Leisure, employment, community participation and quality of life in caregivers of autistic children: A scoping review

Parenting an autistic child can reduce the time parents have to participate in their own interests, but the impact this has on caregiver quality of life is not well understood. The aim in undertaking this scoping review was to examine and describe current research about occupational participation and quality of life among parents of autistic children. Using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension guidelines, a comprehensive search of multiple databases was conducted with a systematic selection process resulting in a final set of 70 articles. These included publications related to leisure, community and employment occupations, and quality of life in parents and caregivers of autistic children or children with additional needs. The review revealed the impact of caregiving demands and challenges in raising an autistic child that often take priority over the caregiver's own needs and desires, particularly in occupational participation, which impacts their quality of life. Gaps were identified in the literature on parental occupations and the relationship with quality of life among caregivers of autistic children, particularly fathers. Further investigation into caregiving experiences and examination of the relationship between parental occupations and quality of life in caregivers of autistic children is needed, as the findings can inform the development of suitable supports for them. Lay abstract We searched a wide range of academic journals for published information on the participation levels of caregivers of autistic children in activities relating to leisure, social, community and employment contexts, and the impact that participation may have on caregiver quality of life. Overall, we found that the impact of parenting an autistic child is broad with caregivers often prioritising their child's needs over their own, particularly in occupational participation, which impacts their quality of life. Findings also highlighted a need for further research to investigate the experience of caregivers, and the relationship between participation and quality of life in caregivers of autistic children, as the results can inform the development of better supports for them.