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Barriers to healthcare access and experiences of stigma: findings from a co-produced Long Covid case-finding study

Barriers to healthcare access and experiences of stigma: findings from a co-produced Long Covid case-finding study
Barriers to healthcare access and experiences of stigma: findings from a co-produced Long Covid case-finding study
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.
Long Covid, epistemic injustice, health inequalities, stigma
1369-6513
Clutterbuck, Donna
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Ramasawmy, Mel
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Pantelic, Marija
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Hayer, Jasmine
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Begum, Fauzia
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Faghy, Mark
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Nasir, Nayab
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Causer, Barry
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Heightman, Melissa
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Allsopp, Gail
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Wootton, Dan
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Khan, M. Asad
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Hastie, Claire
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Jackson, Monique
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Rayner, Clare
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Brown, Darren
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Parrett, Emily
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Jones, Geraint
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Clarke, Rowan
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Mcfarland, Sammie
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Gabbay, Mark
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Banerjee, Amitava
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Alwan, Nisreen A.
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et al.
STIMULATE-ICP Consortium
Clutterbuck, Donna
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Ramasawmy, Mel
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Pantelic, Marija
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Hayer, Jasmine
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Begum, Fauzia
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Faghy, Mark
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Nasir, Nayab
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Causer, Barry
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Heightman, Melissa
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Allsopp, Gail
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Wootton, Dan
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Khan, M. Asad
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Hastie, Claire
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Jackson, Monique
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Rayner, Clare
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Brown, Darren
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Parrett, Emily
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Jones, Geraint
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Clarke, Rowan
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Mcfarland, Sammie
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Gabbay, Mark
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Banerjee, Amitava
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Alwan, Nisreen A.
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Clutterbuck, Donna, Ramasawmy, Mel and Pantelic, Marija , et al. and STIMULATE-ICP Consortium (2024) Barriers to healthcare access and experiences of stigma: findings from a co-produced Long Covid case-finding study. Health Expectations, 27 (2), [e14037]. (doi:10.1111/hex.14037).

Record type: Article

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.

Other
Barriers to healthcare access and experiences of stigma: findings from a co-produced Long Covid case-finding study - Accepted Manuscript
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More information

Accepted/In Press date: 19 March 2024
Published date: 18 April 2024
Additional Information: © 2024 The Authors. Health Expectations published by John Wiley & Sons Ltd.
Keywords: Long Covid, epistemic injustice, health inequalities, stigma

Identifiers

Local EPrints ID: 489325
URI: http://eprints.soton.ac.uk/id/eprint/489325
ISSN: 1369-6513
PURE UUID: 7582360d-9b7f-491c-afaf-48131b0f48b2
ORCID for Donna Clutterbuck: ORCID iD orcid.org/0000-0001-5622-3076
ORCID for Nisreen A. Alwan: ORCID iD orcid.org/0000-0002-4134-8463

Catalogue record

Date deposited: 19 Apr 2024 17:07
Last modified: 21 May 2024 02:02

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Contributors

Author: Donna Clutterbuck ORCID iD
Author: Mel Ramasawmy
Author: Marija Pantelic
Author: Jasmine Hayer
Author: Fauzia Begum
Author: Mark Faghy
Author: Nayab Nasir
Author: Barry Causer
Author: Melissa Heightman
Author: Gail Allsopp
Author: Dan Wootton
Author: M. Asad Khan
Author: Claire Hastie
Author: Monique Jackson
Author: Clare Rayner
Author: Darren Brown
Author: Emily Parrett
Author: Geraint Jones
Author: Rowan Clarke
Author: Sammie Mcfarland
Author: Mark Gabbay
Author: Amitava Banerjee
Corporate Author: et al.
Corporate Author: STIMULATE-ICP Consortium

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