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...

Descripción completa

Guardado en:

Detalles Bibliográficos
Autores principales:	Elizabeth Pellicano, Adam Dinsmore, Tony Charman
Formato:	article
Lenguaje:	EN
Publicado:	Public Library of Science (PLoS) 2014
Materias:	Medicine R Science Q
Acceso en línea:	https://doaj.org/article/813bfd30f66047329297363b475d5bce
Etiquetas:	Agregar Etiqueta Sin Etiquetas, Sea el primero en etiquetar este registro!

id	oai:doaj.org-article:813bfd30f66047329297363b475d5bce
record_format	dspace
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
work_keys_str_mv	AT elizabethpellicano viewsonresearchercommunityengagementinautismresearchintheunitedkingdomamixedmethodsstudy AT adamdinsmore viewsonresearchercommunityengagementinautismresearchintheunitedkingdomamixedmethodsstudy AT tonycharman viewsonresearchercommunityengagementinautismresearchintheunitedkingdomamixedmethodsstudy
_version_	1718414351524691968

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

Ejemplares similares