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

Abstract

Purpose 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. Methods 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. Results 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. Conclusion 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.

Leisure, community, workforce participation and quality of life in primary and secondary caregivers of autistic children

“…Unsurprisingly, primary caregivers also identified "study" and "employment" as two activities they wanted to engage in but were unable to participate in. This is consistent with other research highlighting employment as a meaningful occupation for mothers of children with additional needs, including autism (Bourke-Taylor et al, 2011;Davy et al, 2023). Obtaining a balance between committed (i.e., employment, household duties, and caregiving responsibilities) and free time (i.e., selfcare, leisure, and social) participation has been identified as important for life satisfaction and well-being in the general population (Law, 2002;Matuska, 2012;Matuska et al, 2013) and in parents of children with additional needs (Bhopti et al, 2020).…”

“…In recent times, dualincome families have grown, particularly as children start school and the primary caregiver's responsibilities reduce due to the child becoming more independent (Craig & Sawrikar, 2009). However, the findings from the current study and past literature suggest that this trend is typically not seen in families of Autistic children with mothers and/or primary caregivers continuing to participate less in the workforce compared to mothers of non-Autistic children due to the increased caregiving responsibilities (Callander & Lindsay, 2018;Davy et al, 2023). This outcome can have a negative impact on the well-being and identity of the primary caregiver (Houser et al, 2014;Stoner & Stoner, 2016) and the financial security of the wider family unit due to potentially reduced household income.…”

“…Previously, this has been attributed to characteristics related to the Autistic child/ren (Vasilopoulou & Nisbet, 2016). However, a recent qualitative study found that parenting Autistic children was important for overall QoL (Davy et al, 2023). Parent reported lower wellbeing outcomes were attributed to inadequate support that families of Autistic children need to engage and thrive in a community that may not be attuned to diverse needs.…”

“…Parents of Autistic children have described the many benefits of raising an Autistic child including developing loving bonds with their child, personal growth, and new social opportunities (Chau & Furness, 2023;Meleady et al, 2020;Potter, 2016). Although parents of all children experience some challenges in raising their children, parents of Autistic children have additional challenges in supporting their child to thrive in a world that is not designed to meet their needs (Davy et al, 2023). This has been shown to impact negatively on caregiver quality of life (QoL), a multi-dimensional concept encompassing an individual's overall health, well-being, and life satisfaction (WHOQOL Group, 1995).…”

“…Past research highlights increased caregiving time and subsequent time pressure that parents of school-aged Autistic children experience, particularly mothers who are often primary caregivers (Sawyer et al, 2010). Unlike the general population where caregiving needs decrease as children enter school age, Autistic children's needs remain stable throughout childhood (Davy et al, 2023;McCann et al, 2012). Mothers of school-aged Autistic children spend an average of six and a half hours daily on caregiving (Sawyer et al, 2010), notably more than mothers of school-aged typically developing children of who average 3 hours (Smith et al, 2010).…”