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.

The authors have declared no competing interest.

This work is independent research funded by the National Institute for Health and Care Research (NIHR) and UK Research and Innovation (UKRI): REACT-GE (Genomics England) (UKRI MC_PC_20049) and REACT-LC (Long COVID) (COV-LT-0040). The REACT-1 and REACT-2 studies were funded by the Department of Health and Social Care in England (DHSC). We also acknowledge support from the NIHR Imperial Biomedical Research Centre. The views expressed in this publication are those of the authors and not necessarily those of DHSC, NIHR or UKRI.

I confirm all relevant ethical guidelines have been followed, and any necessary IRB and/or ethics committee approvals have been obtained.

Yes

The details of the IRB/oversight body that provided approval or exemption for the research described are given below:

This study received ethical approval from the South-Central Berkshire B Research Ethics Committee (IRAS ID: 298404, REC Ref 21/SC/0134) and all participants provided informed consent to be interviewed.

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Email addresses: emily.cooperimperial.ac.uk; adam.loundbelfasttrust.hscni.net; kathryn.jonesimperial.ac.uk; janebruton53gmail.com; s.dayimperial.ac.uk; christina.atchison11imperial.ac.uk; ecclescakehotmail.com; alexpiper2002gmail.com; g.cookeimperial.ac.uk; m.chadeauimperial.ac.uk; p.elliottimperial.ac.uk; h.wardimperial.ac.uk

Data availability All relevant data are within the manuscript of this qualitative study. Full transcripts/data cannot be shared publicly because of the sensitive and potentially identifiable nature of the qualitative data we collected, and the nature of the consent obtained from participants which ensured confidentiality and anonymity. Data access requests for elements of raw data may be sent to the REACT Data Access Committee (contact via react.lc.studyimperial.ac.uk).

Funding statement This work is independent research funded by the National Institute for Health and Care Research (NIHR) and UK Research and Innovation (UKRI): REACT-GE (Genomics England) (UKRI MC_PC_20049) and REACT-LC (Long COVID) (COV-LT-0040). The REACT-1 and REACT-2 studies were funded by the Department of Health and Social Care in England (DHSC). We also acknowledge support from the NIHR Imperial Biomedical Research Centre. The views expressed in this publication are those of the authors and not necessarily those of DHSC, NIHR or UKRI.

Conflict of interest disclosure The authors declare no conflicts of interest related to this manuscript. No financial, personal, or professional relationships have influenced the research, analysis, or conclusions presented in this study.

Ethics The REACT and REACT-LC Studies hold ethical approval from South-Central Berkshire B Research Ethics Committee (IRAS IDs: 298404, 259978, 283787, 298724). All participants provided informed consent to take part in the study.

Patient consent statement All participants provided informed consent.

Permission to reproduce material from other sources N/A

Clinical trial registration N/A

All relevant data are within the manuscript of this qualitative study. Full transcripts/data cannot be shared publicly because of the sensitive and potentially identifiable nature of the qualitative data we collected, and the nature of the consent obtained from participants which ensured confidentiality and anonymity. Data access requests for elements of raw data may be sent to the REACT Data Access Committee (contact via react.lc.studyimperial.ac.uk).