Construire l'avenir ensemble : façonner la recherche sur l'autisme par une participation significative
Titre original en anglais : Making the future together: Shaping autism research through meaningful participation
Fletcher‐Watson, S., Adams, J., Brook, K., Charman, T., Crane, L., Cusack, J., Leekam, S., Milton, D., Parr, J. R., & Pellicano, E. (2018). Making the future together: Shaping autism research through meaningful participation. Autism, 23(4), 943-953. https://doi.org/10.1177/1362361318786721
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Auteurs
Résumé
Les méthodes de recherche participative mettent en relation les chercheurs et les communautés concernées afin d'atteindre des objectifs communs. Ces méthodes peuvent produire des résultats pertinents pour la vie des personnes et donc susceptibles d'avoir un impact positif. Dans le contexte d'un corpus vaste et croissant de recherches sur l'autisme, d'une mise en œuvre qui demeure insuffisante et de certains éléments indiquant l'insatisfaction de la communauté, les arguments en faveur d'une recherche participative sur l'autisme sont convaincants. Afin d'élaborer un cadre pour ce travail collaboratif, une série de séminaires au Royaume-Uni a été organisée et coproduite par des personnes autistes et non autistes disposant d'une expertise universitaire, professionnelle et issue de l'expérience vécue. Cet article rend compte des résultats de cette série, en identifiant cinq thèmes pertinents pour la construction d'une communauté de pratique en recherche participative : Respect, Authenticité, Hypothèses, Infrastructure et Empathie. Chaque thème est associé à un exemple précis provenant de la recherche et d'au-delà, afin d'inspirer de nouvelles pratiques dans ce domaine. Nous appelons au développement de compétences en recherche participative au sein de la communauté de recherche sur l'autisme ainsi qu'à la facilitation d'un plus grand leadership autiste et de partenariats accrus dans la recherche. Un tel travail, s'il est réalisé selon des normes élevées, est susceptible de conduire à une meilleure transposition dans la pratique et à de meilleurs résultats pour les personnes autistes et celles qui les soutiennent.
Bibliographie citée par cette référence
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