CALIFORNIA STATE UNIVERSITY, NORTHRIDGE SUPPORT GROUP FOR CAREGIVERS OF CHRONICALLY ILL PERSONS A project submitted in partial satisfaction of the requirements for the degree of Master of Public Health by Sharron Zollotuchen Levey May, 1983 The project of Sharron Zollotuchen Levey is approved: Michael V. Kline, Dr. P. H. Committee Chairman California State University, Northridge ii ACKNOWLEDGEMENTS Support is the essence of this project and I am blessed to have the support of many persons in its planning, development and completion. First, I wish to express my sincere appreciation to my husband, Stan, and daughter, Judith, for their interest, support and encouragement. Their love and understanding has motivated me throughout my graduate studies. The pride and encouragement shown by my parents, Ben and Eva Zollotuchen, has always been motivating fac­ tors for me and I thank them too. Special gratitude is extended to the administration and staff of National In-Home Health Services, the agency in which my field placement experi­ ence occurred and where this project was conceived, planned and implemented. This same gratitude is extended to the Van Nuys Senior Multipurpose Center. The support and guidance of Ruth Geagea, Associate Director of Nursing Services and Director of Educational Activities at NIHS, and also a member of my thesis com­ mittee, is deeply appreciated. I am also indebted to other members of my committee: to Dr. Goteti Krishnamurty, I thank him for his gentleness and calm in the storm of academia~ and to Dr. Michael Kline, no words can express iii the gratitude I feel for his support, guidance and friendship. He has been an inspiration to me profes­ sionally and personally. In addition, I would like to thank my neighbor, Louis Fletcher, who provided access to his Apple Computer word processor just when it was most needed. I also thank my physician, Dr. David Smith, for providing the support and medication to prevent this project from giving me an ulcer! With love, I dedicate this project to all of the persons who have supported me! iv TABLE OF CONTENTS Page APPROVAL . • . ii ACKNOWLEDGEMENTS iii LIST OF FIGURES vii ABSTRACT . viii CHAPTER I. INTRODUCTION . 1 Statement of the Problem . 4 Purpose of the Project . 5 Major Study Assumptions 5 Limitations of the Study .. 6 Definitions 7 II. LITERATURE REVIEW 10 SUPPORT GROUPS - GENERAL 12 HISTORICAL DEVELOPMENT OF SUPPORT GROUPS • . • . 26 CASE STUDIES AND SUPPORT GROUP RESEARCH . • . 35 SUPPORT GROUP TAXONOMIES AND TYPOLOGIES . 46 THE EFFECTIVENESS OF SUPPORT GROUPS 57 HEALTH EDUCATION AND THE SUPPORT GROUP SETTING . • 74 III. METHODOLOGY 82 IV. RESULTS AND DISCUSSION OF FINDINGS . 95 v CHAPTER Page V. SUMMARY, RECOMMENDATIONS AND CONCLUSIONS . 103 BIBLIOGRAPHY . 110 APPENDIXES . 118 1. PROGRAM PLAN 119 2. COURSE OUTLINE/CONTENT 122 3. PROJECT REPORT TO NATIONAL IN-HOME HEALTH SERVICE . 124 Vi LIST OF FIGURES Figure Page 1 Definition of a Support Group 9 2 Self-care . 24 3 Therapeutic Method Comparison . 50 4 Structural Continuum Classification of Self-Help Groups . • 56 5 A Model of the Mechanisms of Impact in (Self-Help) Groups .••..•• 59 6 Professional vs Self-Help Therapy 61 7 Continuum of Professional/Client to Friendship Type of Relationships 62 8 Patient Education versus Self-Care Education . • . 80 9 Comparison of Project's Group to Components of Model Support Group o o • o • • • • 99 10 Characteristics and Changes in Knowledge, Attitudes, and Behavior •.......... 101 vii ABSTRACT SUPPORT GROUP FOR CAREGIVERS OF CHRONICALLY ILL PERSONS by Sharron Zollotuchen Levey Master of Public Health This exploratory study involved the design, implementation and evaluation of a support group for caregivers of chronically ill persons. A primary aim of this research was to establish the utility of the sup­ port group setting as a health education vehicle. The bulk of this study was devoted to an extensive literature review in order to provide a current compilation of what support groups are, the stimulus for their occurrence, their history, current scientific re­ search, taxonomies in use, how support groups work, their effectiveness, and their use as a vehicle for health education. The bibliography is coded to provide future reference in the above stated areas. viii Using the literature review as a background, and on the basis of a needs assessment conducted at a community-based home health agency, a support group for caregivers of chronically ill persons was developed at the Van Nuys Senior Multipurpose Center in co-sponsorship with that Center. The feasibility of using these groups as a vehicle for health education programs was examined. A protocol for possible future support group sessions was developed. Study conclusions validated the utility of these popular types of self-help groups. Furthermore, the study demonstrated the continued necessity for in-depth research concerning the functioning and effectiveness of these groups as a viable vehicle for formal versus informal health education. ix CHAPTER I INTRODUCTION In the practice of mutual aid, which we can retrace to the earliest beginnings of evolution, we thus find the positive and undoubted origin of our ethical conceptions; and we can affirm that in the ethical progress of man, mutual support - not mutual struggle - has had the leading part. In its wide extension, even at the present time, we also see the best guarantee of a still loftier evolution of our race (Kropotkin 40:430). When Petr Kropotkin wrote to the Social Darwinists of his time, 1914, about the evolution of man and the necessity for mutual aid/support, little did he know that by the 1980's there would be nearly one-half million self- help/support groups across our nation (1). Owing to the complexities and pressures (economic and social) in our society, resulting in fragmentation and isolation of individuals, the drive for "connection" and "support" from others has been magnified. Included in the numbers of support groups are those for persons with specific disease entities. Many of these focus on chronic illnesses. The growth and proliferation of the current self-help movement coincide with the period since the 1920's of the shift in major health problems from acute to chronic illness and toward condi­ tions requiring extended attention. Today there is the very high probability that any one indi­ vidual will be affected by some chronic condition 1 2 at least once, if not more often, in the course of a lifetime (22:412). There is then a rise in the numbers of persons with chronic diseases. Fifty years ago 30 percent of all ill- nesses were chronic; today chronic diseases account for more than 80 percent. Figures from the United States Public Health Service (USPHS) indicate that chronic dis- eases now afflict approximately half of the population and account for 70 percent of all doctor visits (9:103). One reason given for the establishment and proliferation of self-help groups is that they represent a response to "fill the gap" in existing medical services with regard to care of persons with chronic diseases and all the associated coping mechanisms which are not being met (9, 19) . Self-help groups provide assistance, encouragement and needed services for those with chronic, disabling conditions involving a number of emotional and social adaptive problems • . In view of the functions they perform, they seem to fill an important gap in the network of agencies and professional practitioners making up the health delivery system (22:407). The health provider community can no longer doubt that the self-care/self-help movement with its associated mutual aid/support groups exist and seem to satisfy its participants. Governments and professional organizations are beginning to focus on this movement. The World Health Organization ('i'VHO) sees as its goal "Health for all by the year 2000" and the vehicle for this goal to be an 3 adequate system of primary care. One essential component of primary care is community participation, sharing and support which includes recognition of the self-help move­ ment (63:415). "There now exists self-help groups under almost every one of the 17 WHO disease categories" (6:16). In order to reach the WHO goal, planned and systematic steps must be taken to disseminate health information. The support group setting is an ideal place for this to occur and the health educator may be an ideal facilitator. The use of health educat1on with self-help groups has already occurred on two levels: 1) as a result of the group initially being set up and/or promoted by health professionals, the purpose of which to be patient educa­ tion regarding care and coping with a specific disease entity or condition (i.e., burn centers, Multiple Sclerosis groups); and 2) as a result of a request for information, or expertise of a health professional, by an existing non-professionally connected support group. How­ ever, the feasibility of formally or informally incorpo­ rating a program of health education into the support group setting has only just begun to be scientifically explored. This is the task required of the health pro­ vider community if the goal of "Health for all by the year 2000" is to be reached. 4 Statement of. the Problem The effectiveness of bringing together individuals who share corr~on health problems appears to be based not only in the tendency to trust and conform to the judgement of others who have the same problem •.. , but also in the quality of pert~nent and understandable discussion and mutual reinforcement that occurs among participants in such groups (19:166). An intervention program such as a self-help or support group " ... has (been) found (to) give members an opportunity to share concerns, clarify problems and roles and develop skills for problem solving and coping" (26, 81:654).