Online support groups, social identity, and the health and wellbeing of adults with Long Covid: An interview study

Abstract

As many individuals with Long Covid are left without formal support, they have turned to online support groups for help. In a pre-registered study, interviews were carried out with 21 adults with Long Covid to explore experiences of using online support groups, to understand whether participants felt these experiences influenced their health and wellbeing, and to identify whether group members developed a shared social identity. The reported benefits varied by the nature and size of the online support group: participants reported that smaller groups enabled a sense of community; occupation groups provided work-specific support; and larger groups helped with symptom management. Interviewees reported that support groups validated members' experiences, made them feel less alone, and enhanced self-efficacy by providing and offering support and enabling participants to learn new skills. However, negative outcomes were also reported, such as increased fear and reduced wellbeing. Shared identities developed based on mutual Long Covid experiences, shared values towards illness management, and pre-existing identities. Reported experiences also varied between online support group size (large vs small); type (e.g., advocacy-focused, yoga-based, local or international); and platform (video- vs text-based) and throughout the illness. Whilst this study recognises the necessity of medical treatment for Long Covid, we also recommended that individuals with Long Covid explore different support groups to find the most suitable group for them in terms of preferred group features, values towards illness management and enablement of social identities.