推进智力和发育障碍的包容性研究:建立社区和支持参与
Karrie A Shogren1, Brad Linnenkamp1, Rebecca Townsend1
1Karrie A. Shogren, Brad Linnenkamp, Rebecca Townsend, Ben Edwards, Lindsay Rentschler, Ashley Taconet, Claire Stelter, Ryan Henley, Kaela Bright, Lisa Hildebrandt, Evan Dean, Roxanne Loyless, and Sean Swindler, Kansas University Center on Developmental Disabilities.
Intellectual and developmental disabilities
|November 23, 2025
概括
智力和发育障碍的人在研究中面临排斥. 需要进行系统性改变,以便将它们纳入所有研究阶段,从规划到传播.
科学领域:
- 关于残疾人的研究.
- 研究伦理学研究伦理学
- 健康 公平 卫生 公平
背景情况:
- 智力和发育障碍 (IDD) 的人经常被排除在参与研究和开发之外.
- 倡导包容性研究的倡导已经增长,但实际实施仍然有限.
- 系统性障碍阻碍了IDD个体在研究生命周期中的公平纳入.
研究的目的:
- 描述研究小组实施的系统性变化,以促进IDD患者的包容性.
- 授权IDD个体了解和参与研究过程.
- 确定正在进行的努力和战略,以推进包容性研究的系统变革.
主要方法:
- 在研究小组内实施的系统变化的定性描述.
- 专注于授权和支持IDD个体参与研究的战略.
- 分析正在进行的工作和更广泛的系统进步的潜在途径.
主要成果:
- 详细介绍了为包容性研究创造系统性变革所采取的具体行动.
- 该论文强调了授权和支持提供给IDD的个人.
- 概述了正在进行的工作和系统变革的未来方向.
结论:
- 系统性变化对于公平地将IDD患者纳入研究至关重要.
- 赋权和支持机制是促进参与的关键.
- 持续努力是必要的,以推进包容性研究实践和克服现有的障碍.
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