智力和发育残疾人的护理人员的创新基于网络的未来规划和福祉:实用随机对照试验的协议
Caren Steinway1,2, Charmaine Wright3, Silvia Kwak1
1Northwell Health, New Hyde Park, NY, United States.
JMIR research protocols
|October 1, 2025
概括
本研究评估了一种基于网络的工具,以帮助智力和发育障碍 (IDD) 患者的家庭照顾者进行长期护理计划. 目标是减少护理人员的负担,提高福祉.
科学领域:
- 关于残疾人的研究.
- 老年学是指老年学的学科.
- 医疗保健服务研究 医疗服务研究
背景情况:
- 数以百万计的智力和发育障碍 (IDD) 患者依赖家庭护理人员,其中许多人超过60岁.
- 患有IDD的人因有限的可访问资源而面临更高的死亡率和发病率.
- 护理人员往往缺乏对长期护理 (LTC) 计划的信息和支持.
研究的目的:
- 评估"我们的生活地图"基于网络的LTC规划工具的有效性.
- 将该工具与注意力控制网站进行比较.
- 评估对护理人员负担,福利和IDD患者未来规划的影响.
主要方法:
- 一个全国性的多站点随机对照试验,涉及1050名家庭护理人员.
- 随机分配到我们的生命地图工具或健康促进网站.
- 使用混合效应模型评估基线和1,6和18个月的初级结果.
主要成果:
- 研究于2022年7月获得资金,IRB批准于2023年8月,注册于2023年12月.
- 招聘开始于2023年12月,结束于2025年12月.
- 初级结果分析将在最终的后续调查完成后开始.
结论:
- 在解决残疾人及其照顾者的健康差异方面,LTC规划至关重要.
- 一个创新的,可访问的LTC规划工具可以提高生活质量,减少护理人员的负担.
- 这项研究解决了对IDD患者终身支持资源的严重缺口.
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