In the shadow of illness : parents and siblings of the chronically ill child / by Myra Bluebond-Langner.

Format:

Book

Author/Creator:

Bluebond-Langner, Myra, 1948-

Language:

English

Subjects (All):

Death--Psychological aspects--Case studies.

Death.

Death--Psychological aspects.

Cystic fibrosis--Psychological aspects.

Terminally ill children--Family relationships.

Terminally ill children.

Brothers and sisters--Death--Psychological aspects.

Brothers and sisters.

Parents of terminally ill children.

Parents of terminally ill children--Case studies.

Siblings--Death--Psychological aspects--Case studies.

Siblings.

Terminally ill children--Family relationships--Case studies.

Cystic fibrosis--Psychological aspects--Case studies.

Cystic fibrosis.

Genre:

Case studies.

Physical Description:

xvii, 302 pages ; 24 cm

Place of Publication:

Princeton, N.J. : Princeton University Press, 1996.

Summary:

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.

Contents:

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 II. Portraits in Waiting: Nine Families 15

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.

Notes:

Includes bibliographical references (pages [275]-294) and index.

ISBN:

0691027838

OCLC:

34355618