Impact of Caring for Children with Special Health Care Needs on the Family: Rhode Island’s Experience

Abstract

Objectives: The impact of caring for children with special health care needs (CSHCN) on their families’ finances and employment was studied. Methods: Data from the 2001 National Survey of Children with Special Health Care Needs were used to measure financial and employment problems. The level of impact was examined by child’s age, gender, ethnicity, race, mother’s education, poverty status, and severity of the child’s condition. The association between core outcome measures and the level of family impact was determined after adjusting for potential confounding factors. Results: Financial or employment problems were more likely to occur among families with young children, with incomes below 200% poverty and with children whose condition usually/always affected their activities. Compared to families without these problems, impacted families were less likely to partner in decision making, be satisfied with services, receive comprehensive care in a medical home, have adequate health insurance, and feel service systems are organized for easy use. Conclusions: Many families of CSHCN face financial and employment problems and are less likely to have a medical home, adequate insurance, and access to health care services.