Views on researcher-community engagement in autism research in the United Kingdom: a mixed-methods study.
Views on researcher-community engagement in autism research in the United Kingdom: a mixed-methods study.
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DOI：
10.1371/journal.pone.0109946
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发表时间：
2014
期刊：
影响因子：
3.7
通讯作者：
Charman T
中科院分区：
文献类型：
--
作者：
Pellicano E;Dinsmore A;Charman T
在过去的十年里，关于自闭症的研究活动有了实质性的增加。然而，对有效应对自闭症患者迫切需要的方法的研究进展较慢，将基础科学研究转化为提供服务的努力也是如此。让社区成员参与研究是缩小这一差距的一种潜在方法。因此，本研究从自闭症研究者和社区成员（包括自闭症成人、家庭成员和从业人员）的角度考察了社区参与对自闭症研究的看法。一项大规模问卷调查的结果（n = 1516）显示，研究人员认为自己参与了自闭症社区，但社区成员，尤其是自闭症患者及其家人，并不认同这种观点。与72名参与者的焦点小组/访谈进一步确定了参与研究的潜在好处和仍然存在的挑战，特别是关于不同利益相关者的不同观点。研究人员对大幅增加社区参与的可能性持怀疑态度，而社区成员自己也谈到了充分理解和影响研究过程的挑战。我们认为，在英国自闭症研究中缺乏共享的社区参与方法，这是转化努力的关键障碍。
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.
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基于社区的参与性研究：从儿童环境健康和疾病预防研究中心汲取的教训。
影响因子：
10.4
作者：
Israel, Barbara A;Parker, Edith A;Rowe, Zachary;Salvatore, Alicia;Minkler, Meredith;Lopez, Jesus;Butz, Arlene;Mosley, Adrian;Coates, Lucretia;Lambert, George;Potito, Paul A;Brenner, Barbara;Rivera, Maribel;Romero, Harry;Thompson, Beti;Coronado, Gloria;Halstead, Sandy
通讯作者：
Halstead, Sandy
DOI：
10.1111/j.0963-7214.2005.00334.x
发表时间：
2005-04-01
影响因子：
7.2
作者：
Gernsbacher, MA;Dawson, M;Goldsmith, HH
通讯作者：
Goldsmith, HH
影响因子：
0.6
作者：
Bagatell, Nancy
通讯作者：
Bagatell, Nancy
DOI：
10.1080/01944366908977225
发表时间：
1969-01-01
期刊：
JOURNAL OF THE AMERICAN INSTITUTE OF PLANNERS
影响因子：
--
作者：
ARNSTEIN, SR
通讯作者：
ARNSTEIN, SR
影响因子：
4.7
作者：
Elsabbagh, Mayada;Divan, Gauri;Koh, Yun-Joo;Kim, Young Shin;Kauchali, Shuaib;Marcin, Carlos;Montiel-Nava, Cecilia;Patel, Vikram;Paula, Cristiane S.;Wang, Chongying;Yasamy, Mohammad Taghi;Fombonne, Eric
通讯作者：
Fombonne, Eric