Adaptation, Experiences, and Support Needs of Survivors of Ebola Virus Disease in Bombali and Kenema Districts of Sierra Leone: Formative Assessment

"Initially when we were back from the treatment center, stigmatization was experienced in my community. People were afraid to get close to us, share things with us, but after community engagement with stakeholders and community, people's stigma was reduced." (female Ebola virus disease (EVD survivor from Kenema)

After Sierra Leone's Ebola epidemic, the Government of Sierra Leone, the United States Agency for International Development (USAID), and other partners developed and implemented the Comprehensive Program for Ebola Survivors (CPES) to support access to care and improve livelihoods for survivors of Ebola virus disease (EVD). Despite these efforts, EVD survivors in Sierra Leone have reported stigma and discrimination based on their survivor status and fears of transmission of the virus. This report summarises key findings on the impact, behavior, and stigma associated with individuals living as EVD survivors in two districts (Bombali and Kenema) that had a high number of EVD cases during the 2014-2016 epidemic.

Breakthrough ACTION collaborated with the Sierra Leone Public Information, Risk Communication, and Social Mobilization (PIRCSM) pillar and representatives of the Sierra Leone Association of Ebola Survivors (SLAES) to host 24 focus group discussions (FGDs) with 6-8 participants for each FGD.

EVD survivors perceived a plethora of personal challenges regarding their health, including physical, mental, and psychosocial issues that they attributed to EVD infection and treatments. Health issues were their most important topics to discuss and included anxiety, chest pain, eyesight issues, and other problems. Community and family life varied among survivors; some continue to have difficulty integrating into their communities and families (even reporting harassment, isolation, and exclusion), while others felt a sense of belonging and inclusiveness. All participating EVD survivors were distressed that free healthcare services for EVD survivors were discontinued in 2018 without any warning or explanation. They also felt mistreated by health workers: All EVD survivors described negative interactions characterised by rudeness, lack of empathy, and sometimes verbal abuse when interacting with health facility staff. Consequently, several EVD survivors stated that when they are unwell, they opt to use traditional medicines, go directly to the pharmacist, or self-medicate.

Up-to-date information and quality sources on EVD were scant, and misinformation seemed to be commonplace. EVD survivors confirmed that rumours about EVD was not uncommon among community members, including the belief that EVD was not real and was man made to kill economically poor people or was a curse or the will of God. These misconceptions were also expressed by a small number of EVD survivors. Few participants were aware of the 2021 EVD outbreak in Guinea. Most participants also believed they were currently immune to EVD; however, others were beginning to think that they might not be immune to re-infection.

Participants felt they had no support systems: They could not get the medicines they needed, they faced economic strain, and some were frustrated with the SLAES organisation. To improve their lives and communities, survivors felt they needed better access to quality information, access to opportunities for improved livelihood, free health services, and better relationships with health workers.

Going forward, Breakthrough ACTION and collaborators argue that a multifaceted approach is needed that aims to not only work at the individual EVD survivor level but at the community level. At the community level, interventions should be wide ranging in scope and aim to dispel misconceptions and fears around EVD. Related to knowledge-building is the need for information resources on EVD for key groups and the general population. These resources could provide accurate information from credible sources that are accepted by the community and be designed in various formats ensuring they are accessible for all survivors, including those with visual impairment or who have not learned to read due to leaving school early. Involving EVD survivors, health workers, and community leaders in developing and testing EVD- and survivor-related materials can help ensure messages and behaviours are appropriate and accepted by others within their communities and networks.

As many communities in Sierra Leone are rural, mass media could be supplemented with group events such as community engagement and dialogue. More intensive community sensitisation may be beneficial among communities where EVD survivors live, and ultimately also among the general population. Planning for such interventions should consider including health professionals, trained dialogue facilitators, community mobilisers, and community leaders (teachers, religious leaders, council members, chiefs, etc.). The dialogue should promote an in-depth exploration of members' fears and underlying drivers of stigmatising behaviours in a safe environment that focuses on EVD and not on the survivors. Events should be conducted in a manner that encourages full participation of community members and free speech.

As outlined here, there also is a clear need for programmes with specific aims to improve interpersonal relationships between health workers and EVD survivors to support provision of good-quality person-centred care. Social and behaviour change (SBC) interventions that aim to understand and address community- and facility-based health workers' fears and biases regarding EVD survivors, improve interpersonal communication skills of health workers, and build capacity for empathetic care from health workers can support EVD survivors to access needed healthcare services from credible sources. Community health workers (CHWs) and community-based animal health workers (CAHWs) from One Health could be a valuable resource for these interventions.

Given that SLAES is a channel for reaching and supporting EVD survivors, it may be beneficial to explore ways for SLAES and the One Health Risk Communication Technical Working Group to work together to increase access to timely information on future outbreaks and information resources to address the needs outlined through this research. Approaches could include integrating Ebola survivors into the One Health Risk Communication Technical Working Group's existing system for reporting rumours, misinformation, and concerns and using a WhatsApp group for SLAES members to share updates on outbreaks, respond to rumours, and answer questions. Interventions with SLAES should be participatory and transparent, as some FGDs mentioned difficulties with SLAES leadership and a general sense of distrust among SLAES members. It is recommended that EVD survivors be given a voice within the management of the organisation, including problem identification, decision-making on priorities, and planning of events.

In conclusion: "This information can inform the development of communication materials that provide accurate information about the potential for long-term latent infection and transmission, answer questions of importance to survivors (and the public), and increase awareness of, and access to, existing medical, biological testing, and psychosocial resources for Ebola survivors."