Tag: social stigma

Social Stigma in Children with Long COVID

Abstract:

There is growing evidence that adults with Long COVID suffer from different sets of stigmata related to their condition. In children with Long COVID, this aspect has never been investigated. This study aims to investigate if children with Long COVID also experience stigma.
Methods: Children with a previous SARS-CoV-2 infection evaluated at 3 month follow-ups in a pediatric post COVID unit were asked to fill in an online Long COVID Stigma Scale survey before they were assessed by a pediatrician. Doctors were unaware of children’s responses when they performed a diagnosis of Long COVID or full recovery from previous infection, according to the World Health Organization definition of pediatric Long COVID. Responses to the Stigma scale were then compared in the two cohorts of children.
Results: 224 patients responded to the questionnaire; 40 patients were diagnosed with Long COVID. Children with Long COVID significantly more frequently felt embarrassed about having Long COVID (p 0.035), felt embarrassed about having physical limitations (p < 0.001), felt they were valued less due to Long COVID (p 0.003), felt they were different from other peers due to Long COVID (p 0.033), felt significantly more frequently that people behaved differently towards them because they might be lying since the diagnosis of Long COVID (p 0.006), that they were less respected by others due to Long COVID (p 0.017), that other people thought that Long COVID is not a real disease (p 0.007), that other people thought that developing Long COVID is a sign of weakness (p 0.008), and that other people might judge them negatively due to their diagnosis of Long COVID (p < 0.001).
Conclusions: Children with Long COVID, similar to adults, are suffering from stigmata due to their condition. These data may have implication and should be used by the public, policy makers, and healthcare professionals regarding pediatric Long COVID.
Source: Buonsenso D, Camporesi A, Morello R, De Rose C, Fracasso M, Chieffo DPR, Valentini P. Social Stigma in Children with Long COVID. Children. 2023; 10(9):1518. https://doi.org/10.3390/children10091518 https://www.mdpi.com/2227-9067/10/9/1518 (Full text)

The prevalence of stigma in a UK community survey of people with lived experience of long COVID

Abstract:

Background: Stigma can be experienced as perceived or actual disqualification from social and institutional acceptance on the basis of one or more physical, health-related, behavioural, or other attributes deemed to be undesirable. Long COVID is a predominantly multisystem condition that occurs in people with a history of SARS-CoV-2 infection, often resulting in functional disability, which limits day-to-day activities. We aimed to quantify the burden of stigma experienced in a community-based sample of people with lived experience of long COVID.

Methods: Data from the follow-up of a long COVID longitudinal online survey was used. The survey was coproduced with people living with long COVID. 13 questions on stigma were included to develop a Long COVID Stigma Scale capturing three domains: enacted (overt experiences of discrimination due to long COVID), internalised (internalising negative associations with long COVID and accepting them as self-applicable), and anticipated (expectation of bias or poor treatment by others) stigma. Data were collected through a social media survey with convenience non-probability sampling.

Findings: 966 (47·9%) of 2016 participants from the UK completed the follow-up survey and 888 responded to the questions on stigma. The mean age of respondents was 48·3 years (SD 10·7), and 84·6% identified as female. Roughly half (n=460, 50·4%) reported having a formal, clinical, long COVID diagnosis, and of these, 440 responded to the questions on stigma. The prevalence of people experiencing overall stigma at least sometimes was 95·4% (n=847), prevalence of enacted stigma was 62·7% (n=557), internalised stigma was 86·4% (n=767), and anticipated stigma was 90·8% (n=806). Prevalence of stigma was higher in respondents with a formal diagnosis of long COVID (97·5%; n=429) than in those without (93·2%; n=413).

Interpretation: This study highlights widespread and multilayered stigmas experienced by people living with long COVID in the UK, which presents a serious public health concern. The broader literature on stigmatised health conditions consistently suggests that stigma drives people away from health services, contributes to psychological distress, and compromises long-term physical outcomes. The higher proportion experiencing stigma in those with clinical diagnosis of long COVID might be indicative of stigma within the health-care system. Findings from this study should be taken into consideration within clinical practice and health care, social care, employment, and education policies.

Source: Pantelic M, Ziauddeen N, Boyes M, O’Hara ME, Hastie C, Alwan NA. The prevalence of stigma in a UK community survey of people with lived experience of long COVID. Lancet. 2022 Nov;400 Suppl 1:S84. doi: 10.1016/S0140-6736(22)02294-2. Epub 2022 Nov 24. PMID: 36930033. https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(22)02294-2/fulltext

Social Stigma, Mental Health, Stress, and Health-Related Quality of Life in People with Long COVID

Abstract:

A considerable amount of people who have been infected with SARS-CoV-2 experience ongoing symptoms, a condition termed long COVID. This study examined nuanced experiences of social stigma in people with long COVID and their associations with perceived stress, depressive symptoms, anxiety, and mental and physical health-related quality of life (hrqol).
A total of N = 253 participants with long COVID symptoms (mean age = 45.49, SD = 12.03; n = 224, 88.5% women) completed a cross-sectional online survey on overall social stigma and the subfacets enacted and perceived external stigma, disclosure concerns, and internalized stigma. Data were analysed using multiple regression and controlling for overall burden of consequences of long COVID, overall burden of symptoms of long COVID, and outcome-specific confounders.
In line with our preregistered hypotheses, total social stigma was related to more perceived stress, more depressive symptoms, higher anxiety, and lower mental hrqol, but—in contrast to our hypothesis—it was unrelated to physical hrqol after controlling for confounders. The three subscales of social stigma resulted in differential associations with the outcomes.
Social stigma experiences go hand in hand with worse mental health in people with long COVID. Future studies should examine potential protective factors to buffer the effects of social stigma on people’s well-being.
Source: Scholz U, Bierbauer W, Lüscher J. Social Stigma, Mental Health, Stress, and Health-Related Quality of Life in People with Long COVID. International Journal of Environmental Research and Public Health. 2023; 20(5):3927. https://doi.org/10.3390/ijerph20053927. https://www.mdpi.com/1660-4601/20/5/3927 (Full text)