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

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.

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

“…A. met multiple times to discuss potential themes. The LCSS informed the creation of themes related to experiences of enacted, anticipated and internalised stigma 20 . A thematic framework was developed in light of the findings and agreed upon before drafting this paper.…”

Risk of new-onset Long Covid following reinfection with SARS-CoV-2: community-based cohort study

“…Another limitation is that Long Covid status was self-reported, so outcome misclassification is possible. Some participants may have been experiencing symptoms because of a health condition unrelated to COVID-19, while others who did have Long Covid may not have described themselves as such (for example, due to the perceived stigma associated with the condition [23]). Conversely, selfrecognition of Long Covid (participants' perception of the change in their own health compared with pre-infection) may be more reliable than electronic health records in some respects, for example due to differences in healthcare-seeking behaviours between socio-demographic groups and Long Covid diagnoses being underrecorded in primary care [24].…”

Employment outcomes of people with Long Covid symptoms: community-based cohort study

“…We tested for effect modification by socio-demographic characteristics (age, sex, ethnicity, underlying health/disability status, and area deprivation) at CIS enrolment. We also tested for heterogeneity by SARS-CoV-2 reinfection status at each follow-up assessment (using a pre-defined classification based on time since first positive swab and number of successive negative tests [16]), which may be associated with changes in Long Covid severity; and by mode of data collection to allow for differential exposure misclassification (CIS participants were 30% more likely to report Long Covid symptoms if responding remotely rather than face-to-face [17], perhaps due to stigma associated with the condition [18]). It was possible to test for effect modification by labour market attributes (employment sector, SOC Major Group, self-employment status) for long-term absence but not for economic inactivity, as these attributes can only be defined for people who are in work.…”