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.