Priorités de recherche de la communauté de l'autisme : une revue systématique des perspectives des principales parties prenantes

Titre original en anglais : Research priorities of the autism community: A systematic review of key stakeholder perspectives

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Roche, L., Adams, D., & Clark, M. (2020). Research priorities of the autism community: A systematic review of key stakeholder perspectives. Autism, 25(2), 336-348. https://doi.org/10.1177/1362361320967790

Date de publication: 03/11/2020 Ajout dans AutiHub: 17/07/2026 Type: Article Langue de l’article: Anglais
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Auteurs

Auteur·ices des publications
3
Auteur·ices de la publication identifié·es comme autistes
0 / 3 (0,0 %)
  1. Laura Roche
  2. Dawn Adams
  3. Megan Clark

Résumé

Ces dernières années, un changement d'orientation a conduit les chercheurs à chercher à identifier les priorités et les préférences des principales parties prenantes afin d'orienter les futures recherches destinées aux personnes sur le spectre de l'autisme. Le processus de synthèse des points de vue, des connaissances et de l'expertise des principales parties prenantes ayant une expérience vécue ou partagée de l'autisme est inestimable et peut éclairer les recherches futures afin de garantir qu'elles soient pertinentes et aient le plus grand impact. Un certain nombre d'études ont fait état des priorités de recherche de groupes au sein de la communauté de l'autisme, mais à ce jour, ces études sont isolées et les priorités n'ont pas été examinées collectivement. Cette revue systématique a identifié sept études faisant état des priorités des principales parties prenantes pour la recherche sur l'autisme. Les études ont été synthétisées selon a) le groupe de participants ciblé et la méthode de recrutement, b) la méthodologie utilisée pour élucider le point de vue des parties prenantes, c) le pays des parties prenantes et d) les priorités communément identifiées. Les caractéristiques communes aux études soulignent l'importance de donner la priorité aux initiatives qui entraîneront des changements concrets dans la vie de la communauté de l'autisme ainsi qu'à davantage de recherches couvrant toute la durée de la vie. Un besoin a été identifié de voix de parties prenantes plus diverses afin d'influencer l'identification des priorités pour les futurs axes de recherche. L'inclusion continue des communautés autiste et de l'autisme dans les recherches sur l'établissement des priorités est impérative pour obtenir des résultats significatifs dans la recherche sur l'autisme et faire progresser le domaine de manière efficace et socio-éthique. Résumé grand public Il est devenu très important, dans la recherche sur l'autisme, de demander à la communauté autiste quels types de recherches elle estime devoir être menés afin d'améliorer la vie des personnes autistes. De nombreuses études ont fait état d'objectifs de recherche provenant de personnes au sein de la communauté de l'autisme, telles que les parents de personnes sur le spectre de l'autisme, ainsi que les praticiens et cliniciens qui accompagnent les personnes sur le spectre de l'autisme. Jusqu'à présent, les objectifs de recherche de toutes ces études n'ont pas été examinés ensemble, ce qui est important afin que toute la recherche sur l'autisme puisse œuvrer vers les mêmes objectifs. Nous avons examiné sept études qui portaient sur les priorités de la recherche sur l'autisme selon des personnes clés au sein de la communauté de l'autisme. Chacune des études examinées est décrite selon a) les types de personnes participant à l'étude, b) la manière dont les objectifs de recherche de chaque groupe de personnes ont été identifiés, c) le pays dont elles provenaient et d) les objectifs de recherche les plus fréquents dans l'ensemble des études. Au sein de ces sept études, il a été constaté que les recherches qui conduiront à des changements concrets dans la vie quotidienne de la communauté de l'autisme ainsi qu'une plus grande attention accordée à la formation aux compétences des personnes autistes tout au long de leur vie étaient très importantes. Cette revue a également montré qu'il est très important d'inclure un éventail de personnes différentes de la communauté de l'autisme lorsqu'il s'agit de décider des objectifs de la recherche sur l'autisme sur lesquels il convient de se concentrer, afin que les recherches futures puissent être plus utiles à la communauté de l'autisme.

In recent years, a shift in focus has seen researchers seek to identify the priorities and preferences of key stakeholders to shape the direction of future research for those on the autism spectrum. The process of synthesising the views, knowledge and expertise of key stakeholders with either a lived or shared experience of autism is invaluable and can inform future research to ensure that it is meaningful and has the greatest impact. A number of studies have reported on the research priorities of groups within the autism community, but to date, these studies stand alone and priorities have not been considered collectively. This systematic review identified seven studies that reported on key stakeholders’ priorities for autism research. Studies were synthesised according to (a) the target participant group and method of recruitment, (b) the methodology used to elucidate the viewpoint of stakeholders, (c) the country of stakeholders and (d) commonly identified priorities. Common features across studies note the importance of prioritising initiatives that will result in real-world changes in the lives of the autism community and more research across the lifespan. There is an identified need for more diverse stakeholder voices to influence the identification of priorities for future research foci. Continued inclusion of the autistic and autism communities in priority-setting research is imperative for achieving significant outcomes in autism research and to progress the field in an effective and socio-ethical way. Lay abstract It has become very important in autism research to ask the autistic community about what kinds of research they think should be done in order to improve the lives of people with autism. Many studies have reported on research goals from people within the autism community, such as parents of people on the autism spectrum, and practitioners and clinicians who support people on the autism spectrum. So far, the research goals from all of these studies have not been considered together, which is important so that all autism research can be working towards the same goals. We reviewed seven studies that looked at the priorities for autism research from key people within the autism community. Each of the reviewed studies are described according to (a) the types of people involved in the study, (b) the way the research goals from each group of people were identified, (c) the country where they were from and (d) the most common research goals from across all of the studies. Within these seven studies, research that will lead to real-world changes in the daily lives of the autism community and a greater focus on skill training for people with autism across their lives were found to be very important. From this review, we found that it is also very important to include a range of different people from the autism community when deciding what autism research goals should be focused on so that future research can be more helpful for the autism community.

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