Leisure, Employment, Community Participation, and Quality of Life in Primary Caregivers of Autistic Children: A Qualitative Study.

Abstract

In prioritising the needs of their autistic children, parents often modify their own participation across leisure, social, and workforce activities. Few studies have examined the impact these modifications have on caregiver quality of life (QoL). The aim in the current study was to examine how parenting their autistic child/ren impacts parent's participation and QoL. Twenty primary caregivers (29-48 years, all female) of autistic children (7-11 years) were interviewed online about their participation in leisure, community, and employment activities including the impact of COVID-19. Five themes with underlying subthemes were identified using reflexive thematic analysis. The themes were: (1) Reflecting on the important things in life, (2) Getting access to everything needed, (3) Barriers to participation in meaningful activities, (4) Facilitators of participation in meaningful activities, and (5) Participation through the COVID-19 pandemic. The findings highlight the importance of regular participation in meaningful activities for parents of autistic children and the support needed by them, particularly single parents, to achieve balance between meeting caring responsibilities and their own participation needs.