关于自闭症和非自闭症社区成员参与自闭症研究的混合方法研究
Sarah L Curtiss1, Sarah Tillman2, Majd Subih3
1University of Delaware, USA.
概括
自闭症研究人员报告说,参与式研究策略的使用率很低,障碍很小,对其重要性的认可也很小. 采访揭示了最佳实践和内幕专业知识在自闭症研究中的价值.
科学领域:
- 自闭症研究 自闭症研究
- 基于社区的参与式研究
- 社会科学 社会科学 社会科学
背景情况:
- 参与式研究对于推动自闭症倡导者的议程至关重要.
- 关于自闭症研究人员对参与式研究的态度的理解有限.
- 社区成员,包括自闭症患者,在研究过程中成为合作伙伴.
研究的目的:
- 确定自闭症研究人员关于参与性研究的态度和做法.
- 探索参与式自闭症研究中的障碍和最佳实践.
- 了解内部专业知识和语言使用在自闭症研究中的作用.
主要方法:
- 混合方法研究涉及215名调查受访者和21名受访者.
- 参与者是已发表的自闭症研究论文的对应作者.
- 收集关于参与策略,障碍,态度和语言使用的数据.
主要成果:
- 报告说,参与式策略的比率相对较低.
- 发现对参与式研究的重要性的认可程度适度.
- 采访突出了最佳实践,障碍和参与式研究的变革性影响,包括内幕研究和身份优先语言的价值.
结论:
- 目前参与式自闭症研究率相对较低.
- 参与性研究存在障碍,但可以克服.
- 参与式研究,特别是内幕专业知识,对自闭症研究具有变革潜力,并强调尊重语言使用.
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