Title: In the shadow of illness : parents and siblings of the chronically ill child /
Authors: Bluebond-Langner, Myra, 1948-
Publisher: Princeton University Press,
Year: 1996
Subjects: Sibling Relations; Parent-Child Relations; Cystic Fibrosis psychology; Death Psychological aspects Case studies; Brothers and sisters Death Psychological aspects Case studies.; Cystic fibrosis Psychological aspects Case studies.; Parents of terminally ill children Case studies.; Terminally ill children Family relationships Case studies.
Abstract: 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.