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亨廷顿病的提前护理计划:老年护理医生的观点

Marina R Ekkel¹, Marja F I A Depla², Zahra Sakhizadah²

¹Department of Medicine for Older People, Amsterdam UMC, location Vrije Universiteit Amsterdam, Amsterdam, the Netherlands; Amsterdam Public Health, Aging & Later Life, Amsterdam, the Netherlands; Huntington Expert Centre Atlant, Apeldoorn, the Netherlands.

Journal of the American Medical Directors Association

|August 16, 2023

概括

亨廷顿病 (HD) 患者的预先护理计划 (ACP) 涉及两个不同的阶段,需要老年护理医生 (ECP) 采取不同的方法. 了解这些阶段可以改善ECP培训和支持管理复杂的终身决策,包括安乐死.

科学领域:

老年病的医生老年病的医生
神经学神经学
抚慰性护理是一种缓解性护理.

背景情况:

亨廷顿病 (HD) 是一种进展性神经退行性疾病,影响决策和沟通.
由于疾病的进展,预先护理计划 (ACP) 对HD患者至关重要.
老年护理医生 (ECP) 在HD患者的ACP中发挥着至关重要的作用,但他们的经验未得到充分研究.

研究的目的:

探索ECP在与HD患者的ACP实践中的经验.
了解亨廷顿病患者使用ACP的细微差别.

主要方法:

定性面试研究设计.
半结构面试与荷兰HD专业养老院的9名ECP进行.
采访发生在2018年6月至2020年7月期间.

主要成果:

对于HD患者来说,ACP发生在两个不同的阶段:在早期阶段采取适应的方法,并在后期阶段发挥指导作用.
在第二阶段,ECP遇到挑战,包括管理分歧和维持关系.
安乐死是ACP讨论中经常讨论的主题;在ACP中,在HD和其他神经退行性疾病之间注意到了相似之处.

结论:

在HD中的ACP可以划分为两个阶段,每个阶段都有独特的挑战,需要不同的ECP策略.
建议为非洲人才培训人员制定针对性培训,特别是关于安乐死和管理复杂的家庭动态.
加强ECP准备可以提高亨廷顿病患者预先护理规划的质量.

关键词:

亨廷顿病就是亨廷顿病.提前护理计划提前护理计划长期护理长期护理

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