Barriers to Respite Care for Children with Special Health Care Needs.

Abstract

The objective of this study was to estimate time-specific, population-based prevalence of 14 specific barriers to respite services, as reported by parents of children with special health care needs (CSHCN) with and without emotional, behavioral, or developmental problems (EBDPs), and to identify individual, family, and environmental characteristics associated with the most common barriers to respite care for families of CSHCN. Descriptive, bivariate, and multivariable logistic regression analyses were used to examine data from the National Survey of Children with Special Health Care Needs for 2005/2006 and 2009/2010. Among families reporting unmet need for respite care services, service availability or transportation barriers (23.8%) and cost barriers (19.8%) were the most commonly reported obstacles among all CSHCN, followed by lack of knowledge about where to obtain respite services (12.1%) and inconvenient service times (11.3%). Reports of location or availability barriers decreased significantly from 2005 to 2009, but service time barriers increased simultaneously. All types of barriers to respite services were reported significantly more frequently by CSHCN with EBDPs than those without, even when other demographic factors were controlled for. CSHCN conditional severity and discontinuity in insurance were positively associated with cost barriers, whereas CSHCN public health coverage was associated with reduced rates of reported cost and information barriers to respite care. Increased understanding of parent-reported barriers to respite care for families of CSHCN is critical to creating structural and practice-oriented solutions that address obstacles and increase access to respite care for these vulnerable families.