Co-conception pour la recherche participative sur la neurodiversité : collaboration avec un comité consultatif communautaire pour concevoir une étude de recherche

Titre original en anglais : Co-Design for Participatory Neurodiversity Research: Collaborating With a Community Advisory Board to Design a Research Study

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Cunff, A. L., Logan, P. E., Ford, R. M., Martis, B. L., Mousset, I., Sekibo, J., Dommett, E. J., & Giampietro, V. (2023). Co-Design for Participatory Neurodiversity Research: Collaborating With a Community Advisory Board to Design a Research Study. Journal of Participatory Research Methods, 4(1). https://doi.org/10.35844/001c.66184

Date de publication: 02/02/2023 Ajout dans AutiHub: 17/07/2026 Type: Article Langue de l’article: Anglais
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Auteurs

Auteur·ices des publications
8
Auteur·ices de la publication identifié·es comme autistes
0 / 8 (0,0 %)
  1. Anne‐Laure Le Cunff
  2. Poppy Ellis Logan
  3. Rhian M. Ford
  4. Brandon-Lee Martis
  1. Iris Mousset
  2. Jane Sekibo
  3. Eleanor J. Dommett
  4. Vincent Giampietro

Résumé

La pratique de recherche inclusive caractérisée par l'implication de personnes neurodivergentes dans des rôles significatifs a été décrite comme une « exigence d'excellence » dans la recherche sur la neurodiversité. Ce rapport décrit un processus de co-conception mené en partenariat avec un comité consultatif communautaire afin d'élaborer une étude de recherche impliquant des étudiants neurotypiques et neurodivergents en tant que participants. De la formation du partenariat avec sept membres du comité consultatif communautaire jusqu'aux résultats du processus de co-conception, ce rapport détaille les méthodes associées à chaque étape, ainsi que les avantages et les défis recensés en collaboration avec les membres du comité consultatif communautaire. Des possibilités d'amélioration de la co-conception pour la recherche participative sur la neurodiversité sont proposées.

Inclusive research practice characterized by the involvement of neurodivergent people in meaningful roles has been described as a “requirement of excellence” in neurodiversity research. This report describes a co-design process in partnership with a Community Advisory Board undertaken to develop a research study involving neurotypical and neurodivergent students as participants. From the formation of the partnership with seven Community Advisory Board members to the outcomes of the co-design process, this report details the methods associated with each step, as well as the benefits and challenges collated in collaboration with members of the Community Advisory Board. Opportunities for improvement in co-design for participatory neurodiversity research are suggested.

Bibliographie citée par cette référence

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2 entrées de bibliographie citée n’ont pas pu être entièrement enrichies à partir des métadonnées DOI.
Crossref: introuvable (2)
  1. Brian D. Christens , Paul W. Speer (2015). Community Organizing: Practice, Research, and Policy Implications . Social Issues and Policy Review, 9(1), 193-222. Wiley.
    Type: Article DOI: 10.1111/sipr.12014 OpenAlex: https://openalex.org/W1500684261
    Crossref OpenAlex OpenCitations
  2. Andrea Armstrong , Emma G. Flynn , Karen Salt , Jo Briggs , Rachel Clarke , John Vines et al. (2023). Trust and temporality in participatory research . Qualitative Research, 23(4), 1000-1021. SAGE Publications.
    Type: Article DOI: 10.1177/14687941211065163 OpenAlex: https://openalex.org/W4206420948
    Crossref OpenAlex OpenCitations
  3. Yvonne A. Joosten , Tiffany L. Israel , Amy Head , Yolanda Vaughn , Victoria Villalta Gil , Charles Mouton et al. (2018). Enhancing translational researchers’ ability to collaborate with community stakeholders: Lessons from the Community Engagement Studio . Journal of Clinical and Translational Science, 2(4), 201-207. Cambridge University Press (CUP).
    Type: Article DOI: 10.1017/cts.2018.323 OpenAlex: https://openalex.org/W2899246845
    Crossref OpenAlex OpenCitations
  4. Sónia Dias , Ana Gama (2014). [Community-based participatory research in public health: potentials and challenges]. PubMed, 35(2), 150-4.
    Type: Autre OpenAlex: https://openalex.org/W1676217214
    Crossref OpenAlex
  5. Jarg Bergold , Stefan Thomas (2012). Partizipative Forschungsmethoden: Ein methodischer Ansatz in Bewegung . Forum: Qualitative Social Research (Freie Universität Berlin), 13, 191. Forum Qualitative Sozialforschung / Forum: Qualitative Social Research.
    Type: Article DOI: 10.17169/fqs-13.1.1801 OpenAlex: https://openalex.org/W6943991353 Crossref: introuvable
    Crossref OpenAlex OpenCitations
  6. Susan D Newman , Jeannette O Andrews , Gayenell S Magwood , Carolyn Jenkins , Melissa J Cox , Deborah C Williamson (2011). Community advisory boards in community-based participatory research: a synthesis of best processes. PubMed, 8(3), A70-A70.
    Type: Article OpenAlex: https://openalex.org/W1921592843
    Crossref OpenAlex
  7. Ted L. Wattenberg (2005). Online focus groups used as an accessible participatory research method . Proceedings of the 7th international ACM SIGACCESS conference on Computers and accessibility, 180-181. ACM.
    Type: Autre DOI: 10.1145/1090785.1090819 OpenAlex: https://openalex.org/W1972911937
    Crossref OpenAlex OpenCitations
  8. Lynn Clouder , Mehmet Karakus , Alessia Cinotti , María Virginia Ferreyra , Genoveva Amador Fierros , Patricia Rojo (2020). Neurodiversity in higher education: a narrative synthesis . Higher Education, 80(4), 757-778. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10734-020-00513-6 OpenAlex: https://openalex.org/W3025382457
    Crossref OpenAlex OpenCitations
  9. Christine Makosky Daley , Aimee S. James , Ezekiel Ulrey , Stephanie Joseph , Angelia Talawyma , Won S. Choi et al. (2010). Using Focus Groups in Community-Based Participatory Research: Challenges and Resolutions . Qualitative Health Research, 20(5), 697-706. SAGE Publications.
    Type: Article DOI: 10.1177/1049732310361468 OpenAlex: https://openalex.org/W2101946037
    Crossref OpenAlex OpenCitations
  10. Keith Townsend , Adrian Wilkinson , John Burgess (2013). Filling the gaps: Patterns of formal and informal participation . Economic and Industrial Democracy, 34(2), 337-354. SAGE Publications.
    Type: Article DOI: 10.1177/0143831x12448442 OpenAlex: https://openalex.org/W1991698100
    Crossref OpenAlex OpenCitations
  11. Andrea Cornwall , Rachel Jewkes (1995). What is participatory research? Social Science & Medicine, 41(12), 1667-1676. Elsevier BV.
    Type: Article DOI: 10.1016/0277-9536(95)00127-s OpenAlex: https://openalex.org/W2140960626
    Crossref OpenAlex OpenCitations
  12. Lisa M. Vaughn , Crystal Whetstone , Alicia Boards , Melida D. Busch , Maria Magnusson , Sylvia Määttä (2018). Partnering with insiders: A review of peer models across community-engaged research, education and social care . Health & Social Care in the Community, 26(6), 769-786. Wiley.
    Type: Article DOI: 10.1111/hsc.12562 OpenAlex: https://openalex.org/W2790890546
    Crossref OpenAlex OpenCitations
  13. R. D. Lasker (2003). Broadening Participation in Community Problem Solving: a Multidisciplinary Model to Support Collaborative Practice and Research . Journal of Urban Health: Bulletin of the New York Academy of Medicine, 80(1), 14-60. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1093/jurban/jtg014 OpenAlex: https://openalex.org/W2080171783
    Crossref OpenAlex OpenCitations
  15. Alan Jurgens (2020). Neurodiversity in a neurotypical world . Dans Neurodiversity Studies (pp. 73-88). Routledge.
    Type: Chapitre de livre DOI: 10.4324/9780429322297-8 OpenAlex: https://openalex.org/W3033020954
    Crossref OpenAlex OpenCitations
  16. Laura Crane , Fern Adams , Georgia Harper , Jack Welch , Elizabeth Pellicano (2019). ‘Something needs to change’: Mental health experiences of young autistic adults in England . Autism, 23(2), 477-493. SAGE Publications.
    Type: Article DOI: 10.1177/1362361318757048 OpenAlex: https://openalex.org/W2787370458
    Crossref OpenAlex OpenCitations
  17. Blandine French , D. Daley , E. Perez Vallejos , K. Sayal , C. L. Hall (2020). Development and evaluation of an online education tool on attention deficit hyperactivity disorder for general practitioners: the important contribution of co-production . BMC Family Practice, 21(1), 224-224. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1186/s12875-020-01289-5 OpenAlex: https://openalex.org/W3096870960
    Crossref OpenAlex OpenCitations
  18. Jenny Kitzinger (1995). Qualitative Research: Introducing focus groups . BMJ, 311(7000), 299-302. BMJ.
    Type: Article DOI: 10.1136/bmj.311.7000.299 OpenAlex: https://openalex.org/W2104971230
    Crossref OpenAlex OpenCitations
  19. Patricia Gayá Wicks , Peter Reason (2009). Initiating action research . Action Research, 7(3), 243-262. SAGE Publications.
    Type: Article DOI: 10.1177/1476750309336715 OpenAlex: https://openalex.org/W2171273454
    Crossref OpenAlex OpenCitations
  20. Nancy Doyle (2020). Neurodiversity at work: a biopsychosocial model and the impact on working adults . British Medical Bulletin, 135(1), 108-125. Oxford University Press (OUP).
    Type: Article DOI: 10.1093/bmb/ldaa021 OpenAlex: https://openalex.org/W3091645723
    Crossref OpenAlex OpenCitations
  21. Georgia Pavlopoulou (2020). A Good Night’s Sleep: Learning About Sleep From Autistic Adolescents’ Personal Accounts . Frontiers in Psychology, 11, 583868-583868. Frontiers Media SA.
    Type: Article DOI: 10.3389/fpsyg.2020.583868 OpenAlex: https://openalex.org/W3115088354
    Crossref OpenAlex OpenCitations
  22. Stephanie R. Duea , Emily B. Zimmerman , Lisa M. Vaughn , Sónia Dias , Janet Harris (2022). A Guide to Selecting Participatory Research Methods Based on Project and Partnership Goals . Dans Journal of Participatory Research Methods (pp. 32605). Specialty Publications.
    Type: Chapitre de livre DOI: 10.35844/001c.32605 OpenAlex: https://openalex.org/W4281386095
    Crossref OpenAlex OpenCitations
  23. Manju Gundumogula (2020). Importance of Focus Groups in Qualitative Research . The International Journal of Humanities & Social Studies, 8(11), 299. International Journal of Innovative Research & Development (GlobeEdu).
    Type: Article DOI: 10.24940/theijhss/2020/v8/i11/hs2011-082 OpenAlex: https://openalex.org/W3126621099
    Crossref OpenAlex OpenCitations
  24. Tobias O.Nyumba , Kerrie Wilson , Christina J. Derrick , Nibedita Mukherjee (2018). The use of focus group discussion methodology: Insights from two decades of application in conservation . Methods in Ecology and Evolution, 9(1), 20-32. Wiley.
    Type: Article DOI: 10.1111/2041-210x.12860 OpenAlex: https://openalex.org/W2782625861
    Crossref OpenAlex OpenCitations
  26. Thomas Godfrey-Faussett (2022). Participatory Research and the Ethics of Anonymisation . Education Sciences, 12(4), 260. MDPI AG.
    Type: Article DOI: 10.3390/educsci12040260 OpenAlex: https://openalex.org/W4225824588
    Crossref OpenAlex OpenCitations
  27. Gerrit Ian van Schalkwyk (2018). At the Intersection of Neurodiversity and Gender Diversity . Journal of Autism and Developmental Disorders, 48(12), 3973-3973. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-018-3735-2 OpenAlex: https://openalex.org/W2892057601
    Crossref OpenAlex OpenCitations
  28. Amal Hussein (2021). A Participatory Research Approach to Understanding the Experiences of Black, Asian and Minority Ethnic (BAME) Autistic Young People . UEL Research Repository (University of East London). University of East London.
    Type: Article DOI: 10.15123/uel.89vw6 OpenAlex: https://openalex.org/W3199251325 Crossref: introuvable
    Crossref OpenAlex
  29. Lisa M. Vaughn , Farrah Jacquez (2020). Participatory Research Methods – Choice Points in the Research Process . Journal of Participatory Research Methods, 1(1), 13244. Specialty Publications.
    Type: Article DOI: 10.35844/001c.13244 OpenAlex: https://openalex.org/W3044418675
    Crossref OpenAlex OpenCitations
  30. R.A. Krueger (2014). Focus groups: A practical guide for applied research .
    Type: Autre
    Crossref
  31. Nind, Melanie (2009). Conducting qualitative research with people with learning, communication and other disabilities: methodological challenges .
    Type: Livre OpenAlex: https://openalex.org/W7008616401
    Crossref OpenAlex
  32. Francisco M. Olmos-Vega , Renée E. Stalmeijer , Lara Varpio , Renate Kahlke (2023). A practical guide to reflexivity in qualitative research: AMEE Guide No. 149 . Medical Teacher, 45(3), 241-251. Informa UK Limited.
    Type: Article DOI: 10.1080/0142159x.2022.2057287 OpenAlex: https://openalex.org/W4225944184
    Crossref OpenAlex OpenCitations
  33. Lynn Rochester , Camille Carroll (2022). Implications of research that excludes under-served populations . Nature Reviews Neurology, 18(8), 449-450. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1038/s41582-022-00688-9 OpenAlex: https://openalex.org/W4283703261
    Crossref OpenAlex OpenCitations
  34. M. Tarpey (2015). INVOLVE: What is public involvement in research?
    Type: Autre
    Crossref
  35. Verity Ward , Sarah Parsons , Hanna Kovshoff , Ben Crump (2022). Co-creation of Research and Design During a Coding Club With Autistic Students Using Multimodal Participatory Methods and Analysis . Frontiers in Education, 7. Frontiers Media SA.
    Type: Article DOI: 10.3389/feduc.2022.864362 OpenAlex: https://openalex.org/W4280571317
    Crossref OpenAlex OpenCitations