"我们有很多东西可以提供":社区成员对自闭症研究的看法
Tori Haar1,2,3, Charlotte Brownlow2,4, Gabrielle Hall1,5
1Macquarie University, Australia.
概括
社区的贡献对于自闭症研究至关重要. 这项研究强调了需要包容性研究实践,尊重和重视自闭症患者及其家人,将重点从缺陷转移到系统性改进.
科学领域:
- 神经发育障碍 神经发育障碍
- 社会科学 社会科学 社会科学
- 研究方法研究方法研究方法学
背景情况:
- 自闭症研究正在不断发展,自闭症患者,活动家和研究人员越来越多地呼吁社区参与.
- 从历史上看,社区对自闭症研究优先事项和经验的看法一直被低估.
- 需要了解如何促进更具包容性和影响力的自闭症研究.
研究的目的:
- 重新检查现有数据,以了解社区成员对自闭症研究的看法和经验.
- 确定自闭症研究变革的关键领域,以更好地支持自闭症生活.
- 探索以社区为中心的方法在自闭症研究中的潜力.
主要方法:
- 从55个社区成员 (自闭症个体,家庭,专业人士) 的数据进行了定性再分析.
- 专注于了解社区优先事项和自闭症研究中的经验.
- 专题分析以确定对研究实践和成果的反复出现的观点.
主要成果:
- 强烈同意研究可以积极塑造自闭症者的生活.
- 显著的共识是,当前的自闭症研究需要实质性的改变.
- 主要建议包括从狭的,以赤字为基础的观点转向系统性改进和社区参与.
结论:
- 自闭症研究必须超越以缺陷为中心的模型,以解决系统性和社会因素.
- 纳入自闭症患者及其家属的声音和经验对于有影响力的研究至关重要.
- 自闭症社区的尊重,理解和重视的参与增强了研究潜力.
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