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“护理路径”与“健康图景”的地形学:重新审视脑肿瘤患者的多重旅程

Topographies of 'care pathways' and 'healthscapes': reconsidering the multiple journeys of people with a brain tumour.

作者信息

Llewellyn Henry, Higgs Paul, Sampson Elizabeth L, Jones Louise, Thorne Lewis

机构信息

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

Division of Psychiatry, University College, London, UK.

出版信息

Sociol Health Illn. 2018 Mar;40(3):410-425. doi: 10.1111/1467-9566.12630. Epub 2017 Dec 12.

Abstract

People diagnosed with brain tumours enter new and unfamiliar worlds in which they must make complex and previously unimaginable decisions about care, treatment and how to live their lives. While decisions are increasingly based around care pathways, these are embedded in values that often fail to accord with those of patients. In this article, we examine the cases of people with a brain tumour and how they, their families and healthcare professionals navigate and intervene in the course of life-threatening disease. We use ethnographic data (2014-16) and modified social theory to highlight: (1) patients' interpretations of disease and care and how they might differ from dominant biomedical logics; (2) complexity and contingency in care decisions; (3) rapid and unanticipated change owing to disease and bodily change; and (4) how people find ways through a world that is continually in motion and which comes into being through the combined action of human and non-human agencies. Our modified 'healthscapes' approach provides an analytic that emphasises the constant precariousness of life with a brain tumour. It helps to explain the times when patients' feel bumped off the pathway and moments when they themselves step away to make new spaces for choice.

摘要

被诊断患有脑肿瘤的人进入了全新且陌生的世界,在这个世界里,他们必须就护理、治疗以及如何生活做出复杂且此前难以想象的决定。虽然决策越来越多地基于护理路径,但这些路径所蕴含的价值观往往与患者的价值观不一致。在本文中,我们研究了脑肿瘤患者的案例,以及他们、他们的家人和医疗保健专业人员如何在危及生命的疾病过程中进行应对和干预。我们使用人种志数据(2014 - 16年)和经过修改的社会理论来突出以下几点:(1)患者对疾病和护理的理解,以及这些理解可能与占主导地位的生物医学逻辑有何不同;(2)护理决策中的复杂性和偶然性;(3)由于疾病和身体变化而导致的迅速且意想不到的变化;(4)人们如何在一个不断变化且通过人类和非人类因素的共同作用而形成的世界中找到出路。我们经过修改的“健康景观”方法提供了一种分析方式,强调了患有脑肿瘤的生活始终存在的不稳定性。它有助于解释患者感觉被偏离路径的时刻,以及他们自己离开以创造新的选择空间的时刻。

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