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Long Covid stigma: estimating burden and validating scale in a UK-based sample

Long Covid stigma: estimating burden and validating scale in a UK-based sample
Long Covid stigma: estimating burden and validating scale in a UK-based sample

Background Stigma can be experienced as perceived or actual disqualification from social and institutional acceptance on the basis of one or more physical, behavioural or other attributes deemed to be undesirable. Long Covid is a predominantly multisystem condition that occurs in people with a history of SARSCoV2 infection, often resulting in functional disability. This study aimed to develop and validate a Long Covid Stigma Scale (LCSS); and to quantify the burden of Long Covid stigma. Methods Data from the follow-up of a co-produced community-based Long Covid online survey using convenience non-probability sampling was used. Thirteen questions on stigma were designed to develop the LCSS capturing three domains-enacted (overt experiences of discrimination), internalised (internalising negative associations with Long Covid and accepting them as self-applicable) and anticipated (expectation of bias/poor treatment by others) stigma. Confirmatory factor analysis tested whether LCSS consisted of the three hypothesised domains. Model fit was assessed and prevalence was calculated. Results 966 UK-based participants responded (888 for stigma questions), with mean age 48 years (SD: 10.7) and 85% female. Factor loadings for enacted stigma were 0.70-0.86, internalised 0.75-0.84, anticipated 0.58-0.87, and model fit was good. The prevalence of experiencing stigma at least 'sometimes' and 'often/always' was 95% and 76% respectively. Anticipated and internalised stigma were more frequently experienced than enacted stigma. Those who reported having a clinical diagnosis of Long Covid had higher stigma prevalence than those without. Conclusion This study establishes a scale to measure Long Covid stigma and highlights common experiences of stigma in people living with Long Covid.

1932-6203
Pantelic, Marija
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Ziauddeen, Nida
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Boyes, Mark
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O'Hara, Margaret E.
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Hastie, Claire
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Alwan, Nisreen
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Pantelic, Marija
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Ziauddeen, Nida
8b233a4a-9763-410b-90c7-df5c7d1a26e4
Boyes, Mark
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O'Hara, Margaret E.
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Hastie, Claire
00b5a5a1-da64-4c54-be0e-06e2e6ffe6a0
Alwan, Nisreen
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Pantelic, Marija, Ziauddeen, Nida, Boyes, Mark, O'Hara, Margaret E., Hastie, Claire and Alwan, Nisreen (2022) Long Covid stigma: estimating burden and validating scale in a UK-based sample. PLoS ONE, 17 (11), [e0277317]. (doi:10.1101/2022.05.26.22275585).

Record type: Article

Abstract

Background Stigma can be experienced as perceived or actual disqualification from social and institutional acceptance on the basis of one or more physical, behavioural or other attributes deemed to be undesirable. Long Covid is a predominantly multisystem condition that occurs in people with a history of SARSCoV2 infection, often resulting in functional disability. This study aimed to develop and validate a Long Covid Stigma Scale (LCSS); and to quantify the burden of Long Covid stigma. Methods Data from the follow-up of a co-produced community-based Long Covid online survey using convenience non-probability sampling was used. Thirteen questions on stigma were designed to develop the LCSS capturing three domains-enacted (overt experiences of discrimination), internalised (internalising negative associations with Long Covid and accepting them as self-applicable) and anticipated (expectation of bias/poor treatment by others) stigma. Confirmatory factor analysis tested whether LCSS consisted of the three hypothesised domains. Model fit was assessed and prevalence was calculated. Results 966 UK-based participants responded (888 for stigma questions), with mean age 48 years (SD: 10.7) and 85% female. Factor loadings for enacted stigma were 0.70-0.86, internalised 0.75-0.84, anticipated 0.58-0.87, and model fit was good. The prevalence of experiencing stigma at least 'sometimes' and 'often/always' was 95% and 76% respectively. Anticipated and internalised stigma were more frequently experienced than enacted stigma. Those who reported having a clinical diagnosis of Long Covid had higher stigma prevalence than those without. Conclusion This study establishes a scale to measure Long Covid stigma and highlights common experiences of stigma in people living with Long Covid.

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Accepted/In Press date: 24 October 2022
Published date: 23 November 2022
Additional Information: Publisher Copyright: © 2022 Pantelic et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.

Identifiers

Local EPrints ID: 469481
URI: http://eprints.soton.ac.uk/id/eprint/469481
ISSN: 1932-6203
PURE UUID: 6f68d054-0805-4ff5-8cb2-f5d5514873bd
ORCID for Nida Ziauddeen: ORCID iD orcid.org/0000-0002-8964-5029
ORCID for Nisreen Alwan: ORCID iD orcid.org/0000-0002-4134-8463

Catalogue record

Date deposited: 15 Sep 2022 16:45
Last modified: 06 Jan 2023 03:00

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Contributors

Author: Marija Pantelic
Author: Nida Ziauddeen ORCID iD
Author: Mark Boyes
Author: Margaret E. O'Hara
Author: Claire Hastie
Author: Nisreen Alwan ORCID iD

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