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

This publication is included in the Autistic Autism Scholarship Project. one author of this publication is identified as autistic in the project.

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Davy, G., Barbaro, J., Unwin, K., Clark, M. L. E., Jellett, R., Date, P., Muniandy, M., & Dissanayake, C. (2024). Leisure, community, workforce participation and quality of life in primary and secondary caregivers of autistic children. Autism Research, 17(4), 799-811. https://doi.org/10.1002/aur.3113

Publication date: 27 Feb 2024 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
8
Publication authors identified as autistic
1 / 8 (12.5%)
  1. Gemma Davy
  2. Josephine Barbaro *
  3. Katy Unwin
  4. Megan L. E. Clark
  1. Rachel Jellett
  2. Perrin Date
  3. Melanie Muniandy
  4. Cheryl Dissanayake

Abstract

Abstract Parents of Autistic children often modify their participation in leisure, social, and employment activities to meet the caregiving needs of their child. However, few studies have examined the impact this has on caregiver quality of life (QoL). The aim in the current study was to examine the role of participation in a range of activities on QoL amongst primary and secondary caregivers of school‐aged Autistic children. Eighty‐eight primary (93% mothers) and 63 secondary (91% fathers) caregivers of Autistic children (aged 7‐ to 12‐years) participated in this cross‐sectional study, with time pressure, participation, social support, parenting stress, and QoL measured via an online questionnaire. Compared to secondary caregivers, primary caregivers reported fewer employment hours, increased time pressure, less participation in desired activities, and higher perceived responsibility of domestic and child‐rearing tasks. Similar levels of leisure frequency, parenting stress, and QoL were identified by both caregivers. Hierarchical regression revealed caregiver participation as important for QoL in both primary and secondary caregivers. However, when measures of caregiver well‐being were added to the model, the unique contribution of participation to QoL was reduced, particularly for secondary caregivers. Overall, the findings demonstrate that despite differences in caregiver roles and responsibilities, participation in meaningful activities was important for QoL in all caregivers.

Bibliography cited by this reference

Cited references are imported from external metadata sources when they are available. The list may be partial.

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 01:04.

Cited references
67
With a DOI
60
Without a DOI, from raw bibliography text
6
4 / 67 (6.0%) cited references include at least one author identified as autistic.
References with data to complete
0 / 67 (0.0%)
References with detected author names
67 / 67 (100.0%)
Without detected author names
0
Without a structured title
0
Without a stable identifier
5
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
235
From DOI or external metadata
235
From validated raw bibliography text
0
Raw names already validated
0
Raw names still to review
0
30 / 235 (12.8%) names are linked to an author already present in AutiHub. 205 / 235 (87.2%) names are not yet linked.
Names linked to a person identified as autistic
4 / 235 (1.7%)
Calculated across all author names detected in the cited bibliography. Among names linked to an author already present in AutiHub: 4 / 30 (13.3%). Distinct people identified as autistic: 2 / 212 (0.9%).
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