Jivraj Jamil, Sacrey Lori-Ann, Newton Amanda, Nicholas David, Zwaigenbaum Lonnie
University of Alberta, Canada
University of Alberta, Canada.
Autism. 2014 Oct;18(7):782-93. doi: 10.1177/1362361314539858. Epub 2014 Jul 2.
Participatory research aims to increase the relevance and broaden the implementation of health research by involving those affected by the outcomes of health studies. Few studies within the field of neurodevelopmental disorders, particularly autism spectrum disorders, have involved autistic individuals as partners. This study sought to identify and characterize published participatory research partnerships between researchers and individuals with autism spectrum disorder or other neurodevelopmental disorders and examine the influence of participatory research partnerships on the research process and reported study outcomes. A search of databases and review of gray literature identified seven studies that described participatory research partnerships between academic researchers and individuals with autism spectrum disorder or other neurodevelopmental disorders. A comparative analysis of the studies revealed two key themes: (1) variations in the participatory research design and (2) limitations during the reporting of the depth of the partner's involvement. Both themes potentially limit the application and generalizability of the findings. The results of the review are discussed in relation to the use of evaluative frameworks for such participatory research studies to determine the potential benefits of participatory research partnerships within the neurodevelopmental and autism spectrum disorder populations.
参与式研究旨在通过让受健康研究结果影响的人群参与进来，提高健康研究的相关性并扩大其实施范围。在神经发育障碍领域，特别是自闭症谱系障碍领域，很少有研究让自闭症患者作为合作伙伴参与其中。本研究旨在识别并描述已发表的研究人员与自闭症谱系障碍或其他神经发育障碍患者之间的参与式研究合作关系，并考察参与式研究合作关系对研究过程及所报告的研究结果的影响。通过检索数据库和查阅灰色文献，确定了七项描述学术研究人员与自闭症谱系障碍或其他神经发育障碍患者之间参与式研究合作关系的研究。对这些研究的比较分析揭示了两个关键主题：（1）参与式研究设计的差异；（2）在报告合作伙伴参与深度方面存在的局限性。这两个主题都可能限制研究结果的应用和普遍性。结合用于此类参与式研究的评估框架的使用，讨论了该综述的结果，以确定参与式研究合作关系在神经发育障碍和自闭症谱系障碍人群中的潜在益处。
