Centre for Psyhcological Research, Leeds Beckett University, Leeds, UK.
Weston Park Cancer Centre, Sheffield Teaching Hospitals NHS Foundation Trust, Sheffield, UK.
Health Expect. 2022 Aug;25(4):1753-1765. doi: 10.1111/hex.13518. Epub 2022 May 12.
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.
2020 年，新冠病毒的长期影响并未包含在公共卫生风险信息中。长新冠作为一种新颖而神秘的疾病出现，对人们的生活产生了严重且改变人生的影响。长新冠无法通过客观的医学测试来解释，导致人们对此病普遍持怀疑和污名化的态度。本有机研究旨在探索与长新冠共存所带来的身体和认知挑战。
与历史上任何一次大流行不同，在线新冠社区和“公民科学”在深入了解长新冠方面发挥了主导作用。作为该草根新冠社区的患者主导型研究，我们采用团队方法对 2020 年 4 月至 9 月新冠大流行期间，66 名患者在 covid19-recovery.org 网站上在线提交的故事进行了主题分析。
分析的首要主题突出了与长新冠共存的复杂性和挑战。我们确定了以下独特的主题：这种疾病对生活的改变性影响、验证的重要性，以及对许多人来说，寻求替代方案是他们唯一的选择。
长新冠不易纳入主导的循证实践和生物医学健康模式，因为这些模式依赖于疾病过程的客观指标。患者的亲身经历对于理解和治疗长新冠至关重要，但患者经常被怀疑，他们的经历不被认真对待，导致污名化和认知不公正，从而在治疗关系中引入了缺乏信任的因素。
这项研究是与我们的消费者代表合作进行的，所有的发现和后续建议都是共同制定的。
