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

Elizabeth Pellicano*, Adam Dinsmore, Tony Charman

*Corresponding author for this work

Research output: Contribution to journalArticlepeer-review

35 Citations (Scopus)
9 Downloads (Pure)

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.

Original languageEnglish
Article numbere109946
Number of pages11
JournalPLoS ONE
Volume9
Issue number10
DOIs
Publication statusPublished - 10 Oct 2014
Externally publishedYes

Bibliographical note

Copyright the Author(s) 2014. Version archived for private and non-commercial use with the permission of the author/s and according to publisher conditions. For further rights please contact the publisher.

Fingerprint Dive into the research topics of 'Views on researcher-community engagement in autism research in the United Kingdom: a mixed-methods study'. Together they form a unique fingerprint.

Cite this