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本文引用的文献

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BMJ Open Qual. 2019 Sep 26;8(3):e000742. doi: 10.1136/bmjoq-2019-000742. eCollection 2019.
2
The incompatibility of healthcare services and end-of-life needs in advanced liver disease: A qualitative interview study of patients and bereaved carers.晚期肝病中医疗服务与临终需求的不匹配:对患者和丧亲护理者的定性访谈研究。
Palliat Med. 2018 May;32(5):908-918. doi: 10.1177/0269216318756222. Epub 2018 Feb 2.
3
Advanced chronic liver disease in the last year of life: a mixed methods study to understand how care in a specialist liver unit could be improved.生命最后一年的晚期慢性肝病:一项混合方法研究,旨在了解如何改善专科肝病病房的护理。
BMJ Open. 2017 Aug 29;7(8):e016887. doi: 10.1136/bmjopen-2017-016887.
4
Palliative care for cirrhosis: a UK survey of health professionals' perceptions, current practice and future needs.肝硬化的姑息治疗:英国对卫生专业人员认知、当前实践及未来需求的调查
Frontline Gastroenterol. 2016 Jan;7(1):4-9. doi: 10.1136/flgastro-2015-100613. Epub 2015 Jul 24.
5
Living With Liver Cirrhosis: A Vulnerable Life.与肝硬化共存:脆弱的生活。
Gastroenterol Nurs. 2017 Jan/Feb;40(1):38-46. doi: 10.1097/SGA.0000000000000158.
6
Managing uncertainty in advanced liver disease: a qualitative, multiperspective, serial interview study.应对晚期肝病中的不确定性:一项定性、多视角、系列访谈研究
BMJ Open. 2015 Nov 19;5(11):e009241. doi: 10.1136/bmjopen-2015-009241.
7
Six 'biases' against patients and carers in evidence-based medicine.循证医学中针对患者及护理人员的六种“偏见”
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8
Patient experience of non-malignant ascites and its treatment: a qualitative study.非恶性腹水患者的体验及其治疗:一项定性研究。
Int J Palliat Nurs. 2015 Aug;21(8):372-9. doi: 10.12968/ijpn.2015.21.8.372.
9
The Impact of Mental Illness Stigma on Seeking and Participating in Mental Health Care.精神疾病污名对寻求和参与精神卫生保健的影响。
Psychol Sci Public Interest. 2014 Oct;15(2):37-70. doi: 10.1177/1529100614531398.
10
Addressing liver disease in the UK: a blueprint for attaining excellence in health care and reducing premature mortality from lifestyle issues of excess consumption of alcohol, obesity, and viral hepatitis.应对英国的肝脏疾病:实现卓越医疗保健以及降低因过量饮酒、肥胖和病毒性肝炎等生活方式问题导致过早死亡的蓝图。
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“我的健康状况取决于他人”——对肝硬化患者医疗遭遇的社会学批判。二次分析。

"I am in other people's hands as regards my health" A sociological critique of health care encounters of people with cirrhosis. A secondary analysis.

机构信息

Marie Curie Palliative Care Research Department, Division of Psychiatry, University College London, London, UK.

Division of Psychiatry, University College London, London, UK.

出版信息

Chronic Illn. 2023 Mar;19(1):102-117. doi: 10.1177/17423953211058422. Epub 2021 Nov 23.

DOI:10.1177/17423953211058422
PMID:34812061
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC9841472/
Abstract

OBJECTIVES

People with cirrhosis are encouraged to participate in shared decision-making with their doctors, but studies suggest that doctors limit the amount of information that is shared. In this study we explore the presence of medical power in clinical encounters in 2015 from a patient perspective and highlight its effects on healthcare interactions.

METHODS

Qualitative semi-structured interviews were conducted with ten people with cirrhosis attending a tertiary liver transplant centre in southern England. We explored their understanding of their disease and prognosis, and their participation in decision-making. Using the lens of medical power as a framework, we analysed findings into thematic sentences to summarise key ideas whilst preserving the complexity of identified concepts.

RESULTS

Three key concepts explained patient perspectives of their communication with doctors: (1) portraying a positive image to doctors, (2) avoiding confrontation with doctors, (3) feeling powerless in the face of doctors' medical knowledge. These concepts show deeper dynamic issues of power during healthcare encounters, illustrated by participants' reluctance to voice their concerns and express themselves, challenge decisions, or seek information.

CONCLUSION

People with cirrhosis struggle to articulate their concerns or challenge decisions on their care and treatment and may worry about potential consequences. Our findings demonstrate the continuing persistence of issues of power at play in contemporary health care.

摘要

目的

鼓励肝硬化患者与医生共同做出决策,但研究表明,医生会限制所分享信息的数量。本研究从患者角度探讨了 2015 年临床诊疗中存在的医疗权力,并强调了其对医疗互动的影响。

方法

对英格兰南部一家三级肝移植中心的 10 名肝硬化患者进行了定性半结构化访谈。我们探讨了他们对自身疾病和预后的理解,以及他们参与决策的情况。我们使用医疗权力视角作为框架,将研究结果分析为主题句,以总结关键思想,同时保留已确定概念的复杂性。

结果

有三个关键概念解释了患者与医生沟通的观点:(1)向医生展示积极的形象;(2)避免与医生发生冲突;(3)面对医生的医学知识感到无能为力。这些概念表明了在医疗保健中权力动态更深层次的问题,参与者不愿表达自己的担忧和意见、质疑决策或寻求信息。

结论

肝硬化患者在表达自己的担忧或质疑护理和治疗决策方面存在困难,可能担心潜在的后果。我们的研究结果表明,在当代医疗保健中,权力问题仍然持续存在。