. 2024 Apr;27(2):e14037.

doi: 10.1111/hex.14037.

Barriers to healthcare access and experiences of stigma: Findings from a coproduced Long Covid case-finding study

Donna Clutterbuck¹, Mel Ramasawmy², Marija Pantelic^{3

4}, Jasmine Hayer^{5

6}, Fauzia Begum⁷, Mark Faghy⁸, Nayab Nasir⁹, Barry Causer¹⁰, Melissa Heightman¹¹, Gail Allsopp¹², Dan Wootton^{13

14}, M Asad Khan^{6

15}, Claire Hastie^{6

16}, Monique Jackson⁶, Clare Rayner⁶, Darren Brown^{6

17}, Emily Parrett⁶, Geraint Jones⁶, Rowan Clarke⁶, Sammie Mcfarland^{6

18}, Mark Gabbay^{19

20}, Amitava Banerjee², Nisreen A Alwan^{1

21

22}; STIMULATE‐ICP Consortium

Affiliations

¹ School of Primary Care, Population Sciences and Medical Education, University of Southampton, Southampton, UK.
² Institute of Health Informatics, University College London, London, UK.
³ Brighton and Sussex Medical School, University of Sussex, Falmer, UK.
⁴ Department of Social Policy and Intervention, University of Oxford, Oxford, UK.
⁵ PPIE Co-applicant for STIMULATE-ICP, London, UK.
⁶ Member of the Community Advisory Board as person with lived experience of Long Covid, Southampton, UK.
⁷ University Hospitals of Derby and Burton NHS Foundation Trust, Derbyshire, UK.
⁸ Clinical Exercise and Rehabilitation Research Centre, University of Derby, Derby, UK.
⁹ Department of Health and Social Care, Office for Health Improvement and Disparities, UK.
¹⁰ Merton Public Health, Merton Council, London, UK.
¹¹ University College London Hospitals NHS Trust, London, UK.
¹² Royal College of General Practitioners, London, UK.
¹³ Clinical Infection Microbiology and Immunology, University of Liverpool, Liverpool, UK.
¹⁴ Liverpool University Hospitals NHS Foundation Trust, Liverpool, UK.
¹⁵ Manchester University Hospitals NHS Foundation Trust, Manchester, UK.
¹⁶ Long Covid Support Charity, London, UK.
¹⁷ Chelsea and Westminster Hospital NHS Foundation Trust, London, UK.
¹⁸ Long Covid Kids Charity, Salisbury, UK.
¹⁹ NIHR Applied Research Collaboration North West Coast, Liverpool, UK.
²⁰ Department of Primary Care and Mental Health, University of Liverpool, Liverpool, UK.
²¹ University Hospital Southampton NHS Foundation Trust, Southampton, UK.
²² NIHR Applied Research Collaboration Wessex, Southampton, UK.

PMID: 38634418
PMCID: PMC11024953
DOI: 10.1111/hex.14037

Barriers to healthcare access and experiences of stigma: Findings from a coproduced Long Covid case-finding study

Donna Clutterbuck et al. Health Expect. 2024 Apr.

. 2024 Apr;27(2):e14037.

doi: 10.1111/hex.14037.

Authors

Affiliations

¹ School of Primary Care, Population Sciences and Medical Education, University of Southampton, Southampton, UK.
² Institute of Health Informatics, University College London, London, UK.
³ Brighton and Sussex Medical School, University of Sussex, Falmer, UK.
⁴ Department of Social Policy and Intervention, University of Oxford, Oxford, UK.
⁵ PPIE Co-applicant for STIMULATE-ICP, London, UK.
⁶ Member of the Community Advisory Board as person with lived experience of Long Covid, Southampton, UK.
⁷ University Hospitals of Derby and Burton NHS Foundation Trust, Derbyshire, UK.
⁸ Clinical Exercise and Rehabilitation Research Centre, University of Derby, Derby, UK.
⁹ Department of Health and Social Care, Office for Health Improvement and Disparities, UK.
¹⁰ Merton Public Health, Merton Council, London, UK.
¹¹ University College London Hospitals NHS Trust, London, UK.
¹² Royal College of General Practitioners, London, UK.
¹³ Clinical Infection Microbiology and Immunology, University of Liverpool, Liverpool, UK.
¹⁴ Liverpool University Hospitals NHS Foundation Trust, Liverpool, UK.
¹⁵ Manchester University Hospitals NHS Foundation Trust, Manchester, UK.
¹⁶ Long Covid Support Charity, London, UK.
¹⁷ Chelsea and Westminster Hospital NHS Foundation Trust, London, UK.
¹⁸ Long Covid Kids Charity, Salisbury, UK.
¹⁹ NIHR Applied Research Collaboration North West Coast, Liverpool, UK.
²⁰ Department of Primary Care and Mental Health, University of Liverpool, Liverpool, UK.
²¹ University Hospital Southampton NHS Foundation Trust, Southampton, UK.
²² NIHR Applied Research Collaboration Wessex, Southampton, UK.

PMID: 38634418
PMCID: PMC11024953
DOI: 10.1111/hex.14037

Abstract

Background and aim: Long Covid is often stigmatised, particularly in people who are disadvantaged within society. This may prevent them from seeking help and could lead to widening health inequalities. This coproduced study with a Community Advisory Board (CAB) of people with Long Covid aimed to understand healthcare and wider barriers and stigma experienced by people with probable Long Covid.

Methods: An active case finding approach was employed to find adults with probable, but not yet clinically diagnosed, Long Covid in two localities in London (Camden and Merton) and Derbyshire, England. Interviews explored the barriers to care and the stigma faced by participants and were analysed thematically. This study forms part of the STIMULATE-ICP Collaboration.

Findings: Twenty-three interviews were completed. Participants reported limited awareness of what Long Covid is and the available pathways to management. There was considerable self-doubt among participants, sometimes reinforced by interactions with healthcare professionals (HCPs). Participants questioned their deservedness in seeking healthcare support for their symptoms. Hesitancy to engage with healthcare services was motivated by fear of needing more investigation and concerns regarding judgement about the ability to carry out caregiving responsibilities. It was also motivated by the complexity of the clinical presentation and fear of all symptoms being attributed to poor mental health. Participants also reported trying to avoid overburdening the health system. These difficulties were compounded by experiences of stigma and discrimination. The emerging themes reaffirmed a framework of epistemic injustice in relation to Long Covid, where creating, interpreting and conveying knowledge has varied credibility based on the teller's identity characteristics and/or the level of their interpretive resources.

Conclusion: We have codeveloped recommendations based on the findings. These include early signposting to services, dedicating protected time to listening to people with Long Covid, providing a holistic approach in care pathways, and working to mitigate stigma. Regardless of the diagnosis, people experiencing new symptoms must be encouraged to seek timely medical help. Clear public health messaging is needed among communities already disadvantaged by epistemic injustice to raise awareness of Long Covid, and to share stories that encourage seeking care and to illustrate the adverse effects of stigma.

Patient or public contribution: This study was coproduced with a CAB made up of 23 members including HCPs, people with lived experience of Long Covid and other stakeholders.

Keywords: Long Covid; epistemic injustice; health inequalities; stigma.

PubMed Disclaimer

Conflict of interest statement

Clare Rayner is a member of the Society of Occupational Medicine's Long Covid Taskforce, has received occasional honoraria for talks given on Long Covid, has done occasional paid consultancy work for employers. Nisreen A. Alwan is a scientific advisor to the Long Covid Support Charity and has contributed in an advisory capacity to WHO and the EU Commission's Expert Panel on effective ways of investing in health meetings in relation to post‐COVID‐19 condition. Clare Rayner and Nisreen A. Alwan are Long Covid Kids Charity Champions. The other authors declare no conflict of interest.

Figures

**Figure 1**
Study eligibility flow chart.

**Figure 2**
Epistemic injustice in Long Covid as a framework for the study findings. Graphic created using Canva software.

**Figure 3**
Long Covid active case finding study recommendations. Graphic created using Canva software.

See this image and copyright information in PMC

References

1. World Health Organization . A clinical case definition of post COVID‐19 condition by a Delphi consensus. 2023. Accessed July 12, 2023. https://www.who.int/publications/i/item/WHO-2019-nCoV-Post_COVID-19_cond...
1. Nabavi N. Long covid: how to define it and how to manage it. BMJ. 2020;370:m3489. 10.1136/bmj.m3489 - DOI - PubMed
1. Office for National Statistics . Prevalence of ongoing symptoms following coronavirus (COVID‐19) infection in the UK. March 30, 2023. Accessed August 10, 2023. https://www.ons.gov.uk/peoplepopulationandcommunity/healthandsocialcare/...
1. Ziauddeen N, Gurdasani D, O'Hara ME, et al. Characteristics and impact of Long Covid: findings from an online survey. PLoS One. 2022;17(3):e0264331. 10.1371/journal.pone.0264331 - DOI - PMC - PubMed
1. Buttery S, Philip KEJ, Williams P, et al. Patient symptoms and experience following COVID‐19: results from a UK‐wide survey. BMJ Open Respir Res. 2021;8:e001075. 10.1136/bmjresp-2021-001075 - DOI - PMC - PubMed

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Barriers to healthcare access and experiences of stigma: Findings from a coproduced Long Covid case-finding study

Affiliations

Barriers to healthcare access and experiences of stigma: Findings from a coproduced Long Covid case-finding study

Authors

Affiliations

Abstract

Conflict of interest statement

Figures

References

Publication types

MeSH terms

Grants and funding

LinkOut - more resources

Full Text Sources

Medical