In the Shadow of Illness : : Parents and Siblings of the Chronically Ill Child / / Myra Bluebond-Langner.

• Superior document: Title is part of eBook package: De Gruyter Princeton University Press eBook-Package Archive 1927-1999
• VerfasserIn: Bluebond-Langner, Myra,
• Place / Publishing House: Princeton, NJ : : Princeton University Press, , [2021]; ©1996
• Year of Publication: 2021
• Language: English
• Physical Description: 1 online resource (328 p.) :; 3 tables

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.

Table of Contents

Frontmatter -- Contents -- List of Tables -- Preface -- Acknowledgments -- PART I. INTRODUCTION -- Chapter 1. The Impact of Cystic Fibrosis on Well Siblings -- PART II. PORTRAITS IN WAITING: NINE FAMILIES -- Introduction -- Chapter 2. The Daleys -- Chapter 3. The Shermans -- Chapter 4. The Farringtons -- Chapter 5. The Campbells -- Chapter 6. The Reynoldses -- Chapter 7. The Chases -- Chapter 8. The Woodwards -- Chapter 9. The Fosters -- Chapter 10. The Baileys -- PART III. CONTAINING THE INTRUSION -- Chapter 11. Parents' Responses to the Care the 111 Child Requires and the Concerns the Child's Condition Engenders -- Chapter 12. Well Siblings' Views of Cystic Fibrosis and Their Ill Siblings' Condition -- Chapter 13. Well Siblings' Relationships with Parents and Ill Siblings -- Afterword: Meeting the Needs of the Well Sibling -- Glossary -- Works Cited -- Index