Stigma and Ebola survivorship in Liberia: Results from a longitudinal cohort study

Abstract

BackgroundSurvivors of the 2014–2016 West Africa Ebola epidemic have been reported to suffer high levels of stigmatization after return to their communities. We sought to characterize the stigma encountered by a cohort of Ebola survivors in Liberia over time.MethodsEbola-related stigma was assessed from June 2015 to August 2017 in 299 adolescent and adult Liberian Ebola Survivor Cohort participants at three month intervals using adapted HIV stigma scales scored from 0 to 10 according to the proportion of answers indicating stigmatization.FindingsThe median time from Ebola Virus Disease (EVD) to study entry was 393 days (IQR 336–492). Participants (43% female) had a median age of 31 (IQR 25–40) years. Mean self-reported stigma levels were greater at baseline (6.28 ± 0.15 [IQR: 4.38–8.75]) compared to the first post-baseline visit (0.60 ± 0.10 [IQR: 0–0]; p<0.0001). During follow-up, stigma levels were stable. Baseline stigma significantly increased during enrollment and following clusters of Ebola re-emergence in Liberia. Survivors encountered primarily enacted and perceived external stigma rather than internalized stigma.ConclusionsEbola-related stigma was prevalent among Liberian survivors more than a year after EVD recovery. Self-reported stigma was greater in the period before cohort enrollment; however, some degree of stigmatization persisted years after EVD. Transient rises in stigma were observed following episodic Ebola re-emergence of EVD in Liberia. During future EVD outbreaks, enhanced public health interventions designed to prevent and mitigate Ebola-related stigma that is enacted and external should be implemented to support survivor recovery and community re-integration.

An assessment of Ebola-related stigma and its association with informal healthcare utilisation among Ebola survivors in Sierra Leone: a cross-sectional study

“…Our result identifies higher occurrence of internalised stigma when compared with the occurrence of total enacted stigma experienced by EVD survivors. Our result contrasts to findings reported in a Liberian longitudinal cohort study that employed a different stigma instrument [23] but is in line with a South African study that employed the same stigma tool to measure stigma among HIV/AIDS patients to that employed in our study [50]. The higher frequency of internalised stigma (negative self-perception) among EVD survivors in our study is a cause for concern and warrants further research attention as it can lead to low self-esteem, low self-efficacy, loss of hope for the future and can interfere with life goal achievement [51].…”

“…This is the first nationally representative study to determine the prevalence of stigma, its sociodemographic correlates and association with informal and nonintegrated forms of health care such as T&CM use among EVD survivors in Sierra Leone. One key finding from our study is that EVD survivors report high levels of internalised and enacted stigma since discharge from an Ebola treatment centre which is in line with findings from a longitudinal Liberian study that reported high levels of stigma at baseline but lower levels at subsequent follow-up visits [21,23]. Our finding also resonates with similar short term and smaller sample size cross-sectional studies in Sierra Leone [24,25,48], Liberia [20], Guinea [49], and DR Congo [19,40],which reported that EVD survivors experience several forms of internalised and enacted stigma.…”

“…Other factors, which have been reported as predictors of EVD-related stigma, are age, level of education, and having accessed medical care [21]. Liberian research also suggests EVD survivors are reported to be more likely to experience stigma compared to their close contacts who were not infected with EVD virus [22] however the degree of EVD-related stigma may decline among survivors over time [21,23]. In Sierra Leone, stigmatisation is reported in approximately one third of EVD survivors [24,25].…”

A Review of Hearing Loss Associated with Zika, Ebola, and Lassa Fever

“…Of the 3,385 individuals studied, 223 (6.6%) were found to have some degree of HL using audiometric evaluation and survey instruments. 19,[36][37][38][39][40][41][42][43][44][45][46][47][48][49][50][51][52][53][54][55] Only one of 21 articles used audiometry to objectively measure HL. This study, by Rowe et al, 19 recruited convalescent Ebola survivors and household contacts following the conclusion of the 1995 Ebola outbreak in Kikwit, DRC.…”

Validation of a modified Berger HIV stigma scale for use among patients with hepatitis C virus (HCV) infection

“…To address this knowledge gap, we revised the Berger HIV Stigma Scale (Berger-HSS) [35] to evaluate stigma associated with HCV infection. The Berger-HSS is a widely used measure of HIV stigma, which has been externally validated across HIV-infected patient populations within and outside of the US, [36][37][38][39][40][41][42][43][44][45][46][47] as well as adapted for use among non-HIV patient populations [48,49]. We hypothesized that the revised HCV Stigma Scale would have good validity and reliability among patients with HCV infection due to similarities with HIV in modes of transmission and risk factors.…”