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

  1. Marija Pantelic
  2. Nida Ziauddeen
  3. Mark Boyes
  4. Margaret E. O’Hara
  5. Claire Hastie
  6. Nisreen A. Alwan

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Abstract

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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  1. Version published to 10.1371/journal.pone.0277317
  2. ScreenIT

    SciScore for 10.1101/2022.05.26.22275585: (What is this?)

    Please note, not all rigor criteria are appropriate for all manuscripts.

    Table 1: Rigor

    EthicsConsent: Participants provided informed consent (recorded digitally on the survey platforms).
    Sex as a biological variablenot detected.
    Randomizationnot detected.
    Blindingnot detected.
    Power Analysisnot detected.

    Table 2: Resources

    No key resources detected.

    Results from OddPub: We did not detect open data. We also did not detect open code. Researchers are encouraged to share open data when possible (see Nature blog).

    Results from LimitationRecognizer: We detected the following sentences addressing limitations in the study:
    Strengths and limitations: LCSS was informed by theory and other stigma scales, co-designed with people with Long Covid and validated in a large UK sample, and takes less than 10 minutes to complete. This study has two notable limitations. First, the convenience non-probability sampling limits generalisability: university-educated white women from England are over-represented, and this may have resulted in an under- or over-estimation of Long Covid stigma. Women and ethnic minorities may be more stigmatised by other similar conditions such as ME/CFS or fibromyalgia(39), though there is little quantitative evidence to support this. The survey did not include patients hospitalised with COVID-19 in the first two weeks of illness, indicating severe acute disease. Stigma levels could be higher in this group as they may have a higher prevalence of prolonged ongoing symptoms(40), or could be lower due to legitimisation of their illness given by the severity of its acute stage. However, the community sample renders this study unique within a largely clinical evidence-base where diagnostic coding for Long Covid remains patchy and inconsistent due to varying knowledge and the absence of specific guidelines(41). The social media recruitment strategy aimed to include an underrepresented group of people living with Long Covid – those not actively engaged with the healthcare system. Second, stigma is a non-pathological construct and measurements do not have standardised diagnostic criteria...

    Results from TrialIdentifier: No clinical trial numbers were referenced.

    Results from Barzooka: We did not find any issues relating to the usage of bar graphs.

    Results from JetFighter: We did not find any issues relating to colormaps.

    Results from rtransparent:
    • Thank you for including a conflict of interest statement. Authors are encouraged to include this statement when submitting to a journal.
    • Thank you for including a funding statement. Authors are encouraged to include this statement when submitting to a journal.
    • Thank you for including a protocol registration statement.

    Results from scite Reference Check: We found no unreliable references.

    About SciScore

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  3. Version published to 10.1101/2022.05.26.22275585v1 on medRxiv