UCL Discovery
UCL home » Library Services » Electronic resources » UCL Discovery

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

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) , Article e109946. 10.1371/journal.pone.0109946. Green open access

[thumbnail of Pellicano et al. 2014b]
Preview
Text (Pellicano et al. 2014b)
Pellicano_et_al._2014b.pdf - Published Version

Download (880kB) | Preview

Abstract

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.

Type: Article
Title: Views on researcher-community engagement in autism research in the United Kingdom: A mixed-methods study
Open access status: An open access version is available from UCL Discovery
DOI: 10.1371/journal.pone.0109946
Publisher version: http://dx.doi.org/10.1371/journal.pone.0109946
Language: English
Additional information: © 2014 Pellicano et al. This is an open-access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.
Keywords: autism, research priorities, engagement, participants, community
UCL classification: UCL
UCL > Provost and Vice Provost Offices > School of Education
UCL > Provost and Vice Provost Offices > School of Education > UCL Institute of Education
UCL > Provost and Vice Provost Offices > School of Education > UCL Institute of Education > IOE - Social Research Institute
URI: https://discovery.ucl.ac.uk/id/eprint/1475286
Downloads since deposit
76Downloads
Download activity - last month
Download activity - last 12 months
Downloads by country - last 12 months

Archive Staff Only

View Item View Item