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School-Based Participatory Research with Autistic Children and Young People: A Systematic Review of Approaches,
Chloe Johnson1, Clare Wood1, David Daley1
1Nottingham Trent University, UK.
Abstract:
Participatory research offers a promising means to understand how autistic children and young people (CYP) can be supported and to co-create services or resources that meet their needs. While widely valued, evidence on the most effective ways to meaningfully engage autistic CYP, and on whether and how findings reach educators, is limited. This systematic review narratively synthesises studies reporting the use of school-based participatory research with autistic CYP and reports the approaches, methods, and outcomes of such projects. Initial searches across five databases yielded 1,515 results. After removal of duplicates, 493 studies were screened by abstract and title, and full-text screening was conducted on studies (n = 48) that appeared to meet the inclusion criteria. Studies that met pre-identified eligibility criteria (n = 22), and studies identified through backward citation (n = 2), were included. Creative idea generation, tangible methods, and visual methods are particularly effective for engaging this demographic. However, it was difficult to determine broader implications for schools, as few researchers reported sharing findings with educators. Findings highlight the potential for participatory research, if carefully designed and consistently shared with educators and decision-makers, to contribute to more inclusive schools responsive to the needs and strengths of autistic CYP.Lay AbstractParticipatory research means working with communities rather than doing research on them. In the context of autism, this approach involves collaborating directly with autistic children and young people to understand how schools can better support them and to co-create services or resources that meet their needs. While participatory approaches are widely valued, there is limited evidence on the most effective ways to meaningfully involve autistic children and young people in research. In this review, we examined how participatory research has been carried out with autistic children and young people in school settings. We searched five electronic databases for studies published between 2014 and 2024. From these searches, we found 1,515 studies. We then removed studies that were the same, which left us with 493. We then checked the abstract and titles of these 493 studies to see if we should include them in our review. We then read full texts for 48 studies and included 22. By checking the reference lists of the included studies, we identified two additional studies, bringing the total to 24. We found that different ways of involving autistic children and young people in research can work in school settings. Creative idea generation, tangible methods, and visual methods were particularly effective for helping them take part. However, many studies did not report whether findings were shared back with schools, making it difficult to assess broader impacts. Overall, our review highlights the potential for participatory research, when carefully planned and transparently shared with stakeholders, to support schools in becoming more inclusive and better meeting the needs and strengths of autistic students.
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