School of Health Sciences, University of Nottingham, Nottingham, UK.
Policy, Research and Campaigns Department, Royal College of General Practitioners, London, UK.
Health Expect. 2022 Dec;25(6):2950-2959. doi: 10.1111/hex.13602. Epub 2022 Sep 23.
Healthcare is witnessing a new disease with the emergence of Long Covid; a condition which can result in myriad symptoms, varying in frequency and severity. As new data are emerging to help inform treatment guidelines, the perspectives of those living with Long Covid are essential in informing healthcare practice. The research aimed to collect the narratives of people living with Long Covid to better understand the lived experience of this condition. In attempting to narrate complex or traumatic experiences the arts and humanities can offer alternative ways of expressing embodied narratives, representing rich sources of meaning. Therefore, the research specifically sought to elicit creative expressions from participants with lived experience of Long Covid.
Data were collected via an online repository where participants could submit their pieces of creative writing. Data were collected between August 2021 and January 2022 and a total of 28 submissions were received from participants. These were mostly written creative narratives. However, a small number were submitted as audio or video files of spoken word poetry or songs. Data collection was stopped once data saturation was achieved.
The submissions were subjected to thematic analysis and five themes were generated. These five themes are Identity, social relationships, symptoms, interaction with healthcare systems and time. The results provide an insight into the experience of Long Covid as detailed by the participants' creative narratives.
The results from this study provide a unique insight into the lived experience of Long Covid. In relation to clinical practice, the results suggest that adjustment reaction and loss of sense of self could be added as common symptoms.
Before undertaking the research, Long Covid community groups were contacted to discuss the potential value of this study and it was widely supported. One of the leading Long Covid support groups was also involved in disseminating information regarding the project. As part of ongoing work within this project, members of the team are actively disseminating the results within Long Covid communities and seeking to develop arts-based workshops specifically for people with Long Covid.
随着 Long Covid 的出现，医疗保健领域出现了一种新疾病；这种疾病会导致各种症状，其频率和严重程度各不相同。随着新数据的出现，帮助制定治疗指南，那些患有 Long Covid 的人的观点对于告知医疗实践至关重要。本研究旨在收集患有 Long Covid 人的叙述，以更好地了解这种疾病的生活体验。在试图叙述复杂或创伤性经历时，艺术和人文学科可以提供表达身体叙述的替代方法，代表丰富的意义来源。因此，该研究特别试图从有 Long Covid 生活体验的参与者那里获得创意表达。
通过在线存储库收集数据，参与者可以在其中提交他们的创意写作作品。数据收集于 2021 年 8 月至 2022 年 1 月之间进行，共收到 28 名参与者的提交作品。这些作品主要是创意叙事。然而，也有一小部分是作为口头诗歌或歌曲的音频或视频文件提交的。一旦达到数据饱和，数据收集就停止了。
提交的作品进行了主题分析，产生了五个主题。这五个主题是身份、社会关系、症状、与医疗保健系统的互动和时间。结果提供了对参与者创意叙述详细描述的 Long Covid 体验的深入了解。
本研究的结果提供了对 Long Covid 生活体验的独特见解。在临床实践方面，结果表明，适应反应和自我感丧失可以作为常见症状添加。
在进行研究之前，联系了 Long Covid 社区团体，讨论了这项研究的潜在价值，并得到了广泛支持。其中一个领先的 Long Covid 支持团体也参与了该项目的信息传播。作为该项目正在进行的工作的一部分，团队成员正在积极在 Long Covid 社区中传播结果，并寻求为患有 Long Covid 的人开发专门的艺术工作坊。
