Respite Care Among Parents of Children, Adolescents and Adults with ASD

Background: Parents of children with autism spectrum disorder (ASD) face a considerable amount of caregiving stress. While many families rely on informal supports such as friends and family, others use formalized supports such as respite care. Respite care is similar to other forms of child care, however the intention is explicitly to provide parents with a temporary relief of caregiving responsibilities. Although there was a great deal of research on the impacts of respite care when it was first introduced after deinstitutionalization, few recent studies have examined respite care use among parents of children with ASD.

Objectives: The purpose of this study is to examine use of respite care among parents of children with ASD. This study aims to identify barriers to accessing respite care among those who have not yet used this service. This study also aims to better understand the experiences of parents who have used respite care.

Methods: Parents of children, adolescents and adults with developmental disabilities were invited to complete an online survey on respite care through community newsletters and events. The present study focuses on 38 parents of children with ASD. Most caregivers were biological mothers (84%). On average, parents were 31.08 years old (SD = 9.55). Most (84.2%) identified as white, non-Hispanic and approximately half (55%) were married. The median annual family income was $60,000-69,999. Ten parents had two children with ASD. For these parents, analyses focused on their older child with ASD. The target children with ASD ranged in age from 7 to 27 years old (M = 16.73, SD = 5.82). The majority were male (78%) and most (84%) lived with the participating parent full time.

Results: Over half (58%) of parents had used respite care. Among those who had never used respite care, half had inquired or applied for respite care. The most common reason for not using respite care was difficulty finding a provider (85%), followed by an inability to pay for a provider (68%). Few participants felt they did not need respite care (42%) Among those who used respite care services, most (63%) received services in the home. Few (12%) never paid out of pocket for services. When receiving respite care, parents were most likely to engage to activities related to managing the house, such as running errands (78%), cleaning (78%), and cooking (72%). Much more infrequent was engaging in leisure activities (47%) or socializing with friends (44%). Related to their child with ASD, parents were most likely to complete school paperwork (76%), make appointments (67%), and contact their child’s providers (67%). Of all members of the family, participants perceived the greatest benefit of respite care to be for themselves, with most (67%) caregivers reporting that it benefited them a lot or a great deal.

Conclusions: Parents of children with ASD find respite care to be beneficial, but not all parents are accessing this service. Additional work is needed to reduce barriers related to finding providers and paying for services.