在ALS中应对和生命终端决策:一种定性面试研究
Celia Spoden1,2, Olga Wenzel1, Anke Erdmann1,3
1Institute for Ethics, History and Philosophy of Medicine, Hannover Medical School, Hannover, Germany.
PloS one
|June 26, 2024
概括
肌缩性侧面硬化症 (ALS) 患者使用各种应对策略,如计划或避免生命结束讨论,影响他们的支持需求. 了解这些过程是有效的终身护理咨询的关键.
科学领域:
- 神经学 神经学
- 心理学 心理学 心理学
- 抚慰性护理是一种缓解性护理.
背景情况:
- 肌缩性侧面硬化症 (ALS) 给患者带来了关于生命终结决策的复杂挑战.
- 了解患者应对机制和支持需求对于有效的息治疗至关重要.
研究的目的:
- 探索ALS患者如何应对诊断,并参与生命终结决策.
- 确定与维持生命治疗和终身护理相关的信息和支持需求.
- 检查影响ALS患者生存或死亡愿望的因素.
主要方法:
- 德国对13名ALS患者进行定性采访研究.
- 基于理论的数据收集和分析方法.
- 2019年3月至2021年4月期间进行的采访.
主要成果:
- 在应对策略,信息需求和决策准备之间发现了密切的关系.
- 两个主要的应对策略是:"避免考虑生命的终点"和"提前计划".
- 预先计划进一步分为"退出生活"和"寻找新的意义/准备治疗"模式.
- 应对策略受到个人看法,医疗保健专业人员,家庭,疾病进展和医疗保健服务的影响.
- 根据应对策略,信息和咨询需求有很大差异,并且随着时间的推移可能会发生变化.
结论:
- 深入了解应对过程对于了解ALS (PALS) 患者生命终端决策至关重要.
- 医疗保健专业人员应该承认疾病经历超出了医疗方面.
- 促进应对作为一个传记过程可以增强对PALS的支持.
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