Long Covid stigma: estimating burden and validating scale in a UK-based sample, 2022, Pantelic et al

Edit: Now published, see post #4 in this thread.

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.

Aim: To develop and validate a Long Covid Stigma Scale (LCSS); and to quantify the burden of Long Covid stigma. Design and Setting: Follow-up of a co-produced community-based Long Covid online survey using convenience non-probability sampling.

Method: 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.

https://www.medrxiv.org/content/10.1101/2022.05.26.22275585v1

 

Source and Twitter thread

 

Good to see papers coming out on this, especially important to understand problems accessing health services (medical and mental health). Internalised and externalised stigma with other factors like lack of social and practical support are often some of the complex factors involved in suicidality and completed suicide.

 

Now published.

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.

Open access, https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0277317

 

Remarkably, and predictably, this is being covered with zero reporting of how the discrimination (not stigma, this is discrimination) is the same for us, for the exact same reasons. I've seen an article mentioning other discriminated illnesses, still avoided mentioning us. It was a UK publication, the origin of most of this ugly discrimination. Even the same offensive nonsense, without surprise, as this is the same thing.

It certainly helps that although this study mentions it used tools applied to us, it doesn't make the connection that the discrimination against Long Covid isn't just similar to ours, it's the exact same, for the same reasons, even the same people.

Hence why the discrimination is ongoing, not just for us pwME but for all of us. What a horribly broken system that clearly escalates commitment to failure before it will acknowledge having done harm, no matter the scale of the harm, no matter how much precedent it has.

For the follow up survey, thirteen questions on stigma were designed following the Health Stigma and Discrimination Framework [2] to capture three dimensions/domains: enacted (5 items), internalised (4 items), and anticipated (4 items). Questions were based on existing scales related to other stigmatised chronic conditions including Myalgic Encephalomyelitis/Chronic fatigue syndrome (ME/CFS) and HIV [17–20], emerging qualitative evidence on Long Covid stigma [9], and co-production with and feedback from people living with Long Covid. Response options were offered on a 5-point Likert scale: never, rarely, sometimes, often, and always, coded 0–4.​

 

Merged thread
Researchers said the stigma around the virus adds more stress to people already dealing with the complications of an enduring illness, can threaten relationships and make it harder for a patient to heal.

https://www.healthing.ca/diseases-and-conditions/coronavirus/long-covid-stigma-study

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

https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0277317