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Unending Work and Care: Managing Chronic Illness at Home
Patient Education and Counseling, 12 (1989) 201- 203 Elsevier Scientific Publishers Ireland Ltd.
Book Reviews Unending
Publishers, Unending
Work and Care: Managing
San Francisco,
Chronic
Illness
at Home,
Jossey-Bass
1988.
Work and Care: Managing
Chronic Illness at Home appears
to be the culmination of extensive research and work with chronically ill persons and their families. This book focuses on how these individuals manage the disease and their lives simultaneously, attempting to live a “normal life” in spite of the illness. The book is very current, well documented, and follows a rational course, looking at chronic illness from pre-diagnosis, through remissions and exacerbations and deterioration to death, blending research, theory and actual case studies. The first half of the book is very heavy on theory. There are times when one must ask, “So what?’ So what if there are illness trajectories, biographical work, etc.? How can that help the chronically ill person attempting to manage at home? This problem is remedied in the second half when the authors analyze actual case studies in great detail, applying the theory presented. The last chapter, “The Unending Work and Care Associated with Chronic Illness”, was most useful. It presented an overview of the book, highlighting the signficance of each chapter and bringing the information into focus. If the authors had used this technique in some of the earlier chapters, the information would have had more impact. This book is long overdue. For too long, health care practitioners and educators have focused on the acutely or terminally ill person. We have little information to help us meet the special needs of the chronically ill, other than to hear that they are “custodial” and need only “maintenance care”. Through actual examples, this book proves that the chronically ill person does indeed need special “care and handling” to make the most of a life which is totally altered by a lingering disease. This does not come easy. It requires a different mind set and attitude which will build on the patient’s and family’s strengths while minimizing the effects of the illness. This is where this book will be most useful. If used as a textbook for health care practitioners (nurses, counselors, social workers, physicians, etc.) in a setting where the information can be applied to actual patient-family situations, the practitioners would develop some of the skills and insights needed to care for the chronically ill person and provide support to the family. Our educational system must focus on the special needs of the chronically ill and this book would serve as a great resource. I have one relevant wish to end this review. We must educate the practition-
201
ers in care of the chronically ill and we must also focus on payment. It would be great if someone could condense this information so the everyday person would recognize the unique skills required in caring for the chronically ill person. Then, we could send a copy to every person who has anything to do with health care financing (legislators, insurance companies, case managers, etc.). We cannot continue to escape financial responsibility for the chronically ill by saying that the care is custodial and “maintenance care is not covered”. Diane J. Omduhl, RN, MS President, Beacon Health
New Approaches to Health Care For An Aging Population, (Ed.), Jossey-Bass, San Francisco, 1988.
Theodore
H. Koff
This book provides a general overview of why there is and will continue to be a great demand for a variety of services, of which health care is one, for the chronically ill elderly person as well as some ways in which these services are being provided and suggestions for alternative ways of doing so. In providing this overview the author has selected a variety of topics including types of chronic care services, ways of organizing and delivering those services, the role of the family, alternative models and methods of planning as well as obtaining funding for such service systems and some specifics about what basic requirements are in the delivery of these services. The presentation is clear and the material spaced and set out in an appealing manner. While this book was meant to be for a wide audience of both experienced as well as inexperienced people in the geriatrics field, it probably will benefit the person who needs an introduction to chronic care service provision. A focus upon terminology too is useful for a newcomer to this field. The author, in choosing to cover many topics, has necessarily done so rather broadly without a great deal of emphasis on any one area. This approach is useful, but significantly more is needed. For those persons interested in patient and client education and counseling, this book would serve the same purpose. These persons, however, would necessarily have to go further and review other materials on specific areas including some primary sources such as journals, other books and government and association publications. Some of these are listed in the present book. There are several difficulties with this book from my perspective, however. There is a critical lack of discussion of training needs for personnel who work with elderly people. Just as there is a need for a continuum of services for elderly people, there is an even greater need for continuum of training of the people to provide those services. As the director of an interdisciplinary training and service program in the field of developmental disabilities, I became well aware that, without such training, not only will the best designed service be poorly given with the resultant consequences upon the health of the elderly
202
Book Reviews Unending
Publishers, Unending
Work and Care: Managing
San Francisco,
Chronic
Illness
at Home,
Jossey-Bass
1988.
Work and Care: Managing
Chronic Illness at Home appears
to be the culmination of extensive research and work with chronically ill persons and their families. This book focuses on how these individuals manage the disease and their lives simultaneously, attempting to live a “normal life” in spite of the illness. The book is very current, well documented, and follows a rational course, looking at chronic illness from pre-diagnosis, through remissions and exacerbations and deterioration to death, blending research, theory and actual case studies. The first half of the book is very heavy on theory. There are times when one must ask, “So what?’ So what if there are illness trajectories, biographical work, etc.? How can that help the chronically ill person attempting to manage at home? This problem is remedied in the second half when the authors analyze actual case studies in great detail, applying the theory presented. The last chapter, “The Unending Work and Care Associated with Chronic Illness”, was most useful. It presented an overview of the book, highlighting the signficance of each chapter and bringing the information into focus. If the authors had used this technique in some of the earlier chapters, the information would have had more impact. This book is long overdue. For too long, health care practitioners and educators have focused on the acutely or terminally ill person. We have little information to help us meet the special needs of the chronically ill, other than to hear that they are “custodial” and need only “maintenance care”. Through actual examples, this book proves that the chronically ill person does indeed need special “care and handling” to make the most of a life which is totally altered by a lingering disease. This does not come easy. It requires a different mind set and attitude which will build on the patient’s and family’s strengths while minimizing the effects of the illness. This is where this book will be most useful. If used as a textbook for health care practitioners (nurses, counselors, social workers, physicians, etc.) in a setting where the information can be applied to actual patient-family situations, the practitioners would develop some of the skills and insights needed to care for the chronically ill person and provide support to the family. Our educational system must focus on the special needs of the chronically ill and this book would serve as a great resource. I have one relevant wish to end this review. We must educate the practition-
201
ers in care of the chronically ill and we must also focus on payment. It would be great if someone could condense this information so the everyday person would recognize the unique skills required in caring for the chronically ill person. Then, we could send a copy to every person who has anything to do with health care financing (legislators, insurance companies, case managers, etc.). We cannot continue to escape financial responsibility for the chronically ill by saying that the care is custodial and “maintenance care is not covered”. Diane J. Omduhl, RN, MS President, Beacon Health
New Approaches to Health Care For An Aging Population, (Ed.), Jossey-Bass, San Francisco, 1988.
Theodore
H. Koff
This book provides a general overview of why there is and will continue to be a great demand for a variety of services, of which health care is one, for the chronically ill elderly person as well as some ways in which these services are being provided and suggestions for alternative ways of doing so. In providing this overview the author has selected a variety of topics including types of chronic care services, ways of organizing and delivering those services, the role of the family, alternative models and methods of planning as well as obtaining funding for such service systems and some specifics about what basic requirements are in the delivery of these services. The presentation is clear and the material spaced and set out in an appealing manner. While this book was meant to be for a wide audience of both experienced as well as inexperienced people in the geriatrics field, it probably will benefit the person who needs an introduction to chronic care service provision. A focus upon terminology too is useful for a newcomer to this field. The author, in choosing to cover many topics, has necessarily done so rather broadly without a great deal of emphasis on any one area. This approach is useful, but significantly more is needed. For those persons interested in patient and client education and counseling, this book would serve the same purpose. These persons, however, would necessarily have to go further and review other materials on specific areas including some primary sources such as journals, other books and government and association publications. Some of these are listed in the present book. There are several difficulties with this book from my perspective, however. There is a critical lack of discussion of training needs for personnel who work with elderly people. Just as there is a need for a continuum of services for elderly people, there is an even greater need for continuum of training of the people to provide those services. As the director of an interdisciplinary training and service program in the field of developmental disabilities, I became well aware that, without such training, not only will the best designed service be poorly given with the resultant consequences upon the health of the elderly
202