Comprendre l’utilisation des conseils consultatifs communautaires dans la recherche sur l’autisme : une revue de portée

Titre original en anglais : Understanding the Use of Community Advisory Boards in Autism Research: A Scoping Review

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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Janse van Rensburg, M., Niunin, E., Ostrolenk, A., Arsenault, S., Wilson, A., Weaver, C., Courchesne, V., & Hock, R. M. (2026). Understanding the Use of Community Advisory Boards in Autism Research: A Scoping Review. Review Journal of Autism and Developmental Disorders. https://doi.org/10.1007/s40489-026-00590-w

Date de publication: 10/09/2026 Ajout dans AutiHub: 04/10/2026 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. Margaret Janse van Rensburg
  2. Elisa Niunin
  3. Alexia Ostrolenk
  4. Sydney Arsenault
  1. Anja Wilson
  2. Courtney Weaver *
  3. Valérie Courchesne
  4. Robert M. Hock

Résumé

Résumé L’engagement communautaire est de plus en plus encouragé comme une bonne pratique dans la recherche sur l’autisme, mais on sait peu de choses sur la manière dont les conseils consultatifs communautaires sont utilisés. Cette revue de portée a cartographié l’étendue et la nature de la littérature empirique sur les conseils consultatifs communautaires dans la recherche sur l’autisme. Cinq bases de données ont été interrogées, complétées par une recherche dans les listes de références. Vingt-deux études répondaient aux critères d’inclusion. La plupart ont été publiées récemment, menées aux États-Unis et ont utilisé des méthodes mixtes. Les conseils consultatifs communautaires étaient rarement définis formellement et étaient généralement décrits de manière fonctionnelle plutôt que conceptuelle. La plupart exerçaient des rôles consultatifs, avec une présentation incohérente du recrutement, de la rémunération, de l’intégration, de la communication et de l’influence sur la prise de décision. Les résultats suggèrent que l’utilisation des conseils consultatifs communautaires dans la recherche sur l’autisme est en expansion, mais demeure conceptuellement et méthodologiquement sous-développée.

Abstract Community engagement is increasingly promoted as a good practice in autism research, yet little is known about how Community Advisory Boards are used. This scoping review mapped the extent and nature of empirical literature on Community Advisory Boards in autism research. Five databases were searched, supplemented by reference list searching. Twenty-two studies met inclusion criteria. Most were published recently, conducted in the United States, and used mixed methods. Community Advisory Boards were rarely formally defined and were typically described functionally rather than conceptually. Most operated in consultative roles, with inconsistent reporting of recruitment, compensation, onboarding, communication, and influence on decision-making. Findings suggest that use of Community Advisory Boards in autism research is expanding but remains conceptually and methodologically underdeveloped.

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 : 23/10/2026 01:01.

Références citées
74
Avec un DOI
66
Sans DOI, à partir du texte brut de la bibliographie
8
18 / 74 (24,3 %) références citées comprennent au moins une personne identifiée comme autiste.
Références avec données à compléter
9 / 74 (12,2 %)
Références avec noms d’auteurices détectés
67 / 74 (90,5 %)
Sans nom d’auteurice détecté
7
Sans titre structuré
9
Sans identifiant stable
8
Références avec noms bruts d’auteurices restant à vérifier
7
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
475
À partir du DOI ou de métadonnées externes
475
À partir du texte brut validé de la bibliographie
0
Noms bruts déjà validés
0
Noms bruts restant à vérifier
12
196 / 475 (41,3 %) noms sont associés à un·e auteurice déjà présent·e dans AutiHub. 279 / 475 (58,7 %) noms ne sont pas encore associés.
Noms associés à une personne identifiée comme autiste
54 / 475 (11,4 %)
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 : 54 / 196 (27,6 %). Personnes distinctes identifiées comme autistes : 50 / 446 (11,2 %).
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