Coping with Physical Illness: 2: New Perspectives PDF
Preview Coping with Physical Illness: 2: New Perspectives
COPING WITH PHYSICAL ILLNESS 2: New Perspectives COPING WITH PHYSICAL ILLNESS 2: New Perspectives Edited by Rudolf H. Moos Stanford University and Veterans Administration Medical Center Palo Alto, California In collaboration with Jeanne A. Schaefer PLENUM MEDICAL BOOK COMPANY New York and London Library of Congress Cataloging in Publication Data Main entry under title: Coping with physical illness. Vol. 2 edited in collaboration with Jeanne A. Schaefer. Vol. 2 has additional title: New perspectives. Includes bibliographies and indexes. 1. Sick-Psychology. 2. Adjustment (Psychology) I. Moos, Rudolf H., 1934- II. Tsu, Vivien Davis. III. Schaefer, Jeanne A. [DNLM: 1. Adaptation, Psychological. 2. Attitude to health. 3. Stress, Psychological. BF335 C783) R726.5.C68 616.08 76-26175 ISBN-13: 978-1-4684-4774-3 e-ISBN-13: 978-1-4684-4772-9 DOl: 10.1007/978-1-4684-4772-9 © 1984 Plenum Publishing Corporation Softcover reprint of the hardcover 1st edition 1984 233 Spring Street, New York, N.Y. 10013 Plenum Medical Book Company is an imprint of Plenum Publishing Corporation All rights reserved No part of this book may be reproduced, stored in a retrieval system, or transmitted in any form or by any means, electronic, mechanical, photocopying, microfilming, recording, or otherwise, without written permission from the Publisher Contributors Sharon Price Aadalen, R.N., Ph.D., Continuing Education Con sultant, Educator, and Researcher, Edina, Minnesota Harry S. Abram, M.D., deceased, Former Professor, Department of Psychiatry, Vanderbilt University Medical School, Nash ville, Tennessee Ande Anderten, M.S.W., Department of Social Services, Mas sachusetts General Hospital, Boston, Massachusetts William R. Beardslee, M.D., Harvard Medical School and Chil dren's Hospital Medical Center, Boston, Massachusetts Herbert N. Brown, M.D., Director, Adult Psychiatric Resident Training Program, Cambridge Hospital, Cambridge, Massa chusetts Donald Brunnquell, Ph.D., Staff Member, the Children's Health Center, Minneapolis, Minnesota Denton C. Buchanan, Ph.D., Director of Psychology, Royal Ot tawa Regional Rehabilitation Center, Ottawa, Ontario, Canada Ned H. Cassem, M.D., Department of Psychiatry, Massachusetts General Hospital, Boston, Massachusetts Lino Canzona, D.S.W., Department of Social Work, King's Col lege, London, Ontario, Canada Grace Hyslop Christ, C.W.S., Assistant Director, Department of Social Work, Memorial Sloan-Kettering Cancer Center, New York, New York Martha Cleveland, Ph.D., Licensed Consulting Psychologist, 6185 Apple Road, Excelsior, Minnesota v VI CONTRIBUTORS David Ray DeMaso, M.D., Harvard Medical School and Chil dren's Hospital Medical Center, Boston, Massachusetts J. Stanley Dudrick, M.D., St. Luke's Episcopal Hospital, Houston, Texas DeAnn M. Englert, M.S.N., R.N., Nutritional Support Nurse Consultant, Denver, Colorado Dianne Fochtman, R.N., M.S.N., Clinical Specialist in Pediatric Oncology, the Children's Memorial Hospital, Chicago, Illinois Earl R. Gardner, Ph.D., deceased, formerly of Department of Psychiatry, the University of Texas Medical School, Houston, Texas Edward Goldson, M.D., Director, Family Care Center, the Chil dren's Hospital and Department of Pediatrics, University of Colorado Medical Center, Denver, Colorado Marian D. Hall, Ph.D., Staff Member, the Children's Health Cen ter, Minneapolis, Minnesota Richard C. W. Hall, M.D., Chief of Staff, Veterans Administra tion Medical Center, Memphis, Tennessee Carl G. Kardinal, M.D., Department of Internal Medicine, Ellis Fischel State Cancer Hospital, Columbia, Missouri Martin ). Kelly, M.D., Associate Director, Psychiatry Division, Peter Bent Bringham Hospital, Boston, Massachusetts Lorrin M. Koran, M.D., Department of Psychiatry and Behavioral Sciences, Stanford University and Veterans Administration Medical Center, Palo Alto, California Margarita Kutsanellou-Meyer, C.S.W., Staff Social Worker, Me morial Sloan-Kettering Cancer Center, New York, New York Carolyn). LaBarbera, Ph.D., Department of Psychiatry, Vander bilt University School of Medicine, Nashville, Tennessee Eleanor L. Levine, M.S.W., Social Service Department, Toronto General Hospital, Toronto, Ontario, Canada Emanuel Lewis, M.D., Consultant Psychotherapist, the Tavistock Clinic and Consultant Psychiatrist, Department of Child and Family Psychiatry, Charing Cross Hospital, London, England Courtney Rogers Malone, M.Ed., Learning Disabilities Specialist, Public School System, Falmouth, Massachusetts Frederick Mandell, M.D., Children's Hospital Medical Center CONTRIBUTORS Vll and the Massachusetts Sudden Infant Death Syndrome Cen ter, Boston, Massachusetts Bonnie Maslin, Ph.D., Consultant in Occupational Mental Health, New York, New York Elizabeth McAnulty, R.N., M.P.H., Children's Hospital Medical Center and the Massachusetts Sudden Infant Death Syn drome Center, Boston, Massachusetts Bernice Moos, B.S., Department of Psychiatry and Behavioral Sciences, Stanford University and Veterans Administration Medical Center, Palo Alto, California Rudolf H. Moos, Ph.D., Department of Psychiatry and Behav ioral Sciences, Stanford University and Veterans Administra tion Medical Center, Palo Alto, California Elaine M. Musial, R.N., M.S.N., Nephrology Nurse Clinician, Duke University Medical Center, Durham, North Carolina Yehuda Nir, M.D., Director of Pediatric Psychiatry, Memorial Sloan-Kettering Cancer Center and Associate Clinical Profes sor of Psychiatry, Cornell Medical Center, New York, New York William Olson, M.D., Department of Neurology, University of North Dakota, School of Medicine, Fargo, North Dakota Sally E. Palmer, M.S.W., Lecturer in Social Work, Faculty of Con tinuing Studies, University of Western Ontario, London, On tario, Canada Mark Perl, M.B.B.S., Department of Psychiatry, University of California Service, San Francisco General Hospital, San Fran cisco, California Sylvia Poss, M.A., Chief Social Worker, Johannesburg Hospital, Johannesburg, South Africa Beth S. Price, M.S.W., Social Service Department, Toronto Gen eral Hospital, Toronto, Ontario, Canada Robert M. Reece, M.D., Children's Hospital Medical Center and the Massachusetts Sudden Infant Death Syndrome Center, Boston, Massachusetts Judith A. Ritchie, R.N., Ph.D., Associate Professor, Graduate Program of the Dalhousie University School of Nursing, Halifax, Nova Scotia, Canada Robert Roelofs, M.D., Department of Neurology, University of Minnesota School of Medicine, Minneapolis, Minnesota vnl CONTRIBUTORS Peter Rothstein, M.D., Department of Anesthesiology and Pedi atrics, Yale University School of Medicine and Director, Pedi atric Intensive Care Unit, Yale New Haven Hospital, New Haven, Connecticut Judith B. Sanders, M.S.N., R.N., Director of Nursing, Fulton State Mental Hospital, Fulton, Missouri Jeanne A. Schaefer, R.N., Ph.D., Department of Psychiatry and Behavioral Sciences, Stanford University and Veterans Ad ministration Medical Center, Palo Alto, California David Spiegel, M.D., Department of Psychiatry and Behavioral Sciences, Stanford University School of Medicine, Stanford, California Sondra K. Stickney, R.N., Hermann Hospital, Houston, Texas Florence Stroebel-Kahn, R.N., B.S.N., Independent Consultant, Speaker, and Educator, Minneapolis, Minnesota I. David Todres, M.D., Joseph S. Barr Pediatric Intensive Care Unit, Children's Service, Massachusetts General Hospital, Boston, Massachusetts Alice Stewart Trillin, Educational Consultant, New York City Lokky Wai, M.A., Department of Social Work, University of Western Ontario, London, Ontario, Canada David A. Waller, M.D., Director, Child and Adolescent Psychia try, Department of Psychiatry, University of Texas Health Science Center, Dallas, Texas Avery D. Weisman, M.D., Project Omega and Department of Psychiatry, Massachusetts General Hospital and Harvard Medical School, Boston, Massachusetts Irvin D. Yalom, M.D., Department of Psychiatry and Behavioral Sciences, Stanford University School of Medicine, Stanford, California Milford Zasslow, M.D., Department of Psychiatry and Behavioral Sciences, Stanford University and Veterans Administration Medical Center, Palo Alto, California Preface This book provides new ideas about how patients and their fami lies cope with serious health crises. Biomedical knowledge has expanded abruptly in the past decade during which time diag nostic and treatment procedures have become unusually specific and effective. Similarly, important advances have taken place in our understanding of the central role of psychosocial factors in health and illness. Recent trends have sparked the formulation of useful concepts of coping skills and social resources and have empha sized the value of an active assertive role for patients in the pro cess of obtaining health care. The emergence of subspecialties such as behavioral medicine and health psychology has stimulated renewed interest in these areas. Moreover, the growth of holistic medicine and a biopsychosocial orientation highlights the contri bution of a psychosocial perspective in an integrated framework for providing health care. To cover these diverse trends, I offer a unified conceptual approach for understanding the process of coping with the crisis of physical illness and identifying the underlying adaptive tasks and domains of coping skills involved in this process. The first half of the book covers coping with selected health crises, such as birth defects and perinatal death, childhood and adult cancer, and chronic physical disabilities. The second half of the book covers "the crisis of treatment" and emphasizes the coping tasks evoked by the hospital environment and radical new medical treatments as well as the stresses faced by health care staff and issues that are elicited by death and the fear of dying. As in my earlier book on this topic, the material highlights the fact that IX x PREFACE most individuals cope effectively with life crises, even though dis turbing symptoms and disorganization sometimes occur. I em phasize the idea that a life crisis is a critical juncture-a key turn ing point-during which patients and their families are uniquely open to the influence of professional caregivers. Because such influence can be for better or for worse, health care staff assume a potent responsibility for promoting effective coping. Coping with Physical Illness: New Perspectives is conceived broad ly to meet the needs of a diverse audience. There is a wealth of existing knowledge about how human beings cope with physical illness and disability, but the information is scattered widely throughout the literature. The selections contained in this book were identified after a search of well over 100 journals and peri odicals. The resulting material is relevant to selected courses in schools of nursing, medicine, and public health-particularly in departments of psychiatry, behavioral sciences, epidemiology, and family and community health-and in health education pro grams. It is also useful for selected courses in departments of psychology, sociology, and social work. The concepts and practical ideas are of special value to nurses and nursing students, social workers, medical students, physical therapists, occupational therapists, and pastoral and other coun selors who work in health care settings. They should also be useful in nurse practitioner, physician's assistant, and other paramedical training programs. Each of these groups is centrally concerned with the way in which patients and their families cope with the personal crises of illness, hospitalization, and treatment. The book has 11 parts. Part I provides a historical perspective on the importance of psychosocial factors and coping processes in health and illness. The overview presents a conceptual approach that helps to understand the crisis of physical illness. It also out lines seven basic adaptive tasks and offers a new framework of nine sets of coping skills that fall into three major coping domains. Parts II through V present information about the crisis of illness and injury. Part II covers birth defects and perinatal death and emphasizes parental reactions to the birth of a premature or unhealthy baby, the process of mourning after a stillbirth or neo natal death, and fathers' responses to sudden unanticipated in fant deaths. Part III describes a systems approach to the process of coping with childhood cancer, the problems encountered by PREFACE Xl children who must have a limb amputated, and the diverse coping strategies employed by adolescents who have leukemia. Part IV highlights the crisis of cancer among adults. The selections provide a model for psychosocial phasing in cancer and describe the adaptive coping styles used by adult leukemia pa tients in remission, and one patient'S incisive ideas about how health care staff can facilitate coping. Part V covers chronic condi tions among children and adults, including the reactions of fami lies to children with Duchenne muscular dystrophy, family adap tation to a child's traumatic spinal cord injury, and a personal account of the process of coping with quadriplegia. Parts VI through IX provide information on the crisis of hospitalization and treatment procedures. Part VI covers issues in the psychological care of pediatric oncology patients, special prob lems experienced by families of children who are being treated in a pediatric intensive care unit, and the way in which families and health care staff communicate and cope with fateful prognoses. Part VII describes the stages of bone marrow transplantation and the factors that affect coping of adolescents and their family members on reverse isolation units. Part VIII focuses on kidney dialysis and transplantation. The articles highlight the stages of adaptation to hemodialysis, the way in which patients and spouses cope with long-term home dialysis, and the issues patients and their families face in selecting a living related kidney donor. Part IX describes the early and later psy chological and social responses of patients who are on total par enteral nutrition. Part X examines the stress entailed in working in health care settings and how staff members cope with them. The selections describe the syndrome of caregiver's plight, the way in which mutual support and information groups can promote effective coping among staff and how hospital work environments can be improved and made less stressful for staff. Part XI emphasizes death and the fear of dying. The selec tions cover the adaptive tasks faced by terminal patients and the value of mutual support groups in helping persons who have only a short time to live confront their final crisis. The last article contains a moving account of the support that can be provided for a person who wishes to die at home. I have compiled and organized this book in collaboration
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