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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.

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.

SUBMITTER: Kelly JD

PROVIDER: S-EPMC6411197 | biostudies-literature | 2019 Feb

REPOSITORIES: biostudies-literature

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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 JD Weiser Sheri D SD Wilson Barthalomew B Cooper Joseph B JB Glayweon Meekie M Sneller Michael C MC Drew Clara C Steward Wayne T WT Reilly Cavan C Johnson Kumblytee K Fallah Mosoka P MP

PLoS neglected tropical diseases 20190227 2

<h4>Background</h4>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.<h4>Methods and findings</h4>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 Inde ...[more]

PMID: 30811388

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Project description:The Ebola virus disease epidemic between 2013 and 2016 in West Africa was unprecedented. It resulted in approximately 28.000 cases and 10.000 Ebola survivors. Many survivors face social, economic and health-related predicaments and media reporting is crucially important in infectious disease outbreaks. However, there is little research on reporting of the social situation of Ebola survivors in Liberia.The study used a mixed methods approach and analysed media reports from the Liberian Daily Observer (DOL), a daily newspaper available online in English. We were interested to know how the situation of Ebola survivors was portrayed; in what way issues such as stigma and discrimination were addressed; and which stigma reduction interventions were covered and how. We included all articles on the situation of Ebola survivors in the quantitative and in-depth qualitative analysis published between April 2014 and March 2016.The DOL published 148 articles that portrayed the social situation of Ebola survivors between the 24 months observation period. In these articles, Ebola survivors were often defined beyond biological terms, reflecting on a broader social definition of survivorship. Survivorship was associated with challenges such as suffering from after-effects, social and economic consequences and psychological distress. Almost 50% of the articles explicitly mentioned stigmatisation in their reporting on Ebola survivors. This was contextualised in untrustworthiness towards international responses and the local health care system and inconclusive knowledge on cures and transmission routes. In the majority of DOL articles stigma reduction and engaging survivors in the response was reported as crucially important.Reporting in the DOL was educational-didactical and well-balanced in terms of disseminating available medical knowledge and reflecting the social situation of Ebola survivors. While the articles contextualised factors contributing to stigmatisation throughout the reporting, journalistic scrutiny regarding effectiveness of interventions by government and NGOs was missing.

Project description:BackgroundDuring the 2014-15 Ebola Virus Disease (EVD) epidemic, thousands of people in Sierra Leone were infected with the devastating virus and survived. Years after the epidemic was declared over, stigma toward EVD survivors and others affected by the virus is still a major concern, but little is known about the factors that influence stigma toward survivors. This study examines how key personal and ecological factors predicted EVD-related stigma at the height of the 2014-2015 epidemic in Sierra Leone, and the personal and ecological factors that shaped changes in stigma over time.MethodsUsing three waves of survey data from a representative sample in the Western Urban and Western Rural districts of Sierra Leone, this study examines factors associated with self-reported personal stigma toward Ebola survivors (11 items, α = 0.77) among 1008 adults (74.6% retention rate) from 63 census enumeration areas of the Western Rural and Western Urban districts of Sierra Leone. Participants were randomly sampled at the height of the EVD epidemic and followed up as the epidemic was waning and once the epidemic had been declared over by the WHO. Three-level mixed effects models were fit using Stata 16 SE to examine cross-sectional associations as well as predictors of longitudinal changes in stigma toward EVD survivors.ResultsAt the height of the EVD epidemic, female sex, household wealth, post-traumatic stress, EVD-related fear and perceived infection risk are a few of the factors which predicted higher levels of stigma toward survivors. On average, stigma toward EVD survivors decreased significantly as the epidemic declined in Sierra Leone, but female sex, EVD fear, and risk perceptions predicted a slower rate of change.ConclusionThis study identified key individual and psychosocial characteristics which may predict higher levels of stigma toward infectious disease survivors. Future studies should pursue a better understanding of how personal characteristics and perceptions, including psychosocial distress, fear, and perceived infection risk serve as pathways for stigma in communities affected by infectious disease.

Project description:OBJECTIVES:To describe the prevalence and correlates of depression and anxiety among adult Ebola virus disease (EVD) survivors in Liberia, Sierra Leone and Guinea. DESIGN:Cross-sectional. SETTING:One-on-one surveys were conducted in EVD-affected communities in Liberia, Sierra Leone and Guinea in early 2018. PARTICIPANTS:1495 adult EVD survivors (726 male, 769 female). PRIMARY AND SECONDARY OUTCOME MEASURES:Patient Health Questionnaire-9 (PHQ-9) depression scores and Generalised Anxiety Disorder-7 (GAD-7) scores. RESULTS:Prevalence and severity of depression and anxiety varied across the three countries. Sierra Leone had the highest prevalence of depression, with 22.0% of participants meeting the criteria for a tentative diagnosis of depression, compared with 20.2% in Liberia and 13.0% in Guinea. Sierra Leone also showed the highest prevalence of anxiety, with 10.7% of participants meeting criteria for generalized anxiety disorder (GAD-7 score ?10), compared with 9.9% in Liberia and 4.2% in Guinea. Between one-third and one-half of respondents reported little interest or pleasure in doing things in the previous 2?weeks (range: 47.0% in Liberia to 37.6% in Sierra Leone), and more than 1 in 10 respondents reported ideation of self-harm or suicide (range: 19.4% in Sierra Leone to 10.4% in Guinea). Higher depression and anxiety scores were statistically significantly associated with each other and with experiences of health facility-based stigma in all three countries. Other associations between mental health scores and respondent characteristics varied across countries. CONCLUSIONS:Our results indicate that both depression and anxiety are common among EVD survivors in Liberia, Sierra Leone and Guinea, but that there is country-level heterogeneity in prevalence, severity and correlates of these conditions. All three countries should work to make mental health services available for survivors, and governments and organisations should consider the intersection between EVD-related stigma and mental health when designing programmes and training healthcare providers.

Project description:BackgroundViral load in patients with Ebola virus disease affects case fatality rate and is an important parameter used for diagnostic cutoffs, stratification in randomised controlled trials, and epidemiological studies. However, viral load in Ebola virus disease is currently estimated using numerous different assays and protocols that were not developed or validated for this purpose. Here, our aim was to conduct a laboratory-based re-evaluation of the viral loads of a large cohort of Liberian patients with Ebola virus disease and analyse these data in the broader context of the west Africa epidemic.MethodsIn this retrospective observational study, whole blood samples from patients at the Eternal Love Winning Africa Ebola treatment unit (Monrovia, Liberia) were re-extracted with an optimised protocol and analysed by droplet digital PCR (ddPCR) using a novel semi-strand specific assay to measure viral load. To allow for more direct comparisons, the ddPCR viral loads were also back-calculated to cycle threshold (Ct) values. The new viral load data were then compared with the Ct values from the original diagnostic quantitative RT-PCR (qRT-PCR) testing to identify differing trends and discrepancies.FindingsBetween Aug 28 and Dec 18, 2014, 727 whole blood samples from 528 individuals were collected. 463 (64%) were first-draw samples and 409 (56%) were from patients positive for Ebola virus (EBOV), species Zaire ebolavirus. Of the 307 first-draw EBOV-positive samples, 127 (41%) were from survivors and 180 (59%) were from non-survivors; 155 (50%) were women, 145 (47%) were men, and seven (2%) were not recorded, and the mean age was 29·3 (SD 15·0) years for women and 31·8 (SD 14·8) years for men. Survivors had significantly lower mean viral loads at presentation than non-survivors in both the reanalysed dataset (5·61 [95% CI 5·34-5·87] vs 7·19 [6·99-7·38] log10 EBOV RNA copies per mL; p<0·0001) and diagnostic dataset (Ct value 28·72 [27·97-29·47] vs 26·26 [25·72-26·81]; p<0·0001). However, the prognostic capacity of viral load increased with the reanalysed dataset (odds ratio [OR] of death 8·06 [95% CI 4·81-13·53], p<0·0001 for viral loads above 6·71 log10 EBOV RNA copies per mL vs OR of death 2·02 [1·27-3·20], p=0·0028 for Ct values below 27·37). Diagnostic qRT-PCR significantly (p<0·0001) underestimated viral load in both survivors and non-survivors (difference in diagnostic Ct value minus laboratory Ct value of 1·79 [95% CI 1·16-2·43] for survivors and 5·15 [4·43-5·87] for non-survivors). Six samples that were reported negative by diagnostic testing were found to be positive upon reanalysis and had high viral loads.InterpretationInaccurate viral load estimation from diagnostic Ct values is probably multifactorial; however, unaddressed PCR inhibition from tissue damage in patients with fulminant Ebola virus disease could largely account for the discrepancies observed in our study. Testing protocols for Ebola virus disease require further standardisation and validation to produce accurate viral load estimates, minimise false negatives, and allow for reliable epidemiological investigation.FundingIntramural Research Program of the National Institute of Allergy and Infectious Diseases, National Institutes of Health.

Project description:BACKGROUND:Hygiene promotion is a cornerstone of humanitarian response during infectious disease outbreaks. Despite this, we know little about how humanitarian organisations design, deliver or monitor hygiene programmes, or about what works to change hygiene behaviours in outbreak settings. This study describes humanitarian perspectives on changing behaviours in crises, through a case study of hygiene promotion during the 2014-2016 Liberian Ebola outbreak. Our aim was to aid better understanding of decision making in high-stress situations where there is little precedent or evidence, and to prompt reflection within the sector around how to improve and support this. METHODS:We conducted in-depth, semi-structured interviews with fourteen purposively-sampled individuals (key informants) from international organisations involved in hygiene behaviour change during the outbreak. Through thematic analysis we identified the decisions that were made and processes that were followed to design, deliver and monitor interventions. We compared our findings with theory-driven processes used to design behaviour change interventions in non-outbreak situations. RESULTS:Humanitarians predominantly focussed on providing hygiene products (e.g. buckets, soap, gloves) and delivering messages through posters, radio and community meetings. They faced challenges in defining which hygiene behaviours to promote. Assessments focused on understanding infrastructural needs, but omitted systematic assessments of hygiene behaviours or their determinants. Humanitarians assumed that fear and disease awareness would be the most powerful motivators for behaviour change. They thought that behaviour change techniques used in non-emergency settings were too 'experimental', and were beyond the skillset of most humanitarian actors. Monitoring focussed on inputs and outputs rather than behavioural impact. CONCLUSIONS:The experiences of humanitarians allowed us to identify areas that could be strengthened when designing hygiene programmes in future outbreaks. Specifically, we identified a need for rapid research methods to explore behavioural determinants; increased skills training for frontline staff, and increased operational research to explore behaviour change strategies that are suited to outbreak situations.

Project description:In the Ebola Virus Disease (EVD) outbreak in Liberia, two major emergency disease-control measures were cremation of bodies and enforcement of quarantine for asymptomatic individuals suspected of being in contact with a positive case. Enforced by State-related actors, these were promoted as the only method to curtail transmissions as soon as possible. However, as with other harsh measures witnessed by Liberian citizens, in many cases those measures elicited uncontrolled negative reactions within the communities (stigma; fear) that produced, in some cases, the opposite effect of that intended.The research has been conducted in two phases, for a total of 8 weeks. Ethnography of local practices was carried out in 7 neighbourhoods in Monrovia and 5 villages in Grand Cape Mount County in Liberia. 45 Focus Group Discussions (432 participants) and 30 semi-structured interviews sustained the observing participation. Randomly selected people from different social layers were targeted. The principal investigator worked with the help of two local assistants. Perceptions and practices were both analysed.Participants stressed how cremation perpetuated the social breakdown that started with the isolation for the sickness. Socio-economical divides were created by inequitable management of the dead: those who could bribe the burial teams obtained a burial in a private cemetery or the use of Funeral Homes. Conversely, those in economic disadvantage were forced to send their dead for cremation. State-enforced quarantine, with a mandatory prohibition of movement, raised condemnation, strengthened stigmatization and created serious socio-economic distress. Food was distributed intermittently and some houses shared latrines with non-quarantined neighbours. Escapes were also recorded. Study participants narrated how they adopted local measures of containment, through local task forces and socially-rooted control of outsiders. They also stressed how information that was not spread built up rumours and suspicion.Populations experiencing an epidemic feel a high degree of social insecurity, in addition to the health hazards. Vertical and coercive measures increase mistrust and fear, producing a counter-productive effect in the containment of the epidemic. On the other hand, local communities show a will to be engaged and a high degree of flexibility in participating to the epidemic response. Efforts in the direction of awareness and community involvement could prove to be better strategy to control the epidemic and root the response on social participation.

Dataset Information

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

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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.

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