Related Titles Catalano Health, Behavior and the Community: An Ecological Perspective Gatchel/Price Clinical Applications of Biofeedback: Appraisal and Status Katz/Zlutnick Behavior Therapy and Health Care: Principles and Applications McDaniel Physical Disability and Human Behavior, 2nd Edition SPINAL CORD INJURIES Psychological, Social and Vocational Adjustment Roberta B. Trieschmann Director of Psychological Services St. Jude Hospital and Rehabilitation Center, Fullerton, California Pergamon Press New York D Oxford D Toronto D Sydney D Frankfurt D Paris Pergamon Press Offices: U.S.A Pergamon Press Inc., Maxwell House, Fairview Park, Elmsford, New York 10523, U.S.A. U.K. Pergamon Press Ltd., Headington Hill Hall, Oxford 0X3 OBW, England Pergamon of Canada Ltd., 150 Consumers Road, Willowdale, Ontario M2J 1P9, Canada AUSTRALIA Pergamon Press (Aust) Pty. Ltd., P.O. Box 544, Potts Point, NSW 2011, Australia FRANCE Pergamon Press SARL, 24 rue des Ecoles, 75240 Paris, Cedex 05, France FEDERAL REPUBLIC Pergamon Press GmbH, 6242 Kronberg/Taunus, OF GERMANY Pferdstrasse 1, Federal Republic of Germany Copyright © 1980 Pergamon Press Inc. Library of Congress Cataloging in Publication Data Trieschmann, Roberta B 1939- Spinal cord injuries. (Pergamon general psychology series) Bibliography: p. Includes index. 1. Spinal cord-Wounds and injuries-Psychological aspects. 2. Spinal cord-Wounds and injuries-Social aspects. 3. Paralytics-Rehabilitation. I. Title. (DNLM: Spinal cord injuries-Psychology. 2. Spinal cord injuries-Rehabilitation. WL400 T827a) RD594.3.T74 1979 155.916 79-20266 ISBN 0-08-024661-3 All Rights reserved. No part of this publication may be reproduced, stored in a retrieval system or transmitted in any form or by any means: electronic, electrostatic, magnetic tape, mechanical, photocopying, recording or otherwise, without permission in writing from the publishers. Printed in the United States of America To Clyde List of Figures and Tables . Fig 1.1 Vertebral Column and Nerve Supply .................... 5 1.2 Age at Onset of Spinal Cord Injury ..................... 16 ................................... 2.1 The Medical Model 25 2.2 The Learning Model ................................... 27 2.3 B = f (P x 0 x E) . Behavior is a Function of the Person (P). the Organism (0).a nd the Environment (E) ............. 28 Table 1.1 Incidence of Paraplegia and Quadriplegia by Cause of Injury., .................................. 17 1.2 Cause of Spinal Injury According to Sex ...............1 7 1.3 Cause of Injury for Different Racial and Ethnic Groups ..................................... 18 1.4 Cause of Spinal Injury within Different Age Groups ..... 18 6.1 Parameters of Sexual Function Following Spinal Injury ...................................... 139 Preface There are few physical disabilities that are as complex and as challenging as spinal cord injury. The psychosocial impact of the disability on a human life has been underestimated and only recently have hospitals and rehabilitation centers been including clinical psychologists and others trained in the be havioral disciplines on the staff. Yet professionals have found that little has been reliably demonstrated about the process of adjustment to severe disabil ity, and myths have been perpetuated without question. Therefore, this book has been written in order to identify what we know and do not know about the process of adjustment to a severe disability—spinal cord injury. Persons with severe disabilities have much to say about the process of adjustment to such problems. Recently, consumers of rehabilitation services have become more vocal regarding procedures and regulations affecting their daily lives. Yet a large number of professionals do not know what the concerns of the disabled community are because there has been a distance between the professionals and the consumer groups. Therefore, this book has been written with the further intention of imbuing the viewpoints of professionals with the realities of daily life of those with disabilities. Many people believe that work in the field of physical disability must be depressing because they have a vision of custodial care and of crippled lives filled with sadness and lost dreams. In actuality, rehabilitation of the physi cally disabled is especially rewarding because of the potential that exists in human beings in the face of stress, a potential that has been seriously under estimated. Physical disabilities occur to our family members, our friends, and our neighbors. Therefore, this book has also been written in order to present a different image of work with the disabled—an image of hope and ample reward for those in many disciplines. This work should be useful to psychologists, social workers, vocational counselors, physicians, nurses, occupational therapists, physical counselors, physicians, nurses, occupational therapists, physical therapists, and recrea tional therapists, either as students or practicing professionals. It will serve to dispel myths and to provide a more empirical basis for research and clinical practice. Many questions have been identified and few answers given. Thus, there is an emphasis on the critical evaluation of past literature and research since so much has been uncritically accepted as fact, yet so much needs to be demonstrated as true. xi xìì Preface A significant portion of the research for this book was financed by a research grant from the Rehabilitation Services Administration, HEW, to do a state- of-the-art study of the psychological, social, and vocational adjustment to spinal cord injury (Trieschmann 1978a). This project involved an exhaustive review of the literature, an advisory committee, a conference of professionals, and a conference of persons with spinal cord injury. This latter group served as a consumer advisory panel to this author after the project ended and during the writing of this book. They reviewed the manuscript and made suggestions for additions or changes. It is of interest to note that the one feature of this book that they prized the most was the critical evaluation of the literature on adjustment to disability. Apparently, they have felt victimized by profession als who write articles about the reactions to disability that are based more on theory than fact. Thus, if this book serves any purpose, it will be to prompt a moratorium on speculation and theorizing and increase our efforts to provide an empirical basis for our professional activities with the disabled population. Acknowledgments There are many individuals and organizations that have provided invaluable assistance during the research and writing of this book. The Easter Seal Society of Los Angeles County provided the fiscal management of the re search grant from the Rehabilitation Services Administration, and I am grate ful to Alan H. Facter, executive director, and June Taylor, program director, for their kindness and support. J. Paul Thomas of the Rehabilitation Services Administration has provided unlimited support for this endeavor. His encour agement is much appreciated. The advisory committee for the research phase included Theodore M. Cole, M.D., George W. Hohmann, Ph.D., Mary Ann Mikulic, M.N., R.N., Mary Romano, M.S.W., and Carolyn L. Vash, Ph.D. Their help was invaluable in providing structure and advice throughout the research phase. Gary T. Athelstan, Ph.D., David Barrie, Mickey Christ- iason, M.T.R.S., Wayne Dexter, Ph.D., Wilbert Fordyce, Ph.D., Richard T. Goldberg, Ed.D., Robert Allen Keith, Ph.D., John Marr, Ph.D., and N. Elane Wilcox, Ph.D., provided inputs which were helpful in the formulation of the manuscript. Particular thanks must be expressed to my consumer advisory panel: Gerald Davis, Glenn Goldmann, Allan Jarabin, Phillip Kaplan, Nancy Becker Ken nedy, Polly McBroom, Tad Tanaka, and Sheila Velez. Their interest and time were freely given and without their help this book would have been of little value. The data contained in figure 1.2 and tables 1.1, 1.2, 1.3, and 1.4 are derived from information contained in the National Spinal Cord Injury Model Systems Conference: Proceedings (1978). My colleagues at St. Jude Hospital and Rehabilitation Center have been extremely patient while I finished the manuscript, and Dr. Francis Mackey, medical director, and my staff, Mrs. Judy Stewart, and Mrs. Billie Martin have been particularly supportive during this trying period. I truly appreciate their understanding and help. Sister Jane Frances, president of the hospital, generously supported this effort and provided the assistance of her secretary, Mrs. Deborah Hlavac, to type a large part of the manuscript. For this I am very grateful, and I must commend Mrs. Hlavac for her consistent cordiality and outstanding secretarial skills. Throughout the three years of this endeavor, my husband, A. Clyde Flack- bert, Ph.D., has lived the experience with me, serving occasionally as typist, xerographer, collator, proofreader, sounding board, critic, and moral support er. I am deeply grateful for his love and support which have made this effort possible. xiii 1 The Consequences of Spinal Cord Injury A STATEMENT OF THE PROBLEM Spinal cord injury is a low incidence but high-cost disability that usually requires tremendous changes in the person's style of life. It has been estimated that there are 150,000 persons with spinal injuries in the United States at the present time and that 7,000 to 10,000 new spinal injuries occur each year (National Spinal Cord Injury Model Systems Conference 1978). Approxi mately 62 percent of the spinal injuries occur to persons aged 15 through 29. Thus, the population is young, and with the advances in medical science, this group may achieve a life expectancy that is not too different from that of the able-bodied person. However, estimates of the lifetime care costs for the average person with quadriplegia are $325,000 to $400,000 (using a conserva tive estimate of life expectancy of 50 percent less than normal). The lifetime care costs for persons with paraplegia are estimated to be $180,000 to $225,000 (National Spinal Cord Injury Model Systems Conference 1978). As a result, the financial burden imposed upon the person, the family, and the nation is tremendous. Yet any estimate of the cost of spinal injury must include those intangible issues to which a monetary value cannot be attached. These issues include: the devaluation of the disabled person by society; the frustrations and hard work associated with the daily activities of survival; the stress on family relation ships and traditional roles; and the loss of satisfaction from vocational and leisure time activities which may no longer be possible after spinal injury. Thus, it is these issues that become the core of the process of adjustment to spinal injury. Among the several definitions of the word ' 'adjustment,' ' the Random House Dictionary (1973) includes two that are relevant to the topic of this book: "the act of bringing something into conformity with external require ments; harmony achieved by modification or alteration of a position." 3 4 Spinal Cord Injuries The onset of a spinal injury introduces many physical impairments that change the person's ability to carry out activities such as ambulation, groom ing, toileting, and many other activities of daily living (ADL). In addition to the physical impairments, there are psychosocial consequences that have a profound impact on the person's perception of himself or herself. Therefore, adjustment is necessary because the external requirements for living suddenly change after spinal injury. However, adjustment, under these circumstances, will be a whole series of acts and, consequently, it is more appropriate to discuss the process of adjustment to spinal injury. The goal of this adjustment process will be harmony between the person and his or her new circumstances of life. Yet, harmony is not necessarily synonymous with happiness for able-bodied or disabled persons, and within all of our lives there will be changes, new demands, new stresses to which we must accommodate and adjust, always with the aim of achieving harmony with our own environment. This is a daily process and the degree of harmony that we achieve will vary over time. Thus, it is no different for a newly disabled person. The onset of a spinal injury will place a person in disharmony with many aspects of his or her world, and, therefore, the process of adjustment may be long and complicated, difficult and multifaceted. THE PHYSICAL SEQUELAE OF SPINAL CORD INJURY An injury to the spinal cord may produce symptoms that are temporary or permanent and impairment of function that may be incomplete or complete. An incomplete lesion is one in which certain amounts of motor and sensory function below the level of the injury will be intact, whereas a complete lesion is one in which sensory and motor loss is total below the level of the injury. Consequently, the implications for future functioning may be significantly different for two individuals who are injured at the same vertebral level if one has a complete lesion and one has an incomplete lesion. Motor and sensory function will vary depending upon the level of the injury. Those injuries occurring at the cervical level of the vertebral column (neck) will result in quadriplegia (if complete) or quadriparesis (if incomplete). Injuries occurring in the thoracic, lumbar, or sacral regions of the vertebral column (trunk or low back) will result in paraplegia (if complete) or paraparesis (if incomplete). Figure 1.1 displays the vertebral column and the nerve supply to the body. In this section, some of the physical impairments and complications of spinal injury will be reviewed briefly. They are: paralysis of motor function, loss of sensation, loss of bladder and bowel control, and an altered ability to participate in the physical parameters of sexual relationship.