Key doorkeepers to health care access for children with special health care needs: Findings from a social network analysis

Background: Navigating the U.S. health-care system poses challenges for many families, but particularly for caregivers of children with special health-care needs (CSHCN). Families often use both formal and informal relationships within their social networks to facilitate access to health-care services. This process is unstudied and potentially useful in further understanding the nuanced ways that families with CSHCN access health-care services.

Methods: From May-2009 to February-2010, 30 qualitative, open-ended interviews (60-90 minutes) were conducted in Illinois with caregivers of CSHCN. Respondents were recruited using purposive quota sampling techniques from a group of 102 respondents who had participated in a related telephone survey. Social network data was collected using the Hierarchical Mapping Technique. Data entered into Nvivo software and analyzed by thematic and matrix coding.

Results: 30 CSHCN caregivers reported having small (n=13), medium (n=9), or large (n=8) social networks made of informal (60%) and formal (40%) ties involved in their child's health care. They obtained key resources resulting in health-care access from five main sources: pediatricians (n=6), specialists (n=3), other health-care providers (n=3), informal friends and family (n=10), and via hospitalization (n=7). Matrix analysis demonstrates socio-demographic differences among these sources, including parent income, education, and illness acuity.

Conclusions: Social-network analysis reveals that the type of key doorkeepers to health-care access for families of CSHCN vary by the social determinants and point to different mechanisms by which families navigate health-care systems. These findings warrant further examination of the roles of formal and informal social networks in improving systems of care for CSHCN.