Home and Community Care for Chronically Ill Children

With advances in medical technology and treatment, at least 90% of children with severe illnesses now survive to young adulthood and beyond. Most children with complex and chronic illnesses no longer need to remain in the hospital for care; their portable medical equipment enables them to live with their families and to attend schools in their communities. The increased survival of children with severe illnesses and the growing number who live at home have created new demands on the health care, education, and community services systems. This important book lays common ground for all who have reason and responsibility to enhance the capability of families to care for their ill children over the long term at home. The authors, a multidisciplinary team of a pediatrician, social worker, and health administrator/analyst, base their examination of the issues involved in out-of-hospital care on a thorough review of the literature and on-site visits to ten programs in different parts of the country that care for chronically ill children. The book describes the population of children in home care and the reasons home-based services have increased in the past decade, and analyzes the impact that providing care at home has on families. It examines the organization and delivery of services, and discusses the quality of care, defining criteria for its assessment. Financial issues are then addressed, with the focus on the cost to families and on the strengths and weaknesses of private and public programs that pay for care. The book concludes with recommendations for changes in the organization and provision of services, quality assurance, and financing of care. The comments and concerns of the families the authors visited are interwoven throughout the text, since it is the families' problems which best define the issues.

James M. Perrin, M.D., is associate professor of pediatrics at Harvard Medical School and director of the division of general pediatrics for the Children's Service at the Massachusetts General Hospital. His research has ranged from studies of middle ear disease to psychological adjustment of children with chronic illnesses to health services research. His work on public policies affecting children with chronic illnesses and their families has had a major impact on public programs and financing for these families.