Ebola virus disease-related stigma among survivors declined in Liberia over an 18-month, post-outbreak period

An observational cohort study

J. Daniel Kelly, Sheri D. Weiser, Barthalomew Wilson, Joseph B. Cooper, Meekie Glayweon, Michael C. Sneller, Clara Drew, Wayne T. Steward, Cavan S Reilly, Kumblytee Johnson, Mosoka P. Fallah

Research output: Contribution to journalArticle

Abstract

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.

Original languageEnglish (US)
Article numbere0007185
JournalPLoS neglected tropical diseases
Volume13
Issue number2
DOIs
StatePublished - Feb 1 2019

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Ebola Hemorrhagic Fever
Liberia
Observational Studies
Disease Outbreaks
Cohort Studies
Odds Ratio
Confidence Intervals
Vocational Education
Logistic Models

PubMed: MeSH publication types

  • Journal Article
  • Observational Study
  • Research Support, N.I.H., Extramural

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Ebola virus disease-related stigma among survivors declined in Liberia over an 18-month, post-outbreak period : An observational cohort study. / Kelly, J. Daniel; Weiser, Sheri D.; Wilson, Barthalomew; Cooper, Joseph B.; Glayweon, Meekie; Sneller, Michael C.; Drew, Clara; Steward, Wayne T.; Reilly, Cavan S; Johnson, Kumblytee; Fallah, Mosoka P.

In: PLoS neglected tropical diseases, Vol. 13, No. 2, e0007185, 01.02.2019.

Research output: Contribution to journalArticle

Kelly, JD, Weiser, SD, Wilson, B, Cooper, JB, Glayweon, M, Sneller, MC, Drew, C, Steward, WT, Reilly, CS, Johnson, K & Fallah, MP 2019, 'Ebola virus disease-related stigma among survivors declined in Liberia over an 18-month, post-outbreak period: An observational cohort study', PLoS neglected tropical diseases, vol. 13, no. 2, e0007185. https://doi.org/10.1371/journal.pntd.0007185
Kelly, J. Daniel ; Weiser, Sheri D. ; Wilson, Barthalomew ; Cooper, Joseph B. ; Glayweon, Meekie ; Sneller, Michael C. ; Drew, Clara ; Steward, Wayne T. ; Reilly, Cavan S ; Johnson, Kumblytee ; Fallah, Mosoka P. / Ebola virus disease-related stigma among survivors declined in Liberia over an 18-month, post-outbreak period : An observational cohort study. In: PLoS neglected tropical diseases. 2019 ; Vol. 13, No. 2.
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abstract = "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.",
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T1 - Ebola virus disease-related stigma among survivors declined in Liberia over an 18-month, post-outbreak period

T2 - An observational cohort study

AU - Kelly, J. Daniel

AU - Weiser, Sheri D.

AU - Wilson, Barthalomew

AU - Cooper, Joseph B.

AU - Glayweon, Meekie

AU - Sneller, Michael C.

AU - Drew, Clara

AU - Steward, Wayne T.

AU - Reilly, Cavan S

AU - Johnson, Kumblytee

AU - Fallah, Mosoka P.

PY - 2019/2/1

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N2 - 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.

AB - 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.

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