随心缩侧面硬化症的任何阶段的息护理:一个前性可行性研究
Jocelyn Zwicker1,2,3, Ian C Smith3, Jill Rice1,2,4,5
1Faculty of Medicine, University of Ottawa, Ottawa, ON, Canada.
Frontiers in medicine
|October 2, 2023
概括
息治疗 (PC) 咨询,包括虚拟选择,对肌缩性侧面硬化症 (ALS) 患者和护理人员有益. 早期将PC纳入标准护理是可行的,并建议改善患者和护理人员的体验.
科学领域:
- 神经学 神经学
- 抚慰性护理是一种缓解性护理.
- 生活质量研究 研究 生命质量研究
背景情况:
- 许多肌缩侧面硬化症 (ALS) 患者没有及时接受息治疗 (PC),这限制了其潜在的益处.
- 早期PC对ALS患者及其护理人员的生活质量和情绪的影响仍然不足量化.
研究的目的:
- 测量早期PC对ALS患者和护理人员生活质量和情绪的影响.
- 描述患者和护理人员对PC服务的满意度.
主要方法:
- 这是一项非随机的前性可行性研究,涉及39名ALS患者和22名护理人员.
- 使用了ALS特定的生活质量修订 (ALSSQOL-R) 和医院焦虑和抑郁量表 (HADS) 问卷.
- 通过咨询后调查评估满意度,比较PC咨询前后的结果.
主要成果:
- 32名患者 (30人虚拟) 接受了PC咨询,报告满意度很高.
- 患者和护理人员发现PC有帮助 (平均4.54/5),并会推它 (平均4.59/5).
- 在接受PC或不接受PC的组之间没有观察到ALSSQOL-R或HADS得分的显著差异,尽管ALSSQOL-R得分随着时间的推移而恶化.
结论:
- 虚拟PC咨询被ALS患者和护理人员认为是有益的,无论疾病的阶段如何.
- 由于其可行性和积极的接收,常规PC应被认为是所有ALS患者护理的标准组成部分.
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