Macquarie University, Australia.
Cooperative Research Centre for Living with Autism (Autism CRC), Australia.
Autism. 2021 Jan;25(1):148-163. doi: 10.1177/1362361320951696. Epub 2020 Aug 27.
means working together () with the community that is affected by research to make decisions about that research. Participatory research is common in some fields, but it is still rare in autism research. In this study, we wanted to find out how Australian autism researchers and community members feel about participatory research. We worked with an Autistic Advisory Group to design this study, understand the results and write this article. We asked 127 people, all working on research from the Cooperative Research Centre for Living with Autism, to complete an online survey about participatory research. The survey included some questions that were answered on rating scales, and some where participants wrote their own answers. Seventy-nine people (64 researchers and 15 community members) completed most or all of the survey. The rating scales showed that most participants (82%) supported moderate or extensive community engagement in research, and most participants (72%) thought there should be more community engagement in autism research. In general, the participants rated their experiences of participatory research positively. Using the participants' own written answers, we found four main ideas: (1) participatory research is important, but difficult; (2) many people do not fully understand what participatory research is; (3) academics and community members do not work together as = and (4) research systems are not designed for participatory research. Our results suggest that autism researchers and community members want to do more participatory research, but they might need training, support and funding to do participatory research well.
意味着与受研究影响的社区合作,就该研究做出决策。参与式研究在某些领域很常见,但在自闭症研究中仍然很少见。在这项研究中,我们想了解澳大利亚自闭症研究人员和社区成员对参与式研究的看法。我们与自闭症顾问小组合作设计了这项研究,以了解研究结果并撰写本文。我们要求来自自闭症合作研究中心的 127 人完成了一项关于参与式研究的在线调查,以了解他们的意见。调查包括一些在评分量表上回答的问题,以及一些参与者自己回答的问题。79 人(64 名研究人员和 15 名社区成员)完成了大部分或全部调查。评分量表显示,大多数参与者(82%)支持在研究中适度或广泛地让社区参与,大多数参与者(72%)认为自闭症研究应该有更多的社区参与。总的来说,参与者对参与式研究的体验评价较高。通过参与者自己的书面回答,我们发现了四个主要观点:(1)参与式研究很重要,但很困难;(2)许多人并不完全理解参与式研究是什么;(3)学术界和社区成员没有合作;(4)研究系统不是为参与式研究设计的。我们的研究结果表明,自闭症研究人员和社区成员希望进行更多的参与式研究,但他们可能需要培训、支持和资金来做好参与式研究。