Ajouté le 14/08/2024
Article de revue du type Recherche scientifique ( ; anglais)
*Deux co-auteur·rices sont autistes. [En savoir plus sur cette mention]
Contexte : Les difficultés de santé mentale sont courantes chez les personnes autistes ; cependant, presque aucune intervention n'a été co-conçue avec la communauté autiste. La co-conception a le potentiel d'apporter des perspectives importantes issues de l'expérience vécue dans la conception d'interventions, mais il existe actuellement peu d'exemples sur la manière de mener cette pratique de manière rigoureuse. Cet article détaille un modèle de co-conception et son processus, axé sur l'adaptation d'une intervention parentale basée sur des preuves pour l'anxiété des enfants non autistes (HYC), afin de répondre aux besoins des jeunes enfants autistes. L'objectif est de fournir un exemple de co-conception, intégrant l'expérience et l'expertise des personnes autistes, des parents, des chercheurs, des cliniciens, et des experts.
Méthodes : En utilisant la littérature et les théories antérieures, y compris la co-conception basée sur l'expérience, nous avons développé un processus itératif et collaboratif entre l'équipe de recherche et un groupe de référence d'experts (ERG). L'équipe de recherche comprenait des membres autistes et non autistes. L'ERG incluait des parents (autistes et non autistes) d'enfants autistes ayant des problèmes d'anxiété, des adultes autistes ayant une expérience des problèmes d'anxiété, et des cliniciens ayant une expérience dans le soutien aux enfants autistes ayant des problèmes d'anxiété. L'ERG et l'équipe de recherche ont examiné les informations provenant d'entretiens de recherche qualitative avec des enfants autistes souffrant d'anxiété et leurs parents, ainsi que des informations tirées de l'expérience clinique et de la littérature académique pour parvenir à un consensus sur la conception de l'intervention adaptée.
Résultats : La création d'une intervention véritablement co-conçue qui inclut une perspective affirmative de la neurodiversité, ainsi que des techniques de thérapie cognitivo-comportementale (TCC). Les problèmes d'anxiété rencontrés par les enfants autistes sont abordés en combinant les impacts du fait d'être neurodivergent dans un monde neurotypique, la science du développement et les modèles cognitifs comportementaux bien connus de l'anxiété chez les enfants.
Conclusion : La co-conception peut aider à intégrer de multiples perspectives et aboutir à la création d'interventions potentiellement pertinentes et acceptables pour les personnes autistes, leurs proches, et les cliniciens.
Background: Mental health difficulties are common for autistic people; however, almost no interventions have been co-designed with the autistic community. Co-design has the potential to add important insights from lived experience into intervention design, but there are currently limited examples of how rigorously to undertake this practice. This paper details a worked model of co-design and its process, focussed on adapting an evidenced parent-led intervention for non-autistic child anxiety (HYC), to meet the needs of young autistic children. The aim is to provide an example of co-design, integrating autistic, parental, academic, clinical, experience and expertise.
Methods: Using prior literature and theory, including Experience-Based Co-Design, we developed an iterative and collaborative process between the research team and an expert reference group (ERG). The research team comprised autistic and non-autistic members. The ERG included parents (autistic and non-autistic) of autistic children with anxiety problems, autistic adults with experience of anxiety problems, and clinicians with experience supporting autistic children with anxiety problems. The ERG and research team reviewed information from qualitative research interviews with autistic children with anxiety problems and their parents along with information from clinical experience and the academic literature to reach consensus on the adapted intervention design.
Results: The creation of a truly co-designed intervention that includes a neurodiversity-affirmative perspective, alongside CBT techniques. With anxiety problems experienced by autistic children being framed by combining the impacts of being neurodivergent in a neurotypical world, developmental science and well known cognitive behavioural models of child-anxiety.
Conclusion: Co-design can help to integrate multiple perspectives and result in the creation of interventions that are potentially relevant and acceptable to autistic people, their family members, and clinicians.
Pour information:
(1) les références en bleu sont des ressources référencées sur notre site;
(2) les auteur·rices repris dans cette bibliographie dont le nom est en couleur ont publié d'autres ressources référencées sur le site. Cliquer sur le nom permet de voir la listes des ressources publiées et partagées sur le site;
(3) les auteur·rices dont le nom est suivi d'une astérisque ont publiquement divulgué être autistes. [En savoir plus sur cette mention]
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