School of Social Sciences, University of Westminster, London, United Kingdom.
School of Primary Care, Population Sciences and Medical Education, Faculty of Medicine, University of Southampton, Southampton, United Kingdom.
PLoS One. 2022 Oct 3;17(10):e0275166. doi: 10.1371/journal.pone.0275166. eCollection 2022.
Some people experience prolonged symptoms following an acute COVID-19 infection including fatigue, chest pain and breathlessness, headache and cognitive impairment. When symptoms persist for over 12 weeks following the initial infection, and are not explained by an alternative diagnosis, the term post-COVID-19 syndrome is used, or the patient-defined term of Long Covid. Understanding the lived experiences of Long Covid is crucial to supporting its management. However, research on patient experiences of Long Covid is currently not ethnically diverse enough. The study aim is to explore the lived experience of Long Covid, using qualitative interviews and art-based methods, among people from ethnically diverse backgrounds (in the UK), to better understand wider systems of support and healthcare support needs. Co-created artwork will be used to build on the interview findings. A purposive sampling strategy will be used to gain diverse experiences of Long Covid, sampling by demographics, geographic locations and experiences of Long Covid. Individuals (aged >18 years) from Black and ethnic minority backgrounds, who self-report Long Covid symptoms, will be invited to take part in a semi-structured interview. Interviews will be analysed thematically. A sub-sample of participants will be invited to co-create visual artwork to further explore shared narratives of Long Covid, enhance storytelling and increase understanding about the condition. A patient advisory group, representing diversity in ethnicity and experiences of Long Covid, will inform all research stages. Stakeholder workshops with healthcare professionals and persons, systems or networks important to people's management of Long Covid, will advise on the integration of findings to inform management of Long Covid. The study will use patient narratives from people from diverse ethnic backgrounds, to raise awareness of Long Covid and help inform management of Long Covid and how wider social systems and networks may inform better healthcare service access and experiences.
有些人在急性 COVID-19 感染后会出现长期症状，包括疲劳、胸痛和呼吸困难、头痛和认知障碍。如果最初感染后 12 周以上仍存在症状，且无法通过其他诊断来解释，那么会使用 COVID-19 后综合征这个术语，或者患者将其定义为“长新冠”。了解“长新冠”患者的真实体验对于支持其管理至关重要。然而，目前针对“长新冠”患者体验的研究在种族方面还不够多样化。本研究旨在通过人种学访谈和基于艺术的方法，探索具有不同种族背景（在英国）的“长新冠”患者的真实体验，以更好地了解更广泛的支持系统和医疗保健支持需求。合作创作的艺术品将用于基于访谈结果进行扩展。我们将采用目的抽样策略，根据人口统计学、地理位置和“长新冠”体验来获取多样化的“长新冠”经历，邀请具有不同种族背景且自我报告有“长新冠”症状的个体（年龄＞18 岁）参加半结构式访谈。我们将采用主题分析法对访谈进行分析。将邀请部分参与者合作创作视觉艺术品，以进一步探索“长新冠”的共同叙事，增强故事讲述并增进对该病症的理解。一个代表不同种族和“长新冠”经历的患者顾问小组将为所有研究阶段提供信息。将与医疗保健专业人员以及对患者“长新冠”管理重要的人员、系统或网络举行利益相关者研讨会，为如何将研究结果融入“长新冠”管理以提供建议。本研究将利用来自不同种族背景的患者的叙述，提高对“长新冠”的认识，并帮助指导“长新冠”的管理以及更广泛的社会系统和网络如何影响更好的医疗服务获取和体验。
