Family-centered care for US children with special health care needs: who gets it and why?

The goal was to examine racial/ethnic and language disparities in family-centered care (FCC) and in FCC components for children with special health care needs (CSHCN).

Bivariate and multivariate logistic regression analyses of data from the 2005-2006 National Survey of CSHCN were performed.

A total of 66% of CSHCN with a health visit in the past year received FCC. In adjusted analyses, we found lower odds of FCC for Latino (odds ratio: 0.53 [95% confidence interval: 0.45-0.63]), African-American (odds ratio: 0.60 [95% confidence interval: 0.52-0.69]), and other (odds ratio: 0.58 [95% confidence interval: 0.43-0.78]) children, compared with white children, and for children in households with a non-English primary language (odds ratio: 0.48 [95% confidence interval: 0.36-0.64]), compared with those in households with English as the primary language. These disparities persisted after adjustment for child health (condition severity and emotional, behavioral, and developmental needs), socioeconomic (poverty level, parental education, household composition, and residing in a metropolitan statistical area), and access (insurance type, usual source of care, and having a personal physician) factors. Of these factors, only condition severity was significantly associated with the racial/ethnic disparities; none was significantly associated with the language disparities. Disparities were found for Latino and African-American children and children in households with a non-English primary language for the FCC components of time spent with the provider and sensitivity to the family's values and customs.

Robust FCC racial/ethnic and language disparities exist for CSHCN; initial efforts to address these disparities should focus on increasing provider time and cultural sensitivity.