This research was commissioned by the EVD Preparedness Consortium comprising Save the Children,
Concern Worldwide and Internews in South Sudan. It provides information on community perceptions about the Ebola outbreak and preparedness activities in Yei River State. The study was commissioned based on the recognition of the importance of integrating social sciences into Ebola outbreak and preparedness activities from the West Africa Ebola outbreak (2013-2016) and subsequent outbreaks in the Democratic Republic of Congo (DRC) in 2018 and 2019. It provides granular information about community’s perceptions of activities, particularly disease surveillance, infection prevention and control (IPC), risk communication and community engagement. These details will help the EVD Preparedness Consortium to ensure a localised and agile response to the risk of Ebola in South Sudan. The formative qualitative study was conducted between August and September 2019 in Yei River State.
This was a qualitative study using a range of methods, including key informant interviews, community mapping exercises and focus group discussions. Participatory mapping exercises were designed to elicit perspectives, experiences and suggestions from community members and leaders about health seeking behaviour, population movement and community intent in case of an Ebola outbreak. The interviews were designed to gain insights from key government officials, youth leaders, health workers, informal service providers including traditional healers and religious leaders and other members of communities. Data were collected in three research sites: Mahad, Sobe (Yei municipality, Yei Payam) and Payawa (Mugwo Payam).
The study included 166 participants, of which 55% were male (N=91) and 45% were female (N=75).
Context, community stakeholders and cross-border movement
Early detection, disease surveillance and mobility. Early detection of Ebola virus is critical for control and containment. Due to the high mobility of the population, gaps and opportunities were identified that could inform future response mechanisms in Yei River State. In the porous border areas of the state, movement patterns change frequently. Population groups who move across borders include armed groups, refugees, returnees, people seeking education and healthcare services, boda boda drivers and (legal and illegal) traders. These populations often move covertly and try to actively avoid official borders so as not to be subjected to customs checks and associated bureaucracy (high import and export costs). By using informal routes they often bypass formal screening points. Participants who crossed the border on a frequent or daily basis reported they were “tired of Ebola measures” and routinely avoided screening and handwashing.
Many called for “more practical” disease surveillance mechanisms to encourage communities to self-monitor population movement and suggested engaging with markets, schools, churches and refugee camps on both sides of the border, rather than focusing on formal border crossing points. During the study, numerous community-based stakeholders were identified as having the potential to contribute to local surveillance efforts, particularly those who frequently navigate the borders.
Knowledge and perceptions, care-seeking behaviours and provision of services
Awareness and knowledge. Participants across the study conveyed a high level of awareness about Ebola and many knew about the active outbreak in the DRC. Accuracy of knowledge was more variable across sites, however, with inaccurate explanations about the origins of Ebola frequently expressed particularly in rural areas. These included some negative statements and questioned the role of the international community. When discussing signs and symptoms of Ebola, most participants repeated information disseminated by risk communication partners and could identify at least three signs of infection (e.g., fever, vomiting and diarrhoea), although worryingly, the most frequently reported sign was bleeding from the body.
Levels of knowledge about transmission pathways varied, with those in Yei City appearing more likely than those in the rural sites to give accurate descriptions. A number of respondents understood basic selfprotection measures and an understanding of some of the IPC measures that had been put in place, but many requested more knowledge and greater details about transmission routes, prevention mechanisms and treatment options, in particular the availability of the Ebola vaccine. Throughout the study, participants expressed a high level of fear about Ebola, whilst at the same time often asserting that it was not always a priority concern for them.
Health facilities, health worker perceptions and IPC. Across South Sudan, but particularly in rural areas, multiple barriers prevent equitable access to formal healthcare. These challenges were reflected in the study’s findings and issues associated with direct and indirect costs were discussed, particularly the high price for consultations and drugs at private hospitals which are often the only source of care available. A number of health workers who had previously been involved in preparedness and screening efforts reported that they worked without salary and emphasised the lack of basic health infrastructure. All called for health facilities to be rebuilt and the health workforce to be trained to enable them to respond not only to Ebola but to other diseases. At the time of research, when Consortium partners were still distributing health materials to support IPC (such as handwashing buckets, gloves, soap, infrared thermometers, isolation tents and bins), health workers confirmed that it was difficult to adhere to IPC measures when they did not have access to basic protective equipment. Others requested more practical training and noted issues they had encountered in providing the most basic of services such as checking patients’ temperatures or providing food. At the time of research, health workers asserted that they, like the communities they served, were fearful of Ebola, were aware of the risk of nosocomial infection and felt quite underprepared to deal with a case.
Care-seeking. Participants described seeking services from various cadres of care providers, of which some were involved in Ebola preparedness measures. Participants in urban areas would often visit formal health facilities, but also relied on homecare and local medicine when resources were limited. Those in rural areas often suggested that homecare and local, medicine were the only options available to them. Caring for the sick is normally done by female family members and many women explained that because of lack of household resources it would normally take several days for the family to collect sufficient money to attend a health facility after the onset of illness. They would often try to treat symptoms at home and if this did not work, would seek care from local healers (‘buna’), religious healers or pharmacists. Local practitioners engaged in the study reported limited knowledge about how to implement IPC measures even though they recognised a need for protective equipment to enable them to care for their patients safely. There were numerous requests to further include local providers in preparedness activities.
Customary burial practices. Burial and funeral rites occupy an important role in South Sudanese society, with ‘proper’ burials being seen as essential for both the deceased and the living. Participants from different ethnic groups reported that some customary practices such as washing, dressing and transporting the deceased’s body are high-risk activities in the context of Ebola. The study highlighted that it is imperative that the introduction of safe and dignified burial practices are negotiated with community members and fully adapted to the local context.
Communication and community engagement
Information needs and misinformation. There is a pressing need for more information about the Ebola outbreak and preparedness measures to be shared with community members. Information needs change over time and were noted to be different for urban and rural populations. Across the sites there were requests for more information about the origin of Ebola, signs and symptoms of infection, its transmission routes, prevention mechanisms and treatment options. There were requests for further details about the vaccine, therapeutic treatment in health facilities and quality of care, about specific risks and how individuals should adapt their behaviour to keep safe. No detailed information about vaccination had been incorporated into broader communication efforts at the time of this study. Lack of information can be a problem, creating a vacuum in which misinformation readily circulates. Some examples of misinformation were documented, mainly related to perceptions that Ebola is airborne or spread by mosquitoes.
Trusted sources of information and preferred communication channels. When discussing who are the most trusted sources of information about Ebola, the majority of participants suggested health professionals and/or Ebola survivors. Health professionals were not universally trusted, but in general doctors were trusted more than nurses, and formal providers more than pharmacists and local healers. Survivors were trusted because they had experienced Ebola first-hand and could give a personal account. At the time of the study, a wide range of platforms was being used to provide information, but it was evident that there were significant differences in how participants from rural and urban areas accessed information. Most participants in Yei confirmed that they received Ebola awareness messages from multiple channels including local and Juba-based radio, through NGOs and/or the EVD Task Force. In contrast, those in rural areas mainly accessed information via their church and religious leaders, through community or church radio, or from radio stations broadcasting from Uganda or DRC.
Modes of communication and language. Verbal communication was strongly preferred over written materials (in particular due to low literacy levels) and issues were identified relating to the printed IEC material disseminated in Yei. Participants requested that the format or mode of communication and engagement activities be adapted from mass-mobilisation and awareness-raising to constructive two-way dialogue between Ebola preparedness actors and communities. Women suggested video as one of their preferred formats of communication, ideally in the relevant local language. Spoken language is not always comprehended in the same way as written language and it was emphasised that materials in English or Juba Arabic were often poorly understood by community members, even if they could speak those languages to some degree.
Conclusions and recommendations
The population in cross-border communities in South Sudan is facing multiple, and mutually reinforcing public health emergencies, conflict and armed violence, and natural disasters including destructive floods and related food insecurity. Its health system is severely underfunded and lacks the skilled workforce and materials to respond to the threat of Ebola and other illnesses effectively. Ebola preparedness activities should be designed accordingly, tailored with sensitivity towards the needs, priorities and vulnerabilities of communities, whilst contributing to strengthening the pillars of a functioning and resilient health system.
Ideally, a holistic approach would be adopted, with serious commitment and investment for both short- and long-term priorities.
In the short-term, there are a number of priorities in order to respond to the immediate threat of an Ebola outbreak. Community-based actors will continue to have an important role, particularly in light of the ongoing insecurity and restricted movement of external response actors in areas most at risk of an outbreak.
In order to have the knowledge and ability to respond to an Ebola alert, community actors will need sustained support. It will also be necessary to increase efforts that bridge gaps linking information provision, health promotion and knowledge. Again, this requires targeted efforts and investment that will build the skills of health workers engaged in the formal system as well as community actors so that they can respond together to the threat of disease.
In the long term, it is essential to look beyond the immediate threat of Ebola and there is an urgent need for greater investment to revitalise and rebuild the South Sudanese health system. This should be viewed as part of the broader transition strategy for the Consortium, as well as complementing current efforts to prevent an Ebola outbreak. In practice it means working in partnership with national institutions, linking Ebola preparedness measures to existing initiatives and platforms and contributing to building health system structures. The very challenging operational constraints in South Sudan will limit the scope of what can be achieved in a limited timeframe, however contributing to sustained health system strengthening should be integrated into the transition strategy of the Consortium.