Guidelines for conducting research studies with the autism community.
Guidelines for conducting research studies with the autism community.
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与自闭症社区进行研究的指南。
DOI：
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发表时间：
2019
期刊：
影响因子：
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通讯作者：
Daniel Poole
中科院分区：
文献类型：
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作者：
E. Gowen;Rachel Taylor;Thomas Bleazard;A. Greenstein;Peter Baimbridge;Daniel Poole
人们越来越意识到自闭症社区所表达的关切，即大多数研究并没有反映自闭症患者及其家庭的优先事项或需求。此外，许多自闭症患者报告说，他们感到无法影响研究，并希望更多地参与研究过程。我们的研究为研究人员在进行自闭症研究时提供了实用的指导方针，以增加研究人员和自闭症社区之间的参与，合作和信任。这些指南是基于焦点小组的产出和与22名自闭症成年人和8名自闭症儿童家长的访谈讨论，这些讨论是在研究网络Autism@Manchester和Salfordautism之间合作开展的一系列研讨会期间进行的，Salfordautism是一个由自闭症专业人士领导和管理的自闭症支持小组。该指南分为四个部分：（1）研究前注意事项，（2）受试者招募，（3）研究访视注意事项和（4）研究后注意事项。这些部分的结构反映了研究途径，使研究人员能够更容易地了解如何将建议纳入他们的研究。这些建议促进自闭症和研究界之间的有效沟通和平等伙伴关系，以便参与者在研究前、研究期间和研究后的需求得到考虑，并支持参与者在他们选择的层次上参与研究。希望通过对他们的工作实施透明和参与性的方法，研究人员可能能够减少自闭症社区成员对研究的一些不满，从而提高自闭症研究的标准。
There has been growing awareness of the concern expressed by autism communities that the majority of research conducted does not reflect the priorities or needs of autistic people and their families. Further, many autistic people report that they feel unable to influence research and desire greater involvement in the research process. Our research generated practical guidelines for researchers to consider when conducting autism research, in order to increase involvement, collaboration and trust between researchers and the autism community. These guidelines are based on the output of focus groups and interview discussions with twenty-two autistic adults and eight parents of autistic children, conducted during a series of workshops carried out as a collaboration between the research network Autism@Manchester and Salfordautism, an autism support group led and run by autistic professionals. The guidelines are organised into four sections: (1) pre-study considerations, (2) recruitment of participants, (3) study visit considerations and (4) post-study considerations. These sections are structured to reflect the research pathway, to allow researchers to understand more easily how to incorporate the recommendations into their research. The recommendations promote effective communication and equal partnerships between the autism and research communities, so that the needs of participants pre-research, during and post- research are taken into account, and so that participants are supported to become involved in research at the level they choose. It is hoped that by implementing transparent and participatory approaches to their work, researchers might be able to reduce some of the dissatisfaction that members of the autism community feel towards research, leading to higher standards in autism research.