Burden, health care needs, and Quality of Life of family caregivers of adults with Autism Spectrum Disorder

Abstract

Family members often provide support for their autistic relative throughout the whole lifespan which can lead to massive burden themselves. To date, research primarily focused on the burden on parental caregivers of autistic children/adolescents, but the burden on family caregivers of autistic adults has been barely assessed. For this purpose, this dissertation had four aims: (1) scrutinize existing evidence on burden and interventions for family caregivers of autistic adults; (2) compare the health-related Quality of Life (HRQoL) of family caregivers with the general population; (3) identify caregiver-related and care recipient-related predictors of HRQoL; (4) assess the current state of mental healthcare for autistic adults in Germany and possible associations with the burden and needs of family caregivers. (1) Within a scoping review, N=33 studies indicated multidimensional burden, with most studies focusing on the emotional burden. No caregiver intervention was identified. (2) N=149 caregivers of autistic adults completed the Short-Form Health Survey (SF-8) in a cross-sectional online survey. Caregivers reported significantly lower physical and mental HRQoL compared to the general population. (3) Multiple linear regression analyses revealed subjective caregiver burden explaining most of variance in mental HRQoL, and no significant predictor of physical HRQoL could be identified. (4) Focus groups with caregivers (n=12) and healthcare providers (n=15), and interviews with autistic adults (n=15) emphasized massive barriers in the current mental healthcare, great caregiver burden, and high needs for caregiver services. Findings indicated the existence of multidimensional caregiver burden in family caregivers of autistic adults. Therefore, strategies to reduce caregiver burden must be developed. For example, evidence-based interventions tailored for family caregivers need to be established, and the mental healthcare for autistic adults must be improved.