Family perceptions of shared decision-making with health care providers: results of the National Survey of Children With Special Health Care Needs, 2009-2010.

The Maternal and Child Health Bureau recently revised its measure of family-provider shared decision-making (SDM) to better align with parents' views and the intent of SDM. We sought to assess achievements in meeting the revised measure; examine socio-demographic/health correlates; and determine the relationships between SDM and access to quality health care. We analyzed data for 40,242 children with special health care needs (CSHCN) from the 2009-2010 National Survey of CSHCN and assessed the prevalence of SDM and association with other US CSHCN socio-demographic/health characteristics using bivariate and multivariate methods. Logistic regression was used to determine associations between SDM and having a medical home and preventive medical/dental visits. Approximately 70% of families of CSHCN perceived themselves as shared decision-makers in their child's care. Families of CSHCN with greater functional limitations had twice the odds of lacking SDM than those never affected. Disparities in attainment rates were noted for families with low versus high income (61 vs. 77%), less versus more than high school education (59 vs. 73%), privately insured versus uninsured (76 vs. 57%), and minority versus white race (63 vs. 74%). CSHCN with medical homes had 6 times greater odds of perceived SDM and as much as one and a half times the odds of receiving preventive care than CSHCN without a medical home. Major differences in family SDM perceptions are associated with having a medical home, particularly when characterized by family-centered care. Populations of concern are those with more functionally limited children and increased socio-economic challenges.

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.

Achieving family and provider partnerships for children with special health care needs.

BACKGROUND: During the past 2 decades, family-centered care has evolved as the standard of care for children with special health care needs. A major principle of family-centered care is a strong partnership between the family and provider, working together to address issues and barriers to accessing comprehensive care and related services. The federal Maternal and Child Health Bureau defines a positive family-provider partnership as a core program outcome. Our objective was to assess the extent to which families of children with special health care needs feel as though they are treated as partners in decision-making by their doctors. METHODS: We analyzed the 2001 National Survey of Children With Special Health Care Needs, a nationally representative telephone survey of caretakers for 38,866 children with special health care needs. Bivariate and multivariate statistical methods were used to assess the frequency of meeting the partnership core outcome, as well as the demographic and socioeconomic predictors of meeting core outcome. We also examined the effect of partnership on indicators of access and well-being for children with special health care needs. RESULTS: Among children with special health care needs, 85.8% of families reported usually or always feeling like a partner in their child's care. However, living in poverty, minority racial and ethnic status, absence of health insurance, and depressed functional ability placed children with special health care needs and their families at elevated risk of being without a sense of partnership. We found that sense of partnership was associated with improved outcomes across a number of important health care measures, including missed school days, access to specialty care, satisfaction with care, and unmet needs for child and family services. CONCLUSIONS: Results of the survey demonstrated that whereas most families of children with special health care needs feel they are partners in the care of their child, further work is needed, particularly for poor, uninsured, and minority children, as well as those with functional limitations. The survey results also demonstrate the importance of partnership; children whose care met the partnership core outcome experienced improved access to care and well-being.