Views on researcher-community engagement in autism research in the United Kingdom: a mixed-methods study.

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 communi...

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Autores principales: Elizabeth Pellicano, Adam Dinsmore, Tony Charman
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Lenguaje:EN
Publicado: Public Library of Science (PLoS) 2014
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Acceso en línea:https://doaj.org/article/813bfd30f66047329297363b475d5bce
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spelling oai:doaj.org-article:813bfd30f66047329297363b475d5bce2021-11-25T05:57:05ZViews on researcher-community engagement in autism research in the United Kingdom: a mixed-methods study.1932-620310.1371/journal.pone.0109946https://doaj.org/article/813bfd30f66047329297363b475d5bce2014-01-01T00:00:00Zhttps://doi.org/10.1371/journal.pone.0109946https://doaj.org/toc/1932-6203There 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.Elizabeth PellicanoAdam DinsmoreTony CharmanPublic Library of Science (PLoS)articleMedicineRScienceQENPLoS ONE, Vol 9, Iss 10, p e109946 (2014)
institution DOAJ
collection DOAJ
language EN
topic Medicine
R
Science
Q
spellingShingle Medicine
R
Science
Q
Elizabeth Pellicano
Adam Dinsmore
Tony Charman
Views on researcher-community engagement in autism research in the United Kingdom: a mixed-methods study.
description 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.
format article
author Elizabeth Pellicano
Adam Dinsmore
Tony Charman
author_facet Elizabeth Pellicano
Adam Dinsmore
Tony Charman
author_sort Elizabeth Pellicano
title Views on researcher-community engagement in autism research in the United Kingdom: a mixed-methods study.
title_short Views on researcher-community engagement in autism research in the United Kingdom: a mixed-methods study.
title_full Views on researcher-community engagement in autism research in the United Kingdom: a mixed-methods study.
title_fullStr Views on researcher-community engagement in autism research in the United Kingdom: a mixed-methods study.
title_full_unstemmed Views on researcher-community engagement in autism research in the United Kingdom: a mixed-methods study.
title_sort views on researcher-community engagement in autism research in the united kingdom: a mixed-methods study.
publisher Public Library of Science (PLoS)
publishDate 2014
url https://doaj.org/article/813bfd30f66047329297363b475d5bce
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AT adamdinsmore viewsonresearchercommunityengagementinautismresearchintheunitedkingdomamixedmethodsstudy
AT tonycharman viewsonresearchercommunityengagementinautismresearchintheunitedkingdomamixedmethodsstudy
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