Ebola virus disease-related stigma among survivors declined in Liberia over an 18-month, post-outbreak period: An observational cohort study

Background: While qualitative assessments of Ebola virus disease (EVD)-related stigma have been undertaken among survivors and the general public, quantitative tools and assessment targeting survivors have been lacking. Methods and findings: Beginning in June 2015, EVD survivors from seven Liberian counties, where most of the country’s EVD cases occurred, were eligible to enroll in a longitudinal cohort. Seven stigma questions were adapted from the People Living with HIV Stigma Index and asked to EVD survivors over the age of 12 at initial visit (median 358 days post-EVD) and 18 months later. Primary outcome was a 7-item EVD-related stigma index. Explanatory variables included age, gender, educational level, pregnancy status, post-EVD hospitalization, referred to medical care and EVD source. Proportional odds logistic regression models and generalized linear mixed-effects models were used to assess stigma at initial visit and over time. The stigma questions were administered to 859 EVD survivors at initial visit and 741 (86%) survivors at follow-up. While 63% of survivors reported any stigma at initial visit, only 5% reported any stigma at follow-up. Over the 18-month period, there was a significant decrease in stigma among EVD survivors (Adjusted Odds Ratio [AOR], 0.02; 95% Confidence Interval [CI], 0.01–0.04). At initial visit, having primary, junior high or vocational education, and being referred to medical care was associated with higher odds of stigma (educational level: AOR, 1.82; 95%CI, 1.27–2.62; referred: AOR, 1.50; 95%CI, 1.16–1.94). Compared to ages of 20–29, those who had ages of 12–19 or 50+ experienced lower odds of stigma (12–19: AOR, 0.32; 95%CI, 0.21–0.48; 50+: AOR, 0.58 95%CI, 0.37–0.91). Conclusions: Our data suggest that EVD-related stigma was much lower more than a year after active Ebola transmission ended in Liberia. Among survivors who screened negative for stigma, additional probing may be considered based on age, education, and referral to care. Author summary: Survivors of Ebola virus disease (EVD) experienced stigma throughout the 2013–2016 West African outbreak, but post-outbreak experiences of EVD-related stigma have been limited to qualitative studies. We adapted a 7-item EVD-related stigma index from the HIV literature, which was administered to EVD survivors of the observational cohort, Ebola Natural History Study, in Liberia beginning in June 2015. While 63% of 859 EVD survivors reported any EVD-related stigma during the end of the outbreak in Liberia, only 5% of 741 survivors reported any stigma 18-months post-outbreak, suggesting that survivors experienced little to no EVD-related stigma in the absence of active Ebola virus transmission. Among survivors who screened negative for stigma, additional probing may be considered based on age, education, and referral to care.