Families' Recommendations for Improving Services for Children With Chronic Conditions

作者：Ann Williams Garwick, Claire H. Kohrman, Clara Wolman, Robert W. Blum · 发表于：Archives of Pediatrics and Adolescent Medicine · 年份：1998 · DOI：10.1001/archpedi.152.5.440 · 被引用次数：100 · 研究领域：Childhood Cancer Survivors' Quality of Life、Adolescent and Pediatric Healthcare、Family and Disability Support Research

BACKGROUND: Little research has been done on services and programs for children with chronic conditions and their families from the perspective of family caregivers from diverse cultural backgrounds. OBJECTIVE: To identify recommendations that urban caregiving families from 3 major ethnocultural backgrounds have for improving the care of children with chronic conditions (ie, chronic illnesses and disabilities involving physical health impairments). DESIGN: Qualitative, community-based study. SETTING: General community. PARTICIPANTS: The volunteer convenience sample included 21 African American, 20 Hispanic, and 22 European American families from 2 midwestern cities who care for school-aged children with chronic conditions. METHODS: In-home semistructured interviews were conducted with each child's family caregivers. Content analytic techniques were used to identify and classify 275 recommendations from 63 families. RESULTS: Families focused on the following 4 topics: (1) improving the quality of health care services; (2) decreasing barriers to services and programs; (3) improving the training that health care professionals, families, and the public receive about chronic conditions and their management; and (4) improving the quality and availability of community-based services. Families from all 3 ethnic groups had similar recommendations for improving services and programs; however, several African American and Hispanic families also suggested making information more cultural...