Jose Man uel Cal h «si mos CHRONIC DISEASE AND FAMILY COPING: A STUDY IN URBAN PORTUGAL The University of Connecticut 1 986 Jose IVIianuel CZskX Kiei ros CHRONIC DISEASE AND FAMILY COPING: A STUDY IN URBAN PORTUGAL The University of Connecticut 1 986 y y *0 CHRONIC DISEASE AND FAMILY COPING: A STUDY IN URBAN PORTUGAL Jose Manuel Calheiros, M.D., M.P.H., Ph.D. The University of Connecticut, 1986 Cerebrovascular Disease (CVD) is extremely frequent in Portugal, where it has been the leading cause of death for several decades. In 1979, CVD accounted for 23.4 percent of all deaths. Nevertheless, information describing sociocultural and epidemiological aspects of CVD is very limited in the Portuguese health and/or social sciences literatures. These disorders, which present themselves under a wide severity range, often require multidisciplinary, organized, and integrated forms of care , aiming at minimizing its impact on the individual, the family and the community. In Portugal, despiste the importance of these disorders, an explicit national policy has never been formulated. Currently there are no organized programs for the support of CVD patients and their families. This research was conducted in Porto - a large urban area in Northern Portugal - on patients with several forms of CVD. Quantitative and qualitative methods are used to describe the current patterns of disease in Porto, and the approaches of Jose Manuel Calheiros -- The University of Connecticut, 1986 the contemporary Portuguese social and health care systems that attempt to meet the broad needs of these patients and their families. Family coping abilities and strategies are studied here under the process of adaptation, using the ecological model of illness. Family variations are accounted for in terms of a set of sociocultural and economic variables . The data show that: (1) the frequency of CVD in Porto is high when compared with equivalent studies in other communities. Particularly high frequencies were found for hemorrhagic stroke, especially in males aged 64 or less; (2) the contemporary Portuguese health care system heavily relies on families as a major source of care during both acute and non-acute phases; (3) although most families were identified as coping satisfactorily, a small number of families is particularly vulnerable to the social consequences of stroke and have major difficulties in providing the family component of care implicit in the present health system. Education (patient and maximum family level) was identified as the major determinant of successful adaptation; (4) current rehabilitative approaches have major limitations both in terms of the type of services available and in patient selection. CHRONIC DISEASE AND FAMILY COPING: A STUDY IN URBAN PORTUGAL Jose Manuel Lage Campelo Calheiros M.D., University of Porto, 1972 M.P.H., University of Connecticut, 1985 A Dissertation Submitted in Partial Fulfillment of the Requirements for the Degree of Doctor of Philosophy at The University of Connecticut 1986 Copyright by Jose Manuel Calheiros 1986 APPROVAL PAGE Doctor of Philosophy Dissertation CHRONIC DISEASE AND FAMILY COPING: A STUDY IN URBAN PORTUGAL Presented by Jose Manuel Lage Campelo Calheiros, M.D., M.P.H Major Adviser: Pertti j(_^Pelto ~T~ Associate Adviser ' SVe p h a n , D / jjy6h e n s u 1 Associate Adviser DavidTK G r e^go r i o The University of Connecticut 1986 11 PREFACE AND ACKNOWLEDGMENTS Cerebrovascular Disease (CVD) is extremely frequent in Portugal, where it has been the leading cause of death for several decades. In 1979, CVD accounted for 23.4 percent of all deaths. Nevertheless, information describing socio- ;ultural and epidemiological aspects of CVD is very limited in the Portuguese health and/or social sciences literatures. These disorders, which present themselves under a wide severity range, often require multidiscipliaary, organized, and integrate.. forms of care, aiming at minimizing its impact on the individual, the family, and the community. In Portugal, despite the importance of these disorders, an explicit national policy has never been formulated. Currently there are no organized programs for the support of CVD patients and their families. This research conducted in Porto — a large urban area in Northern Portugal -- focus on patients with several forms of CVD. It also describes the current disease patterns in Porto, and examines the approaches of the contemporary 111 Portuguese social and health care systems that attempt to meet the broad needs of these patients and their families. This research views the sum of the current individual management strategies as the implicit policy and/or programs and, accordingly, analyses the implications in a family perspective. Family coping abilities and strategies are studied here under the process of adaptation, using the ecological model of illness. Family variations are accounted for in terms of a set of sociocultural and economic variables . Although this project is based in a major health institution, it should be emphasized that the research herein presented and the problems identified are not limited to the research institutional base. My previous experience in other areas and settings in Portugal, and the reported experiences of colleagues working in other health institutions throughout the country, clearly suggest that the problems associated with the care of CVD patients are of national character and constitute reason for a national concern . I am therefore grateful to all institutions and individuals that made this research possible. My deepest gratitude is due to the members of the Clinical and Administrative Boards of the Hospital Geral de Santo Antonio, Porto, for their understanding of the need to develop this research from inside the hospital into the IV community. I am particularly indebted to Dr. Castro Lopes (Director of Clinical Services) and Dr. Mario Pereira (Hospital Director) for their support and confidence, which was also crucial in obtaining the required permissions from the Portuguese authorities in order for me to attend the present academic program at the University of Connecticut. I believe this research will help develop further activities and programs involving the community, the Hospital Geral de Santo Antonio, and the Instituto de Ciências Biomédicas, "Abel Salazar". I also wish to convey my deepest gratitude to the Calouste Gulbenkian Foundation for the generous fellowship support which made possible this academic program, and to the University of Connecticut for the scholarship that covered tuition during this period. This research was also supported in part by a grant from the University of Connecticut Research Foundation. To my major supervisor, Pertti J. Pelto, I owe special thanks. His vision of the relationships between Anthropology and Health Sciences deeply contributed to improve my understanding of the complexities of this multidisciplinar y area. I am particularly grateful for his understanding of my identity as a health professional to which social sciences have added new roles and responsibilities. Stephen Schensul and David Gregório, associate advisors in this project, have been colleagues and friends as well. v Together with Holger Hansen, who was associated advisor till is sabbatical leave, they immensely contributed to the stimulating academic environment I encountered at the University of Connecticut. My deepest gratitude also goes to Professors Corino de Andrade (Instituto de Ciências Biomédicas "Abel Salazar", University of Porto), Aloisio Coelho (Director, National Institute of Health, Lisbon, and Chairman, Department of Community Health, Instituto de Ciências Biomédicas "Abel Salazar", University of Porto) and James E. C. Walker (former Chairman, Department of Community Medicine and Health Care, University of Connecticut Health Center). Professors Corino de Andrade and Aloisio Coelho have honored me with their support and confidence since the very beginning of my career in Community Health, while Professor's James Walker vision of international community health created the opportunity for this program. This research is dedicated to them. I also wish to thank my colleagues and friends Antonio Leite Carneiro, M.D. (Department of Neurology, Hospital Geral de Santo Antonio), and Benjamin Crabtree (Doctoral Candidate, Department of Anthropology, University of Connec• ticut) for their professional help and support, especially for caring to take time from their busy schedules to provide answers to my requests. Antonio Carneiro reviewed neurologic information, particularly CT scans, and Benjamin vi Crabtree provided statistical and computer expertise. My gratitude also goes to three groups of people without whom this research was not possible. I thank Belarmino Gomes and his colleagues of the "Serviço de Doentes" (Hospital Geral de Santo Antonio) for their patience and support, and the group of students from the Department of Community Health lead by Teresa Oliva, with whom I shared'the joys and hardships of field research. Last and above all, I wish to convey my deepest gratitude to the patients and their families for accepting to participate in one more research that did not offer immediate solutions .to their often dramatic problems. The main intention of this research was to identify these problems and special vulnerable groups. I hope that, in the near future, the information gather this way will make possible the development of appropriate mechanisms which, through the involvement of patients and their families, local