Loisirs, communauté, participation à la vie active et qualité de vie chez les aidants principaux et secondaires d'enfants autistes

Titre original en anglais : Leisure, community, workforce participation and quality of life in primary and secondary caregivers of autistic children

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., 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

Date de publication: 27/02/2024 Ajout dans AutiHub: 07/09/2026 Type: Article Langue de l’article: Anglais
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Auteurs

Auteur·ices des publications
8
Auteur·ices de la publication identifié·es comme autistes
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

Résumé

Résumé Les parents d'enfants autistes modifient souvent leur participation aux activités de loisirs, sociales et professionnelles afin de répondre aux besoins de prise en charge de leur enfant. Cependant, peu d'études ont examiné l'incidence de cela sur la qualité de vie (QdV) des aidants. L'objectif de la présente étude était d'examiner le rôle de la participation à diverses activités sur la QdV des aidants principaux et secondaires d'enfants autistes d'âge scolaire. Quatre-vingt-huit aidants principaux (93 % de mères) et 63 aidants secondaires (91 % de pères) d'enfants autistes (âgés de 7 à 12 ans) ont participé à cette étude transversale, la pression temporelle, la participation, le soutien social, le stress parental et la QdV étant mesurés au moyen d'un questionnaire en ligne. Par rapport aux aidants secondaires, les aidants principaux ont déclaré moins d'heures d'emploi, une pression temporelle accrue, une moindre participation aux activités souhaitées et une responsabilité perçue plus élevée concernant les tâches domestiques et l'éducation des enfants. Des niveaux similaires de fréquence des loisirs, de stress parental et de QdV ont été observés chez les deux types d'aidants. Une régression hiérarchique a révélé que la participation des aidants était importante pour la QdV chez les aidants principaux comme chez les aidants secondaires. Cependant, lorsque des mesures du bien-être des aidants ont été ajoutées au modèle, la contribution propre de la participation à la QdV a été réduite, en particulier chez les aidants secondaires. Dans l'ensemble, les résultats montrent que, malgré les différences dans les rôles et responsabilités des aidants, la participation à des activités significatives était importante pour la QdV de tous les aidants.

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.

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 01:04.

Références citées
67
Avec un DOI
60
Sans DOI, à partir du texte brut de la bibliographie
6
4 / 67 (6,0 %) références citées comprennent au moins une personne identifiée comme autiste.
Références avec données à compléter
0 / 67 (0,0 %)
Références avec noms d’auteurices détectés
67 / 67 (100,0 %)
Sans nom d’auteurice détecté
0
Sans titre structuré
0
Sans identifiant stable
5
Références avec noms bruts d’auteurices restant à vérifier
0
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
235
À partir du DOI ou de métadonnées externes
235
À partir du texte brut validé de la bibliographie
0
Noms bruts déjà validés
0
Noms bruts restant à vérifier
0
30 / 235 (12,8 %) noms sont associés à un·e auteurice déjà présent·e dans AutiHub. 205 / 235 (87,2 %) noms ne sont pas encore associés.
Noms associés à une personne identifiée comme autiste
4 / 235 (1,7 %)
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 : 4 / 30 (13,3 %). Personnes distinctes identifiées comme autistes : 2 / 212 (0,9 %).
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