镰状细胞疾病患者在 COVID-19 大流行期间被屏蔽的屈辱感:解释性现象学分析

Maria J. Berghs, Francesca Horne, S. Yates, Rachel Kemp, Amy Webster
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引用次数: 0

摘要

镰状细胞病是一种隐性遗传的血液疾病,在 COVID-19 大流行期间,镰状细胞病患者被确认为临床上极易受到感染,本文试图了解他们的第一手经历。本文是一项大型连续性混合方法研究的一部分,使用了八个半结构化定性访谈的选择性样本,并使用解释性现象分析法(IPA)对其进行了分析。第一阶段的解释性现象分析主要关注参与者在理解屏蔽方面的实际问题,以及他们对被认定为临床极度易感人群的感受。在第二阶段的分析中,我们研究了屏蔽带来的情绪以及基于歧视的情绪基础。这篇文章加深了我们对慢性病和早期老龄化的体现和时间性的理论理解。文章解释了镰状细胞疾病患者如何具有危机和专业知识的体现伦理。文章还阐释了人们在大流行病期间的经历如何不能被视为无效,而是说明了整个社会中的能力主义、种族主义和年龄歧视。
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The indignities of shielding during the COVID-19 pandemic for people with sickle cell disorders: an interpretative phenomenological analysis
This article seeks to understand the first-hand experiences of people with sickle cell, a recessively inherited blood disorder, who were identified as clinically extremely vulnerable during the COVID-19 pandemic. Part of a larger sequential mixed-methods study, this article uses a selective sample of eight qualitative semi-structured interviews, which were analysed using interpretative phenomenological analysis (IPA). The first stage of IPA focused on practical concerns participants had correlated to understanding shielding and their feelings about being identified as clinically extremely vulnerable. In a secondary stage of analysis, we examined the emotions that it brought forth and the foundations of those based on discriminations. This article adds to our theoretical understanding of embodiment and temporality with respect to chronicity and early ageing. It explains how people with sickle cell disorders have an embodied ethics of crisis and expertise. It also elucidates how people’s experiences during the pandemic cannot be seen in void but illustrates ableism, racism, and ageism in society writ large.
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