Multidimensional Burden on Family Caregivers of Adults with Autism Spectrum Disorder: a Scoping Review

Abstract

AbstractFamily caregivers often play a critical role in supporting their relative(s) with autism spectrum disorder (ASD) across the lifespan. This can lead to great burdens on family caregivers themselves. However, to date, the potential burden on family caregivers has not been in the focus of research, particularly, with respect to caregiver burden as relatives with ASD advance to adulthood. Thus, this scoping review aimed to (a) systematically map research regarding multiple dimensions of caregiver burden on family caregivers of adults with ASD (i.e., time dependence, developmental, physical, social, emotional, and financial burden) and (b) identify interventions designed to reduce such burden. A total of N = 33 eligible studies highlighted the impact of caregiving demands for adults with ASD, mainly focusing on emotional burden of caregiving (n = 27), reporting decreased mental quality of life and mental health. Findings gave indications on all other dimensions of caregiver burden, but evidence is lacking. No study was identified that provided evidence for specific interventions to reduce or to prevent caregiver burden. Findings highlighted the urgent need for more research on this topic and the development of strategies to support family caregivers of adults with ASD.