Views on Researcher-Community Engagement in Autism Research in the United Kingdom: A Mixed-Methods Study
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{"title"=>"Views on researcher-community engagement in autism research in the United Kingdom: A mixed-methods study", "type"=>"journal", "authors"=>[{"first_name"=>"Elizabeth", "last_name"=>"Pellicano", "scopus_author_id"=>"6507658484"}, {"first_name"=>"Adam", "last_name"=>"Dinsmore", "scopus_author_id"=>"56365668800"}, {"first_name"=>"Tony", "last_name"=>"Charman", "scopus_author_id"=>"7006913774"}], "year"=>2014, "source"=>"PLoS ONE", "identifiers"=>{"issn"=>"19326203", "scopus"=>"2-s2.0-84907854744", "sgr"=>"84907854744", "pui"=>"600125483", "isbn"=>"1932-6203 (Electronic)\\r1932-6203 (Linking)", "pmid"=>"25303222", "doi"=>"10.1371/journal.pone.0109946"}, "id"=>"96326ee0-41cf-303c-9fba-d05e3cff1b9d", "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", "link"=>"http://www.mendeley.com/research/views-researchercommunity-engagement-autism-research-united-kingdom-mixedmethods-study", "reader_count"=>73, "reader_count_by_academic_status"=>{"Unspecified"=>2, "Professor > Associate Professor"=>1, "Librarian"=>1, "Researcher"=>10, "Student > Doctoral Student"=>4, "Student > Ph. D. Student"=>21, "Student > Postgraduate"=>4, "Other"=>7, "Student > Master"=>10, "Student > Bachelor"=>8, "Lecturer"=>2, "Professor"=>3}, "reader_count_by_user_role"=>{"Unspecified"=>2, "Professor > Associate Professor"=>1, "Librarian"=>1, "Researcher"=>10, "Student > Doctoral Student"=>4, "Student > Ph. D. Student"=>21, "Student > Postgraduate"=>4, "Other"=>7, "Student > Master"=>10, "Student > Bachelor"=>8, "Lecturer"=>2, "Professor"=>3}, "reader_count_by_subject_area"=>{"Unspecified"=>3, "Agricultural and Biological Sciences"=>1, "Arts and Humanities"=>2, "Computer Science"=>3, "Earth and Planetary Sciences"=>1, "Engineering"=>1, "Environmental Science"=>1, "Nursing and Health Professions"=>6, "Biochemistry, Genetics and Molecular Biology"=>1, "Medicine and Dentistry"=>5, "Design"=>1, "Neuroscience"=>2, "Psychology"=>28, "Social Sciences"=>16, "Linguistics"=>2}, "reader_count_by_subdiscipline"=>{"Medicine and Dentistry"=>{"Medicine and Dentistry"=>5}, "Social Sciences"=>{"Social Sciences"=>16}, "Psychology"=>{"Psychology"=>28}, "Unspecified"=>{"Unspecified"=>3}, "Environmental Science"=>{"Environmental Science"=>1}, "Arts and Humanities"=>{"Arts and Humanities"=>2}, "Design"=>{"Design"=>1}, "Engineering"=>{"Engineering"=>1}, "Neuroscience"=>{"Neuroscience"=>2}, "Earth and Planetary Sciences"=>{"Earth and Planetary Sciences"=>1}, "Agricultural and Biological Sciences"=>{"Agricultural and Biological Sciences"=>1}, "Computer Science"=>{"Computer Science"=>3}, "Nursing and Health Professions"=>{"Nursing and Health Professions"=>6}, "Linguistics"=>{"Linguistics"=>2}, "Biochemistry, Genetics and Molecular Biology"=>{"Biochemistry, Genetics and Molecular Biology"=>1}}, "reader_count_by_country"=>{"United States"=>3, "United Kingdom"=>2, "Spain"=>1}, "group_count"=>4}

Scopus | Further Information

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Figshare

  • {"files"=>["https://ndownloader.figshare.com/files/1713859"], "description"=>"<p>Note: Lower values reflect reduced frequency of involvement in research.</p><p>Respondents' mean frequency ratings for their experiences of each type of researcher-community engagement.</p>", "links"=>[], "tags"=>["Community Engagement", "UK autism research", "community members"], "article_id"=>1201152, "categories"=>["Biological Sciences", "Science Policy"], "users"=>["Elizabeth Pellicano", "Adam Dinsmore", "Tony Charman"], "doi"=>"https://dx.doi.org/10.1371/journal.pone.0109946.t002", "stats"=>{"downloads"=>1, "page_views"=>10, "likes"=>0}, "figshare_url"=>"https://figshare.com/articles/_Respondents_mean_frequency_ratings_for_their_experiences_of_each_type_of_researcher_community_engagement_/1201152", "title"=>"Respondents' mean frequency ratings for their experiences of each type of researcher-community engagement.", "pos_in_sequence"=>0, "defined_type"=>3, "published_date"=>"2014-10-10 03:48:47"}
  • {"files"=>["https://ndownloader.figshare.com/files/1713860"], "description"=>"<p>Themes identified from open question in online questionnaire by autism researchers (n = 63).</p>", "links"=>[], "tags"=>["Community Engagement", "UK autism research", "community members"], "article_id"=>1201153, "categories"=>["Biological Sciences", "Science Policy"], "users"=>["Elizabeth Pellicano", "Adam Dinsmore", "Tony Charman"], "doi"=>"https://dx.doi.org/10.1371/journal.pone.0109946.t003", "stats"=>{"downloads"=>1, "page_views"=>12, "likes"=>0}, "figshare_url"=>"https://figshare.com/articles/_Themes_identified_from_open_question_in_online_questionnaire_by_autism_researchers_n_8202_8202_63_/1201153", "title"=>"Themes identified from open question in online questionnaire by autism researchers (n = 63).", "pos_in_sequence"=>0, "defined_type"=>3, "published_date"=>"2014-10-10 03:48:47"}
  • {"files"=>["https://ndownloader.figshare.com/files/1713861"], "description"=>"<p>Themes identified from open question in online questionnaire by autistic adults (n = 94), immediate family members (n = 476) and practitioners (n = 219).</p>", "links"=>[], "tags"=>["Community Engagement", "UK autism research", "community members"], "article_id"=>1201154, "categories"=>["Biological Sciences", "Science Policy"], "users"=>["Elizabeth Pellicano", "Adam Dinsmore", "Tony Charman"], "doi"=>"https://dx.doi.org/10.1371/journal.pone.0109946.t004", "stats"=>{"downloads"=>0, "page_views"=>16, "likes"=>0}, "figshare_url"=>"https://figshare.com/articles/_Themes_identified_from_open_question_in_online_questionnaire_by_autistic_adults_n_8202_8202_94_immediate_family_members_n_8202_8202_476_and_practitioners_n_8202_8202_219_/1201154", "title"=>"Themes identified from open question in online questionnaire by autistic adults (n = 94), immediate family members (n = 476) and practitioners (n = 219).", "pos_in_sequence"=>0, "defined_type"=>3, "published_date"=>"2014-10-10 03:48:47"}
  • {"files"=>["https://ndownloader.figshare.com/files/1713856"], "description"=>"<p>Researchers' (A) and community members' (B) perspectives on involvement in research: themes and subthemes.</p>", "links"=>[], "tags"=>["Community Engagement", "UK autism research", "community members"], "article_id"=>1201149, "categories"=>["Biological Sciences", "Science Policy"], "users"=>["Elizabeth Pellicano", "Adam Dinsmore", "Tony Charman"], "doi"=>"https://dx.doi.org/10.1371/journal.pone.0109946.g001", "stats"=>{"downloads"=>1, "page_views"=>8, "likes"=>0}, "figshare_url"=>"https://figshare.com/articles/_Researchers_A_and_community_members_B_perspectives_on_involvement_in_research_themes_and_subthemes_/1201149", "title"=>"Researchers' (A) and community members' (B) perspectives on involvement in research: themes and subthemes.", "pos_in_sequence"=>0, "defined_type"=>1, "published_date"=>"2014-10-10 03:48:47"}
  • {"files"=>["https://ndownloader.figshare.com/files/1713857"], "description"=>"<p>The proportion of responses for each stakeholder group with regards to their degree of satisfaction with community involvement in research.</p>", "links"=>[], "tags"=>["Community Engagement", "UK autism research", "community members"], "article_id"=>1201150, "categories"=>["Biological Sciences", "Science Policy"], "users"=>["Elizabeth Pellicano", "Adam Dinsmore", "Tony Charman"], "doi"=>"https://dx.doi.org/10.1371/journal.pone.0109946.g002", "stats"=>{"downloads"=>4, "page_views"=>19, "likes"=>0}, "figshare_url"=>"https://figshare.com/articles/_The_proportion_of_responses_for_each_stakeholder_group_with_regards_to_their_degree_of_satisfaction_with_community_involvement_in_research_/1201150", "title"=>"The proportion of responses for each stakeholder group with regards to their degree of satisfaction with community involvement in research.", "pos_in_sequence"=>0, "defined_type"=>1, "published_date"=>"2014-10-10 03:48:47"}
  • {"files"=>["https://ndownloader.figshare.com/files/1713858"], "description"=>"<p>Note: <sup>a</sup> The term “autistic person” is the preferred language of many people on the spectrum <a href=\"http://www.plosone.org/article/info:doi/10.1371/journal.pone.0109946#pone.0109946-Sinclair2\" target=\"_blank\">[50]</a>. In this paper, we use this term as well as person-first language to respect the wishes of all individuals on the spectrum.</p><p>Descriptives for respondents to the online survey for each of the four key stakeholder groups (total n = 1516).</p>", "links"=>[], "tags"=>["Community Engagement", "UK autism research", "community members"], "article_id"=>1201151, "categories"=>["Biological Sciences", "Science Policy"], "users"=>["Elizabeth Pellicano", "Adam Dinsmore", "Tony Charman"], "doi"=>"https://dx.doi.org/10.1371/journal.pone.0109946.t001", "stats"=>{"downloads"=>8, "page_views"=>15, "likes"=>0}, "figshare_url"=>"https://figshare.com/articles/_Descriptives_for_respondents_to_the_online_survey_for_each_of_the_four_key_stakeholder_groups_total_n_8202_8202_1516_/1201151", "title"=>"Descriptives for respondents to the online survey for each of the four key stakeholder groups (total n = 1516).", "pos_in_sequence"=>0, "defined_type"=>3, "published_date"=>"2014-10-10 03:48:47"}

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Relative Metric

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