Differential Levels of Caregiver Burden Among Parents of Adults With Autism.

Abstract

Background: Parents of a child with autism spectrum disorder (ASD) often continue providing care for their children across the lifespan until they are no longer able, which can cause caregiver burden and affect their quality of life (QOL). To date, most of the research focuses on parents of young children with ASD, with only a small body of research on older parents of adults with ASD.

Objective: The purpose of this study was to determine whether perceived caregiver health, QOL, availability of informal support, and number of formal supports differed by 3 levels of caregiver burden.

Methods: A total of 320 older parents (age ≥50 years) of adults with ASD participated in this cross-sectional survey research study that used multiple analysis of variance (MANOVA) to understand the challenges of caregivers when compared by the perceived levels of caregiver burden.

Results: MANOVA indicated that better health, positive QOL, more availability of informal support, and use of fewer formal supports were associated with lower levels of caregiver burden (F_8,614 = 18.48, P < .001, ${\eta }_p^2$ = 0.19).

Conclusion: Given that high caregiver burden was associated with lower caregiver health, QOL, decreased availability of informal support, and greater use of formal supports, nurses and other health professionals should be cognizant that older parents need specialized attention.