Loisirs, emploi, participation communautaire et qualité de vie chez les principaux aidants d'enfants autistes : une étude qualitative

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

Cette publication est incluse dans le projet « Contributions académiques de personnes autistes sur l’autisme ». un auteur·ice de cette publication est identifié·e comme autiste dans le projet.

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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

Date de publication: 12/05/2023 Ajout dans AutiHub: 07/09/2026 Type: Article Langue de l’article: Anglais
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Auteurs

Auteur·ices des publications
4
Auteur·ices de la publication identifié·es comme autistes
1 / 4 (25,0 %)
  1. Gemma Davy
  2. Josephine Barbaro *
  3. Katy Unwin
  4. Cheryl Dissanayake

Résumé

Résumé Objectif En donnant la priorité aux besoins de leurs enfants autistes, les parents modifient souvent leur propre participation aux activités de loisirs, sociales et professionnelles. Peu d'études ont examiné l'incidence de ces modifications sur la qualité de vie (QdV) des aidants. L'objectif de la présente étude était d'examiner comment le fait d'élever leur(s) enfant(s) autiste(s) influe sur la participation et la QdV des parents. Méthodes Vingt principaux aidants (29-48 ans, toutes des femmes) d'enfants autistes (7-11 ans) ont été interrogés en ligne sur leur participation aux activités de loisirs, communautaires et professionnelles, y compris l'incidence de la COVID-19. Résultats Cinq thèmes, accompagnés de sous-thèmes sous-jacents, ont été identifiés à l'aide d'une analyse thématique réflexive. Les thèmes étaient : (1) Réfléchir aux choses importantes dans la vie, (2) Obtenir l'accès à tout ce qui est nécessaire, (3) Obstacles à la participation à des activités significatives, (4) Facilitateurs de la participation à des activités significatives et (5) Participation pendant la pandémie de COVID-19. Conclusion Les résultats soulignent l'importance d'une participation régulière à des activités significatives pour les parents d'enfants autistes et du soutien dont ils ont besoin, particulièrement les parents seuls, afin d'atteindre un équilibre entre la satisfaction des responsabilités de soins et leurs propres besoins de participation.

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.

Bibliographie citée par cette référence

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Vue d’ensemble de la bibliographie citée

Ces indicateurs décrivent la bibliographie citée par cette publication. Un nom d’auteurice est compté chaque fois qu’il apparaît dans une référence citée : une même personne peut donc être comptée plusieurs fois. Les noms qui ne sont pas encore associés à un·e auteurice déjà présent·e dans AutiHub sont traités comme inconnus, pas comme non autistes. Dernier calcul : 12/09/2026 18:18.

Références citées
60
Avec un DOI
57
Sans DOI, à partir du texte brut de la bibliographie
3
4 / 60 (6,7 %) références citées comprennent au moins une personne identifiée comme autiste.
Références avec données à compléter
4 / 60 (6,7 %)
Références avec noms d’auteurices détectés
56 / 60 (93,3 %)
Sans nom d’auteurice détecté
4
Sans titre structuré
3
Sans identifiant stable
3
Références avec noms bruts d’auteurices restant à vérifier
3
Références avec problème de récupération des métadonnées externes
0
Ces indicateurs portent sur les références citées affichées sur cette page, après fusion des doublons techniques. Une référence sans DOI peut quand même soutenir les statistiques d’auteurices lorsqu’un titre et des noms d’auteurices sont disponibles.
Noms d’auteurices détectés dans la bibliographie citée
204
À partir du DOI ou de métadonnées externes
204
À partir du texte brut validé de la bibliographie
0
Noms bruts déjà validés
0
Noms bruts restant à vérifier
4
36 / 204 (17,6 %) noms sont associés à un·e auteurice déjà présent·e dans AutiHub. 168 / 204 (82,4 %) noms ne sont pas encore associés.
Noms associés à une personne identifiée comme autiste
6 / 204 (2,9 %)
Calculé sur l’ensemble des noms d’auteurices détectés dans la bibliographie citée. Parmi les noms associés à un·e auteurice déjà présent·e dans AutiHub : 6 / 36 (16,7 %). Personnes distinctes identifiées comme autistes : 4 / 185 (2,2 %).
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