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BMJ Support Palliat Care. 2021 Feb 22. doi: 10.1136/bmjspcare-2020-002676.
2
Well-Being at the End of Life.生命末期的安宁状态
Annu Rev Sociol. 2019 Jul;45:515-534. doi: 10.1146/annurev-soc-073018-022524. Epub 2019 May 13.
3
Managing death: navigating divergent logics in end-of-life care.管理死亡:在临终关怀中驾驭不同的逻辑。
Sociol Health Illn. 2020 Jul;42(6):1277-1295. doi: 10.1111/1467-9566.13095. Epub 2020 May 6.
4
Examining the transitions between living and dying roles at end-of-life.审视临终时生死角色之间的转变。
Death Stud. 2019;43(10):601-610. doi: 10.1080/07481187.2018.1504836. Epub 2018 Oct 4.
5
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Palliat Med. 2018 Sep;32(8):1288-1304. doi: 10.1177/0269216318783919. Epub 2018 Jun 29.
6
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9
Why is spiritual care infrequent at the end of life? Spiritual care perceptions among patients, nurses, and physicians and the role of training.为什么临终关怀不常见?患者、护士和医生对临终关怀的看法以及培训的作用。
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临终博客如何重申“做自己的力量”。

How End-of-Life Blogs Re-Affirm the "Power to be Oneself".

作者信息

Green Gill

机构信息

School of Health and Social Care, University of Essex, Colchester, United Kingdom.

出版信息

Front Sociol. 2022 Jan 14;6:775279. doi: 10.3389/fsoc.2021.775279. eCollection 2021.

DOI:10.3389/fsoc.2021.775279
PMID:35097060
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC8795734/
Abstract

Powerlessness generally denotes loss of control and may be experienced among those with a terminal diagnosis and, as such, empowerment is a dominant discourse in end-of-life policy in the western Anglo-Saxon world. This paper analyzes thematically blogs authored by three people with a terminal diagnosis to examine the "power to be oneself," a concept which was identified in the "Ethics of Powerlessness" project conducted in the UK. The analysis demonstrates that the bloggers assert the "power to be themselves" which is expressed in three principal ways. Firstly, through assertion of agency to promote self-affirmation and control. Secondly, through claiming a "moral authority" expressed by providing advice not just on illness and death but also on how life should be lived. Thirdly, through discussing ideas about the future and creating a legacy. The blogs are a mechanism used to express and reinforce self-identity and to carve out a "sacred space" between life and death to nurture personal change and to project this onto a public arena. This analysis demonstrates the key role patient empowerment plays in constructing an identity with a terminal diagnosis, an element that is often overlooked in end-of-life policy.

摘要

无力感通常意味着失去控制,那些被诊断为绝症的人可能会有这种感受,因此,在西方盎格鲁 - 撒克逊世界的临终政策中,赋权是一个主导性话语。本文对三位被诊断为绝症的人撰写的博客进行了主题分析,以探讨“做自己的权力”这一概念,该概念是在英国开展的“无力感伦理”项目中确定的。分析表明,博主们主张“做自己的权力”,这主要通过三种方式表达。首先,通过主张能动性来促进自我肯定和控制。其次,通过宣称一种“道德权威”,这不仅体现在就疾病和死亡提供建议,还体现在就应该如何生活提供建议。第三,通过讨论关于未来的想法并留下遗产。博客是一种机制,用于表达和强化自我认同,并在生死之间开辟出一个“神圣空间”,以促进个人改变,并将其投射到公共领域。这一分析表明了患者赋权在构建绝症身份认同中所起的关键作用,而这一要素在临终政策中常常被忽视。