A revealing account of how families adapt to living with a chronically ill child 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.

The noted contributors represent diverse theoretical approaches, but all share a focus on the family as the primary context of development - and the most important resource for children who are struggling

Written and edited by leading pediatric and family nurse researchers, Children and Families in Health and Illness provides a synthesis of the research literature in nursing for health promotion of children, pediatric acute and chronic conditions, and children and families and the health care system. Each of the four sections begins with a historical overview of the literature. The first three sections present reviews of assessment and intervention models and implications for practice, education, and research for their respective topics. The concluding section examines community infrastructures and issues in health services research. Children and Families in Health and Illness will prove an excellent shelf reference for researchers, graduate students and faculty, and a thought-provoking read for advanced-level practitioner nurses in child or family nursing.

Chronic childhood disease brings psychological challenges for families and carers as well as the children. Roger Bradford explores how they cope with these challenges, the psychological and social factors that influence outcomes and the ways in which the delivery of services can be improved to promote adjustment. Drawing on concepts from health psychology and family therapy, the author proposes a multi-level model of care which takes into account the child, the family and the wider care system and how they interrelate and influence each other.

The author's 46 interviews with the families of children with chronic illness give an understanding of how the children comprehend their illnesses and how parents struggle daily to care for their kids while trying to give them a 'normal' childhood.

This book, drawing on theoretical and practical sources, acknowledges the potential for distress involved in caring for a sick child but also emphasizes the coping resources and skills that can be, and frequently are, adopted by families.

Originally published in 1975, this book traces the problems which arise for families coping with a chronic childhood disease – cystic fibrosis. The discussion of these problems is important for the families of other seriously ill or disabled children, all of whom are faced with similar implications of their situation. The book looks at the stressful situations which face them: mastering the child’s treatment technique, assisting them to come to terms with their disease. It deals with the practical problems which arise for the parents and siblings of a sick child and explores the profound repercussions of the loss of a child on the entire family, considering the ways in which many of these families managed to transcend their problems.