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

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Davy, G., Unwin, K., Barbaro, J., & Dissanayake, C. (2022). Leisure, employment, community participation and quality of life in caregivers of autistic children: A scoping review. Autism, 26(8), 1916-1930. https://doi.org/10.1177/13623613221105836

Publication date: 28 Jun 2022 Added to AutiHub: 7 Sep 2026 Type: Article Article language: English
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Authors

Publication authors
4
Publication authors identified as autistic
1 / 4 (25.0%)
  1. Gemma Davy
  2. Katy Unwin
  3. Josephine Barbaro *
  4. Cheryl Dissanayake

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.

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Cited bibliography overview

These indicators describe the bibliography cited by this publication. An author name is counted each time it appears in one cited reference, so the same person can be counted more than once. Names not yet linked to an author already present in AutiHub are treated as unknown, not as non-autistic. Last computed: 12 Sep 2026 18:18.

Cited references
109
With a DOI
105
Without a DOI, from raw bibliography text
4
0 / 109 (0.0%) cited references include at least one author identified as autistic.
References with data to complete
4 / 109 (3.7%)
References with detected author names
109 / 109 (100.0%)
Without detected author names
0
Without a structured title
4
Without a stable identifier
4
References with raw author names still to review
0
References with external metadata lookup issues
0
These indicators apply to cited references displayed on this page, after technical duplicates have been merged. A reference without a DOI can still support author statistics when a title and author names are available.
Author names detected in the cited bibliography
394
From DOI or external metadata
394
From validated raw bibliography text
0
Raw names already validated
0
Raw names still to review
0
31 / 394 (7.9%) names are linked to an author already present in AutiHub. 363 / 394 (92.1%) names are not yet linked.
Names linked to a person identified as autistic
0 / 394 (0.0%)
Calculated across all author names detected in the cited bibliography. Among names linked to an author already present in AutiHub: 0 / 31 (0.0%). Distinct people identified as autistic: 0 / 368 (0.0%).
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