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.
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