By Freya Mills, PhD Student, Emergency Preparedness and Response HPRU, University of Sussex & UK Health Security Agency (UKHSA)

The UK has recently finished their first round of public evidence hearing for the COVID-19 inquiry. The inquiry aims to identify lessons from the COVID-19 pandemic and includes a focus on resilience and preparedness. However, it is important to remember that whilst many people recovered quickly after contracting COVID-19 and returned to their usual activities, for 1.9 million people in the UK, their symptoms did not subside. Instead, they developed Long Covid, which has been defined by the National Institute of Health and Care Excellence (NICE) as the signs and symptoms of COVID-19 which continue or develop four weeks after the initial COVID-19 infection. Long Covid symptoms include fatigue, muscle ache and shortness of breath and symptoms can have life-altering impacts as it can be harder to carry out household tasks and has left many unable to return to work. For quarter of a million people in the UK, they have been experiencing these symptoms, and their impact, for over two years.

Accessing support is difficult for those with Long Covid, which left many people feeling confused and alone, that is, until they found Long Covid support groups on platforms such as Facebook. These online groups vary in size and specificity as groups can be local or international and offer generalised Long Covid support or be specific to certain Long Covid symptoms or activities (such as gardening tips for those with Long Covid!). Some also participate in regular video calls, in addition to written posts or direct messages. With one particular Slack group shutting down due to a lack of funding, it’s important to understand the influence that online Long Covid support groups have on the health and wellbeing of group members, and to try and understand potential influencing factors. These are the overarching aims of my PhD and I first sought to answer these questions with an interview study where I spoke with 21 individuals who have been part of an online Long Covid group.

Reported benefits included feeling less alone, gaining a sense of purpose and increased confidence in the ability to manage symptoms, with some even reporting improvements in physical symptoms due to the advice and feedback received from group members. Participants also reported increased gratitude for their current situation and improvements in existing offline relationships as they read about the difficulties and more severe symptoms experienced by other members. However, reading these posts also negatively influenced health and wellbeing as the saliency of potential symptom severity led to increased feelings of fear.

Another key focus of this interview study was to identify whether there was any evidence of the social identity approach to health, known as “The Social Cure”, which suggests that there can be health benefits of group membership when group members identify with other members, seeing them as “us” and “we” rather than “I” and “me”. I found three ways that can lead to identification amongst Long Covid support group members: 1) shared experience of having Long Covid; 2) shared values of managing Long Covid; and 3) pre-existing identities. Participants often reported feeling benefits from being part of a group, and feeling understood and validated, when they shared at least one of these three factors. They also reported leaving groups if they didn’t align with their values towards managing Long Covid (e.g., taking an activism approach).

Based on my interviews, I learned that there is not a one-size-fits-all with online support groups, as participants are often members of multiple groups and report receiving different benefits from different groups. Also, the benefits of groups can vary between group members, as what may be advantageous to one group member may hinder another, so it’s important to explore available support group options to find the right group for their identity.

On a personal level, speaking with my participants gave me a new perspective on health and wellbeing and reminded me of the importance of community. In terms of my professional development, I presented this study at the European Association of Social Psychology in Krakow earlier this year. This was my first in-person presentation so it’s safe to say I was quite nervous, but as soon as it was over, I wanted to do it all over again. I am already looking forward to next summer when I can hopefully present the findings of my next study, which will be a survey based on the findings from this interview study.  

Acknowledgements: This study is part of a PhD which is funded by the Emergency, Preparedness and Response HPRU in the resilience theme, a collaboration between the UK Health Security Agency and King’s College London.

This blogpost republished with permission from the HPRU website.