The association of child condition severity with family functioning and relationship with health care providers among children and youth with special health care needs in Alabama

Objective: The purpose of the present study is to assess how the severity of a child's condition affects family functioning and the relationship with health care providers among children with special health care needs in Alabama. Methods: Using the data from the National Survey of Children with Special Health Care Needs (CSHCN), three variables were used as measures of condition severity: responses to the CSHCN screener questions, whether condition affected the ability to do things for children and youth with special health care needs (CYSHCN), and the level of severity of CYSHCN's condition. The dependent variables included family functioning and provider relationship. Results: CYSHCN who only take prescription medicine for their chronic condition (MO) had lower condition severity from those who have other needs (NMO). In NMO CYSHCN, higher condition severity was associated with increased strain on family functioning outcomes and higher unmet needs in provider relationship outcomes, adjusted for demographic and insurance variables. Families of NMO CYSHCN with a more severe condition spent more temporal and financial resources and had a higher need for professional care coordination, and were less likely to have sensitive providers. Conclusions: Severity of condition is an important factor increasing strain on family resources and relationship with the provider. Our results indicate the need for professional care coordination and family support, particularly among those families in which there is a NMO CYSHCN with a more severe condition. This finding supports the mandate that all CYSHCN should have their health care coordinated and provided in the context of a medical home.