Families' recommendations for improving services for children with chronic conditions

Abstract

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 culturally relevant and resources more accessible to families from diverse cultural backgrounds.

Conclusions: The findings indicate that further work needs to be done to deliver care that is, indeed, family centered and culturally sensitive. Families' recommendations provide information that health care professionals and policymakers can use to transform rhetoric about family-centered care into action.