Points de vue sur l'engagement entre chercheurs et communauté dans la recherche sur l'autisme au Royaume-Uni : une étude à méthodes mixtes

Titre original en anglais : Views on Researcher-Community Engagement in Autism Research in the United Kingdom: A Mixed-Methods Study

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Pellicano, E., Dinsmore, A., & Charman, T. (2014). Views on Researcher-Community Engagement in Autism Research in the United Kingdom: A Mixed-Methods Study. PLoS ONE, 9(10), e109946. https://doi.org/10.1371/journal.pone.0109946

Date de publication: 10/10/2014 Ajout dans AutiHub: 17/07/2026 Type: Article Langue de l’article: Anglais
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Auteurs

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  1. Elizabeth Pellicano
  2. Adam Dinsmore
  3. Tony Charman

Résumé

L'activité de recherche sur l'autisme a considérablement augmenté au cours de la dernière décennie. La recherche sur des moyens efficaces de répondre aux besoins immédiats des personnes autistes est toutefois moins avancée, tout comme les efforts visant à traduire la recherche fondamentale en prestation de services. Impliquer les membres de la communauté dans la recherche constitue une manière potentielle de réduire cet écart. Cette étude a donc examiné les points de vue sur l'implication de la communauté dans la recherche sur l'autisme, tant du point de vue des chercheurs en autisme que de celui des membres de la communauté, y compris des adultes autistes, des membres de la famille et des praticiens. Les résultats d'une étude par questionnaire à grande échelle (n = 1 516) ont montré que les chercheurs se perçoivent comme étant engagés auprès de la communauté de l'autisme, mais que les membres de la communauté, notamment les personnes autistes et leurs familles, ne partageaient pas ce point de vue. Des groupes de discussion et entretiens avec 72 participants ont en outre permis d'identifier les bénéfices potentiels et les difficultés persistantes liés à l'implication dans la recherche, en particulier concernant les perspectives distinctes des différentes parties prenantes. Les chercheurs étaient sceptiques quant aux possibilités d'augmenter de manière spectaculaire l'engagement communautaire, tandis que les membres de la communauté eux-mêmes ont évoqué les difficultés à comprendre pleinement le processus de recherche et à l'influencer. Nous suggérons que l'absence d'une approche commune de l'engagement communautaire dans la recherche sur l'autisme au Royaume-Uni constitue un obstacle majeur aux efforts translationnels.

There has been a substantial increase in research activity on autism during the past decade. Research into effective ways of responding to the immediate needs of autistic people is, however, less advanced, as are efforts at translating basic science research into service provision. Involving community members in research is one potential way of reducing this gap. This study therefore investigated the views of community involvement in autism research both from the perspectives of autism researchers and of community members, including autistic adults, family members and practitioners. Results from a large-scale questionnaire study (n = 1,516) showed that researchers perceive themselves to be engaged with the autism community but that community members, most notably autistic people and their families, did not share this view. Focus groups/interviews with 72 participants further identified the potential benefits and remaining challenges to involvement in research, especially regarding the distinct perspectives of different stakeholders. Researchers were skeptical about the possibilities of dramatically increasing community engagement, while community members themselves spoke about the challenges to fully understanding and influencing the research process. We suggest that the lack of a shared approach to community engagement in UK autism research represents a key roadblock to translational endeavors.

Bibliographie citée par cette référence

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Crossref: introuvable (1) · DataCite: introuvable (1)
  1. Elizabeth Pellicano , Adam Dinsmore , Tony Charman (2013). A future made together: shaping autism research in the UK . IOE EPrints.
    Type: Article OpenAlex: https://openalex.org/W150421255
    OpenAlex
  2. John PA Ioannidis (2004). Materializing research promises: opportunities, priorities and conflicts in translational medicine . Journal of Translational Medicine, 2(1), 5-5. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1186/1479-5876-2-5 OpenAlex: https://openalex.org/W2102396640
    Crossref OpenAlex OpenCitations
  3. S Oliver , L Clarke-Jones , R Rees , R Milne , P Buchanan , J Gabbay et al. (2004). Involving consumers in research and development agenda setting for the NHS: developing an evidence-based approach . Health Technology Assessment, 8(15), 1-148, III. National Institute for Health and Care Research.
    Type: Article DOI: 10.3310/hta8150 OpenAlex: https://openalex.org/W1966897685
    Crossref OpenAlex OpenCitations
  4. Elizabeth Pellicano , Ari Ne'eman * , Marc Stears (2011). Engaging, not excluding: A reply to Walsh et al.
    Type: Article OpenAlex: https://openalex.org/W1032903538
    OpenAlex
  5. Medical Research Council (2008) Research changes lives: Strategic Plan 2009–2014. London, MRC. Available: http://www.mrc.ac.uk/research/strategy/ . Accessed 2014 June 2.
    Type: Autre
    Crossref
  6. Mary E. Tinetti , Ethan Basch (2013). Patients' Responsibility to Participate in Decision Making and Research . JAMA, 309(22), 2331. American Medical Association (AMA).
    Type: Article DOI: 10.1001/jama.2013.5592 OpenAlex: https://openalex.org/W1970054402
    Crossref OpenAlex OpenCitations
  7. Elias Zerhouni (2003). The NIH Roadmap . Science, 302(5642), 63-72. American Association for the Advancement of Science (AAAS).
    Type: Article DOI: 10.1126/science.1091867 OpenAlex: https://openalex.org/W1496826797
    Crossref OpenAlex OpenCitations
  8. Cooksey D (2006) A Review of UK Health Research Funding. London: Stationery Office 2006.
    Type: Autre
    Crossref
  10. Bruno Bettelheim (1972). The Empty Fortress: Infantile Autism and the Birth of the Self .
    Type: Livre OpenAlex: https://openalex.org/W1561776083
    OpenAlex
  11. Thomas R. Insel (2009). Translating Scientific Opportunity Into Public Health Impact . Archives of General Psychiatry, 66(2), 128. American Medical Association (AMA).
    Type: Article DOI: 10.1001/archgenpsychiatry.2008.540 OpenAlex: https://openalex.org/W2111640236
    Crossref OpenAlex OpenCitations
  12. Gillian Baird , Emily Simonoff , Andrew Pickles , Susie Chandler , Tom Loucas , David Meldrum et al. (2006). Prevalence of disorders of the autism spectrum in a population cohort of children in South Thames: the Special Needs and Autism Project (SNAP) . The Lancet, 368(9531), 210-215. Elsevier BV.
    Type: Article DOI: 10.1016/s0140-6736(06)69041-7 OpenAlex: https://openalex.org/W2151524361
    Crossref OpenAlex OpenCitations
  14. Iain Chalmers (2004). Well informed uncertainties about the effects of treatments . BMJ, 328(7438), 475-476. BMJ.
    Type: Article DOI: 10.1136/bmj.328.7438.475 OpenAlex: https://openalex.org/W2047544265
    Crossref OpenAlex OpenCitations
  15. H. Goodare , S. Lockwood (1999). Involving patients in clinical research . BMJ, 319(7212), 724-725. BMJ.
    Type: Article DOI: 10.1136/bmj.319.7212.724 OpenAlex: https://openalex.org/W1593684616
    Crossref OpenAlex OpenCitations
  16. Éric Fombonne (2009). Epidemiology of Pervasive Developmental Disorders . Pediatric Research, 65(6), 591-598. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1203/pdr.0b013e31819e7203 OpenAlex: https://openalex.org/W2143333975
    Crossref OpenAlex OpenCitations
  17. Bec Hanley , Ann Truesdale , Andy King , Diana Elbourne , Iain Chalmers (2001). Involving consumers in designing, conducting, and interpreting randomised controlled trials: questionnaire survey . BMJ, 322(7285), 519-523. BMJ.
    Type: Article DOI: 10.1136/bmj.322.7285.519 OpenAlex: https://openalex.org/W1975573440
    Crossref OpenAlex OpenCitations
  18. Jim Sinclair * (2013). Why I dislike “person first” Language . Autonomy, the Critical Journal of Interdisciplinary Autism Studies, 1(2), 2.
    Type: Article OpenAlex: https://openalex.org/W1829568558
    OpenAlex
  20. Barbara A. Israel , Edith A. Parker , Zachary Rowe , Alicia Salvatore , Meredith Minkler , Jesús López et al. (2005). Community-Based Participatory Research: Lessons Learned from the Centers for Children’s Environmental Health and Disease Prevention Research . Environmental Health Perspectives, 113(10), 1463-1471. American Chemical Society (ACS).
    Type: Article DOI: 10.1289/ehp.7675 OpenAlex: https://openalex.org/W1968759223
    Crossref OpenAlex OpenCitations
  21. Moore K (2008). Disrupting science: social movements, American scientists, and the politics of the military, 1945-1975 . Choice Reviews Online, 45(12), 45-6753-45-6753. American Library Association.
    Type: Article DOI: 10.5860/choice.45-6753 OpenAlex: https://openalex.org/W1940560567
    OpenAlex
  22. Elizabeth Pellicano , Ari Ne'eman * , Marc Stears (2011). Engaging, not excluding: a response to Walsh et al. Nature Reviews Neuroscience, 12(12), 769-769. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1038/nrn3113-c1 OpenAlex: https://openalex.org/W1969906100
    Crossref OpenAlex OpenCitations
  23. Traolach Brugha , Sally McManus , John Bankart , Fiona Scott , Susan Purdon , Jane Smith et al. (2011). Epidemiology of Autism Spectrum Disorders in Adults in the Community in England . Archives of General Psychiatry, 68(5), 459. American Medical Association (AMA).
    Type: Article DOI: 10.1001/archgenpsychiatry.2011.38 OpenAlex: https://openalex.org/W2138372369
    Crossref OpenAlex OpenCitations
  24. Mayada Elsabbagh , Gauri Divan , Yun‐Joo Koh , Young Shin Kim , Shuaib Kauchali , Carlos Marcín et al. (2012). Global Prevalence of Autism and Other Pervasive Developmental Disorders . Autism Research, 5(3), 160-179. Wiley.
    Type: Article DOI: 10.1002/aur.239 OpenAlex: https://openalex.org/W2098251401
    Crossref OpenAlex OpenCitations
  26. Géraldine Dawson (2013). Dramatic Increase in Autism Prevalence Parallels Explosion of Research Into Its Biology and Causes . JAMA Psychiatry, 70(1), 9. American Medical Association (AMA).
    Type: Article DOI: 10.1001/jamapsychiatry.2013.488 OpenAlex: https://openalex.org/W2119714091
    Crossref OpenAlex
  27. Office of Autism Research Coordination, National Institute of Mental Health, on behalf of the Interagency Autism Coordinating Committee (IACC) (2010) IACC Autism Spectrum Disorder Research Portfolio Analysis Report 2012. Available: www.iacc.hhs.gov/portfolio-analysis/2010/index.shtml.
    Type: Autre
    Crossref
  28. Felicity Callard , Diana Rose , Til Wykes (2012). Close to the bench as well as at the bedside: involving service users in all phases of translational research . Health Expectations, 15(4), 389-400. Wiley.
    Type: Article DOI: 10.1111/j.1369-7625.2011.00681.x OpenAlex: https://openalex.org/W2099790691
    Crossref OpenAlex OpenCitations
  29. Pellicano E, Dinsmore A, Charman T (2013) A Future Made Together: Shaping Autism Research in the UK. London: Institute of Education.
    Type: Autre
    Crossref
  30. Sherry R. Arnstein (1969). A Ladder Of Citizen Participation . Journal of the American Institute of Planners, 35(4), 216-224. Informa UK Limited.
    Type: Article DOI: 10.1080/01944366908977225 OpenAlex: https://openalex.org/W2008251417
    Crossref OpenAlex OpenCitations
  31. Virginia Braun , Victoria Clarke (2006). Using thematic analysis in psychology . Qualitative Research in Psychology, 3(2), 77-101. Informa UK Limited.
    Type: Article DOI: 10.1191/1478088706qp063oa OpenAlex: https://openalex.org/W1979290264
    Crossref OpenAlex OpenCitations
  32. Karen Ward , Jordan S. Trigler (2001). Reflections on Participatory Action Research With People Who Have Developmental Disabilities . Mental Retardation, 39(1), 57-59.
    Type: Article DOI: 10.1352/0047-6765(2001)039 OpenAlex: https://openalex.org/W2135534960 Crossref: introuvable DataCite: introuvable
    Crossref OpenAlex OpenCitations
  33. Laurie E. Powers , Tracee Garner , Betsy Valnes , Peter Squire , Alison Turner , Todd Couture et al. (2007). Building a Successful Adult Life: Findings From Youth-Directed Research . Exceptionality, 15(1), 45-56. Informa UK Limited.
    Type: Article DOI: 10.1080/09362830709336925 OpenAlex: https://openalex.org/W1989661868
    Crossref OpenAlex OpenCitations
  34. Liza Gross (2009). A Broken Trust: Lessons from the Vaccine–Autism Wars . PLoS Biology, 7(5), e1000114. Public Library of Science (PLoS).
    Type: Article DOI: 10.1371/journal.pbio.1000114 OpenAlex: https://openalex.org/W2166419037
    Crossref OpenAlex OpenCitations
  35. Harold Pashler , Eric–Jan Wagenmakers (2012). Editors’ Introduction to the Special Section on Replicability in Psychological Science . Perspectives on Psychological Science, 7(6), 528-530. SAGE Publications.
    Type: Article DOI: 10.1177/1745691612465253 OpenAlex: https://openalex.org/W1993266153
    Crossref OpenAlex OpenCitations
  36. Keith Lloyd , Joanna White (2011). Democratizing clinical research . Nature, 474(7351), 277-278. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1038/474277a OpenAlex: https://openalex.org/W2032975517
    Crossref OpenAlex OpenCitations
  37. Maria Ham , Nicola Jones , Ian Mansell , Ruth Northway , Louise Price , Glayne Walker (2004). ‘I’m a researcher!’ Working together to gain ethical approval for a participatory research study . Journal of Learning Disabilities, 8(4), 397-407. SAGE Publications.
    Type: Article DOI: 10.1177/1469004704047507 OpenAlex: https://openalex.org/W2041528607
    Crossref OpenAlex OpenCitations
  39. Nick Partridge , John Scadding (2004). The James Lind Alliance: patients and clinicians should jointly identify their priorities for clinical trials . The Lancet, 364(9449), 1923-1924. Elsevier BV.
    Type: Article DOI: 10.1016/s0140-6736(04)17494-1 OpenAlex: https://openalex.org/W2015956617
    Crossref OpenAlex OpenCitations
  40. Syed M. Ahmed , Ann-Gel S. Palermo (2010). Community Engagement in Research: Frameworks for Education and Peer Review . American Journal of Public Health, 100(8), 1380-1387. American Public Health Association.
    Type: Article DOI: 10.2105/ajph.2009.178137 OpenAlex: https://openalex.org/W2089325366
    Crossref OpenAlex OpenCitations
  41. Anna Laura van der Laan , Marianne Boenink (2015). Beyond Bench and Bedside: Disentangling the Concept of Translational Research . Health Care Analysis, 23(1), 32-49. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10728-012-0236-x OpenAlex: https://openalex.org/W2000811679
    Crossref OpenAlex
  42. National Institute for Health Research (2012) INVOLVE Strategy 2012–2015: Putting people first in research. National Institute for Health Research. Available: http://www.invo.org.uk/wp-content/uploads/2012/04/INVOLVEStrategy2012-15.pdf . Accessed 2013 July 15.
    Type: Autre
    Crossref
  43. Bettelheim B (1967) The Empty Fortress: Infantile Autism and the Birth of the Self. New York: The Free Press.
    Type: Autre
    Crossref
  44. Paul R. Ward , Jill Thompson , Rosemary Barber , Christopher J. Armitage , Jonathan D. Boote , Cindy L. Cooper et al. (2010). Critical perspectives on ‘consumer involvement’ in health research . Journal of Sociology, 46(1), 63-82. SAGE Publications.
    Type: Article DOI: 10.1177/1440783309351771 OpenAlex: https://openalex.org/W2147355894
    Crossref OpenAlex OpenCitations
  45. Nancy Bagatell (2010). From Cure to Community: Transforming Notions of Autism . Ethos, 38(1), 33-55. Wiley.
    Type: Article DOI: 10.1111/j.1548-1352.2009.01080.x OpenAlex: https://openalex.org/W2085448344
    Crossref OpenAlex OpenCitations
  46. Dawson M (2004) The misbehavior of behaviourists. Available: http://www.sentex.net/~nexus23/naa_aba.html . Accessed 2013 Aug 2.
    Type: Autre
    Crossref
  47. Jonathan Quetzal Tritter , Alison McCallum (2006). The snakes and ladders of user involvement: Moving beyond Arnstein . Health Policy, 76(2), 156-168. Elsevier BV.
    Type: Article DOI: 10.1016/j.healthpol.2005.05.008 OpenAlex: https://openalex.org/W2161436779
    Crossref OpenAlex OpenCitations
  48. Sinclair J (1993) Don't mourn for us. First published in the Autism Network International newsletter, Our Voice, 1 1993. Available: http://www.jimsinclair.org/dontmourn.htm . Accessed 2010 Aug 5.
    Type: Autre
    Crossref
  49. Loretta Jones , Kenneth Wells (2007). Strategies for Academic and Clinician Engagement in Community-Participatory Partnered Research . JAMA, 297(4), 407. American Medical Association (AMA).
    Type: Article DOI: 10.1001/jama.297.4.407 OpenAlex: https://openalex.org/W2074448929
    Crossref OpenAlex OpenCitations
  51. Nick Black (2006). The Cooksey review of UK health research funding . BMJ, 333(7581), 1231-1232. BMJ.
    Type: Article DOI: 10.1136/bmj.39059.444120.80 OpenAlex: https://openalex.org/W2080361588
    OpenAlex
  52. Jill Thompson , Rosemary Barber , Paul R. Ward , Jonathan D. Boote , Cindy L. Cooper , Christopher J. Armitage et al. (2009). Health researchers’ attitudes towards public involvement in health research . Health Expectations, 12(2), 209-220. Wiley.
    Type: Article DOI: 10.1111/j.1369-7625.2009.00532.x OpenAlex: https://openalex.org/W2161157810
    Crossref OpenAlex OpenCitations
  53. Lambert R (2003) Lambert Review of Business-University Collaboration: Final Report. Her Majesty's Stationery Office 2003. Available: http://www.hm-treasury.gov.uk/media//EA556/lambert_review_final_450.pdf . Accessed 2013 July 15.
    Type: Autre
    Crossref
  54. Michael Yudell , Holly K Tabor , Géraldine Dawson , John Rossi , Craig Newschaffer , Working Group in Autism Risk Communication and Ethics (2013). Priorities for autism spectrum disorder risk communication and ethics . Autism, 17(6), 701-722. SAGE Publications.
    Type: Article DOI: 10.1177/1362361312453511 OpenAlex: https://openalex.org/W2138523364
    Crossref OpenAlex OpenCitations
  55. Marianne Boenink (2012). Debating the Desirability of New Biomedical Technologies: Lessons from the Introduction of Breast Cancer Screening in the Netherlands . Health Care Analysis, 20(1), 84-102. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10728-011-0173-0 OpenAlex: https://openalex.org/W2115265854
    OpenAlex
  56. Kelly Moore (2009). Disrupting Science . Princeton University Press.
    Type: Livre DOI: 10.1515/9781400823802 OpenAlex: https://openalex.org/W4255328322
    Crossref OpenAlex OpenCitations
  57. Zubaida Faridi , Jo Anne Grunbaum , Barbara Sajor Gray , Adele Franks , Eduardo Simoes (2007). Community-based participatory research: necessary next steps. PubMed, 4(3), A70-A70.
    Type: Article OpenAlex: https://openalex.org/W2143514332
    Crossref OpenAlex
  58. Richard G. Lambert (2003). Lambert Review of Business-University Collaboration: Final Report . SSRN Electronic Journal.
    Type: Prépublication OpenAlex: https://openalex.org/W2195822427
    OpenAlex
  59. Elizabeth Pellicano , Adam Dinsmore , Tony Charman (2014). What should autism research focus upon? Community views and priorities from the UK . IOE EPrints.
    Type: Article OpenAlex: https://openalex.org/W2293305607
    OpenAlex
  60. Gyda Marås Sindre (2017). Civic Engagement and Democracy in Post-Suharto Indonesia: A Review of Musrenbang, the Kecamatan Development Programme, and Labour Organising . PCD Journal, 4(1-2), 1. Universitas Gadjah Mada.
    Type: Article DOI: 10.22146/pcd.25766 OpenAlex: https://openalex.org/W2771594048
    OpenAlex
  61. Sinclair J (1999) Why I dislike “person first” language. Available: http://www.cafemom.com/journals/read/436505/ . Accessed 2013 Jan 19.
    Type: Autre
    Crossref
  62. BETTELHEI M , Donna Gelfand (1967). The Empty Fortress . The Journal of NERVOUS and MENTAL DISEASE, 144(4), 329. Ovid Technologies (Wolters Kluwer Health).
    Type: Article DOI: 10.1097/00005053-196704000-00012 OpenAlex: https://openalex.org/W3150120149
    OpenAlex
  63. Roger Evans (2014). National Institute for Health Research . Nursing Standard, 28(49), 32-32. RCN Publishing Ltd..
    Type: Article DOI: 10.7748/ns.28.49.32.s37 OpenAlex: https://openalex.org/W4245576698
    OpenAlex