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. 2024 Jun;27(3):e14108.
doi: 10.1111/hex.14108.

Exploring the Experiences of Living With the Post-COVID Syndrome: A Qualitative Study

Michail Kalfas  1 , Caroline Jolley  2   3 , Nicholas Hart  2   4 , Gerrard F Rafferty  2 , Emma L Duncan  5   6 , Timothy Nicholson  7 , Mark Ashworth  8 , Debbie Brewin  1 , Barbara Barrett  8 , Oliver C Witard  2 , Damien Ridge  9 , Trudie Chalder  1
Affiliations

Exploring the Experiences of Living With the Post-COVID Syndrome: A Qualitative Study

Michail Kalfas et al. Health Expect. 2024 Jun.

Abstract

Introduction: Many people experience persistent symptoms for more than 12 weeks following SARS-CoV-2 infection, which is known as post-COVID-19 condition (PCS) or Long COVID (LC). PCS can impair people's quality of life and daily functioning. However, there is a lack of in-depth research exploring the PCS patient journey, as well as gendered aspects of patients' experiences.

Methods: Nineteen semi-structured qualitative interviews were conducted with people living with PCS in the United Kingdom (13 women, 6 men). Interviews were transcribed verbatim and analysed inductively using reflexive thematic analysis.

Results: Five main themes were identified: 'Symptom dismissal', 'Lack of information and support', 'Life before and after Long COVID', 'Psychological impact' and 'Acceptance'. A shift overtime to self-management of symptoms was evident. These themes represent different stages of patients' PCS journey. Narratives indicated that women highlighted dismissal by healthcare professionals (HCPs), which was not as prominent in men's narratives. In addition, women went into more detail about the psychological impact of PCS compared to men.

Conclusion: Women with PCS reported symptom dismissal by HCPs, which may have delayed their diagnosis and negatively affected their well-being. We were not able to explore the experiences of people from non-conforming gender groups. Raising awareness of these issues among HCPs, particularly general practitioners, could improve patient care in PCS.

Patient or public contribution: Patient and public involvement consisted of people who took part in the interviews and commented on the themes' interpretation and study conclusions.

Keywords: COVID‐19; Long COVID; dismissal; gender; patient and public involvement; qualitative.

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Conflict of interest statement

T.C. is part‐funded by the National Institute for Health Research (NIHR) Biomedical Research Centre at South London and Maudsley NHS Foundation Trust, King's College London. T.C. is the author of several self‐help books on chronic fatigue for which she has received royalties; has received ad hoc payments for workshops carried out in long‐term conditions and Long COVID; is on the Expert Advisory Panel for Covid‐19 Rapid Guidelines; has received travel expenses and accommodation costs of attending Conferences; is in receipt of other grants related to COVID from UKRI. D.R. has received funding from Roche for a project ‘Investigating how carers cope, access and use support services—Lessons from Covid‐19’, and is in receipt of another grant (NIHR) related to Long COVID. E.L.D. reports receiving funding for research into Long COVID from the Chronic Disease Research Foundation, specifically for the genetics of PCS/ongoing symptomatic COVID‐19. The remaining authors declare no conflicts of interest.

Figures

Figure 1
Figure 1
Stages of the patient journey and potential relationships between themes. Dashed red lines represent negative associations and green positive associations. Dashed black lines indicate ‘neutral’ associations, as the effectiveness of self‐management depends on the strategies used.
See this image and copyright information in PMC

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