开发和试点一个悲伤的护理合作伙伴调查,以告知ALS支持性护理的质量改善
Kara E Bischoff1, Daniela Liera2, Janette Tang2
1Division of Palliative Medicine, Department of Medicine (K.E.B., E.C., S.Z.P.), University of California, San Francisco, California, USA.
Journal of pain and symptom management
|August 7, 2024
概括
开发并试行了一项针对患有骨髓缩侧面硬化症 (ALS) 患者的丧亲护理伙伴的新调查. 这个工具捕捉了整个疾病的经验,以提高ALS支持性护理的质量.
科学领域:
- 神经学 神经学
- 抚慰性护理是一种缓解性护理.
- 患者支持 患者支持
背景情况:
- 现有的关于丧亲护理伙伴的调查往往忽略了对肌缩侧面硬化症 (ALS) 护理的全部轨迹.
- 了解综合护理经验对于确定支持性服务的改进领域至关重要.
研究的目的:
- 开发和试验一项针对丧亲护理伙伴的新型调查,以评估整个疾病期间的ALS支持性护理.
- 找出改善对ALS患者及其家属提供的护理质量的机会.
主要方法:
- 一个涉及临床医生和患者倡导者的多学科共识过程,为调查开发提供了信息.
- 该调查是通过视频采访与18名ALS患者的丧亲护理伙伴进行的试点调查.
主要成果:
- 该调查包括17个核心问题和9个人口统计项目,涵盖身体,情感,教育和实际支持需求.
- 试点测试提供了关于保留护理的积极方面以及改善ALS支持护理的领域的详细反.
结论:
- 一项针对ALS支持性护理的新悲伤护理合作伙伴调查成功开发和试点,证明了可行性和可接受性.
- 计划进一步进行多中心测试,以收集与患者和护理合作伙伴价值观一致的方法来推进ALS护理的见解.
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