« Il est vraiment important de collaborer » : expériences de la recherche participative chez des parents chinois et vietnamiens d'enfants autistes

Titre original en anglais : ‘It's really important to be collaborating’: Experiences of participatory research for Chinese and Vietnamese parents of autistic children

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Smith, J., Rabba, A. S., Datta, P., Dresens, E., Wang, R., Cong, L., Dang, N. T., Hall, G., Heyworth, M., Lawson, W., Lee, P., Lilley, R., Ma, E., Nguyen, H. T., Nguyen, K. V., Nguyen, P., Yeow, C. T., & Pellicano, E. (2023). ‘It's really important to be collaborating’: Experiences of participatory research for Chinese and Vietnamese parents of autistic children. Autism & Developmental Language Impairments, 8, 23969415231210482-23969415231210482. https://doi.org/10.1177/23969415231210482

Date de publication: 01/01/2023 Ajout dans AutiHub: 05/07/2026 Type: Article Langue de l’article: Anglais
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Auteurs

Auteur·ices des publications
18
Auteur·ices de la publication identifié·es comme autistes
3 / 18 (16,7 %)
  1. Jodie Smith
  2. Aspasia Stacey Rabba
  3. Poulomee Datta
  4. Emma Dresens
  5. Rena Wang
  6. Lin Cong
  1. Ngoc T. Dang
  2. Gabrielle Hall *
  3. Melanie Heyworth *
  4. Wenn Lawson *
  5. Patricia Lee
  6. Rozanna Lilley
  1. Emily Ma
  2. Hau T.T. Nguyen
  3. Kim-Van Nguyen
  4. Phuc Nguyen
  5. Chong Tze Yeow
  6. Elizabeth Pellicano

Résumé

Contexte et objectifs : La recherche participative implique que des partenaires universitaires travaillent avec la communauté concernée par la recherche afin de prendre des décisions concernant cette recherche. De telles approches aboutissent souvent à une recherche plus respectueuse des préférences de la communauté et plus réactive à celles-ci, et elles sont essentielles dans le contexte de la recherche sur l'autisme menée avec des communautés culturellement et linguistiquement diverses (CALD). Bien que les approches participatives deviennent plus courantes dans la recherche sur l'autisme auprès des communautés CALD, aucune étude n'a exploré les expériences de participation à la recherche sur l'autisme du point de vue de partenaires communautaires CALD au cours d'une étude. Cet article visait à combler cette lacune en rapportant les expériences de parents CALD d'enfants autistes qui étaient des partenaires communautaires dans un projet de recherche australien d'un an explorant les partenariats entre le domicile et l'école pour les parents CALD d'enfants autistes. Nos objectifs étaient de : (1) rapporter comment la participation des parents au processus de recherche a façonné au fil du temps l'étude sur les partenariats entre le domicile et l'école et (2) comprendre leurs expériences en tant que partenaires communautaires dans le projet sur les partenariats entre le domicile et l'école. Méthodes : En nous appuyant sur des principes clés des approches participatives, nous avons créé des groupes consultatifs de parents chinois et vietnamiens afin de contribuer à un projet explorant les partenariats entre le domicile et l'école pour les parents d'enfants autistes issus de milieux CALD en Australie. Les groupes consultatifs comprenaient des parents d'enfants autistes d'origine chinoise ou vietnamienne, ainsi que des interprètes, des professionnels et des chercheurs. Nous avons documenté comment la participation des parents en tant que partenaires communautaires a façonné l'étude sur les partenariats entre le domicile et l'école au cours du projet. Nous avons également recueilli les propres points de vue et expériences des parents en tant que partenaires communautaires au moyen de questions informelles et ouvertes au début et à la fin de l'étude. Résultats : Nous avons constaté que les contributions des parents ont fondamentalement façonné l'étude plus large sur les partenariats entre le domicile et l'école, depuis la traduction pertinente et exacte des guides d'entretien jusqu'à la prise de décisions concernant des recommandations propres à la communauté et des plans de diffusion. Les parents eux-mêmes ont déclaré être désireux de collaborer, d'entendre et de partager des opinions dans le cadre de l'étude sur les partenariats entre le domicile et l'école, bien qu'ils aient souligné à quel point le partage de leurs récits pouvait être émotionnellement difficile. Bien qu'ils aient initialement eu certaines préoccupations quant à la conciliation de leur participation en tant que partenaires communautaires avec leurs responsabilités existantes, les parents ont finalement été surpris par l'ampleur de l'étude sur les partenariats entre le domicile et l'école et par leur niveau de participation en tant que partenaires communautaires. En entendant les récits d'autres personnes et en partageant les leurs lors des réunions des groupes consultatifs, les parents ont fait état de bénéfices secondaires de leur participation, notamment une plus grande capacité d'auto-représentation et un meilleur bien-être. Conclusions : les membres divers de la communauté de l'autisme ont la capacité d'améliorer la qualité de la recherche et de bénéficier aux partenaires communautaires. Implications : Cette étude documente clairement les avantages et les difficultés potentielles des approches participatives avec les communautés CALD. Ces résultats soulignent auprès des chercheurs et des financeurs l'importance d'inclure du temps et des fonds supplémentaires dans les budgets afin de produire une recherche pertinente, respectueuse des communautés et réactive à leurs besoins.

Background and aims: Participatory research involves academic partners working together with the community that is affected by research to make decisions about that research. Such approaches often result in research that is more respectful of, and responsive to, community preferences - and is vital in the context of autism research with culturally and linguistically diverse (CALD) communities. Whilst participatory approaches are becoming more commonplace within CALD autism research, no studies have explored the experiences of being involved in autism research from the perspectives of CALD community partners over the course of a study. This paper intended to address this gap by reporting on the experiences of CALD parents of autistic children who were community partners in a 1-year Australian research project exploring home-school partnerships for CALD parents of autistic children. We aimed to: (1) report on how parents' involvement in the research process shaped the home-school partnerships study over time and (2) understand their experiences of being community partners on the home-school partnerships project. Methods: Using key principles of participatory approaches, we established Chinese and Vietnamese parent advisory groups to contribute to a project exploring home-school partnerships for parents of autistic children from CALD backgrounds in Australia. Advisory groups included parents of autistic children from Chinese/Vietnamese backgrounds, as well as interpreters, professionals and researchers. We documented how parents' participation as community partners shaped the home-school partnerships study over the course of the project. We also elicited parents' own views and experiences of being community partners through informal, open-ended questions at the beginning and end of the study. Results: We found that parents' input fundamentally shaped the broader home-school partnership study, from meaningful, accurate translation of interview schedules through to making decisions regarding community-specific recommendations and dissemination plans. Parents themselves reported being keen to collaborate and to hear and share opinions for the purpose of the home-school partnership study - although they noted how emotionally difficult sharing their stories could be. While they initially had some concerns about combining being involved as a community partner with their existing responsibilities, ultimately, parents were surprised by the scope of the home-school partnership study and their level of involvement as community partners. Through hearing others' stories and sharing their own in advisory group meetings, parents reported ancillary benefits of their involvement, including increased self-advocacy and well-being. Conclusions: diverse members of the autism community has the capacity to improve the quality of the research and benefit community partners. Implications: This study clearly documents the benefits and potential challenges of participatory approaches with CALD communities. These findings emphasise to researchers and funders the importance of including extra time and money within budgets in order to produce meaningful research that is respectful and responsive to communities.

Bibliographie citée par cette référence

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Vue d’ensemble de l’inclusion dans la bibliographie

Ces indicateurs décrivent la bibliographie citée importée pour cette publication. Les métriques de références citées utilisent le total des références citées comme dénominateur. Les métriques d’auteurices cité·es indiquent si elles utilisent toutes les occurrences d’auteurices cité·es ou seulement les occurrences rattachées à des auteurices déjà intégré·es à la base de données AutiHub. Ils utilisent les rattachements mis en cache entre les auteurices cité·es et les auteurices intégré·es à la base de données AutiHub. Dernier calcul : 16/08/2026 11:30.

Références citées
52
Nombre total de références citées intégrées pour cette publication.
Références citées avec un·e auteur·ice identifié·e comme autiste
8 / 52 (15,4 %)
Occurrences d’auteur·ices cité·es identifié·es comme autistes
27 / 267 (10,1 %)
Parmi les occurrences rattachées à des auteurices intégré·es à la base de données AutiHub : 27 / 97 (27,8 %). Auteurices cité·es distinct·es identifié·es comme autistes : 17 / 225 (7,6 %).
Occurrences citées rattachées à la base AutiHub
97 / 267 (36,3 %)
Auteurices cité·es distinct·es rattaché·es : 63 / 225 (28,0 %)
Occurrences rattachées, non identifiées comme autistes
70 / 97 (72,2 %)
Parmi les seules occurrences rattachées. Sur l’ensemble des occurrences d’auteurices cité·es : 70 / 267 (26,2 %). Auteurices cité·es distinct·es rattaché·es, non identifié·es comme autistes : 46 / 63 (73,0 %).
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