通过集中自闭症声音来打击自闭症研究中的耻辱:定性研究的联合访谈指南
Elizabeth A Kaplan-Kahn1, Reid Caplan2
1Center for Autism Research, Children's Hospital of Philadelphia, Philadelphia, PA, United States.
Frontiers in psychiatry
|September 1, 2023
概括
在研究中将自闭症个体作为中心对于减少耻辱和提高研究有效性至关重要. 让自闭症同访者参与定性研究可以确保真实的代表性和更有意义的结论.
科学领域:
- 自闭症研究的研究.
- 定性研究方法 定性研究方法
- 参与式研究参与式研究
背景情况:
- 自闭症研究往往排除自闭症个体,延续耻辱,导致有偏见的方法.
- "没有我们就没有我们"的原则强调了需要自闭症患者在研究中的中心参与.
- 当前的研究实践可能会导致无效的结论,并积极伤害自闭症社区.
研究的目的:
- 倡导和强调参与式研究实践在自闭症研究中的好处.
- 概述与自闭症研究伙伴进行联合采访的实用方法.
- 为研究人员提供资源和灵感,以减少自闭症研究中的耻辱.
主要方法:
- 在定性研究中实施参与式研究实践.
- 让自闭症患者作为平等的合作伙伴参与研究过程.
- 在涉及自闭症参与者的定性研究中利用自闭症共同面试者.
主要成果:
- 参与式研究,特别是联合采访,可以减轻自闭症研究中的耻辱感.
- 涉及自闭症同访者增强了定性自闭症研究的有效性和伦理考虑.
- 这种方法促进了自闭症声音的更真实的表现和参与.
结论:
- 将自闭症个体作为平等的合作伙伴集中在研究中,对于减少耻辱是必不可少的.
- 同访模型为包容性定性自闭症研究提供了一种实用和有效的方法.
- 采用这些参与性实践可以为自闭症社区带来更有效,更道德,更有益的研究.
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