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

Abstract

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.

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

“…Several meaningful activities were identified by parents with the most common being employment, family outings, and leisure activities. Past literature has also highlighted similar activities as being beneficial for QoL in caregivers of children with additional needs, including autism (Davy et al, 2022 ), with increased frequency of health-related activities associated with higher levels of maternal QoL (Bourke-Taylor et al, 2012 ; Harris et al, 2022 ). However, other research has found that increased participation in leisure and community activities resulted in poorer physical health-related QoL in mothers of autistic children (Rizk et al, 2011 ).…”

“…All caregivers interviewed in the current study were primary caregiving mothers. Although prior research demonstrates reduced QoL in mothers of autistic children compared to fathers (McStay et al, 2014b ), the role of participation on QoL in fathers and/or secondary caregivers remains relatively unknown (Davy et al, 2022 ). Therefore, further investigation into the occupational experiences of both primary and secondary caregivers of autistic children would help to improve our understanding of how best to support both parents of autistic children in achieving good QoL.…”

“…The aim in the current study was to examine caregiver participation in leisure, employment, and community related activities when raising autistic child/ren, and their perceptions and beliefs regarding their QoL. Primary caregivers were chosen as the focus for this study as they tend to take on the most responsibility when caring for an autistic child (McStay et al, 2014) and appear to be the most impacted in their day-to-day activities compared to secondary caregivers (Davy et al, 2022 ). Given reported differences in parenting school-aged autistic children or children with additional needs compared to typically developing children or autistic children from other age groups (i.e., preschool, adolescence; Callander & Lindsay 2018 ; McCann et al, 2012 ; McStay et al, 2014a ), the current study focused on caregiver experiences in families of autistic children aged 7–11 years.…”

“…It involves finding a balance between the different occupations an individual may engage in (i.e., leisure, employment, self-care, and social activities); achieving that balance has been shown to promote overall health, well-being, and life satisfaction (Backman, 2004 ; Matuska & Christiansen, 2008 ). For parents of autistic children, achieving occupational balance may help to maintain a sense of fulfillment, satisfaction, and overall well-being by providing them with opportunities to engage in meaningful and enjoyable activities beyond their caregiving role (Davy et al, 2022 ). Further, it may also help them to better manage the time pressure associated with caregiving and to maintain their own physical and mental health.…”

Investigating the impact of autistic children's feeding difficulties on caregivers

“…The importance of caregiver well‐being in raising autistic children is well established, particularly given the additional stressors that many caregivers experience. For example, caregivers of autistic children have higher demands placed on them related to caring for their autistic children including attending additional health professional appointments (Davy et al, 2022; DePape & Lindsay, 2015). Davy et al (2022) highlighted the impact on caregivers' quality of life, which influenced their own social participation levels for leisure, community access and employment.…”