Challenges of visibility and inclusion in Long COVID: a population-based interview study

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Abstract
Introduction People with Long Covid report a wide range of symptoms and inconsistent responses when seeking clinical diagnosis and support. Much of the qualitative research on Long Covid has been based on people attending specialist clinical services or who have accessed support groups. We describe the varied ways in which a diverse group of people in a community sample experience, recognise and manage persistent symptoms following COVID-19. Methods Qualitative interview study nested within the large, community-based REal-time Assessment of Community Transmission (REACT) study in England. Participants reporting persistent symptoms following COVID-19 were asked for consent to be contacted about a follow-up interview. We then purposively sampled by age, gender, ethnicity and symptom severity and conducted 60 interviews. Analysis was carried out using a reflexive thematic analysis approach. Results Participants were an ethnically diverse group aged between 18 and 80 years who reported symptoms following COVID-19 for between a few months and more than two years. Many had not accessed clinical care or specific Long Covid support, and some did not identify with the category of long covid, rendering their experiences largely invisible. Participants highlighted the ways in which they self-manage symptoms within this context, and the varied burden of coping with ongoing health problems. Conclusion This diverse sample of people with Long Covid report a range of challenges managing this emerging and contested condition, with uncertainty affecting their own understanding and the validation they receive from professionals, family and friends. These challenges intersect with others such as racism, and are compounded by a lack of specific resources for Long Covid as well as over-stretched health services in the UK. Nevertheless, people show resilience in their self-management, seeking information and support from a range of sources. Patient or Public Contribution Study design, analysis and outputs informed by Patient Advisory Group.

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