that people facing crises and transitions have a need to share and compare their reactions and beliefs with others. It is likely that in crises precipitated by illness, existing social contacts are insufficient sources of support (personal communication at AMA meeting, Berkeley, July 1981). Therefore new network contacts need to be mobilized who have personal experiences with the problems encountered. This need is even more imperative for families who live far away from the hospital and who experience cultural and social dissonance in addition to the emotional and cognitive impact of illness. Peers in social support networks serve important functions and there is accumulating evidence of the beneficial effects of support groups. Peers help to: (a) better understand the circumstances surrounding the life events; (b) exchange problem solving strategies; (c) support efforts towards change and (d) through social comparison they help reduce feelings of uniqueness regarding their problems and help establish new norms in the content of revised social identities (Gottlieb, 1981). Evidence suggests that social supports reduce stress, increase connectedness (Syme, 1975), enhance coping skills (DiMatteo & Hays, 1981) and facilitate adaptation to a crisis (Gottlieb, 1981; Caplan & Killalea, 1976). Social supports also allow for an integration of the self. It has a synergistic 1033

effect whereby each individual feels helped, reassured as well as wanted, and as a result wants to reciprocate. The individual then becomes “at one” with himself and his environment, with his body, mind and spirit, thus experiencing an inner transformation (Ferguson, 1980). The creation of a supportive network of Hispanics whose children have suffered life threatening, acute or chronic illnesses requiring hospitalization can enhance family functioning. The purpose of this network is to provide and obtain clarification and information, emotional support including active listening and the opportunity to vent feelings, reach out for physical contact, advice and concrete services, physical care, child care, lodging, transportation for running errands, financial assistance and any other resources that enable Hispanic families to overcome the temporary difficulties. The advantage of this self-help network is that it brings together participants who have experienced similar life crises, and share a common language, cultural values and attitudes, thus increasing the opportunity for development of connectedness and receptivity. Nevertheless, it requires careful screening so that it is made up of people who can provide support and resources without fear of being drained. Caution needs to be exercised when introducing this network to families in crisis. Some families could interpret this linkage as stigmatization. It can be particularly threatening when differences in social class backgrounds, extent of acculturation and the nature of the medical problem are not considered a priori. For this reason, an experienced Hispanic

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coordinator is more likely to be accepted by families who are invited to join the network. The author postulates that the establishment of this network can help families to regain a sense of control and achieve better integration to the health system. In sum, the recommendations that have been presented suggest that a commitment to enhance the well-being of Hispanic families can be cost effective. Prevention of coping disturbances means less crisis intervention and fewer professional services, particularly if it is built upon an increased level of understanding of the social-health needs of Hispanics and draws on self-help, active family participation and voluntary support networks. It may also yield organizational effectiveness in so far as it can bring about better cooperation from patients, improved physician family relationships and improved staff morale. Finally, it can foster consumer satisfaction with the health institution and promote its future use.

Note Reprinted from Social Work in Health Care, Volume 8(4), Summer 1983.

References Acosta Johnson, C. Infant diarrhea and folk medicine in South Texas. Texas Medicine, 1979, 75(1), 69-73.

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Budetti, P., Butler, J., & McManus, P., Federal health program reforms: Implications for child health care. Health & Society, 1982, 60(1). Caplan, G., & Killalea, M. (Eds.), Support systems and mutual help: Multidisciplinary explorations. New York: Grune & Stratton, 1976. Clark, M. Health in the Mexican-American culture: A community study. Berkeley: University of California Press, 1959. DiMatteo, R., & Hays, R. Social support and serious illness. In B. H. Gottlieb (Ed.), Social networks and social support. Beverly Hills: Sage Publications, 1981. Falicov, C., & Karrer, B. Cultural variations in the family life cycle: The Mexican-American family. In E. Carter & M. McGoldrick (Eds.), The family life cycle: A framework for family therapy. New York: Gardner Press, 1980. Ferguson, M. The Aquarian conspiracy. Personal and social transformation in the 1980’s. Los Angeles: Tarcher, Houghton, Mifflin, 1980. Gottlieb, B. H. Preventive interventions involving social networks and social support. In B. H. Gottlieb (Ed.), Social networks and social support. Beverly Hills: Sage Publications, 1981. Hoppe, S., & Heller, P. Alienation, familism and the utilization of health services by Mexican Americans. Job Health and Social Behavior, 1975, 16(3), 304-314.

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Lenrow, P., & Burch, R. Mutual aid and professional services. Opposing or complementary? In B. H. Gottlieb (Ed.), Social networks and social support. Beverly Hills: Sage Publications, 1981. MALDEF, 1977, According to the Mexican American Legal Defense Fund there were 1.5 Million Undocumented Immigrants in California in 1977. Martinez, R. Hispanic culture & health care: Fact fiction & folklore. St. Louis: Mosby, 1978. Personal communication: As expressed by a group of Hispanic health providers in a meeting with the American Medical Association, Health Education Division held at the University of California at Berkeley, July 1981. Sandler, A., & Chan, L. Mexican American folk belief in a pediatric emergency room. Medical Care, 1978, 16(9), 778-784. Syme, L. Social and psychological risk factors in coronary heart disease. Modem Concepts of Cardiovascular Disease, 1975, 44(4), 17-21. U.S. HEW. Health status of minorities and low income groups. Health Resources Administration, Office of Health Resources Opportunity, 1977.

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Factors Affecting Coping of Adolescents and Infants on a Reverse Isolation Unit Margarita Kutsanellou-Meyer, CSW Grace Hyslop Christ, CSW At the time of writing Ms. Kutsanellou-Meyer was the staff social worker on the reverse isolation unit, Memorial Sloan-Kettering Cancer Center, 1275 York Avenue, New York, NY 10021. Mrs. Christ was Assistant Director, Department of Social Work, Memorial Sloan-Kettering Cancer Center, and doctoral candidate, Columbia University School of Social Work. Preparation of this paper was partially supported by United States Public Health Service Grant CA 19267. The authors gratefully acknowledge the encouragement and support of Dr. Richard O’Reilly, Director, Bone Marrow Transplant Unit, and Mrs. Evelyn Cooper, Director, Department of Social Work. SUMMARY. This paper describes factors that affect the coping processes of adolescents with aplastic anemia and infants with severe combined immunodeficiency disease treated on a reverse isolation unit. The adolescents demonstrated a rich diversity of coping styles depending on the interaction of a variety of factors. Special stresses to other family members, such as the reactions of the child donor, are also highlighted. For the infants, the dyadic relationship with

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the mothering figure, the feelings of the family about the fact of genetic transmission, and the impact of isolation on the infant’s development are identified as important psychosocial variables in the infant’s adjustment. A multidimensional perspective such as that provided within a systems framework, which encourages an appreciation of the interactive diversity of all factors, is presented as the most useful approach to interventions. The treatment of such life-threatening diseases as leukemia, aplastic anemia, and severe combined immunodeficiency disease has greatly increased at least the short-term survival of many patients. The medical treatments used, however, are replete with extraordinary stress to patients, their families, and the medical and nursing staff. Bone marrow transplantation performed within the milieu of a reverse isolation unit is a treatment of this dimension. Bone marrow transplant in the last decade has become the curative treatment of choice for aplastic anemia and severe combined immunodeficiency disease and has resulted in disease free remissions in up to 18% of patients with chemotherapeutic resistant leukemia (O’Reilly, 1978; O’Reilly, Pahwa, Dupont & Good, 1978; Thomas, Fefer, Buckner, & Storb, 1977). Protected environments such as our reverse isolation unit have been increasingly used to decrease the incidence and severity of certain microbial infections particularly lethal to marrow transplant recipients immediately after radiation or chemotherapy. These radical medical treatments constitute an overt confrontation between a patient and his disease with an 1039

absolute recognition that his disease is lethal. Marrow transplantation is an extraordinarily aggressive approach that offers the potential of cure, but also a high likelihood of failure and death. Early failure and death complicates 30 to 50% of transplants in cases of aplastic anemia and leukemia. Recurrent leukemia may appear late in the transplant period of 20 to 30% of cases. A summary of the extraordinary stresses would include the reality of a lethal illness; immunosuppression, including in some instances chemotherapy and the prospect of total body irradiation in leukemia, isolation from normal body contact with others, and numerous uncomfortable and painful medical procedures. The enhancement of the survivor’s coping capacities presents a new challenge to the mental health professional.

Reverse Isolation Unit The reverse isolation unit at Memorial Sloan-Kettering Cancer Center was, prior to expansion, an intensive care facility equipped with four laminar flow isolation rooms designed to maintain a patient in a relatively germ-free environment. The rooms had no windows and were separated from the central nursing station by a large glass partition that contained an intercom system allowing verbal access between patient, family, and staff. A small corridor between rooms was utilized by staff or family to put on mask, hat, and boots before walking to the scrub area. Direct contact with the patient was possible only after a 10-minute scrub and the completion of sterile dressing, which consisted of two sets of gloves and a sterile gown. The procedure was obviously time consuming and limited the number of people entering the room. Although the diagnoses treated in a reverse 1040

isolation unit vary, as do the ages of the patients, what is common is the added stress of the isolation with its concomitant drastic reduction in normal emotional supports.

Population There are three different diagnostic groups admitted to this unit. The first consists of children born with severe combined immunodeficiency disease, hereafter called SCID. These are genetically transmitted defects. The second group are patients diagnosed with aplastic anemia, an acquired disease in which there is a failure of production of normal blood cells by the bone marrow. These are primarily adolescents and young adults. Leukemia is the diagnosis of the third group. At the time of this report, only three patients with the diagnosis of leukemia had been treated on the unit during the period covered. Leukemics treated with bone marrow transplants have been discussed elsewhere (Brown & Kelly, 1976; Holland, Plumb, Yates, Harris, Tuttolomondo, Holmes, & Holland, 1977; Pfefferbaum, Lindamood, & Wiley, 1977).

Pertinent Literature The available literature on psychosocial aspects of bone marrow transplantation and reverse isolation is sparse and derived from experiences with a small number of child and adolescent patients. Pfefferbaum et al. (1977) studied bone marrow transplantation in 19 children and adolescents. They correlated psychosocial factors of parent-child interaction with survival rates. No statistically significant correlation was’ made. The weakness of this study is that it focused on

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only one aspect of coping, namely, parent-child interaction, and related it to survival. We have been impressed that coping is affected by at least three groups of interacting variables: (a) stresses of different diagnoses, treatment, and disease course; (b) coping strategies as they are available to the patient at each developmental level and enhanced by his or her support system (i.e., family and nonfamily members); and (c) psychosocial interventions provided by medical and nonmedical staff. Because of the interaction of variables, statistically correlating an aspect of any one of these to survival rate could lead to insignificant findings. Brown and Kelly (1976) described the psychosocial implications of the process in six adolescents and adults. Adaptive measures were employed by patients at various stages of bone marrow transplantation procedures. In general, our patient population differed in that all the 19 patients were either children or adolescents. The importance of the developmental level of the child in determining the impact of the stress and selection of coping strategies proved particularly important.

Stresses on Patients with Aplastic Anemia Eleven patients, aged 2 to 22, were diagnosed with aplastic anemia (see Table 1). Their mean length of stay on the reverse isolation unit was 3.6 months. All but two patients had one bone marrow transplant, one had two, and another had three. Seven patients have been discharged and are doing well; two are still on the unit. The two 22-year-old patients,

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whose disease had a much longer history before treatment, died 8 months and 3 months after the bone marrow transplant. Table 1 Patients on a Reverse Isolation Unit

The most severe psychosocial stress for these patients is the stark isolation, particularly from normal body contact at the very time experimental treatment for their life-threatening illness is being undertaken. Holland et al. (1977) have emphasized that the lack of direct physical contact is the most distressing aspect of reverse isolation, producing a sense of loneliness and distance from others. Children and adolescents find their initial entrance into the isolation rooms frightening in a way different from adults. Children are more distressed by the separation from people, objects, and activities important to them than by the possibility of death. One 13-year-old patient refused entrance into the room for several hours until he could be reassured that he was not being abandoned by his family. Families also have misconceptions and anxieties about the degree of isolation. Even though they learn that they will be able to enter the room, they are extremely apprehensive about the possibility of contaminating the patient.

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We have observed a fairly typical sequence in the way a patient with aplastic anemia and the family react to bone marrow transplantation and isolation. A phase of optimism and hope, excitement, even euphoria, follows the family’s hearing about the treatment. A cure has been found. As the time for admission draws close, the patient’s and family’s denial is broken down by repeated descriptions of the following facts and procedures. Immunosuppression to insure engraftment involves high dose chemotherapy which results in nausea, vomiting, loss of hair, and increased susceptibility to infection. This emphasizes the severity of the undertaking. In addition, patients are made aware of the possibility of graft versus host disease, that is, an immune reaction by the marrow graft against the patient’s tissue resulting in severe skin reactions, hepatitis, diarrhea, and occasionally death. The high possibility of developing lethal pneumonia as a complication of the immunodeficiency induced and the graft versus hot disease process is also explained. Children, adolescents, and their families continue to express misconceptions about the transplant procedure itself although it has been carefully described to them by the physician and nursing staff prior to admission and during the initial period of treatment. For example, most express the belief that the treatment involves a surgical procedure removing a bone from the donor and transplanting it in the patient. Heightened feelings of aloneness occur when the adult or adolescent patients enter the sterile room. They express awareness of the “no return” aspect of the procedure. We have been impressed by one further stress that is developmentally specific to the adolescent. The loss of hair and other physical changes resulting from chemotherapy and 1044

medical procedures cause painful feelings of alteration in body image. This could be further complicated by the limitation in movement which is part of hospitalization. Several patients stated they felt that they looked quite different from their previous appearance and refused to look into mirrors.

Special Stresses to Other Family Members The psychological relationship of the donor to the patient may be another area of stress for patient, donor, and family. It has been observed that the adult donor has few strong psychological reactions to this procedure, especially when compared to the reactions of donors of organ transplants (Holland & Gerstenzang, Note 1). However, we have found that the child and adolescent donors often experience a variety of misconceptions and distressing emotional reactions. Careful attention to communication, such as giving concrete information on the facts about transplantation, is important for donor, patient, and family whether or not the patient survives. The donor’s awareness that if it were not for him or her the patient would die, can bring feelings of importance and pride, but also fear: What if the procedure is not successful? Will I be responsible for my sibling’s death? Will I get the same disease? These are frequent questions and/or fantasies that may be expressed. There are also numerous idiosyncratic fears of possible damage to the donor: Will I be able to walk? Will I be able to continue involvement in sports? One

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22-year-old donor worried that she would jeopardize her chances of having children. A Puerto Rican family expressed the concern that the 14-year-old donor’s pain following the procedure was genital pain and that her sexuality had been compromised in some way. A 13-year-old patient questioned whether he would remain small like the 8-year-old donor since he now had his blood. In addition to the emotional reaction of child donors, in three of the families other early adolescent siblings expressed anger and distress at being left out of such an important process. They resented that all the attention was focused on the patient and the donor. One 12-year-old burst into tears on the unit, saying that she felt neglected and left out because she was unable to participate in her sister’s recovery. We found that giving specific information and maintaining an openness to these kinds of misconceptions and reactions can be helpful. However, especially with children and adolescents, this is not sufficient. It is not always easy for patients and siblings to reveal these kinds of thoughts and feelings, whose suppression can have a destructive effect. Consequently, we have found that a more active exploration of thoughts and feelings about the illness and the treatment provides relief to the patient and siblings as well as important information to the staff.

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Coping Strategies of the Adolescent Patient with Aplastic Anemia The physically ill adolescent struggles with needs to preserve independence, autonomy, identity, privacy, and approval of peers. We have been impressed with the rich diversity in adolescent patients’ and their families’ ways of adapting to this experience. The adolescent’s need to know the details of the disease and its treatment is a well-documented phenomenon. This mastery serves to protect against feelings of helplessness and fears of loss of control. George, 16, exemplifies the use of control of the medical situation as both a defense and as a coping strategy. He quickly made efforts to take charge of his medical situation. He watched all indicators of his progress, such as blood count and bone marrow test results. He set goals for his improvement, for the change in his blood counts, as well as for the date of his discharge. At times he would allow a visitor into his room, at other times he would not. The staff were helped by the social worker to realize the value of the patient’s control of his situation. This was particularly hard because it threatened their own need to be in charge of such a dangerous medical treatment. Tensions were created by the conflict between his view and our view of the timing of his discharge. In marked contrast, John, a 14-year-old Greek patient, demonstrated very little need to control his treatment. His parents remained in Greece, communicating daily by 1047

telephone. In addition to attending school, John had worked in Greece on the family farm with his father. We surmised that he was not so threatened by the separation and the medical procedures because he had already achieved a level of independence. While in isolation, he was pleasant and cooperative, although not passive. He consoled himself by singing songs about his home and about separation from loved ones. He developed collaborative relationships with the staff that were mutually satisfying. All of the adolescents attempted to maintain privacy by keeping the lights off in their rooms, making it difficult for staff and visitors to see them. The patients complained at length about the use of masks and gowns by staff and family, and often insisted that people stand outside the glass partition so they could observe their faces rather than the indistinct, masked figures. When feeling better, most of the adolescents insisted on wearing their adolescent garb instead of hospital clothing, enhancing the maintenance of previous identities. The amount of contact that the adolescents maintained with peers varied. Where ongoing communication was possible, it became an important part of the adolescent’s efforts to cope with both illness and isolation. When there are a number of adolescents on the unit, they spend much of their day on the telephone with each other discussing the details of the day’s activities. The suggestion has been made that closed circuit television might be a way of providing group services to these patients. One 16-year-old boy ran up a $900 telephone bill during a 70-day stay in reverse isolation. He was athletically oriented and tended to rely heavily on peer acceptance for continued assurance of his worth and importance. In addition,

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his contact with peers shielded him from an overprotective mother whom he often refused to allow into his room. Another moving example of peer support of the adolescent was provided by a patient in our pediatric oncology service. While he was undergoing chemotherapy and losing his hair, his three best friends accompanied him to the clinic, all with shaved heads. In this way they tried to protect him from being singled out as different from them in a crowd.

The Effect of the Family Coping Style on the Adolescent Patient We were impressed with the impact of the families’ ways of handling independence and dependence on the adolescent patients’ adjustment to illness and isolation. George’s mother had become overly involved with him over the past several years because of his illness. Her extreme anxiety about him and her overprotective behavior seemed at times to promote excessively independent behavior on George’s part as a reaction. This counterphobic, sometimes dangerous behavior in response to an overprotective, guilt-ridden parent was also described by Agle and Mattsson (1976) in their work on hemophiliacs. Vicky’s family, on the other hand, had high expectations for her independent functioning. Both of her parents had worked outside the home for a number of years, and the children had become accustomed to accepting more responsibility. They visited Vicky regularly, but infrequently. Vicky easily substituted her need for her parents’ attention with the nurses, 1049

welcoming them into her room and forming close attachments with them. She was also a very studious person and independently involved herself in painting and other creative activities. Mary was one of nine children in a family that had recently moved to New York from Puerto Rico. The family moved because the father had been unable to find employment. They did not understand English well, nor did they comprehend the disease and its treatment. They thought that such a severe treatment meant that Mary would die, although this was not initially verbalized. From their perspective it was more important for them to put their energies into the survival of the rest of the family than Mary’s (in their view) hopeless treatment. In addition, they feared that the 18-year-old donor would lose his job if he participated. The mother could not visit because she was phobic about the subway. The family withdrew from treatment for a period of time until the social worker was able to work with them and correct some of these misconceptions. It was also important for her to help them with their very real social and economic needs. Mary became passive and compliant on the unit, watching television most of the time and asking few questions. She expressed fears of leaving the protection of the room and returning to the care of the family whom she was not sure she could trust. These are examples of three different ways that families responded to the disease and its treatment which further contribute to the diversity of the adolescent’s coping style. This interactive diversity includes the specific disease, its progress and its treatment, the personality structure of the patient and his or her past history, the social and cultural characteristics of the family, and current situational and 1050

environmental factors. The social worker’s role is to assess the relative importance of each of these and to select the most salient issues for intervention. The social worker’s task is to enhance the family’s natural coping abilities in this most unusual and stressful experience in order to optimize the patient’s and the family’s utilization of these stressful but potentially life-saving medical procedures.

Stress on Patients and Families with Severe Combined Immunodeficiency Disease Seven infants diagnosed with severe combined immunodeficiency were treated on the reverse isolation unit during this period (see Table 1). Five of these patients underwent fetal liver and thymus transplants. The other two had bone marrow transplants. The mean length of stay on the unit for these patients was 19.7 months. Five of the infants lived and are doing well. Two of them died of infections at ages 2 and 2 1/2 years, underscoring the tremendous importance of the technique of isolation. What to a normal child is a mild infection is to these children a life-threatening illness. In contrast to the diversity of adaptational responses observed in the adolescent patients and their families as described above, two common themes were highlighted by the infants in reverse isolation: (a) the impact on the family of the fact of genetic transmission of the disease; and (b) the importance of the developmentally specific dyadic relationship between the mother and the infant.

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The Impact of Genenc Transmission There are multiple forms of SCID. Certain types are transmitted as a homozygous recessive disorder with a defective gene from both parents. There is also a sex-linked recessive form which is transmitted solely by the female parent. In our series of 8 patients, there were six males and two females. One of the males clearly had the sex-linked form of the disorder. The possibility of a sex-linked disorder was highly probable in two others. The feelings about the genetic transmission of the disease are a most important stress on families of infants with SCID. Mattsson and Gross (1966) reported from their study of hemophiliac children and their families that “a crucial factor determining the common positive adaptive outcome seemed to be the mother’s ability to master her guilt over having transmitted the illness’ (p. 1355). Mattsson’s studies on hemophiliacs are the only parallel investigations on the impact of genetic transmission. We found that parents had more difficulty coping with the feelings about having transmitted the illness when they had another child or relative who had died of the same disease. In these cases the parents knew prior to conception of the second child that there were high risks involved for the child’s health. In our series, four of the eight families of children with SCID had lost another child or sibling to the same illness. Mrs. K. had two previous children die of this disease. It became clear to the social worker that much of her anxiety about Mark related to unresolved guilt, anger, and sadness

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about these deaths and that she subsequently displaced these feelings onto Mark. This also agrees with Mattsson and Gross’ (1966) finding that each of the mothers of the eight poorly adjusted hemophiliacs “identified her hemophiliac boy with a deceased relative (usually a hemophiliac) and saw her son as unrealistically vulnerable at all times” (p. 1355). It was also true for our families, however, that the fact of having previous children die of this disease alerted the parents to the symptomatology, making possible early diagnosis and treatment. Initially, all of the fathers tended to be less involved with the medical treatment than the mothers were. In addition, three of the fathers viewed their wives as primarily responsible for the birth of a sick child and therefore withdrew emotionally and physically, leaving most of the decisions and care to the mother. This placed an added burden on these mothers who had already felt guilty for having insisted on bearing a child even though the chances of the child’s being ill were high. Clearly, the role of the father, especially in relation to his adjustment to the fact of genetic transmission, was an important factor in the overall adaptation of the family to the presence of illness and its treatment.

The Importance of the Dyadic Relationship between Mother and Infant Because of the developmentally specific needs of the infant, the dyadic relationship with the mother is most important. For

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all the mothers, caring for their infant in this environment was a difficult task. The lack of privacy and freedom to come and go is quite different from that which is possible in one’s own home. The two mothers who had great difficulty in allotting sufficient time to the infant, and in using the time appropriately once there, were the mothers who were viewed as immature by the staff and who gave the most evidence of psychopathology. Compounding factors were present in the history of these two mothers. One had two children die of this illness, and the other had two siblings die of the same disease. In addition, neither of these mothers had emotional or physical support from their husbands. Two other mothers who had experienced deaths in their families from this illness and yet were better adapted to their infants and to the treatment situation presented an interesting contrast. These latter mothers had more emotional and physical support from their spouses than did the more poorly functioning mothers, and they seemed to have worked through their grief over previous losses and subsequent guilts more completely. In addition, they did not give evidence of prior psychopathology. All of the mothers made use of intellectualization and cognitive mastery as primary coping mechanisms. Several of the mothers came from rural areas with less than a high school education. After a year or more on the unit they demonstrated an extraordinary amount of knowledge of the disease and its treatment and a greater sophistication and knowledge about the world in general. In addition, they revealed life goal changes for themselves, especially desires for higher education and more challenging employment. This increase in knowledge with a consequent raising of

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self-esteem proved a powerful coping mechanism. This also highlights the growth potential in good adaptation to crises.

Reverse Isolation and the Developing Infant Developing infants in the sensorimotor stage (Piaget) or the autistic, symbiotic, separation individuation stage (Mahler) have none of the intellectualizing defenses of older children, nor the ability to express themselves in play therapy as do the preschoolers. The infant has unique needs to see, touch, handle, and smell. In a reverse isolation unit there are mechanical barriers (i.e., gown, mask, hat, gloves) to the normal physical contact between mother and infant. Effects of deprivations of normal stimulation are imposed by the setting, by medical procedures, and in certain instances by the absence of the consistent integrating mothering figure. There are two contradictory findings on the effects of long-term isolation of this kind on the developing infant. Simons, Kohle, Genscher and Dietrich (1973) identified a learning disorder and impairment of intellectual capacity in twins who were raised in isolation systems for 2.5 years. They attributed the mental retardation of both infants to the extended stay in isolation. Freedman, Montgomery, Wilson, Bealmer and South (1976), on the other hand, found that the cognitive and affective development of a child who had been in isolation for 52 months had proceeded along normal lines. They pointed out that the parents of the twins in Simons et al.’s study were known to be of limited intelligence and that the twin who was

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most limited in his functioning was the vulnerable child at birth with a number of early physical complications. They suggested that these factors could be contributing more to the twins’ intellectual deficit than the impact of isolation. Simons et al.’s isolator is described as a highly restrictive environment. On the other hand, Freedman et al. describe the environment of their patient as freer than most normal infant environments, with intensified stimulation and speech therapy. Therefore, Freedman et al. (1976) conclude that “the condition of reverse isolation when applied from birth through roughly the first four years is not per se incompatible with normal affective and intellectual development up to that point” (p. 603). Our findings from the series of eight patients support Freedman et al.’s conclusion. This is being reported in greater detail by Tamaroff, Kutsanellou-Meyer, Christ, and Straker (Note 2). Several of the children developed transient self-stimulating behavior, such as rocking and head banging, as well as speech difficulties. These markedly improved, however, when appropriate stimulation was provided or when the child was discharged from the unit. The most pathologic-appearing infant developed withdrawn behavior, echolalic speech, rocking, and head banging. However, the mother of this patient also presented the most disturbed mother-infant interaction. Mrs. K. demonstrated severe anxiety and anger in her behavior with Mark in the isolator room. Mark reacted to his mother’s tension by crying, rejecting her, and refusing to eat

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or take his medications. Even this child’s symptoms markedly improved, however, when his physical state improved, which in turn greatly altered the mother’s interaction. We speculated that the improved physical condition of the child allowed the mother to reinvest herself in the relationship. This was not possible when the infant’s survival was so much in question because this mother had already lost two other children to the same disease. This was even more dramatically shown by the fathers who generally demonstrated a marked increase in their involvement with the infant once they learned that the transplant was successful. It was our conclusion that it was not any one of these factors alone—isolation, medical treatments, severity of illness, quality and quantity of mother-infant interaction, genetic transmission, or paternal involvement and support—that prevented optimal adjustment. Rather, it was the interaction of a unique constellation of these stresses and factors affecting coping that presented unusual challenges for patients’ and families’ adaptive capacities and that contributed to a good or poor adjustment on the part of the infant. The social worker needs to understand’this interactive diversity in order to select interventive strategies.

Summary and Conclusion In this paper we have described factors that affect the coping processes of adolescents with aplastic anemia and infants with severe combined immunodeficiency disease treated on a reverse isolation unit. The adolescents demonstrated a rich diversity of coping styles depending on the interaction of a variety of factors. The specific developmental tasks of this

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age group, the interference to the resolution of these tasks presented by the illness and its treatment, and the various ways patients and families adapted to both were highlighted. We also explored special stresses to other family members such as the reactions of the child donor, which were observed to differ from adult donor reactions. On the other hand, the infants’ developmentally specific needs for intimacy with the mothering figure directed our focus with this group to that dyadic relationship. We explored the stresses on the relationship, especially the feelings of the family about the fact of genetic transmission of the disease. The differing opinions about the effects of reverse isolation on the development of the infant were presented. Our observations suggested that isolation per se is not incompatible with normal cognitive and affective development. Patients and families undergoing this kind of stressful medical treatment can best be understood and helped from a multidimensional perspective such as that provided within a systems framework. The temptation to use a unidimensional or linear model is especially strong within a medical setting. However, it is inadequate to deal with the interactive diversity of the psychosocial aspects of this situation. The systems concepts of multidetermination and equifinality provide more useful guidelines for interventions. The relevant factors to this stressful medical treatment have been described. The principle of equifinality suggests that the social worker need not address all areas of stress, but rather can select the salient issues for each patient and family. Specific interventions utilized with patients, families, and staff will be discussed in a later paper (Christ, Kutsanellou-Meyer, & Monk, Note 3). 1058

We were impressed that when it was possible to translate this unusual experience to patients and families in a way they could understand and integrate, successful adaptation was possible. Not only were they able to cope with the immediate stress, but in some instances they gave evidence of having achieved a new level of functioning.

Reference Notes 1 Holland, J., & Gerstenzang, M. Bone marrow transplant in identical twins. In preparation, 1978. 2 Tamaroff, M., Kutsanellou-Meyer, M., Christ, G. H., & Straker, N. Observations of the developmental functioning of three children treated from birth in protected environments. In preparation, 1978. 3 Christ, G. H., Kutsanellou-Meyer, M., & Monk, P. Psychosocial interventive techniques on a reverse isolation unit. In preparation, 1978. Reprinted from Social Work in Health Care, Volume 4(2), Winter 1978.

References Agle, D., & Mattsson, A. Psychological complications of hemophilia. In M. Hilgartner (Ed.), Hemophilia in children. Littleton, Mass.: Publishing Sciences Group, 1976. Brown, H., & Kelly, M. Stages of bone marrow transplantation: A psychiatric 1059

perspective. Psychosomatic Medicine, November-December 1976, 58(6), 439-446. Freedman, D., Montgomery, J., Wilson, R., Bealmer, P., & South, M. Further observations on the effect of reverse isolation from birth on cognitive and affective development. Journal of the American Academy of Child Psychiatry, Autumn 1976, 15(4), 593-602. Holland, J., Plumb, M., Yates, J., Harris, S., Tuttolomondo, A., Holmes, J., & Holland, J. Psychological response of patients with acute leukemia to germ-free environments. American Journal of Psychiatry, May 1977, 134(5), 563-564. Lipowski, Z. J. Physical illness, the individual and the coping processes. Psychiatry in Medicine, 1974, 1, 91-102. Mattsson, A., & Gross, S. Adaptational and defensive behavior in young hemophiliacs and their parents. American Journal of Psychiatry, 1966,122, 1349-1356. O’Reilly, R. J. Immunodeficiency, severe combined. In A. R. Liss (Ed.), Birth defects atlas and compendium (2nd ed.). New York: National Foundation, 1978. O’Reilly, R. J., Pahwa, R., Dupont, B., & Good, R. A. Severe combined immunodeficiency: Transplantation approaches for patient lacking an HLA genotypically identical sibling. Transplant Proceedings, 1978,10(1), 187-199. Pfefferbaum, B., Lindamood, M., & Wiley, F. Pediatric bone marrow transplantation: Psychosocial aspects. American Journal of Psychiatry, November 1977,134(11), 1299-1301.

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Simons, C., Kohle, Κ., Genscher, U., & Dietrich, M. The impact of reverse isolation on early childhood development: Two and a half years of treatment in plastic isolation systems. Psychotherapy Psychosomatics, 1973, 22, 300-309. Thomas, E., Fefer, A., Buckner, C., & Storb, R. Current status of bone marrow transplantation for aplastic anemia and acute leukemia. Blood, May 1977, 4(5), 671-681.

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Trauma Centers: A New Dimension for Hospital Social Work Jean M. Moonilal, LCSW, ACSW At the time of writing Ms. Moonilal was a Clinical Social Worker in the Emergency Department, University of California, Irvine, Medical Center, 101 City Drive South, Orange, CA 92668. SUMMARY. The development of the trauma center is one of the latest concepts in the delivery of emergency medical care. This paper proposes that social workers can play an important role in the initial management of trauma patients and their families. Through assessment, consultation, and direct intervention, social workers can provide a psychosocial component to trauma care. A prototype of a trauma center is discussed, along with case examples and implications for the role of social work. Trauma centers are an exciting new development in the delivery of emergency medical care. For hospital-based social workers, particularly those assigned to emergency rooms and critical care units, familiarization with the relatively new technologies and systems of the trauma center is important if there is to be full understanding and impact on the delivery of comprehensive medical and psychosocial services to patients

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and their families. A review of the literature reveals that social workers are just now being introduced to the purpose and function of the trauma center, and that the unique contribution of social work to the initial management of trauma patients and their families is in the process of definition (Epperson, 1977). The purpose of this article, then, is twofold. It will introduce the reader to the development, scope and operation of the hospital trauma center, and, secondly, it will speak to the innovative role of the trauma center social worker.

Background Trauma, generally defined as a physical injury caused by an external force, is one of the fastest growing specialties within the field of emergency medicine. Until recently, however, the systematic study and development of adequate emergency medical service systems (EMS) has been a largely neglected area of health care in this country. This lack of organized emergency care is particularly alarming when one considers that trauma is the third leading cause of death in the United States and the leading cause of death in persons under 45 years of age. Studies conducted in different areas of the country have demonstrated that as many as one-third of all accident victims die needlessly as a result of their injuries, and as many as 80% of patients who die of shock might have been saved if specialized services had been available (National Academy of Sciences, 1966; West, Trunkey & Lim, 1979). In this age of medical sophistication, it is an unfortunate irony that patients are dying in emergency rooms, not necessarily as a result of

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their injuries, but because they have had the misfortune of being taken to hospitals that are incapable of saving them. Most consumers of emergency care are unaware of which hospital in their community is, for example, best able to deal with severe bums, an amputated limb, or multiple stab wounds. In cases where appropriate and timely intervention can mean life or death, the patient, more often than not, has been at the mercy of poorly organized and partialized emergency health care. With the introduction of the Emergency Medical Services Systems Act of 1973 (PL 93-154), the Federal Government paved the way for the study, planning, establishment and improvement of local emergency medical service systems in order to significantly decrease death and disability rates (Harvey, 1975). Several states, including California, Maryland, and Illinois have already organized emergency services on a statewide basis and have designated trauma centers as the central part of this network. With the support of both the Federal Government and the medical profession, and with growing consumer demand for adequate emergency care, the systematic development of regional trauma centers would appear to be a nationwide trend (Montgomery, 1980).

Trauma Center In most trauma centers, target patients are identified as those who sustain multiple, life-threatening injuries which result in shock, excessive blood loss, severe respiratory distress or cardiac arrest. Victims of multiple trauma are usually products of motor vehicle accidents, shootings, stabbings, or suicide attempts and are generally in shock, unconscious, or

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near death. Most arrive at the hospital with paramedics—a few are brought in by family or friends. The highly specialized and calibrated system of emergency care found in the trauma center is designed to increase the survival rate and decrease disability for victims of substantial trauma. The term “trauma center” refers to a facility (typically, a large metropolitan hospital) which meets stringent criteria for specialized trauma care established by the American College of Surgeons, and which also has been so designated through regional health planning processes. In addition to basic life support services provided by the hospital emergency room, each trauma center is equipped with specialized resuscitation, surgical, and monitoring apparatus designed for immediate intervention and stabilization of the multiply injured patient. To be officially designated as a trauma center, each facility is required to comply with staffing and expertise standards, including 24-hour availability of trauma surgeons and anesthesiologists and of laboratory, radiology, and other diagnostic equipment, as well as round-the-clock availability of operating rooms and critical care units. Some trauma centers, such as the University of California, Irvine Medical Center, have the capacity to receive and treat patients suffering from severe burns or traumatic amputation of limbs and digits. In other large medical centers, notably the Medical College of Virginia and the Shock Trauma Center of Baltimore, Maryland, the concept of an integrated trauma service has expanded to include not only pre-hospital (paramedic) and emergency care, but an entire continuum of specialized staff and facilities to see the patient through the intensive, intermediate, and rehabilitative

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phases of treatment and recovery (Cowley & Scanlan, 1979; Maull & Haynes, 1977).

Role of Social Work The social worker is a member of the trauma center team, along with trauma surgeons, anesthesiologists, and a trauma coordinator (typically, a nurse). He or she is often referred to as the team “psychotraumatologist,” a title referring to a professional who specializes in the psychological aspects of trauma care. The tasks of the trauma center social worker are multiple and vary with each new case. This discussion will focus on the clinical aspects of trauma care. Clinical work includes initial assessment and consultation, crisis management, grief counseling and termination. The social worker is often the first person the family meets upon their arrival at the hospital. Therapeutic tasks that require attention include informing the family of the news of the trauma, dealing with immediate questions and concerns, preparing the family for their initial encounter with the patient, and interfacing between them and the treatment team. Being confronted with sudden and substantial physical trauma is a uniquely distressing experience for both patient and family. Not only is there no opportunity to prepare for the event, there seldom exist past experiences of a similar nature from which to derive effective coping mechanisms. Loss, either through mutilation, surgical intervention, or death, is generally inevitable, and irreversible. As Golden (1966) has observed, “perhaps nowhere else in his life does the physician enact his healing role amidst so much drama, tension,

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anguish, and consequence” (p. 5). Relatives, far removed from the frantic activity level being experienced by the patient, are silently and repeatedly challenged by the fears and fantasies which the traumatic event has ignited. This complex interplay of the external threat and internal “vulnerable state” is the focus of exploration and intervention (Golan, 1972). Due to the serious condition of the patient and the need for immediate medical intervention, the social worker’s initial focus is often on assisting friends and relatives through the crisis (Epperson, 1977). In the immediate aftermath of major trauma, the social worker functions as the primary hospital support system for families and as the interface between them and the treatment team. Solid crisis intervention skills are vital during this period if the family’s strengths and coping skills are to be identified and reinforced. As in most crisis work, the therapeutic stance taken by the worker is an active and anticipatory one (Golan, 1972).

Assessment Assessment is the basis for intervention. As Golan (1972) suggests, four areas of reaction merit exploration. These areas are: affective, perceptual-cognitive, behavioral, and biophysiological. Information about functioning in these different domains is obtained via direct questioning, personal observation, and collateral information. In order to intervene effectively, each individual’s intellectual understanding of what has happened, emotional and somatic responses to the event, familiarity with medical crisis, and behavior must be evaluated. While the urgency of the situation does not allow

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the leisurely period of appraisal characteristic of other settings, the social worker skilled in crisis intervention uses whatever time and information is available to formulate a tentative clinical impression from which to proceed.

Informing the Family It is the author’s experience that if relatives are left detached and uninformed, they will respond by feeling helpless, disoriented, and resentful. One of the first tasks of the social worker dealing with major trauma, then, is to discern, as much as possible and in as little time as possible, the circumstances surrounding the trauma itself. The more information that can be obtained about the patient’s condition and the mechanism of injury, the more one can anticipate how the family will respond to the initial news of trauma and what their concerns are likely to be. It is important to learn how seriously the patient has been injured and what his or her current condition is (i.e., stable, unstable, critical, expired, etc). What is the primary area of concern for the medical team? (Bleeding? Shock? Injury to major organs? Head trauma?) Was the trauma sustained in an accident, suicide attempt, argument, or during the commission of a crime? The social worker obtains this information from other members of the trauma team and may briefly interview “first responders” such as paramedic and ambulance drivers as well. Since it may be several minutes before a physician can leave the patient to speak with relatives, this time is utilized to secure a private place for the family to wait and to provide them with the facts surrounding the trauma. As the family may be in a state of shock, it is important to speak slowly and clearly, pausing when necessary to allow for integration of

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information and expression of feelings. The following is an example of an introductory statement: Mr. and Mrs. Smith, your son was brought to the emergency room by the paramedics after he was involved in a head-on traffic accident. The paramedics tell me that he was found unconscious at the scene of the accident. He has not yet regained consciousness. At this time, a team of specialized doctors are with him, trying to stabilize him and determine just where he has been hurt and how seriously. I will let the doctors know that you are here, and as soon as possible, I will have one of them come out and talk with you. An informal clinical assessment concerning the family’s dynamics, reactions, and coping styles is being formulated at the same time information about the patient is being shared with them. This assessment will enable the worker to determine how much and what kind of intervention is immediately required. A determination is made, for example, as to whether the patient and/or family has been through a similar crisis in the past, and whether or not they were directly or peripherally involved in the current traumatic incident. If other family members were involved, it is imperative to ascertain how much blame, if any, they assign to themselves, or others. If guilt is a predominant dynamic, it is explored early in the intervention. If the family is confused or needs clarification, this assessment is relayed to the medical team, and appropriate steps are taken to provide the family with the information needed to facilitate their understanding. It is most effective when the trauma surgeon and social worker function as a team, providing information and professional

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expertise in order that relatives and patients receive both technical and emotional care.

Dealing with Initial Reactions Reactions to such “bad news” run the gamut of human emotions. Relatives express feelings of disbelief, anxiety, and grief. Regardless of the particular response expressed, an atmosphere of empathie understanding should be created in which feelings can be explored and clarified. In one case, a mother, upon learning that her teenage son had been involved in a traffic collision, was relieved to know that he had not been at fault. Only when the issue of responsibility had been clarified was she fully able to redirect her concern from the event to the patient. Further questioning revealed that the patient had a history of vehicular carelessness, and that the mother lived with the constant anxiety that her son might be the cause of a serious accident. In another case, a wife became quite upset when she was told that her husband accidentally electrocuted himself on a high tension wire while billboard pasting. Immediately assuming that the accident was the result of the patient’s perfectionistic working habits, the wife spent several minutes alternating between anxious tears and angry accusations. She was encouraged to express and come to terms with these conflicting emotions before she was allowed to speak to her husband. In both of these cases, the social worker assessed the reactions to the news of trauma, intervened to facilitate the expression and initial management of conflictual feelings, and then consulted with the trauma surgeon in charge of the patient. This mutual consultation, while brief, has several 1070

important objectives. It advises the physician of the questions and interpersonal dynamics he or she will encounter when they meet the family. It also provides the social worker with updated information on the patient’s condition and treatment plan. Finally, consultation allows the social worker and physician to coordinate their respective interventions in order to maximize the effectiveness of each.

Preparing the Family to See the Patient Once the family has absorbed the initial shock of the trauma, they will typically request to see the patient. If at all possible, this wish is granted. Medical, rather than crisis intervention is rightly the priority of the trauma team; however, surgeons who have been sensitized to the emotional needs of their patients will advise the trauma social worker of lulls in activity that allow the patient and family time to spend with one another. It has been the author’s experience that even a brief contact between patient and family is tremendously reassuring to all. Before the family enters the treatment area, they are prepared for what they are about see. This is done in order to draw for the family a mental picture of what the patient will look like, and to desensitize them to this image. If the body has been altered in any way (e.g., color, lacerations, swelling, etc.) this fact is mentioned; the presence of medical equipment such as monitors, IV’s, or intubation gear is carefully explained as well. Staff working with the patient are advised when the family is about to join the patient. Comments and behaviors which help staff to cope with their own anxiety in an emergent situation are not necessarily appropriate in the

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presence of highly distressed relatives, and are temporarily suspended. Trauma staff in the author’s setting have become skilled in anticipating the anxieties and concerns of relatives specific to bedside treatment, and do what they can to accommodate and meet these needs. An intervention as simple as putting an arm around the shoulder of a distraught parent while treatment is being explained may do more than words to reassure the family.

Crisis Management The literature on crisis theory identifies crisis situations as having four basic components: a hazardous event, a vulnerable state, a precipitating factor, and a state of active crisis. The first component, the hazardous event, is defined as “the initial blow or internal change that triggers the chain of reactions leading up to a state of disequilibrium” (Golan, 1972). When viewed from this perspective, the sudden, unanticipated personal disaster of a major medical trauma is the hazardous event that precipitates disequilibrium for significant individuals and the family unit of the trauma patient. In multi-system injuries, where more than one vital function or process is involved, physicians often have to treat first, then diagnose. This state of medical uncertainty is often accompanied by a parallel emotion of uncertainty for the relatives of trauma victims. Relatives may have to wait several hours before knowing precisely what injuries the patient has sustained, the severity of the trauma, and its implications. Often, just when families are beginning to adjust psychologically to what they believe is a complete picture of the patient’s medical condition, the trauma surgeon will inform them of a new development or discovery that again

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throws them into a state of limbo. This emotional roller coaster may continue for several days, depleting the coping reserves of even the most functional of family members. The trauma center social worker engages in purposeful interactions with relatives in order to maximize their ability to cope with the crisis. As Epperson (1977) has discussed, the social worker’s ability to anticipate, understand and give therapeutic direction to the crisis reaction and concerns of family members helps to bring about successful “reconciliation” to what has happened. The primary goal throughout the early period of intervention is to keep the crisis clearly identified and in focus. By providing factual information about what has happened, what can be expected to happen and what role the family will have in the patient’s treatment, relatives are given some structure in what is otherwise a totally unpredictable situation. At the same time, an acknowledgement is made of any ambiguity that may exist and of the difficulty inherent in dealing with uncertainty. Faced with emotionally overwhelming and intellectually foreign information, relatives often immediately grasp the severity of the situation, but struggle for some time to integrate the specifics of the patient’s condition. A recent example at UCI Trauma Center involved a family who had lost a son in a traffic accident the previous month. They were summoned to the hospital after being told that their daughter had been pulled from a flaming vehicle and was enroute to the trauma center. After some preparation of the parents by the social worker, the surgeon informed them that their daughter was in serious, but stable, condition. Their apparent understanding

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of this was gradually replaced by blankness and confusion. In this case and countless others like it, the social worker reassures the family that they are not “losing their minds” (a commonly expressed fear), but that they need time to adjust to the magnitude of the trauma. A concern of the social worker during this period is to remain sensitive to the emotional state of individual family members and to interpret their needs and behavior for trauma staff. A secondary goal of intervention is to maximize the family’s ability to help the patient. As Schnaper and Cowley (1976) have discovered, patients seen in trauma centers display a variety of emotional responses to their experience, but they almost universally report a struggle in dealing with feelings of helplessness, humiliation, and violation of body image. Most trauma center patients, unconscious when they are admitted, awake in a state of total confusion. As previously described, family members also have feelings of anxiety, uncertainty, and guilt. As much as possible, family members need to come to terms with their own crisis-related feelings. Successful resolution of these feelings will facilitate their ability to provide adequate emotional support to the patient who is experiencing physical and psychological turmoil. An important aspect to consider when dealing with a significant medical crisis is that the trauma and its management represent abrupt loss as well as the threat of additional loss for the patient and family. What is lost immediately (not always at the conscious level) is one’s belief in a certain degree of immunity from the disasters and misfortunes that beset others. This crust of denial, so essential for day to day functioning, is suddenly shattered when one is confronted with the reality of a loved one undergoing 1074

life-saving treatment. Statements such as, “It can’t be true, tell me that this is a nightmare,” or, “You can’t be talking about my husband. Are you sure a mistake hasn’t been made?” reveal the depth of denial that exists. Through effective listening and interpretation, the social worker can assist the family in facing this loss and gradually coming to terms with the reality of the situation. As in any crisis, one should not be forced to abandon denial until one is ready to do so. A second type of loss, precipitated by the actual medical management of trauma, is loss of control over the opportunity to care for the patient oneself. The instinct to nurture one who is loved, and has been hurt, is suddenly thwarted. This situation gives rise to inevitable feelings of helplessness, dependency, and anger. The social worker can do several things in order to alleviate these feelings. A simple statement, such as, “Even though you know the doctors and nurses are doing all they can for your wife, it must be difficult to entrust her care to strangers,” gives relatives permission to acknowledge and express ambivalent emotions, as well as the unrealistic fear that their anger might jeopardize staff’s willingness to provide quality patient care. Helping the family formulate and express what psychosocial assistance is needed to deal with this predicament allows them to achieve some sense of control. One can ask, for example, what the nursing staff should know about the patient in order to better help that individual deal with the return of consciousness or the first critical days following surgery. An explanation can be given that this information will be shared with critical care staff so that they may care for the patient’s emotional, as well as physical, trauma. As soon as possible, the family should be informed of the care plan for the patient, and they should be allowed to 1075

participate in some aspect of it. This will both reestablish them as important caretakers and prepare them for the patient’s return home. The final and perhaps most obvious loss, or threatened loss, particular to medical crisis is that to life, limb, or function. The following case illustrates the severity of loss with which some individuals are faced: Mark, 16, was rushed to the University Trauma Center following an accident in which he was dragged under a car for a mile. This gruesome accident cost the victim half of his face, his rectum, and larynx, and inflicted severe abrasion burns to most of his upper body. He spent seven hours in the operating room. Throughout Mark’s ordeal, his parents were updated on their son’s condition by no less than six medical specialists. Inundated with increasingly frightening information and attempting to cope with the emotional avalanche into which they had been thrown, the couple verbalized their two greatest fears—would their son survive, and if so, how badly would he be disfigured? The question of disfigurement proved to be a major theme for the first three days following the accident. The parent’s initial relief that their son had survived his injuries soon gave way to increasing anxiety regarding what he looked like under his dressings. Through special care and preparation of the parents by the social worker and trauma staff, they were gradually able to view Mark’s injuries and begin the grieving process. As the above case illustrates, the resolution of sudden, substantial loss is a major task which frequently faces the recipients of trauma center care. The teenager who is stabbed 1076

in the heart and dies in the Emergency Room, the parent of three children who is struck by a drunk driver and never regains consciousness, and the 20-year-old classical guitarist who loses a hand in an industrial accident, all represent the kinds of tragedy seen daily in the trauma center setting. When the loss encountered is one of limb or function, intervention is initiated as soon as possible with the patient. On an intrapsychic level, such a loss typically represents a narcissistic insult, or threat to the integrity of the patient’s body image. Most patients readily verbalize feelings or depression, anger or fear, and are often relieved to be able to share these feelings openly (Golden, 1966).

Grief Counseling and Termination When patients do not survive their injuries, the focus of social work intervention shifts from that of helping the family adjust to temporary medical uncertainty to management of the acute grief reaction. The social worker is routinely present when the physician delivers the news of death and engages in specific interventions so that the grief process might proceed normally. Relatives are allowed to ventilate strong emotions without fear of interruption or embarrassment. The use of sedatives is discouraged during this period, as it can blunt the initial grief reaction and retard the normal progression of the grief process (Dubin & Wolman, 1979). Friends and family members are encouraged to review their feelings toward, and relationships with, the deceased. As Dubin and Wolman note, such review prevents the family from somatization of their grief and from prolonged identification with the deceased. If the family feels that immediate spiritual support would be helpful, a

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clergy member of their choice is contacted and requested to come to the hospital. Once initial reaction subsides, the family is given the option of viewing the body before it is sent to the morgue. Most family members feel strongly either that they would find it helpful to see the body, or would not. In either case, the decision made by each individual is respected. Often, relatives who have not outwardly expressed their grief will do so upon seeing and touching the body, as this experience validates for them the reality and finality of death. Before the family leaves the hospital, the physician discusses the issues of autopsy, organ donation, Coroner’s involvement, and transfer of remains with them. The social worker helps the family to discuss these issues openly and make decisions about them. The social worker’s final task is to assess the availability of supportive networks to the family and to encourage their utilization. The family is also advised that future help is available through access to the trauma social worker or community agencies if they should require professional assistance or intervention in the weeks or months to come.

Conclusion The development and designation of hospital trauma centers brings with it the need for social workers who are specialized in the psychological aspects of trauma care. Functioning as an essential member of the trauma team, the social worker utilizes various roles and techniques in order to maximize the coping mechanisms and minimize psychiatric sequelae of the trauma patient and his or her family. By combining the skills

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of assessment, consultation, crisis management and grief counseling, the social worker helps to incorporate emotional, social, and cultural considerations into the overall care of the trauma patient. Many of the approaches and techniques described can be adopted by social workers in general emergency rooms, where crisis intervention is the primary treatment modality. Improved paramedic programs and the development of specialized treatment centers cause more salvageable patients to come to the hospital now than ever before. Medical care by itself, no matter how superior it may be, is unable to provide for these patients in an optimum manner. It is anticipated that social workers will be called upon in ever increasing numbers to augment that care by providing immediate intervention to trauma patients and their families.

Note Reprinted from Social Work in Health Care, Volume 7(4), Summer 1982.

References Cowley, R.A., & Scanlan, E. University trauma center: Operation, design and staffing. The American Surgeon, 1979, 45, 79-85. Dubin, W.R., & Wolman, T. Evaluation and management of the grief reaction. Pennsylvania Medicine, 1979, 82, 19-22.

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Epperson, Margaret. Families in sudden crisis: Process and intervention in a critical care center. Social Work in Health Care, 1977, 2(3), 265-273. Golan, N. Social work intervention in medical crisis. Hospital and Community Psychiatry, 1972, 23, 41-45. Golden, J. S. Psychiatric management of acute trauma. In A. Nahum (ed.), Early management of acute trauma. St. Louis: The C. V. Mosby Co., 1966. Harvey, J. C. The Emergency Medical Service Systems Act of 1973. New England Journal of Medicine, 1975, 292, 529-530. Maull, K. I., & Haynes, B. W. Jr. The integrated trauma service concept. Journal of the American College of Emergency Physicians, 1977, 6, 497-499. Montgomery, B. J. Emergency medical services: A new phase of development. Journal of the American Medical Association, 1980, 243, 1017-1021. National Academy of Sciences, Division of Medical Sciences, Committee on Trauma and Committee on Shock. Accidental death and disability: The neglected disease of modem society. Washington, D.C.: U.S. Department of HEW, 1966. Schnaper, N., & Cowley, R. A. Overview: Psychiatric sequelae to multiple trauma. The American Journal of Psychiatry, 1976,133, 883-890.

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West, J. G., Trunkey, D. D. & Lim, R. C. Systems of trauma care: A study of two counties. Archives of Surgery, 1979,114, 455-459.

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The Intensive Care Unit: Social Work Intervention with the Families of Critically Ill Patients Cindy Cook Williams, RN, MSW, ACSW Donetta G. Rice, MSW, ACSW At the time of writing Ms. Williams was a social worker on the Intensive Care Units, Veterans Administration Hospital, 4435 Beacon Avenue South, Seattle, WA 98108. Much of her clinical practice in nursing took place on critical care units. Ms. Rice also practiced social work at the VA Hospital in Seattle, and was a clinical faculty member of the University of Washington School of Social Work. SUMMARY. Hospital intensive care units can be a significant practice area for social workers. Nowhere are families in more obvious crises than when faced with the life-threatening illness of a significant other who may be unresponsive and dependent on a frightening array of highly technical equipment. Using the crisis model for their intervention, social workers can significantly lessen the trauma experienced by these families. Additionally, they can develop other supportive hospital resources such as family groups and volunteer services to help meet their needs.

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With the expansion of scientific knowledge, changes in health care delivery are occurring more rapidly than ever before. Years ago private duty and recovery room nurses provided individualized care to the critically ill around the clock. Today this care has largely been replaced by hospital intensive care units. Patients with life-threatening diseases of the respiratory, cardiovascular, renal, and/or central nervous system are now able to receive constant observation and highly skilled nursing care in a concentrated location. This article describes how social workers can help the families of intensive care unit (ICU) patients with the traumatic effects of the experience.

Contrasting Features of ICU and General Medical-Surgical Units Intensive care units differ from general medical-surgical units in a number of ways. In the ICU each bedside area is set up with complex technical equipment necessary for continual monitoring of the patient’s physical condition; lifesaving equipment is immediately available to meet each medical crisis. Patients are more closely observed by a higher ratio of nurses per patient. A general medical unit, as an example, can be staffed with one nurse for six patients while on the ICU one nurse may care for only two patients. In complex situations a one-to-one staffing pattern may occur. ICU nurses are highly experienced in dealing with medical emergencies; not all general duty nurses have the same experience or skill in dealing with these types of medical crises.

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An immediate turning point in the patient’s illness is usually expected on the ICU with a prognosis of either recovery or death. The technical equipment and constant nursing care enhance the likelihood of recovery through treatment on the ICU. When the patient’s physical condition is stable he is usually moved to a general medical-surgical unit. Thus, intensive care units are further characterized by a shorter length of stay for patients. The close physical proximity of critically ill patients on the ICU often is markedly different from patient contact on other types of units. Continuous exposure to other seriously ill patients can provoke anxieties and fears for both the patient and his family members. As compared with the general wards, families of ICU patients observe a greater number of medical emergencies and deaths among neighboring patients.

Impact of Members

the

ICU

On

Family

In meeting acute medical crises, treatment can become highly mechanized and seem impersonal. It is not uncommon for patients to feel dehumanized and to be subjected to a complete lack of privacy. The family, of course, can easily observe this phenomenon on the ICU. They are assaulted by the impact of seeing their family member in this strange and impersonal environment, and by exposure to the suffering of others nearby. Hay and Oken vividly described the following reaction to the ICU: Initially, the greatest impact comes from the intricate machinery, with its flashing lights, buzzing and beeping

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monitor, gurgling suction pumps, and wheezing respirators.… Desperately ill, sick and injured human beings are hooked up to that machinery. And, in addition to mechanical stimuli, one can discern moaning, crying, screaming and the last gasps of life. Sights of blood, vomitus and excreta, exposed genitalia, mutilated wasted bodies, and unconscious and helpless people assault the sensibilities.1 The experience of seeing a family member comatose can be emotionally devastating, and it is not uncommon for some individuals to feel responsible for the patient’s present condition. Statements reflecting guilt and fear are frequently expressed. Further emotional complications may arise when the patient is being sustained by technological means with little or no chance of recovery. The family, at times, is asked to participate in life-or-death decisions which can further exacerbate the crisis. Social work intervention based on the crisis model can assist families by lessening the trauma often inherent in the ICU hospitalization.

The Crisis Model The potential loss of the patient through death is an ever-present reality on the ICU. Even with expert medical and nursing care, those patients who do survive may suffer long-lasting or permanent deficits in their physical and/or mental functioning. The threat of these potential losses significantly affects families of ICU patients. Customary role relationships and life goals of the family unit are in danger of upset because of the patient’s altered physical condition. This disequilibrium in the family system constitutes a major crisis.

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Individuals within a family may cope quite differently when confronted with the same crisis situation; and one family member’s response to the course of events may directly influence how other members cope with the circumstances. Aguilera and Messick attribute individual differences in responses to the following factors: (a) the individual’s perception of the stressful event; (b) the available support system; and (c) the coping mechanisms used to deal with the event.2 Strengths and weaknesses in each of these areas have a significant impact on how effectively one regains equilibrium and resolves the crisis. Individuals who have a realistic perception of the crisis usually recognize the link between the precipitating event and feelings of stress. Problem solving can then be focused on reducing tension; successful resolution is subsequently more probable. The individual’s support system, those resources currently available to assist with the crisis situation, can include other family members, friends, hospital staff, and community agencies. The more support an individual receives during a crisis, the better his chances for successful coping. Coping skills are those behaviors a person uses to resolve a problematic situation. Coping mechanisms used to deal with past crises may or may not be adequate for dealing with the current crisis.3 Social work assessment and intervention in these three areas can help families deal with the trauma experienced during the patient’s ICU hospitalization. Evaluating the family’s perceptions, coping skills, and situational supports lays the groundwork for appropriate intervention. Intervention is most often geared to strengthen areas with the most evident deficits. Using this crisis model, the ICU social worker can

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have a significant impact on the family’s response to the circumstances and can promote their future functioning.

Perception of the Event A family’s perception of the crisis greatly influences cognitive, affective, and behavioral response to the situation.4 How the family perceives the patient’s physical status on the ICU can be incongruent with what is actually happening. One woman, for example, thought her husband was experiencing merely another bout of chest pain. Actually, however, the patient had had a cardiac arrest and was in critical condition. Although the woman had been told about the change in her husband’s condition, high levels of anxiety prevented her from hearing and incorporating what was said. Detailed and complex verbal information is not always absorbed. The worker must not assume that explanations are always understood or remembered by family members. A wife who experienced the sudden traumatic death of her husband was able to make arrangements for the funeral with a minister and discuss the death with little display of emotion. One month later, however, she had no recollection of these conversations. Social work intervention often involves strengthening and promoting communication lines between families and staff. Reinterpreting in laymen’s terms the content of the physician’s discussion about the patient’s condition can be helpful. Periodically relaying information about the patient’s physical status to the waiting family forges a supportive linkage. Family members are less likely then to let their imaginations fill in gaps of knowledge. If the patient is dying,

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they can begin to let in some awareness of the approaching death and are afforded some opportunity for anticipatory grieving. The social worker can also prevent and correct misconceptions about the patient’s physical condition, as in the following case example: The wife of a patient who was being treated on the ICU following an automobile accident had been reassured by the physician that her husband’s condition was stable. Suddenly a group of five men in white coats rushed up the hall and entered the unit. Upon watching this occurrence, the wife’s response was, “Oh no, I knew he’d go downhill! It must be his heart again!” In reality the physicians were busy on rounds and had hurriedly entered the ICU to assist with a minor technical procedure. The social worker investigated the situation and relayed the actual purpose of the visit to the patient’s wife. Her apprehension noticeably decreased, and she was also reassured that her husband, too, was receiving close medical attention. The family’s perception of the patient’s course of medical treatment can be clarified by information giving.5 A simple word of explanation about the use of intravenous feedings may serve to dispel unfounded fears and reduce anxiety. Although the equipment and medical procedures are commonplace to staff, they often are strange and unknown to the family. As their advocate, the social worker needs to alert the medical and nursing staff of the family’s need for explanations. A conference that includes the family and staff is an effective way to facilitate the sharing of such pertinent information.

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The social worker can also make sure the members of the family are allowed to see the patient when the medical situation becomes critical. If the patient is surrounded by medical and nursing staff during an emergency, it is understandable that the family simply cannot walk in. If at all possible following emergency procedures, however, it is beneficial for selected family members to see the patient. They may need to express a multiplicity of feelings or bring up unfinished business. Others look for reassurance that all measures are being taken to preserve the patient’s life.6

Situational Support Modern day strains accompany life-and-death issues in our society. We live in a highly mobile culture. Young families rarely live with their parents or grandparents. A network of nearby friends, relatives, and close neighbors is not always available during a time of crisis to provide the support that was often available in the past.7 The spouse of the ICU patient can often be found waiting alone in the lounge area. Mobilizing situational support for the family is essential. Asking them who has been helpful when problems were experienced in the past provides clues to determine whom the social worker or functioning member of the family can call on for immediate support. Direct observation of visitors can also reveal which individuals are most supportive to the family. Of those persons present, which individuals are spoken to most often concerning specific decisions and/or concerns? Another valuable source of situational support is the hospital staff. A staff member or trained volunteer can stay with the family during the crisis

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period, and the social worker is often in the best position to alert the staff/volunteer of this need. Staying with the family and allowing them to ventilate their feelings can be reassuring. Mobilizing the support of community resources is often necessary. Practical concerns, such as housing, may present problems with which the social worker can help. Some families do not reside within the immediate catchment area of the hospital, and the worker can help them plan to use short-term housing resources near the hospital. Frequently referrals are needed for immediate or long-term financial assistance. Many families are not prepared for medical emergencies, and financial difficulties add enormously to the feelings of anxiety.

Coping Mechanisms A crisis often brings back thoughts and feelings about similar situations in the past. Families of ICU patients frequently discuss life-threatening illnesses of other important people in their lives. How they responded to these past crises is often predictive of how they will cope with the present circumstances. An individual’s coping style, according to Kiely, will most likely reflect personality characteristics typical of previous functioning.8 Some family members react to the illness of a significant other with much hostility and anger. Their fear for the life of the patient can easily be projected onto the medical and nursing staff. They may see staff paying more attention to another patient and assume their family member is being neglected. A soiled bedsheet may represent poor nursing care 1090

to them.9 The open expression of anger and hostility by families can be extremely difficult for staff. The social worker can be instrumental in discussing the psychodynamics of the situation with the ICU staff. As they better understand the family’s response, staff may be more tolerant and able to allow expression of these types of feelings. Attempts to defend the staff’s actions to the angry family, however, may escalate their expressions of hostility. It is not an issue of taking sides; the family must be allowed to react in a manner that is characteristic for them. Another common defense mechanism used by family members is rationalizing feelings of guilt. A wife may search the events before hospitalization for her failure to do right by her husband. Other family members may use denial as a way of dealing with the crisis, as in the following case: One husband repeatedly emphasized that he was able to deal with his wife’s illness without difficulty. He would comment to family, friends, and staff, “I’m fine. Things are under control. It’s not getting to me.” Close family members, however, reported that he was not sleeping at night, would pace the halls, and ate very little. With help the husband was able to express his fear and anxiety. Family members’ reactions to the death of the patient vary. Some individuals react by weeping, moaning, clinging to staff, or pacing the halls. Others panic, cry, and shout. These people, in one way or another, are able to express their grief. A box of tissues, a cold wet washrag, and a darkened private room are often helpful. The tissues give the individual an “OK” to cry openly and express feelings of grief. Some 1091

people respond to human touch—a hug or hand on one’s shoulder. Others wish to be left alone. The approach for the social worker is simply to be there, to be sensitive to the family’s needs and allow them to express their feelings in their own way. When a patient does die, hospital staff frequently prescribe tranquilizing medication for family members. Sedating a screaming, crying, or hysterical person to quiet him down is not always indicated. Administering sedating drugs may be a way that staff cope with their feelings of helplessness in the situation. It is wise to question whether it is the client’s or the staff’s crisis that is being treated with drugs. Whenever possible it is preferable to provide human support rather than chemical masking of the traumatic reaction. Family members experiencing shock and disbelief may need assistance with decision making. Issues such as the choice of funeral home, what to do with the patient’s personal effects, or permission for an autopsy may arise. One family had difficulty deciding when and how to notify the elderly mother of a patient who had died unexpectedly. The woman had a long history of cardiac problems, and the family feared for her physical health. After discussion with the social worker, the family decided to confer with the family physician; those individuals closest to the mother then approached her with the unfortunate news.

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Establishment of Hospital Services for the Families of ICU Patients The physical layout of hospitals is primarily geared to meet the medical needs of patients. Little attention is given to the space needs of family members. Nowhere is the lack of adequate space more pivotal than with the families of ICU patients. Families can frequently be found hovering outside the ICU doors, as most want to stay as close to the patient as possible. In most hospitals the alternative is to wait in the lobby or a room some distance away from the unit. To humanize our health care institutions, more attention needs to be paid to providing physical space and privacy for families during this time of crisis. Health planners should consider these needs when designing and constructing new hospitals. Kiibler-Ross recommended that hospitals establish a nearby “screaming room” where families can wait in privacy and in an atmosphere that would be more conducive to the family’s open ventilation of feelings about their circumstances. A room with a couch, comfortable chairs, a telephone, clock, and perhaps a coffee or coke machine would provide the family a refuge away from busy corridors, the traditional cold, remote waiting rooms, and the stares of others.10 In addition, a core of workers is needed who can stay with families and provide emotional support. Availability of workers on a twenty-four-hour basis is essential; family needs are not limited to specific shifts. The workers might include social workers, chaplains, nurses, and trained volunteers.

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Family members of former ICU patients can form a nucleus for a pool of volunteers.11 Group meetings with the families of ICU patients are another helpful service that should be offered. Participants in the group can share their fears and concerns, as well as find psychological support knowing that their emotional responses are being experienced by others as well. Camaraderie often develops between group members, and it’is not unusual for them to maintain supportive contact with each other outside the hospital. Many are also able to extend their support to other family members and friends. A twenty-three-year-old female was brought to the emergency room in cardiopulmonary arrest. She responded to emergency medical procedures and was subsequently placed in the ICU. The patient’s mother came from the East Coast to be with her. After the shock of seeing her daughter in acute crisis had worn off, she continued to stay near the unit twelve to fourteen hours a day and made continued demands for information from the staff. Since the cause of her daughter’s condition was in doubt, there was relatively little specific information for staff to provide. As the mother’s frustration and anger grew, her complaints about the care increased. She was asked to join a group composed of family members, staff, and patients. During the group meetings she was able to cry and openly express her fears and anger. As the weeks passed, the mother made friends with other families, and a mutual support system developed. Staff contacts decreased, and she needed to spend less time at the hospital. The daughter’s oxygen deprivation at the time of crisis caused brain damage, and she needed an intensive retraining program prior to

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discharge. The mother continued to use the group for problem solving until her daughter was released.

Conclusion Family members are often aghast at the sight of their relative being cared for in the hectic, mechanical, and impersonal environment of an ICU. Seeing a patient comatose with tubes in his orifices can be frightening. When critically ill patients die they leave families with heartbreaking adjustments to make. As their advocate, the social worker can provide needed intervention at the scene of the crisis. His assessment of and help with the family’s perception of the circumstances, their coping mechanisms, and the situational supports available to them are an integral component of the team’s effort in caring for the patient. Social work intervention can lessen the trauma inherent in a patient’s ICU hospitalization and significantly improve the family’s functioning in the crisis.

Note Reprinted from Social Work in Health Care, Volume 2(4), Summer 1977.

References 1. Donald Hay and Donald Oken, “The Psychological Stresses of Intensive Care Unit Nursing,” Psychosomatic Medicine 34 (1972):110.

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2. Donna C. Aguilera and Janice M. Messick, Crisis Intervention: Theory and Methodology (Saint Louis: C.V. Mosby Co., 1974), p. 63. 3. Ibid., p. 64. 4. Kathleen Obier and L. Julian Haywood, “Enhancing Therapeutic Communication with Acutely 111 Patients,” Heart and Lung 2 (1973):50. 5. Carolyn Bascom Bilodeau, “The Nurse and Her Reactions to Critical Care Nursing,” Heart and Lung 2 (1973):358-63. 6. Elisabeth Kiibler-Ross, “Crisis Management of Dying Persons and Their Families,” in Emergency Psychiatric Care: The Management of Mental Health Crises, ed. H. L. P. Resnik and Harvey L. Ruben (Bowie, Md.: Charles Press Publishers, 1975), p. 150. 7. Ibid., p. 145. 8. William F. Kiely, “Psychiatric Aspects of Critical Care,” Critical Care Medicine 2 (1974):140. 9. Hay and Oken, “Psychological Stresses,” p. 112. 10. Kübler-Ross, “Crisis Management,” p. 154. 11. Ibid.

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Social Work and Primary Health Care: An Integrative Approach Joan R. Brochstein, MSW, MPH George L. Adams, MD Michael P. Tristan, MD, MPH Charles C. Cheney, PhD At the time of writing the authors were from the Departments of Psychiatry, Community Medicine, and Pediatrics, Baylor College of Medicine, Texas Medical Center, Houston, TX 77030. A preliminary version of this paper was presented in a session entitled “Social Work in Primary Care” at the 106th Annual Meeting of the American Public Health Association, Los Angeles, CA, on October 15-19, 1978. This work has been supported by NIMH Grant #1 T21 14863-02. SUMMARY. An interinstitutional, interagency Consortium has been formed in Houston to develop an innovative service model and provide interdisciplinary primary care/mental health training. The Houston Consortium Program integrates mental health professionals and trainees into the primary care framework of a neighborhood center serving a low-income, predominantly Mexican-American population. The introduction of mental health, psychosocial, and cross-cultural perspectives to complement the long-standing physiological concerns of health professionals fosters an holistic approach

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to patient care. The social workers’ full participation as members of primary care teams builds upon their traditional training to provide them the experience and skills required to function effectively in the expanded coordinative capacity of health/mental health manager as defined by the President’s Commission on Mental Health. It is anticipated that Consortium Program can serve as a heuristic model in the development of a nationwide pattern of comprehensive care.

Introduction Recent decades have witnessed the achievement of impressive advances in American medical science and the development of technologically complex and sophisticated health care specialties (Coggeshall, 1965; Millis, 1971). This period has also been marked by a concurrent national trend toward fragmentation, high cost, and inaccessibility of health care services (Regional Workshops on Health Manpower Distribution, 1975). A major focus on efforts to address this situation is primary care medicine, which has been defined as entailing the individual physician or primary care team providing “first contact” care, assuming longitudinal responsibility, and serving “integrationist’ functions vis-à-vis the broader health care system for the patient and his or her family (Alpert & Charney, 1974). Examples of the current thrust to significantly augment the manpower pool in the primary care fields of family practice, general pediatrics, and general internal medicine, include the following: establishment of the Board of Family Practice in 1969; passage of federal legislation in 1971 to finance family practice training;

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promulgation of recommendations on manpower and training in 1978 by the Institute of Medicine Committee on Primary Care; and passage of the Health Professions Educational Assistance Act of 1976, which sets the goal of providing 50% residency training positions in the primary care professions by 1980 (Coordinating Council of Medical Education, 1975; Institute of Medicine, 1978; Health Professions Educational Assistance Act, 1976). Similarly, the community mental health movement has since its inception in the early 1960s sought to establish programs which provide community-oriented prevention, early detection and treatment of illness, and rehabilitation and supportive care for the chronically ill (Musto, 1977). Although performance may have fallen short of these objectives, the President’s Commission on Mental Health has recently reaffirmed the commitment to effectively address such national mental health issues as community-based prevention and aftercare—especially for such traditionally underserved segments of the population as children, the elderly, and minority groups—through the interlinking of existing public sector health and mental health service resources (Holland, 1977; President’s Commission on Mental Health, 1978). The developments in primary care and community mental health bear crucial importance for the discipline of social work in terms of both service delivery and professional training. In recent years, employment among social workers in the health care field has undergone rapid increases, with the number of practitioners rising from 11,700 in 1960 to 29,800 in 1970 (Bracht, 1974; DHEW, 1971). A 1975 report of the National Association of Social Workers notes that close 1099

to one-third of its members currently practice in health care settings (16.6%) or mental health organizations (14.4%) (NASW, 1975). Moreover, it has been predicted that within the next two decades health and mental health service systems will employ more than 50% of all practicing social workers (Shulman, 1977). The profession of social work has long advocated the provision of holistic, comprehensive services to clients and has come to increasingly recognize and apply the principles of general systems theory in working at the interface of human service systems (Raymond, 1977; Gordon, 1969). The integrationist aspects of the primary care and community mental health movements are therefore of special significance to social workers (Lurie, 1977). The question remains, however, as to how these developing health care systems will incorporate the particular knowledge and skills which social work has offer, and conversely, how social workers will prepare themselves to practice effectively within the health/mental health care fields. Following an overview of the relationship of primary care and mental health, this paper provides an outline of an experimental primary care mental health program and a discussion of its potential relevance to future social work training and practice.

Primary Care and Mental Health It has been estimated that primary care providers devote as much as 70% of their time to their patients’ emotional difficulties, the spectrum of psychological problems which they encounter ranging from the stresses of modem life, to the

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emotional concomitants of physical illness, to the severe psychotic disorders (Borus, 1976). Yet the available mental health expertise required to effectively deal with these problems is often limited. Seldom are mental health professionals incorporated into primary care settings; interagency referral mechanisms between primary care and mental health care systems are usually intricate and obstacle-ridden, if they exist at all (Borus et al., 1975); and physicians and other primary caregivers generally do not possess the skills necessary to handle the psychological factors of patient care (Wise et al., 1974). The delivery of community mental health services is characterized by difficulties ranging from the complexity of establishing and maintaining effective preventive care to issues of interagency coordination in the hospitalization and aftercare of the mentally ill, including the reintegration of returning patients into their families and communities (Borus et al., 1975; Scherl & English, 1969). Moreover, the failure of mental health centers to make services appropriate to the specific sociocultural characteristics of consumer populations can seriously impede the provision of care to minority groups (Kline, 1969; Phiilipus, 1971). The capacity of primary care settings and neighborhood mental health care centers to provide optimal mental health services is often constrained by limitations in the training experiences of their staff members (Wise et al., 1974). In the course of their training, physicians and other primary care providers generally receive little psychological education that is relevant and applicable to primary care delivery; health and mental health professionals do not tend to acquire either a first hand knowledge of primary care delivery or flexibility in 1101

interpreting the respective roles and functions of their various disciplines (Goldberg et al., 1976; Lazerson, 1976; Banta & Fox, 1972; Brenneis & Laub, 1973; Morrison et al., 1973). Furthermore, the standard training of both primary care providers and mental health professions is seldom focused on meeting community-oriented service needs. That is, their education does not equip them with the psychosocial and cross-cultural perspectives required to readily comprehend and appropriately address problems they may encounter in the context of providing neighborhood-based primary care and mental health care services to underprivileged minority populations (Garcia, 1971; Karno & Edgerton, 1969). The inability of primary care and mental health systems to adequately provide comprehensive services to patients is a profound dilemma in health care today. The Houston Consortium Program is an attempt to address this problem, to train caregivers of a variety of professional disciplines to provide full-scale, quality patient care. Social workers, with their background in treating the client in a holistic and humanistic manner, play a central role in this process. The Houston Consortium Program represents an experimental effort designed to integrate social work practice with primary care/ mental health service and training (Adams et al., 1978).

An Integrative Approach The Houston Primary Care Mental Health Training Consortium comprises three educational institutions and two service agencies: The University of Houston Graduate School of Social Work; The University of Texas School of Nursing at

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Houston; The Baylor College of Medicine (Departments of Psychiatry, Community Medicine, Internal Medicine, and Pediatrics); The Harris County Hospital District, a public agency which delivers care to the mentally indigent; and the Mental Health and Mental Retardation Authority of Harris County, a public provider of mental health services. The Consortium Training Program has the following objectives: 1. To educate mental health trainees in the delivery of mental health services, both as fully integrated members of primary care teams and as members of secondary mental health teams providing consultation and backup services in primary care settings; 2. To enable primary health care professionals and trainees to acquire mental health skills which will help them to better serve their patients; 3. To develop teaming and interdisciplinary working skills in the delivery of health and mental services in primary care settings; and 4. To provide health and mental health caregivers with psychosocial and cross-cultural perspectives in the delivery of care to minority populations. Initiated in July, 1977 at Casa de Amigos Neighborhood Health Center, the Program is located in a large Mexican-American barrio in north central Houston. This facility is a multi-service neighborhood center which contains components of the Harris County Hospital District, the Mental Health and Mental Retardation Authority of Harris County, and the Houston Public Health Department. It serves a catchment area including more than 1103

400,000 persons. Adjacent to the facility is a community center which houses a variety of human service, educational, and cultural enrichment activities. This training site was chosen for the following reasons: its mission is to provide comprehensive services to meet the needs of the low-income, predominantly Mexican-American population of the surrounding community; it has both primary care and mental health service programs; primary care is delivered through teams composed of physicians’ extenders, nurses, and nutritionists; and two of the Consortium’s participating educational institutions were previously using the facility for training purposes. The Program’s trainees include graduate social work, psychiatric nursing, and clinical psychology students; residents in psychiatry, pediatrics, internal medicine, and the prototype primary care; and medical students. An interdisciplinary, bilingual, bicultural core faculty renders direct and indirect services and provides supervision and didactic instruction to all trainees. In addition, they provide continuing education and inservice training to the neighborhood center’s primary care and community mental health personnel and work on a consultation basis with local social service organizations. The structure of the Consortium Program encompasses two primary care teams, one for pediatric and one for adult services, and a secondary mental health care team. Together with primary care residents and medical students, graduate social work and nursing trainees are integrated into the primary care teams to provide mental health assessment, to render mental health services for patients, and to link the two teams in addressing family mental health problems. The 1104

majority of services for patients who present with emotional or psychosocial difficulties are provided by social work and nursing students. Clinical psychology interns and psychiatric residents comprise the secondary team within the framework of the neighborhood center’s mental health unit to provide consultation, liaison, and backup services for the primary care teams; deliver preventive and aftercare services to the mental unit’s psychiatric patients; and render consultation and education to community organizations. Interdisciplinary collaboration occurs routinely within each team, as well as between the adult and pediatric primary care teams and between the primary and secondary teams. The latter generally occurs when nurses and social workers are presented with a patient whose emotional problems are too complex to be handled on the primary care team level; in such cases secondary team psychologists and psychiatrists are available to either work directly with the patient or provide consultation to the primary care team member who is working with the patient. In the course of providing health and mental health services to patients in the primary care setting, trainees acquire a wide range of practical skills in their respective disciplines as well as knowledge of the many aspects of primary care medicine. Mental health trainees develop both basic mental health skills and those specialized skills which enable them to provide direct and indirect services within the primary care framework. Skills acquired by primary care trainees include the ability to distinguish normal from abnormal behavior; to evaluate psychological difficulties in their patients; and to design and implement treatment plans for patients and their families with mental health or psychosocial problems. The Consortium Program enables all trainees to acquire skills in 1105

recognizing and handling cross-cultural and psychosocial aspects of physical and emotional illness, in working competently on interdisciplinary teams, and in utilizing the resources of the surrounding community for the benefit of their patients. In addition to their minimum of three days per week of practicum experience at the field training site, all trainees pursue coursework at their respective home institutions and participate in weekly Consortium seminars and case conferences at Baylor College of Medicine. In the Consortium Program, social work trainees, in close collaboration with graduate nursing students, are involved in all aspects of patient care and bear long term responsibility for the patient. At each level of care—primary, secondary, and tertiary—the social worker plays a significant role. He or she is actively involved in screening, assessment, and treatment planning processes for new patients, and has an important part in the early detection and prevention of individual and family difficulties. On the secondary level, the social worker participates in treatment through such activities as crisis intervention and short-term, goal-oriented psychotherapy. Finally, social workers are involved in rehabilitative efforts, helping patients reintegrate into a life of social and job functioning. When the social worker is not directly involved in providing secondary and tertiary care, he or she takes on longitudinal responsibilities, acting in a liaison capacity to other providers. The experience of training under the Consortium format is a unique opportunity for the social work trainee. Unlike most ambulatory care settings, the Consortium Program accords social work students authority in decision-making processes; 1106

the assessments and recommendations of social workers, and of other non-medical professionals, are judiciously considered in team decisions regarding diagnosis and treatment. With the participation of mental health trainees in patient staffings, close attention is paid to issues of patient care not normally considered by primary care providers. Thus, social workers focus on the patient in the context of his family and neighborhood and help to engender an awareness among team members of psychological, cultural, socioeconomic, and other influences on the patient’s health. In addition to their clinical participation in the Program, social workers play a vital role in developing and maintaining connections between the many components of the Consortium. Drawing on their skill in working with systems, social workers are involved in inhouse coordination among the public health, hospital district, and community mental health programs; in primary care interteam connections (e.g., in working with family problems, social workers will provide ongoing communication between the pediatric and adult teams); and in community consultation. In the latter endeavor, social workers have developed intensive working alliances with neighborhood schools, drug abuse programs, and geriatric organizations in the surrounding community. The efforts of social workers in the management of specific cases have led them to do valuable work in bridging the various systems operating overtly and covertly in the community. Improved patient care is becoming evident as barriers to communication gradually dissolve.

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Discussion A clear challenge confronting social work practitioners in the Houston Consortium Program and, indeed, in the health care arena nationally, is how to utilize their strengths and knowledge in such a way as to enhance the quality of care which patients receive in health and mental health service systems. With the rapidly changing nature of health care delivery and with the increasing participation of social workers in medical settings, the opportunity to influence the course of patient care is open to the social work professions as it has not been in the past. The comprehensive approach to care so familiar to the social worker is also being implemented by the primary caregivers; the rich experience of social workers in this area should be tapped as development in the field occurs. Essentially, the participation of the social worker in health care delivery systems is not new. But despite the fact that social workers have been involved in multidisciplinary working relationships for many years, they have not functioned as an integral part of the health care process; their role has generally been circumscribed and limited to that of helper or enabler to other health professionals (Kane, 1976; Rusnack, 1977). Prior to the launching of the Consortium Program, for example, social workers at Casa de Amigos were delegated responsibilities which might be considered typical of the standard social work role. That is, social workers provided intake, liaison, and referral services, functioning essentially as aides to other professionals at the site. They were not integral members of the health care system and did not participate actively in the decision-making

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processes regarding patient care. They ultimately had little impact on the quality of care delivered to the consumer. In the Houston Consortium model, an effort has been made to draw on the strengths and knowledge of social workers, to utilize their talents fully within the context of providing services to patients and training those of other disciplines in social work approaches to patient care. Unlike the previous system which operated at Casa de Amigos, the participation of social workers is crucial to the functioning of the primary care teams and the health care delivery process in general. The traditional social work role has been redefined and expanded so that the social worker has substantial influence on the course of patient care and on the training experiences of all who participate in the Program. It seems apparent that social workers may have a vital role to play in guiding primary care providers toward a holistic perspective in the formulation of their patients’ difficulties. In addressing the whole of a patient’s problems, the social worker takes a very different stance from that of traditional medicine. Health providers have generally been taught to take a specific and highly focused approach to treatment, working exclusively with a patient’s physical problems. Such a perspective is contrary to the demands of the primary care setting, where a broader, more inclusive approach is needed if patients are to receive comprehensive care. A considerable portion of the skills which providers must master if they are to function effectively in a primary care setting are skills and strengths which are within the purview of social work. Comprehensive care entails consideration of 1109

the many facets of a client’s life which impinge on his health. Social workers, with their real-world orientation, are well practiced in this approach to care; assessing a client with full regard for his life circumstances is a cornerstone of social work practice. The social worker’s expertise in psychosocial, cross-cultural, and socioeconomic perspectives as well as community dynamics and agency resources should be shared with all providers, regardless of discipline, as such issues must be fully considered in the assessment and management of patients. The profession’s orientation toward holistic human services, coupled with an increasing utilization of general systems approaches, provides social workers with a strong foundation for taking a leading role in the training experiences of multidisciplinary primary care providers and in the coordination of health and mental health delivery systems. With their broad, humanistic view and the new skills learned through participation in a training model such as the one described herein, social workers can function as managers in integrating multiple aspects of patient care. The possibility of assuming such a role represents a serious challenge for social work educators: if social workers are to function effectively in complex health care systems and, indeed, if they are to play a central role in ensuring comprehensive care for patients, training experiences must be designed which will prepare social workers to accept these new and difficult responsibilities. By training social work students to work competently within the evolving health and mental care systems, social workers can affect the skills and attitudes developed by those of other disciplines as well as ultimately having influence on the quality of care delivered to patients.

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Conclusion Efforts to redress the fragmentation and inaccessibility of the nation’s health/mental health resources have in recent years included the parallel development of the primary care and community mental health movements. Moreover, the President’s Commission on Mental Health in 1978 called for the coordination of public sector health and mental health service systems in order to make them more responsive to the needs of the consumer. In the same spirit, the Houston Consortium Program has been established to provide comprehensive care to patients through the inter-linking of health and mental health care systems, as well as to generate a pool of highly trained providers through interdisciplinary primary care mental health training. In the Consortium Program, the traditional adjunctive status of the social worker has been supplanted by a stronger, more active role: in terms of both systems management and clinical care, the social worker fulfills important service and training functions. With the current trend of health and mental health care moving toward greater coordination and integration, the Consortium Program can serve as a viable model for the achievement of comprehensive service delivery and training. A synthesis of social work’s holistic, systems orientation and of the new capabilities acquired through a model such as this can equip social workers to effectively assume the responsibilities of case management as defined by the President’s Commission on Mental Health (1978:24): Strategies focused solely on organizations are not enough. A human link is required. A case manager can provide this link

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and assist in assuring continuity of care and a coordinated program of services. Case management is an expediting service. The case manager should be sensitive to the disabled person’s needs, knowledgeable about government and private agencies that provide housing, income maintenance, mental health, and social services, and should be in close touch with the community’s formal and informal support systems. Through such a pivotal management role, social work can make a significant contribution to a revitalized nationwide integrated pattern of health and mental health care delivery.

Note Reprinted from Social Work in Health Care, Volume 5(1), Fall 1979.

References Adams, G.L., Brochstein, J.R., Cheney, C.C., Friese, J.H., & Tristan, M.P. A primary care/mental health training and service model. American Journal of Psychiatry, 1978, 135, 121-123. Alpert, J.J., & Chamey, E. The education of physicians for primary care (DHEW Publication No. (HRA) 74-3113). Washington, D.C.: U.S. Government Printing Office, 1974. Banta, D.A., & Fox, R.C. Role strains of a health care team in a poverty community. Social Science and Medicine, 1972, 6, 697-722.

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Borus, J.F. Neighborhood health centers as providers of primary mental health care. New England Journal of Medicine, 1976, 275, 140-145. Borus, J.F., Janowitch, L.A., & Kieffer, F. The coordination of mental health services at the community level. American Journal of Psychiatry, 1975,132, 1177-1181. Bracht, N.F. Health Care: The largest human services system. Social Work, 1974, 19, 538. Brenneis, C.B., & Laub, D. Current strains for mental health trainees. American Journal of Psychiatry, 1973,130, 41-45. Coggeshall, L.T. Planning for medical progress through education. Evanston, IL: Association of American Medical Colleges, 1965. Coordinating Council on Medical Education. Physician manpower and distribution: The primary care physician. Chicago, IL: CCMA, 1975. Department of Health, Education and Welfare, Health Resources Document. Washington, D.C.: U.S. Government Printing Office, 1971. Garcia, A. The Chicano and social work. Social Casework, 1971, 52, 174-178. Goldberg, R.L., Haas, M.R., Eaton, J., & Grubbs, J.H. Psychiatry and the primary care physician. Journal of the American Medical Association, 1976,133, 964-966.

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Gordon, W.E. Basic constructs for an integrative and generative conception of social work. In G. Hearn (Editor), The general systems approach: Contribution toward a holistic conception of social work. New York: National Association of Social Workers, 1969. Health Professional Educational Assistance Act of 1976. (S. 3239) H.R. 5546, as amended. Holland, B.C. An evaluation of the criticisms of the community mental health movement. In W.E. Barton & C.J. Sanborn (Editors), An assessment of the community mental health movement. Lexington, MA: Lexington Books, 1977. Institute of Medicine, Manpower policy for primary health care (National Academy of Sciences Publication No. 2764). Washington, D.C.: U.S. Government Printing Office, 1978. Kane, R.A. Interprofessional education and social work: A survey. Social Work in Health Care, 1976,2,2. …. Karno, M. & Edgerton, R.B. Perceptions of mental illness in a Mexican American community. Archives of General Psychiatry, 1969, 20, 233-238. Kline, L.Y. Some factors in the psychiatric treatment of Spanish Americans. American Journal of Psychiatry, 1969, 725, 1674-1681. Lazerson, A.M. The psychiatrist in primary medical care training: A solution to the mind-body dichotomy? American Journal of Psychiatry, 1976, 133, 964-966.

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Lurie, A. Social work in health care in the next ten years. Social Work in Health Care, 1977, 2, 4. National Association of Social Workers. Manpower data bank frequency distributors (NASW Publication No. 4). Washington, D.C.: NASW, 1975. Miliis, J. A rational public policy for medical education and its financing. New York: National Fund for Medical Education, 1971. Morrison, A.P., Shore, M.F., & Grobman, J. On the stresses of community psychiatry and helping residents to survive them. American Journal of Psychiatry, 1973,130, 1237-1241. Musto, D.F. The community mental health movement in historical perspective. In W.E. Barton & C.J. Sanborn (Editors), An Assessment of the Community Mental Health Movement. Lexington, MA: Lexington Books, 1977. Phillipus, M. Successful and unsuccessful approaches to mental health services for an urban hispanic population. American Journal of Public Health, 1971, 61, 820-830. President’s Commission on Mental Health. Report to the President of the President’s Commission on Mental Health, Vol. I. Washington, D.C.: U.S. Government Printing Office, 1978. Raymond, F.D. Social work education for health care practice. Social Work in Health Care, 1977, 2, 4.

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Regional Workshops on Health Manpower Distribution. Report on national health 1974-1975. New York: National Health Council, 1975. Rusnack, B. Planned change: Interdisciplinary education for health care. Journal of Education for Social Work, 1977,13, 104-111. Scherl, D.J. & English, J.T. Community mental health and comprehensive health service programs for the poor. American Journal of Psychiatry, 1969, 125, 1666-1674. Shulman, L. Social work education for health care practice: Response to Professor Raymond. Social Work in Health Care, 1977, 2, 4. Wise, H., Beckhand, R., Rubin, I. & Kyte, H.L. Making health teams work. Cambridge, MA: Ballinger, 1974.

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Commentary These articles demonstrate that medical specialization breeds social work specialization in the design of social work programs for patient populations treated by an increasing number of physician specialists (Health and Social Work, 1981). Yet these diverse programs connect with each other. Skilled, rapid assessment of clients’ needs and resources, rapid tempo of work, extended work schedules, and intensive teamwork characteristic of emergency room social work (Farber, 1978, and Groner, 1978) are to a considerable degree applicable to social work in other health care programs, for example, in trauma centers and critical care surgery units where the factors of crises and time are characteristic. These functions may also be considered, tested, and extended to quite different services and settings. For example, pediatric high-risk teams, concerned with the prevention and detection of child abuse and neglect require the same emphasis on rapid assessment, flexibility of staff’s work schedules, and close collaborative teamwork. In neonatal intensive care units, in addition to providing services to the anxious parents of the infant, social workers can help support other staff members who experience high levels of stress as they provide exacting technological care to premature and weak infants whose future is uncertain (Mahan, Krueger, and Schreiner, 1982). Likewise, as health care services are delivered through prepaid HMO plans and home health care programs, patients’ needs for psychosocial evaluation and treatment services will

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be adequately met only if social workers are successful in evolving strategies to participate actively in the development of such programs (Greene, Kruse, and Arthur, 1985). Changing demography and life-prolonging advances in medical technology have combined to create new populations of chronically ill patients with as yet incurable conditions such as Alzheimer’s disease, amyotrophic lateral sclerosis, renal failure, and cancer, among others. Formerly fatal illnesses are transformed into chronic illnesses, even in the case of the young (Ross, 1982). These and other populations require complex supports to sustain them through major and enduring difficulties in managing the routines of daily life. They need basic social as well as medical care. The emotional stress and need for support experienced by staff caring for cancer patients have been documented (Davidson, 1985). It has been observed that professionals in these settings seem readier for collaborative teamwork, probably because the nature of the stresses that accompany the treatment or conditions such as amyotrophic lateral sclerosis, for example, make the members of the care team more receptive to the support and contribution of their colleagues, both for themselves and for the patient and family. Incurable, progressive illness tends to foster closer teamwork.

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References Davidson, Kay W. “Social Work with Cancer Patients: Stresses and Coping Patterns,” Social Work in Health Care 10(4) Summer 1985, pp. 73-82. Farber, John M. “Emergency Department Social Work: A Program Description and Analysis,” Social Work in Health Care 4 (1), Fall 1978, pp. 7-18. Greene, Gilbert, Kruse, Katherine A., and Arthurs, Ruth J. “Family Practice Social Work: A New Area of Specialization,” Social Work in Health Care 10(3), Spring 1985, pp. 53-73. Groner, Edith. “Delivery of Clinical Social Work Services in the Emergency Room: A Description of an Existing Program,” Social Work in Health Care 4(1), Fall 1978, pp. 19-29. Health and Social Work 6(1), November 1981. Supplement on “Specialization and Specialty Interests.” Mahan, Carol Κ., and Schreiner, Richard L. “Management of Perinatal Death: The Role of the Social Worker in the Newborn ICU,” Social Work in Health Care 6(3), Spring 1981, pp. 69-76. Nason, Frances, and DelBanco, Thomas L. “Soft Services: A Major, Cost-Effective Component of Primary Medical Care,” Social Work in Health Care 1(3), Spring of 1976, pp. 297-308.

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Ross, Judith. “The Role of the Social Worker with Long-Term Survivors of Pediatric Cancer and Their Families,” Social Work in Health Care 7(4), Summer 1982, pp. 1-13.

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Additional Readings Barstow, Linda. “Working with Cancer Patients in Radiation Therapy,” Health and Social Work 7(1), February 1982, pp. 35-40. Becerra, Rosina M. “Knowledge and Use of Child Health Services by Chinese Americans,” Health and Social Work 6(3), August 1981, pp. 29-38. Bell, Cynthia, and Gorman, Laurel M. “The HMOs: New Models for Practice,” Social Work in Health Care 1(3), Spring 1976, pp. 325-335. Demby, Annette. “Preventive Intervention in an HMO: The Social Worker’s Role in a Marital Separation Program,” Social Work in Health Care 5(4), Summer 1980, pp. 351-360. Dillard, Robert G.; Auerbach, Kathleen G., and Showalter, Anne H. “A Parents’ Program in the Intensive Care Nursery: Its Relationship to Maternal Attitudes and Expectations,” Social Work in Health Care 5(3), Spring 1980, pp. 245-251. Dunkel, Joan, and Hatfield, Shellie. “Countertransference Issues in Working with Persons with AIDS,” Social Work 31(2), March-April 1986, pp. 114-117. Epperson, Margaret M. “Families in Sudden Crisis: Process and Intervention in a Critical Care Center,” Social Work in Health Care 2(3), Spring 1977, pp. 265-273.

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Furlong, Regina M., and Black, Rita Beck. “Pregnancy Termination for Genetic Indications: The Impact on Families,” Social Work in Health Care 10(1), Fall 1984, pp. 17-34. Gentry, Martha E. “Early Detection and Treatment: Social Worker and Pediatricians in Private Practice,” Social Work in Health Care 3(1), Fall 1977, pp. 49-59. Guendelman, Sylvia. “At Risk: Health Needs of Hispanic Children,” Health and Social Work 10(3), Summer 1985, pp. 183-190. Hancock, Emily. “Crisis Intervention in a Newborn Nursery,” Social Work in Health Care i(4), Summer 1976, pp. 421-432. Hedblom, Janice E., Hubbard, Felicity A., and Andersen, Arnold. “Anorexia Nervosa: A Multidisciplinary Treatment Program for Patient and Family,” Social Work in Health Care 7(1), Fall 1981, pp. 67-83. Hess, Howard. “Social Work Clinical Practice in Family Medicine Centers: The Need for a Practice Model,” Journal of Education for Social Work 22(1), Winter 1985, pp. 56-65. Hookey, Peter. “The Establishment of Social Worker Participation in Rural Primary Health Care,” Social Work in Health Care 3(1), Fall 1977, pp. 87-99. Koocher, Gerald. “Adjustment and Coping Strategies Among the Caretakers of Cancer Patients,” Social Work in Health Care 5(2), Winter 1979, pp. 145-150.

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Lang, Priscilla A., and Mitrowski, Christine A. “Supportive and Concrete Services for Teenage Oncology Patients,” Health and Social Work 6(4), November 1981, pp. 42-45. Lorenzo, May Kwan, and Adler, David A. “Mental Health Services for Chinese in a Community Health Center,” Social Casework 65(10), December 1984, pp. 600-609. Mahan, Carol Κ., Rosueger, Joan C., and Schreiner, Richard L. “The Family and Neonatal Intensive Care,” Social Work in Health Care 7(4), Summer 1982, pp. 67-78. Marples, Margot. “Helping Family Members Cope with a Senile Relative,” Social Casework 67(8), October 1986, pp. 490-498. Miller, Rosalind. Primary Health Care: More Than Medicine. Englewood Cliffs, N.J.: Prentice-Hall, 1983. Milner, Clara Joan. “Compassionate Care for the Dying Person,” Health and Social Work 5(2), May 1980, pp. 5-10. Mintz, Nancy. “A Descriptive Approach to Bulimia,” Health and Social Work 10(2), Spring 1985, pp. 113-119. Needleman, Sima K. “Infertility and In Vitro Fertilization: The Social Worker’s Role,” Health and Social Work 12(2), Spring 1987, pp. 135-143. Pines, Ayala, and Maslach, Christina. “Characteristics of Staff Burnout in Mental Health Settings,” Hospital and Community Psychiatry 29, 1978, pp. 233-237.

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