有意义的包容的机会:智力和发育残疾人的经验与研究的个人
Ally Dudley1, Tai Baker1, Canyon Hardesty1
1The Wyoming Institute for Disabilities, University of Wyoming, Laramie, WY, United States.
Frontiers in pediatrics
|February 13, 2025
概括
智力和发育障碍 (IDD) 的个人可以成为有价值的共同研究员,但面临着障碍. 创造包容性研究环境和提供支持是他们充分参与的关键.
科学领域:
- 健康差距 研究 研究 研究 研究
- 关于残疾人的研究.
- 基于社区的参与式研究
背景情况:
- 智力和发育障碍 (IDD) 患者在健康方面存在显著差异,特别是在农村地区.
- 尽管他们有独特的见解,但IDD患者经常被排除在研究过程中,以解决他们的健康挑战.
- 人们对IDD患者在作为共同研究员参与研究时所面临的经历和障碍缺乏了解.
研究的目的:
- 作为共同研究人员,探索IDD个人的生活经验.
- 确定障碍物和促进者,以纳入个人IDD在研究过程中.
- 收集IDD个体,他们的支持提供者和残疾研究人员对共同研究员角色的观点.
主要方法:
- 该研究采用了三个不同的参与者组的焦点小组:IDD患者,IDD患者的支持提供者和残疾研究人员.
- 数据收集涉及深入讨论,涵盖整个研究过程,从开始到完成.
- 两个独立的编码人员进行了主题分析,以确定收集的数据中的反复出现的模式和主题.
主要成果:
- 所有参与小组都认识到将IDD患者纳入共同研究人员的价值.
- 患有IDD的个体对研究表达了积极的看法,特别是当主题与个人相关时,但指出恐吓和需要支持.
- 支持提供者感到强大,并强调了IDD个体对研究的重大贡献.
- 残疾研究人员指出时间限制,资源有限和研究结构不灵活是包容的主要障碍,表达了与IDD个体合作的更多经验的需要.
结论:
- 广泛的兴趣存在于将IDD的个人作为共同研究人员,但仍然存在重大障碍.
- 建立欢迎和可访问的研究环境对于成功的包容性至关重要.
- 对研究人员的机构支持和培训是必要的,以促进包容的IDD研究实践.
- 评估IDD个体的专业知识,开发相关研究主题和吸引支持提供者等策略可以提高参与度.
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