Risk factors for family time burdens providing and arranging health care for children with special health care needs: Lessons from nonproportional odds models.

ABSTRACT

We identify need, enabling, and predisposing factors for high family time burdens associated with the health care of chronically-ill children, using data from the U.S. 2009-2010 National Survey of Children with Special Health Care Needs (NS-CSHCN), a population-based survey of 40,242 children with special health care needs (CSHCN). We estimate generalized ordered logistic multivariable regressions of time spent (1) providing health care for the child at home, (2) arranging/coordinating health care, and (3) combined time. Factors associated with higher time burdens included child's functional limitations, severe or unstable health conditions, public health insurance, lack of a medical home, low family income, low adult education, and non-white race. Nonproportional odds models revealed associations between risk factors and time burden that were obscured by binary and standard ordered logistic models. Clinicians and policymakers can use this information to design interventions to alleviate this important family stressor.