Assessing family-provider partnerships and satisfaction with care among US children with special health care needs.

OBJECTIVES

Family-provider partnerships and satisfaction with services together are one of the Health Resources and Services Administration's (HRSA) Maternal and Child Health Bureau's (MCHB) 6 core outcomes for children with special health care needs (CSHCN) and are tracked using the 2005-2006 National Survey of Children with Special Health Care Needs. Our objectives were to examine demographic, health, and other correlates/associations, with the perception of family-provider partnership and satisfaction with care; determine the associations between these perceptions and other child/family outcomes; and evaluate differences in the perception of partnership and satisfaction between the families of CSHCN and other children.

METHODS

We analyzed data for 40,723 CSHCN from the 2005-2006 National Survey of CSHCN and assessed the prevalence of family-provider partnerships and satisfaction with care and their association with other family-child outcomes. The partnership/satisfaction core outcome results were compared with a referent group of children without special needs included in the 2005-2006 survey.

RESULTS

The proportion of CSHCN attaining the core outcome was 57.4% and was lower for households with no health insurance, minority ethnic status, non-English speakers, nontraditional family structure, lower income, and lower functioning CSHCN. Lower rates of satisfaction and partnership were associated with poorer child and family outcomes. Disparities in attainment rates were noted for CSHCN versus other children.

CONCLUSIONS

Although parent perceptions of family-provider partnership were relatively high, satisfaction with care contributed to an overall lower attainment rate for the partnership/satisfaction core outcome. Providers, families, government, and advocates need to work together to increase attainment of family-provider partnerships and satisfactory care experiences.