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

Format:

Book

Author/Creator:

Bluebond-Langner, Myra, 1948-

Language:

English

Subjects (All):

Chronically ill children--Home care $# UkShU.

Chronically ill children.

Chronically ill children--Care and treatment $# UkShU.

Genre:

Electronic books.

Physical Description:

1 online resource (324 pages) : illustrations

Manufacture:

Baltimore, Md. : Project MUSE, 2021

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:

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

Notes:

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

Description based on print version record.

ISBN:

9780691214702

0691214700

OCLC:

1159413668