Family-Centered Care for Children With Special Health Care Needs: Are We Moving Forward?

Family-centered care (FCC) is widely acknowledged as supporting positive outcomes in children with special health care needs (CSHCN) and their parents. The intent of this mixed-method research was to enhance understanding of family-centered behaviors in professionals who had received specialty training in the principles of FCC and to explore provider perceptions of challenges to FCC implementation. Eighty-nine professionals who had completed the Leadership Education in Neurodevelopmental Disabilities (LEND) training program at a large, urban university were mailed an anonymous survey containing a self-report measure of FCC, the Measure of Process of Care for Service Providers, and an open-ended question on barriers to FCC. Thirty-three participants returned the survey (37% response rate). Descriptive analyses of MPOC-SP subscales indicated that the interdisciplinary professionals were providing care consistent with the principles of FCC in the areas of treating people respectfully, communicating specific information to families, and showing interpersonal sensitivity but were less active in providing general information to CSHCN and their parents. Content analysis of the qualitative data revealed five themes reflecting individual and contextual barriers to FCC: (1) institutional culture, (2) absence of care coordination, (3) insufficient training, (4) policy factors, and (5) family factors. Study findings indicate that change at the systems level is paramount for family-centered practices to be fully realized.