In the Shadow of Illness

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.

• 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

Winner of the 1997 Charles A. Corr Award in Literature "In the Shadow of Illness is a beautifully written, well-organized book that is an outstanding contribution to our understanding of the impact of chronic illness on the family and the factors that affect the coping mechanisms over the trajectory of chronic illness. An important source of information and understanding for families who find themselves in the shadow of illness."--Kirby Pope, Bulletin of the Menninger Clinic "Myra Bluebond-Langner gives us a framework of understanding how families--siblings as well as parents--move through their understanding of the condition, and their coping strategies, by redefining 'normal' family life to include routine CF care and reassessing their family priorities. She has done this with great skill and sensitivity."--Clinical Child Psychology and Psychiatry "I strongly recommend this book to anyone involved with families of children with CF and potentially with other chronic life-threatening illnesses. There is no question that it provides new and valid insight concerning parent and sibling adaptation."--Omega "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."--Joan Ablon, Medical Anthropology Quarterly