Tom Decroo

INTRODUCTION: 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. METHODOLOGY: 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. RESULTS: 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. CONCLUSIONS: 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.

BACKGROUND: As antiretroviral treatment cohorts continue to expand, ensuring patient retention over time is an increasingly important concern. This, together with capacity and human resource constraints, has led to the consideration of out-of-clinic models for the delivery of antiretroviral therapy (ART). In 2008, Médecins Sans Frontières and the Provincial authorities launched a model of ART distribution and adherence monitoring by community groups in Tete Province, Mozambique. PROGRAMME APPROACH: Patients who were stable on ART for 6 months were informed about the community ART group model and invited to form groups. Group members had 4 key functions: facilitate monthly ART distribution to other group members in the community, provide adherence and social support, monitor outcomes, and ensure each group member undergoes a clinical consultation at least once every 6 months. Group members visit the health centre on a rotational basis, such that each group member has contact with the health service every 6 months. RESULTS: Between February 2008 and May 2010, 1384 members were enrolled into 291 groups. Median follow-up time within a group was 12.9 months (IQR 8.5-14.1). During this time, 83 (6%) were transferred out, and of the 1301 patients still in community groups, 1269 (97.5%) were remaining in care, 30 (2%) had died, and 2 (0.2%) were lost to follow-up. DISCUSSION: The Community ART Group model was initiated by patients to improve access, patient retention, and decongest health services. Early outcomes are highly satisfactory in terms of mortality and retention in care, lending support to such out-of-clinic approaches.

In sub-Saharan Africa models of care need to adapt to support continued scale up of antiretroviral therapy (ART) and retain millions in care. Task shifting, coupled with community participation has the potential to address the workforce gap, decongest health services, improve ART coverage, and to sustain retention of patients on ART over the long-term. The evidence supporting different models of community participation for ART care, or community-based ART, in sub-Saharan Africa, was reviewed. In Uganda and Kenya community health workers or volunteers delivered ART at home. In Mozambique people living with HIV/AIDS (PLWHA) self-formed community-based ART groups to deliver ART in the community. These examples of community ART programs made treatment more accessible and affordable. However, to achieve success some major challenges need to be overcome: first, community programs need to be driven, owned by and embedded in the communities. Second, an enabling and supportive environment is needed to ensure that task shifting to lay staff and PLWHA is effective and quality services are provided. Finally, a long term vision and commitment from national governments and international donors is required. Exploration of the cost, effectiveness, and sustainability of the different community-based ART models in different contexts will be needed.

INTRODUCTION: A consequence of the West Africa Ebola outbreak 2014-2015 was the unprecedented number of Ebola survivors discharged from the Ebola Treatment Units (ETUs). Liberia alone counted over 5,000 survivors. We undertook a qualitative study in Monrovia to better understand the mental distress experienced by survivors during hospitalization and reintegration into their community. METHODS: Purposively selected Ebola survivors from ELWA3, the largest ETU in Liberia, were invited to join focus group discussions. Verbal-informed consent was sought. Three focus groups with a total of 17 participants were conducted between February and April 2015. Thematic analysis approach was applied to analyze the data. RESULTS: The main stressors inside the ETU were the daily exposure to corpses, which often remained several hours among the living; the patients' isolation from their families and worries about their well-being; and sometimes, the perception of disrespect by ETU staff. However, most survivors reported how staff motivated patients to drink, eat, bathe, and walk. Additionally, employing survivors as staff fostered hope, calling patients by their name increased confidence and familiarity, and organizing prayer and singing activities brought comfort. When Ebola virus disease survivors returned home, the experience of being alive was both a gift and a burden. Flashbacks were common among survivors. Perceived as contagious, many were excluded from their family, professional, and social life. Some survivors faced divorce, were driven out of their houses, or lost their jobs. The subsequent isolation prevented survivors from picking up daily life, and the multiple losses affected their coping mechanisms. However, when available, the support of family, friends, and prayer enabled survivors to cope with their mental distress. For those excluded from society, psychosocial counseling and the survivor's network were ways to give a meaning to life post-Ebola. CONCLUSION: Exposure to death in the ETU and stigma in the communities induced posttraumatic stress reactions and symptoms of depression among Ebola survivors. Distress in the ETU can be reduced through timely management of corpses. Coping mechanisms can be strengthened through trust relationships, religion, peer/community support, and community-based psychosocial care. Mental health disorders need to be addressed with appropriate specialized care and follow-up.

OBJECTIVE: Community ART groups (CAG), peer support groups involved in community ART distribution and mutual psychosocial support, were piloted to respond to staggering antiretroviral treatment (ART) attrition in Mozambique. To understand the impact of CAG on long-term retention, we estimated mortality and lost-to-follow-up (LTFU) rates and assessed predictors for attrition. METHODS: Retrospective cohort study. Kaplan-Meier techniques were used to estimate mortality and LTFU in CAG. Individual- and CAG-level predictors of attrition were assessed using a multivariable Cox proportional hazards model, adjusted for site-level clustering. RESULTS: Mortality and LTFU rates among 5729 CAG members were, respectively, 2.1 and 0.1 per 100 person-years. Retention was 97.7% at 12 months, 96.0% at 24 months, 93.4% at 36 months and 91.8% at 48 months. At individual level, attrition in CAG was significantly associated with immunosuppression when joining a CAG, and being male. At CAG level, attrition was associated with lack of rotational representation at the clinic, lack of a regular CD4 count among fellow members and linkage to a rural or district clinic compared with linkage to a peri-urban clinic. CONCLUSIONS: Long-term retention in this community-based ART model compares favourably with published data on stable ART patients. Nevertheless, to reduce attrition, further efforts need to be made to enroll patients earlier on ART, promote health-seeking behaviour, especially for men, promote a strong peer dynamic to assure rotational representation at the clinic and regular CD4 follow-up and reinforce referral of sick patients.