In the Shadow of Illness: Parents and Siblings of the Chronically Ill Child

作者：Myra Bluebond‐Langner · 发表于：Project Muse (Johns Hopkins University) · 年份：2020 · 被引用次数：109 · 研究领域：Ethics and Legal Issues in Pediatric Healthcare

book powerfully illuminates the everyday experience of families living with a chronicallyill child.--Patricia A. Marshall, Associate Director of Medical Humanities Program at Loyola University Chicago, Strich School of MedicineWhat 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...