Faculty of Public Health and Policy, London School of Hygiene and Tropical Medicine, London, United Kingdom.
J Med Internet Res. 2022 May 20;24(5):e37674. doi: 10.2196/37674.
Long COVID is an emerging public health concern. A growing number of individuals are experiencing prolonged, multifaceted health challenges and accompanying social impacts after COVID-19 infections. Support services in the United Kingdom remain insufficient and fraught with complexity. Responding to persistent gaps in care, patients joined forces in online peer support groups. However, little is known about how these groups impact patients with long COVID and their lived experiences of the condition.
The aim of this study is to explore the roles that online peer support groups take on and the impact they have on patients experiencing and recovering from long COVID in the United Kingdom. In doing so, this study aims to identify ways to inform future long COVID care, including online peer support and broader long COVID care structures.
I conducted 11 semistructured interviews virtually on Zoom in July 2021. Participants had long COVID, were UK-based, and used long COVID online peer support groups. Topics discussed in interviews included what led participants to these groups, experiences within them, and feelings about the roles that the groups took on. I analyzed the results by manually conducting thematic analysis.
Long COVID online peer support groups had numerous roles, significantly impacting users. I identified 5 themes and 13 subthemes through thematic analysis. The identified themes were as follows: (1) filling professional care gaps, (2) societal awareness, (3) engagement behavior, (4) diversity, and (5) social connections. Given the void of professional support, those experiencing long COVID gained some benefit from these groups. However, participants emphasized notable concerns about the all-encompassing roles these groups embody and speculated over potential improvements.
If used appropriately, online peer support groups could be immensely beneficial for patient well-being, beyond simply filling gaps in long COVID care. However, it appears many groups take on more than they can manage and become potentially harmful. Through prioritizing patient voices, long COVID care could be restructured to maximize peer support's benefits within broader care structures.
长新冠是一个新出现的公共卫生关注点。越来越多的人在感染新冠病毒后经历着长期的、多方面的健康挑战和伴随而来的社会影响。英国的支持服务仍然不足，且充满复杂性。为了应对持续存在的护理缺口，患者加入了在线同行支持小组。然而，对于这些小组如何影响长新冠患者及其对该疾病的生活体验，我们知之甚少。
本研究旨在探讨在线同行支持小组所扮演的角色，以及它们对英国长新冠患者的影响。通过这样做，本研究旨在确定如何为未来的长新冠护理提供信息，包括在线同行支持和更广泛的长新冠护理结构。
我于 2021 年 7 月在 Zoom 上进行了 11 次半结构式虚拟访谈。参与者患有长新冠，居住在英国，并使用长新冠在线同行支持小组。访谈中讨论的主题包括是什么促使参与者加入这些小组、他们在小组中的经历，以及对小组所扮演角色的感受。我通过手动进行主题分析来分析结果。
长新冠在线同行支持小组扮演着众多角色，对用户产生了重大影响。通过主题分析，我确定了 5 个主题和 13 个子主题。确定的主题如下：（1）填补专业护理缺口，（2）社会意识，（3）参与行为，（4）多样性，以及（5）社会联系。鉴于专业支持的缺乏，那些患有长新冠的人从这些小组中获得了一些好处。然而，参与者强调了这些小组所体现的全面角色的显著问题，并推测了潜在的改进。
如果使用得当，在线同行支持小组可能对患者的健康福祉非常有益，不仅仅是填补长新冠护理的缺口。然而，似乎许多小组承担的任务超过了他们的能力范围，可能会造成潜在的危害。通过优先考虑患者的意见，可以对长新冠护理进行重组，以在更广泛的护理结构中最大限度地发挥同伴支持的益处。
