Vers une recherche sur l’autisme reproductible et respectueuse : combiner des pratiques de recherche ouverte et participative sur l’autisme
Titre original en anglais : Towards reproducible and respectful autism research: Combining open and participatory autism research practices
Hobson, H., Linden, A., Crane, L., & Kalandadze, T. (2023). Towards reproducible and respectful autism research: Combining open and participatory autism research practices. Research in Autism Spectrum Disorders, 106, 102196. https://doi.org/10.1016/j.rasd.2023.102196
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Auteurs
Résumé
La recherche ouverte désigne généralement un ensemble de pratiques visant à accroître la transparence, la rigueur, la reproductibilité et l’inclusivité de la recherche. La recherche participative consiste à intégrer les points de vue de la communauté de l’autisme et à partager le pouvoir avec elle afin de décider quelles recherches sont menées, comment elles le sont et comment elles sont mises en œuvre. L’intérêt pour les pratiques ouvertes et participatives dans la recherche sur l’autisme est croissant. À ce jour, toutefois, ces pratiques ont eu tendance à être envisagées séparément. Dans cet article, nous exposons la valeur des approches ouvertes et participatives pour le domaine de la recherche sur l’autisme, en soulignant les principaux points de recoupement. Nous proposons trois principes fondamentaux qui sous-tendent la recherche ouverte et participative sur l’autisme : (1) la nécessité de disposer d’une expertise et d’infrastructures adéquates pour faciliter une recherche de haute qualité, (2) la nécessité d’un plus grand degré d’accessibilité à toutes les étapes du processus de recherche, et (3) la nécessité de favoriser des relations de confiance entre les communautés autiste et de la recherche. L’adoption de principes ouverts et participatifs dans la recherche sur l’autisme présente divers défis et opportunités. Nous espérons que nos principes aideront les chercheurs à intégrer plus pleinement ces approches dans leurs travaux.
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