Respite Care for Children With Special Health Care Needs

Objectives: To describe (1) the subpopulation of children with special health care needs (CSHCN) in need of respite care and (2) the factors associated with unmet respite care needs. Design: Cross-sectional study using the 2001 National Survey of Children With Special Health Care Needs. Setting: The United States. Participants: Caregivers of CSHCN. Main Outcome Measures: We determined the association of sociodemographic factors and health status of CSHCN with need for respite care and unmet needs for respite care. Results: Of the 38831 respondents, 3178 (8.8%) reported need for respite care in the prior 12 months. The CSHCN who were young and uninsured/had insurance gaps or had public insurance and those with functional limitations and unstable health conditions were more likely to need respite care. Twenty-four percent of CSHCN who needed respite care did not receive such services. In multivariate analysis, higher maternal education (adjusted odds ratio [AOR], 1.6 for more than high school education compared with high school education or less), some and severe functional limitations (AORs, 2.5 and 5.6, respectively, compared with no limitation), and unstable health condition (AOR, 2.3 compared with stable condition) were associated with greater unmet respite care needs. The CSHCN with public insurance were half as likely and CSHCN with private insurance were as likely to report unmet respite care needs as those who were uninsured/with insurance gaps. Conclusions: Respite care needs of CSHCN are frequently unmet. Furthermore, strategies are needed to improve access to respite care for families of CSHCN.