Évaluation de l’influence de la participation des chercheurs et des partenaires sur le processus et les résultats de la recherche participative dans le trouble du spectre de l’autisme et les troubles neurodéveloppementaux : une revue de portée

Titre original en anglais : Assessing the influence of researcher–partner involvement on the process and outcomes of participatory research in autism spectrum disorder and neurodevelopmental disorders: A scoping review

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Jivraj, J., Sacrey, L. R., Newton, A. S., Nicholas, D., & Zwaigenbaum, L. (2014). Assessing the influence of researcher–partner involvement on the process and outcomes of participatory research in autism spectrum disorder and neurodevelopmental disorders: A scoping review. Autism, 18(7), 782-793. https://doi.org/10.1177/1362361314539858

Date de publication: 02/07/2014 Ajout dans AutiHub: 17/07/2026 Type: Article Langue de l’article: Anglais
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Auteurs

Auteur·ices des publications
5
Auteur·ices de la publication identifié·es comme autistes
0 / 5 (0,0 %)
  1. Jamil Jivraj
  2. Lori‐Ann R. Sacrey
  3. Amanda S. Newton
  4. David Nicholas
  5. Lonnie Zwaigenbaum

Résumé

La recherche participative vise à accroître la pertinence et à élargir la mise en œuvre de la recherche en santé en impliquant les personnes concernées par les résultats des études de santé. Peu d’études dans le domaine des troubles neurodéveloppementaux, en particulier des troubles du spectre de l’autisme, ont impliqué des personnes autistes en tant que partenaires. Cette étude visait à identifier et à caractériser les partenariats de recherche participative publiés entre des chercheurs et des personnes présentant un trouble du spectre de l’autisme ou d’autres troubles neurodéveloppementaux, et à examiner l’influence des partenariats de recherche participative sur le processus de recherche et les résultats d’étude rapportés. Une recherche dans des bases de données et un examen de la littérature grise ont identifié sept études décrivant des partenariats de recherche participative entre des chercheurs universitaires et des personnes présentant un trouble du spectre de l’autisme ou d’autres troubles neurodéveloppementaux. Une analyse comparative des études a révélé deux thèmes clés : (1) des variations dans la conception de la recherche participative et (2) des limites lors du compte rendu de l’ampleur de la participation du partenaire. Ces deux thèmes limitent potentiellement l’application et la généralisabilité des résultats. Les résultats de la revue sont discutés en relation avec l’utilisation de cadres d’évaluation pour de telles études de recherche participative afin de déterminer les avantages potentiels des partenariats de recherche participative au sein des populations présentant des troubles neurodéveloppementaux et un trouble du spectre de l’autisme.

Participatory research aims to increase the relevance and broaden the implementation of health research by involving those affected by the outcomes of health studies. Few studies within the field of neurodevelopmental disorders, particularly autism spectrum disorders, have involved autistic individuals as partners. This study sought to identify and characterize published participatory research partnerships between researchers and individuals with autism spectrum disorder or other neurodevelopmental disorders and examine the influence of participatory research partnerships on the research process and reported study outcomes. A search of databases and review of gray literature identified seven studies that described participatory research partnerships between academic researchers and individuals with autism spectrum disorder or other neurodevelopmental disorders. A comparative analysis of the studies revealed two key themes: (1) variations in the participatory research design and (2) limitations during the reporting of the depth of the partner’s involvement. Both themes potentially limit the application and generalizability of the findings. The results of the review are discussed in relation to the use of evaluative frameworks for such participatory research studies to determine the potential benefits of participatory research partnerships within the neurodevelopmental and autism spectrum disorder populations.

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