Guidelines for Home Care of Infants, Children, and Adolescents with Chronic Disease

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Abstract
Many infants, children, and adolescents with long-term, serious health problems are confined to hospitals for prolonged treatment during recovery, and such patients are rehospitalized frequently. Hospitalized patients usually lack the normal, interpersonal family relationships that are important to growth and development. Combining the benefits of home care with optimal medical treatment and support is a challenge requiring development of innovative programs between hospitals, physicians, parents, and communities. Although home care programs for patients with chronic diseases have been implemented, objective data about the efficiency, risks, benefits, and cost of these programs are limited. Careful planning and coordination of family, hospital, and community resources are essential for home care programs, and initial guidelines for program development and assessment are needed. The goal of a home care program for infants, children, or adolescents with chronic conditions is the provision of comprehensive, cost-effective health care within a nurturing home environment that maximizes the capabilities of the individual and minimizes the effects of the disabilities. PROGRAM DEVELOPMENT Comprehensive planning for all aspects of home health care is essential to minimize physical and emotional risk to the patient, adverse effects on the family members, or unforseen financial burdens. Because of the many factors to be considered, a multidisciplinary team interested in implementation of home health care should be organized. The team should include a pediatrician and may include other physicians (eg, generalists, community physicians, neonatologists, intensivists); nurses; occupational, physical, and speech therapists; developmentalists; child life workers; nutritionists; social workers; teachers; home care providers (eg, nursing providers outside the hospital and equipment providers); parents; and insurers.

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