Understanding Respite Care Use by Families of Children Receiving Short-Term, In-Home Psychiatric Emergency Services

Respite care is widely believed to be an important support service for families raising a child with a disability. We report the findings of a respite care utilization study conducted within the context of a larger research and demonstration project examining three models of intensive, in-home services for children experiencing psychiatric crises. Respite care, both in-home and out-of-home, was a support service available to families in two of the three study conditions. Overall, 34% of 146 eligible families used in-home and or out-of-home respite care. Utilization was lower than the estimates developed prior to implementation, prompting an inquiry at the end of the first project year designed to maximize use and to gather more information on caregiver and service provider attitudes toward respite care. The inquiry included caregiver and provider focus groups, surveys, and enhanced data collection and analysis. Caregiver interviews indicated that many families did not fully understand what it meant to receive respite care or even that it was available to them. A comparative analysis of respite care users and non-users revealed that respite care users were more likely to have younger children, children who had a greater number of assessed functional impairments, and fewer social supports. Respite care users also reported greater difficulty managing their children's difficult behaviors.