Challenges of inclusion: a population-based interview study of long COVID
Author(s)
Type
Journal Article
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 aimed to understand the varied experiences of persistent symptoms following COVID-19 and the impact on the lives of people affected.
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 report a variety of strategies in managing their symptoms, seeking information and support from a range of sources.
Patient or Public Contribution:
Study design, analysis, and drafting of paper informed by Patient Advisory Group.
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 aimed to understand the varied experiences of persistent symptoms following COVID-19 and the impact on the lives of people affected.
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 report a variety of strategies in managing their symptoms, seeking information and support from a range of sources.
Patient or Public Contribution:
Study design, analysis, and drafting of paper informed by Patient Advisory Group.
Date Issued
2025-10-01
Date Acceptance
2025-08-25
Citation
Health Expectations, 2025, 28 (5)
ISSN
1369-6513
Publisher
Wiley
Journal / Book Title
Health Expectations
Volume
28
Issue
5
Copyright Statement
© 2025 The Author(s). Health Expectations published by John Wiley & Sons Ltd. This is an open access article under the terms of the Creative Commons Attribution License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited.
License URL
Publication Status
Published
Article Number
e70428
Date Publish Online
2025-09-11