CHRONIC AND
TERMINAL ILLNESS
New Perspectives on Caring and Carers
Sheila Payne and Caroline Ellis-Hill (Eds)
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| Oxford University Press, 2001
170pp
ISBN 0-19-263167-5
RRP $US35.00, £24.95
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This book is about carers who, until recently, received little recognition and even less assistance.
Carers play a major role in the management of patients with chronic and terminal illness, but it is a topic that has received relatively little attention until recently.
This book provides an up to date review of both research and theories regarding carers.
The book includes chapters detailing the experiences of carers for patients with terminal cancer
and chronic neurological degenerative disease. These identify that caring can be an exhausting, stressful and isolating experience, and at the same
time meaningful and satisfying. The identification of the many variables that determine an individual’s experiences as a carer is important if health
care professionals and policy makers are to have a better appreciation of the needs of carers and how to better support them. Another chapter describes
the use of carers in undergraduate education in Southampton . In this novel program,
the authenticity of the carers’ experience has a profound impact on students, exposing them to “non-sanitized” reality.
This book is written primarily for students in the field of health and the social sciences, but
I would strongly recommend it to any nurse or doctor training in palliative care. The remit of palliative care is not only to care for the patient,
but also to provide support for the family carers, and this book provides powerful insights into the burdens and, to a lesser extent, the benefits of being a carer.
Roger Woodruff
Director of Palliative Care, Austin & Repatriation Medical Centre, Melbourne , Australia
(June 2002)
Author Information
Sheila Payne
is Professor of Palliative Care, University of Sheffield , UK
Caroline Ellis-Hill is Senior
Research Fellow, University of Southampton , UK
Table of Contents
1. Being a carer 1
Payne, Ellis-Hill
2. Positive aspects of caring 22
Nolan
3. Caring and Identity: The experience of spouses in stroke and other chronic neurological conditions
44
Ellis-Hill
4. A longitudinal study of carers providing palliative care 64
Rose
5. Who is a carer? Experiences of family caregivers in
palliative care 83
Smith
6. Being a carer in an acute crisis: The situation for relatives of organ donors 100
Sque
7. Family caregiving: A gender based analysis of women’s experiences 123
Lee
8. The contribution of carers to professional education 140
Sheldon, Turner, Wee
9. The future: Interventions and conceptual issues 155
Ellis-Hill and Payne
Index 167
