Exploring invisibility and epistemic injustice in Long Covid-A citizen science qualitative analysis of patient stories from an online Covid community.
Exploring invisibility and epistemic injustice in Long Covid-A citizen science qualitative analysis of patient stories from an online Covid community.
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DOI：
10.1111/hex.13518
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发表时间：
2022-08
影响因子：
3.2
通讯作者：
Jones, Georgina
中科院分区：
文献类型：
--
作者：
Ireson, Jane;Taylor, Amy;Richardson, Ed;Greenfield, Beatrice;Jones, Georgina
关键词：
2020年，新型冠状病毒的长期影响并未纳入公共卫生风险的公开信息中。长期新型冠状病毒病是一种新颖而神秘的疾病，具有严重和改变生活的影响。客观的医学测试对长时间的新冠肺炎解释不清，导致人们普遍不相信这种疾病，并对这种疾病感到耻辱。这项有机研究的目的是探索长期新冠肺炎患者的身体和认知挑战。与历史上任何一次大流行不同，新冠肺炎在线社区和“公民科学”在推动我们对长期新冠肺炎的理解方面发挥了主导作用。作为以患者为主导的对基层Covid社区的研究，我们对2020年4月至9月Covid-19大流行开始时在线提交给covid 19 ‐ recovery. org的66个患者故事进行了团队主题分析。分析的首要主题突出了长期新冠肺炎的复杂性和挑战。我们确定了不同的主题：改变生活的影响条件，验证的重要性，以及如何，对于许多人来说，寻求替代品是他们唯一的选择。长期新型冠状病毒不容易适应基于证据的主流实践和健康的生物医学模型，这些模型依赖于疾病过程的客观指标。患者的证词对于理解和治疗新型冠状病毒肺炎至关重要，但患者经常不相信，他们的证词也没有得到认真对待，导致污名化和认识上的不公正，这导致了治疗关系中缺乏信任。这项研究是与我们的消费者代表合作进行的，所有调查结果和随后的建议都是共同制作的。
In 2020, the long‐lasting effects of the Covid‐19 virus were not included in public messages of risks to public health. Long Covid emerged as a novel and enigmatic illness with a serious and life‐changing impact. Long Covid is poorly explained by objective medical tests, leading to widespread disbelief and stigma associated with the condition. The aim of this organic research is to explore the physical and epistemic challenges of living with Long Covid. Unlike any previous pandemic in history, online Covid communities and ‘citizen science’ have played a leading role in advancing our understanding of Long Covid. As patient‐led research of this grassroots Covid community, a team approach to thematic analysis was undertaken of 66 patient stories submitted online to covid19‐recovery.org at the beginning of the Covid‐19 pandemic between April and September 2020. The overriding theme of the analysis highlights the complexities and challenges of living with Long Covid. Our distinct themes were identified: the life‐changing impact of the condition, the importance of validation and how, for many, seeking alternatives was felt to be their only option. Long Covid does not easily fit into the dominant evidence‐based practice and the biomedical model of health, which rely on objective indicators of the disease process. Patient testimonies are vital to understanding and treating Long Covid, yet patients are frequently disbelieved, and their testimonies are not taken seriously leading to stigma and epistemic injustice, which introduces a lack of trust into the therapeutic relationship. The research was undertaken in partnership with our consumer representative(s) and all findings and subsequent recommendations have been coproduced.
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影响因子：
2.6
作者：
Moldofsky H;Patcai J
通讯作者：
Patcai J
影响因子：
2.9
作者：
Bayliss, Kerin;Goodall, Mark;Wearden, Alison
通讯作者：
Wearden, Alison
影响因子：
4.1
作者：
Buttery S;Philip KEJ;Williams P;Fallas A;West B;Cumella A;Cheung C;Walker S;Quint JK;Polkey MI;Hopkinson NS
通讯作者：
Hopkinson NS
DOI：
10.1016/j.jmir.2020.08.003
发表时间：
2020-12-01
影响因子：
1.8
作者：
Taylor, Amy;Hodgson, Denyse
通讯作者：
Hodgson, Denyse
DOI：
10.1038/s41577-022-00692-6
发表时间：
2022-04
期刊：
Nature reviews. Immunology
影响因子：
--
作者：
Alwan NA
通讯作者：
Alwan NA