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

Bluebond-Langner, Myra,

Princeton, N.J. : Princeton University Press 짤1996.

1 online resource (xvii, 302 pages)

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

The Impact of Cystic Fibrosis on Well Siblings / Approaches to the Study of Well Siblings / An Ethnographic Approach / A Framework for Analysis / Portraits in Waiting: Nine Families / The Daleys / The Shermans / The Farringtons / The Campbells / The Reynoldses / The Chases / The Woodwards / The Fosters / The Baileys / Containing the Intrusion / Parents' Responses to the Care the Ill Child Requires and the Concerns the Child's Condition Engenders / Issues and Strategies / Strategies, Normalcy, and Control / Well Siblings' Views of Cystic Fibrosis and Their Ill Siblings' Condition / Well Siblings' Views / Formation of Well Siblings' Views / Well Siblings' Relationships with Parents and Ill Siblings / Resources and Communication / The Well Siblings' Position in the Family / Afterword: Meeting the Needs of the Well Sibling / General Guide lines for Clinical Intervention / Communication in the Family: The Case for "Shuttle Diplomacy."

9780691214702 0691214700

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