社区参与的自闭症研究中的不平等:社区成员的观点
概括
自闭症患者及其社区希望包容性自闭症研究和参与. 解决参与差距需要共享决策和可信赖的平台,以便在研究中代表多元化.
科学领域:
- 神经科学是一个神经科学.
- 公共卫生 公共卫生
- 社会科学 社会科学 社会科学
背景情况:
- 自闭症个体历来在参与研究方面面临排斥和障碍.
- 社区参与障碍导致自闭症社区成员的孤立和不信任.
- 关于研究机会的有限信息加剧了这些问题.
研究的目的:
- 在自闭症研究中识别社区参与研究 (CEnR) 的差距.
- 检查自闭症成年人,护理人员和服务提供商对CENR的观点.
- 收集改善自闭症研究优先事项和参与的建议.
主要方法:
- 与53名自闭症利益相关者进行了定性叙事调查.
- 使用16项半结构仪器收集的数据.
- 焦点组 (n=6) 和个人访谈 (n=47) 截稿的专题编码.
主要成果:
- 参与者指出,自闭症CenR和研究群体中缺乏多元化的代表性.
- 具有共享所有权和可信赖平台的包容性方法至关重要.
- 这种方法是制定有效和包容性自闭症研究策略的关键.
结论:
- 自闭症利益相关者重视研究的包容性,并热衷于参与.
- 个人可以做出自己的参与决策,有或没有支持.
- 对自闭症成年人的研究对于解决复杂的护理准入问题至关重要.
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