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

Introduction

The researchers interviewed 21 adults with Long Covid about their experiences of online support groups.

Summary

Many individuals with Long Covid experience difficulties in accessing support from healthcare providers. They’ve therefore turned to online groups for help. These groups might take place via audio or video calls; direct messages (e.g. in WhatsApp groups); or social media platforms and discussion boards. The most common format used by the participants in this study was Facebook groups.

Interviewees were recruited from the ‘COVID-19 Research Involvement Group’ on Facebook. They were asked if and how involvement in online groups affected their health and wellbeing and what factors contributed to positive or negative experiences of these groups. Because previous research (‘the social cure’ model) has shown that the social identity shared by group members plays a role in improving health, the interviewees were asked whether they thought group members developed a shared social identity.

Some online groups had a specific focus, such as particular professions experiencing Long Covid or specific recovery techniques, while others offered broader support. The reported benefits of the groups varied according to group size, type and platform, and at different stages of the illness. Smaller groups enabled a sense of community, while larger groups helped with symptom management. Local and national groups were beneficial compared to groups with an international membership because of geographical variations in healthcare.

Receiving information from groups helped participants feel informed and empowered and sometimes improved their physical health after they tried suggestions from others.

Receiving emotional support protected most participants’ wellbeing, making them feel less alone, but some reported feeling fearful as they discovered the severity of other people’s symptoms. While those struggling with their mental health benefited from the rapid emotional support provided by online groups, this aspect negatively influenced the wellbeing of others.

Most participants felt part of a community, with some developing friendships. This was particularly important for those living alone and/or whose symptoms made it harder to socialise. However engaging with the online support group itself required energy, which negatively influenced physical health for some.

Participants used different groups for different purposes, at different times. Their moods could influence their experiences, as could the stage of their illness: initially, many sought understanding and information; later they were more likely to offer support.

Conclusion

This study suggests there are many ways in which online support groups may have positive, and also potentially negative, influences on the health and wellbeing of their members. It provides support for ‘the social cure’: many group members identify with each other through their shared experience of Long Covid. Experiences of online support groups vary between different types and sizes of groups and between individuals. It is therefore important for individuals to find the right groups for them.

Paper available here.

Summary by Rachael McGill