Myra Bluebond-Langner

In the Shadow of Illness (eBook, ePUB)

Parents and Siblings of the Chronically Ill Child

• Format: ePub

Produktbeschreibung

A revealing account of how families adapt to living with a chronically ill child

What is it like to live with a child who has a chronic, life-threatening disease? What impact does the illness have on well siblings in the family? Myra Bluebond-Langner suggests that understanding the impact of the illness lies not in identifying deficiencies in the lives of those affected, but in appreciating how family members carry on with their lives in the face of the disease's intrusion.

The Private Worlds of Dying Children, Bluebond-Langner's previous book, now considered a classic in the field, explored the world of terminally ill children. In her new book, she turns her attention to the lives of those who live in the shadow of chronic illness: the parents and well siblings of children who have cystic fibrosis. Through a series of narrative portraits, she draws us into the daily lives of nine families of children at different points in the natural history of the illness-from diagnosis through the terminal phase. In these portraits, as family members talk about their experiences in their own words, we see how parents, well siblings, and the ill children themselves struggle, in different ways, to contain the intrusion of the disease into their lives.

Bluebond-Langner looks at how parents adjust their priorities and their idea of what constitutes a normal life, how they try to balance the needs of other family members while caring for the ill child, and how they see the future. This context helps us understand how well siblings view the illness and how they relate to their ill sibling and parents. Since the issues raised are not unique to cystic fibrosis but are common to other chronic and life-threatening illnesses, this book will be of interest to all who study, care for, or live with the seriously ill.

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Produktdetails

• Verlag: University of Pennsylvania Press, Inc.
• Erscheinungstermin: 30. Juni 2020
• Englisch
• ISBN-13: 9780691214702
• Artikelnr.: 59363748

Autorenporträt

Myra Bluebond-Langner is professor emerita at University College London and Board of Governors Professor of Anthropology Emerita at Rutgers University. She is also the author of The Private Worlds of Dying Children (Princeton), winner of the Margaret Mead Award.

Inhaltsangabe

List of Tables ix
Preface xi
Acknowledgments xv
PART 1. INTRODUCTION 1
Chapter 1. The Impact of Cystic Fibrosis on Well Siblings 3
1. Approaches to the Study of Well Siblings 3
2. An Ethnographic Approach 10
3. A Framework for Analysis 12
PART 11. PORTRAITS IN WAITING: NINE FAMILIES 15
Introduction 17
Chapter 2. The Daleys 19
Chapter 3. The Shermans 26
Chapter 4. The Farringtons 39
Chapter 5. The Campbells 48
Chapter 6. The Reynoldses 59
Chapter 7. The Chases 74
Chapter 8. The Woodwards 90
Chapter 9. The Fosters 100
Chapter 10. The Baileys 122
PART III. CONTAINING THE INTRUSION 133
Chapter 11. Parents' Responses to the Care the Ill Child Requires and the
Concerns the Child's Condition Engenders 135
1. Issues and Strategies 137
2. Strategies, Normalcy, and Control 186
Chapter 12. Well Siblings' Views of Cystic Fibrosis and Their Ill Siblings'
Condition 197
1. Well Siblings' Views 197
2. Formation of Well Siblings' Views 212
Chapter 13. Well Siblings' Relationships with Parents and Ill Siblings 215
1. Resources and Communication 216
2. The Well Siblings' Position in the Family 260
Afterword: Meeting the Needs of the Well Sibling 265
1. General Guide lines for Clinical Intervention 266
2. Communication in the Family: The Case for "Shuttle Diplomacy" 267
Glossary 273
Works Cited 275
Index 295

Rezensionen

An important contribution to the ethnography of illness experience. . . .This book will be of great value to researchers and clinicians with interests in how families cope with chronic illness, life-threatening conditions, and genetic disorders.