Berghs Maria, Horne Francesca, Yates Scott, Kemp Rachel, Webster Amy
Allied Health Sciences, De Montfort University, Leicester, United Kingdom.
Nottingham Trent University, Nottingham, United Kingdom.
Front Sociol. 2024 Feb 13;9:1334633. doi: 10.3389/fsoc.2024.1334633. eCollection 2024.
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.
本文旨在了解镰状细胞病患者的第一手经历,镰状细胞病是一种隐性遗传血液疾病,在新冠疫情期间被确定为临床上极其脆弱的人群。作为一项规模更大的序列混合方法研究的一部分,本文采用了八个定性半结构化访谈的选择性样本,并使用解释现象学分析(IPA)进行分析。IPA的第一阶段聚焦于参与者与理解屏蔽以及被确定为临床上极其脆弱相关的实际担忧。在分析的第二阶段,我们研究了它所引发的情绪以及基于歧视的情绪根源。本文增进了我们对慢性病和早衰方面的具身性和时间性的理论理解。它解释了镰状细胞病患者如何拥有一种危机与专业知识的具身伦理。它还阐明了疫情期间人们的经历并非孤立存在,而是反映了整个社会的能力主义、种族主义和年龄歧视。