Family-Provided Health Care for Children With Special Health Care Needs

Background and Objectives: Many children with special health care needs (CSHCN) receive health care at home from family members, but the extent of this care is poorly quantified. This study's goals were to create a profile of CSHCN who receive family-provided health care and to quantify the extent of such care.

Methods: We analyzed data from the 2009-2010 National Survey of Children with Special Health Care Needs, a nationally representative sample of 40 242 parents/guardians of CSHCN. Outcomes included sociodemographic characteristics of CSHCN and their households, time spent by family members providing health care at home to CSHCN, and the total economic cost of such care. Caregiving hours were assessed at (1) the cost of hiring an alternative caregiver (the "replacement cost" approach), and (2) caregiver wages (the "foregone earnings" approach).

Results: Approximately 5.6 million US CSHCN received 1.5 billion hours annually of family-provided health care. Replacement with a home health aide would have cost an estimated $35.7 billion or $6400 per child per year in 2015 dollars ($11.6 billion or $2100 per child per year at minimum wage). The associated foregone earnings were $17.6 billion or $3200 per child per year. CSHCN most likely to receive the greatest amount of family-provided health care at home were ages 0 to 5 years, were Hispanic, lived below the federal poverty level, had no parents/guardians who had finished high school, had both public and private insurance, and had severe conditions/problems.

Conclusions: US families provide a significant quantity of health care at home to CSHCN, representing a substantial economic cost.