研究人员将智力和发育残疾人 (DD) 纳入研究的障碍:翻译科学和I/DD项目领导人的见解
Karen Bonuck1, Patrick George2, Mark Harniss3
1Professor, Department of Family and Social Medicine, Co-Director University Center of Excellence in Developmental Disabilities, Albert Einstein College of Medicine-Montefiore Medical Center, Bronx, NY, USA.
Journal of clinical and translational science
|January 15, 2026
概括
研究人员 研究人员 研究人员
科学领域:
- 健康差异研究 研究健康差异研究
- 翻译科学是翻译的科学.
- 在研究中纳入残疾人.
背景情况:
- 在美国,残疾人占健康差异显著的人口.
- 尽管包括25%的成年人,与残疾相关的医学研究仅获得5%的资助.
- 之前关于包容障碍的研究一直是条件特定的,限制了更广泛的应用.
研究的目的:
- 检查在翻译研究中包括智力和发育障碍 (I/DD) 的人的感知障碍和促进因素.
- 确定各机构的共同障碍,为更广泛的残疾人纳入战略提供信息.
- 根据变革管理原则制定干预措施,以解决研究人员发现的障碍.
主要方法:
- 与来自临床和翻译科学奖 (CTSA) 计划和智力和发育障碍 (I/DD) 研究中心的25名领导人进行了半结构化采访.
- 利用协作主题编码来识别关键障碍和促进者.
- 根据Prosci ADKAR®模型开发了一项调查,以评估变革管理组件.
主要成果:
- 确定的主要主题包括态度障碍 (例如,同意能力假设),后勤挑战 (例如,住宿成本),健康差异问题和概括性问题.
- 排除I/DD患者的主要原因似乎是研究人员缺乏意识,误解和知识差距.
- 研究结果表明,障碍并非不可克服,而是需要有针对性的干预措施.
结论:
- 解决研究人员的意识,误解和知识差距对于增加残疾人参与研究至关重要.
- 为I/DD包容制定的策略可能对其他残疾人群体具有普遍适用性.
- 实施变革管理原则可以促进残疾人融入翻译研究.
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