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

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Davy, G., Barbaro, J., Unwin, K., & Dissanayake, C. (2023). Leisure, Employment, Community Participation, and Quality of Life in Primary Caregivers of Autistic Children: A Qualitative Study. Journal of Autism and Developmental Disorders, 54(7), 2591-2603. https://doi.org/10.1007/s10803-023-05992-x

Publication date: 12 May 2023 Added to AutiHub: 7 Sep 2026 Type: Article Article language: English
Publisher source (DOI) Full text OpenAlex source

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Authors

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

Abstract

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.

Bibliography cited by this reference

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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
60
With a DOI
57
Without a DOI, from raw bibliography text
3
4 / 60 (6.7%) cited references include at least one author identified as autistic.
References with data to complete
4 / 60 (6.7%)
References with detected author names
56 / 60 (93.3%)
Without detected author names
4
Without a structured title
3
Without a stable identifier
3
References with raw author names still to review
3
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
204
From DOI or external metadata
204
From validated raw bibliography text
0
Raw names already validated
0
Raw names still to review
4
36 / 204 (17.6%) names are linked to an author already present in AutiHub. 168 / 204 (82.4%) names are not yet linked.
Names linked to a person identified as autistic
6 / 204 (2.9%)
Calculated across all author names detected in the cited bibliography. Among names linked to an author already present in AutiHub: 6 / 36 (16.7%). Distinct people identified as autistic: 4 / 185 (2.2%).
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