Bringing community perspectives to decision-making in the Ebola response in the Democratic Republic of Congo

The Ebola outbreak in North Kivu and Ituri provinces in the Democratic Republic of Congo (DRC) has led to 668  cases and 410 deaths since August 2018, As of 16 January according to World Health Organisation (WHO) data. making it the worst in DRC’s history. Decades of armed conflict, thousands of people displaced, violence, insecurity and a dense and mobile population have made the response to the outbreak particularly challenging and complicated.

Ebola provokes fear in communities due to the severity of the symptoms, misunderstanding of the causes, the high number of deaths and control measures that are often perceived as intrusive and interfering with local social, cultural and religious practices. Petra Dickmann, ‘Using Lessons Learned from Previous Ebola Outbreaks to Inform Current Risk Management’, Emerging Infectious Diseases, 21(5), May 2015. Misinformation, mistrust of outsiders and conspiracy theories have spread quickly across North Kivu and Ituri. Communities have expressed a rational distrust born of decades of violence and displacement, along with unfamiliarity with the disease and with response activities. S. Ranu et al. ‘Community Trust and the Ebola Endgame’, New England Journal of Medicine, 373(9), July 2015.

Research during the 2014–16 West Africa Ebola epidemic revealed a range of challenges in bringing important sociocultural, economic, and political factors to the attention of leaders of the response and help them effectively engage communities to address the threat. S.A. Abramowitz et al., ‘Lessons From the West Africa Ebola Epidemic: A Systematic Review of Epidemiological and Social and Behavioral Science Research Priorities’, Journal of Infectious Diseases, 218(11), 20 October 2018. These include: quality – using robust methods for collecting, analysing and translating qualitative insights, with a focus on actionable and relevant information; speed – gathering and reporting insights in a timely manner so information can be used to shape decisions; and use and usability – getting insights to the right people in formats that they can use in the midst of an outbreak, when information overload is common.

Global coordination for local action

Engaging communities is essential to ensure effective risk communication and collaborative action. Since the onset of the outbreak partners including the International Federation of Red Cross and Red Crescent Societies (IFRC) and the US Centers for Disease Control and Prevention (CDC) have been coordinating and supporting risk communication and community engagement (RCCE) efforts led by the DRC government with support from the World Health Organisation (WHO) and the UN Children’s Fund (UNICEF). The Red Cross has an important role in community engagement and safe and dignified burials. CDC provides analytical and strategic support for many aspects of the response, including RCCE. Together, the Red Cross and CDC have developed a new method to collect, analyse and share community members’ perspectives about Ebola, and the response to it.

Rapid and regular collection of community perspectives and social science analysis can help inform responders about community concerns, priorities and needs at all stages of the response. The Red Cross regularly shares its community feedback analysis with government-led communication commissions in all outbreak locations. The analysis provides a unique opportunity to guide partners on developing community engagement approaches that address localised ‘epidemics’ of fear and mistrust.

From local volunteers to social science experts: methods and activities

In mid-August, Red Cross volunteers began to capture community feedback during routine health promotion activities. The CDC provided support to rapidly analyse and report results. IFRC and CDC progressively refined these processes, balancing methodological rigour with the need for clear and interpretable presentation of information, and a rapid turnaround time.

To date, over 360 Red Cross volunteers have responded to the outbreak within their own communities in safe and culturally-appropriate ways that respect local traditions, while also seeking to change entrenched unhealthy behaviours. Volunteers use dialogue with community members to reduce anxiety and fear and address stigma, rumours, different cultural perceptions Illustrative feedback comments from the latest data collected on 10–21 December in Komanda, the latest affected health zone in Ituri: ‘But we consider this disease as a weapon of war and a satanic disease’; ‘It’s the end of the world, it comes from the devil’; ‘Ebola is a purely satanic disease, imported like AIDS’; ‘Ebola is a disease that comes from the second world or is brought by demons’; ‘It’s witchcraft’. of the disease and critical questions. Illustrative questions from the latest data collected on 10–21 December in Katwa: ‘Where is the Ebola vaccine made so that it’s not for everyone like any other vaccine?’; ‘Is it true that people leave the ETC cured?’; ‘Why are more women infected than men?’; ‘In relation to other diseases with the same signs, how can we distinguish the signs of Ebola which has the same signs as other diseases?’ During house visits and community meetings, volunteers capture concerns, rumours and questions using paper forms.

This information is reviewed and the data entered in Excel spreadsheets. Data includes the date, location, health zone and any comments. Volunteers have also started to include instances where health promotion activities have been refused. Red Cross teams have been trained to use a CDC/IFRC data coding system which offers illustrative examples of codes for five types of information: rumours, beliefs and observations; questions; suggestions/requests; refusals; and statements of appreciation or thanks. In addition, IFRC and CDC have developed quality assurance protocols to ensure adherence to the coding system, as well as revisions to it to reflect new ideas. The Red Cross sends data to CDC on a weekly basis for analysis and interpretation.

Initially, the Atlanta-based CDC team translated the comments from French to English and coded them. More recently, Red Cross staff have been coding the data, with CDC staff reviewing and revising codes as needed. Once codes are finalised, overarching themes are identified, graphs developed and quotes selected to illustrate the predominant themes. This information is prepared in PowerPoint presentations for each health zone.

The presentations are shared with the local government-led risk communication commissions and Ebola response leaders as well as regional and global partners, to inform strategic discussions and decisions. Every Sunday, the IFRC team also prepares more localised Excel pivot tables with rapid feedback analysis of the previous week’s data by health area to inform the Monday meetings of the sub-commissions. Efforts are under way to improve localisation of processes and build the capacity of local staff and volunteers in data analysis. To date, Red Cross volunteers have collected 70,000 pieces of feedback data (since August) from community members in 12 affected health zones, including Beni, Butembo, Mabalako, Katwa and Komanda.

Taking action on community insights

Near real-time data collection can offer insights on many cultural and contextual factors that could help or hinder a response and guide frontline workers’ dialogue with communities. Throughout the response, many have expressed the belief that Ebola does not exist, has supernatural origins (e.g. demonic or witchcraft) or has been created by politicians, in order to influence elections, or by foreigners or non-governmental organisations, in order to make money. Many people also ask why Ebola is getting so much attention when there are other serious threats, including malaria and ongoing conflict and violence. At the beginning of the outbreak there were many questions about where Ebola came from, the reasons for its spread and how to prevent and treat it. As response efforts ramped up, questions shifted to different activities including vaccines, diagnosis and treatment and safe and dignified burials. As the use of ring vaccination See https://www.who.int/ebola/drc-2018/faq-vaccine/en/ for more information on ring vaccination. and medical treatment increased, communities questioned why these interventions were not made available more broadly. Community members offered suggestions for expanding their use (e.g. vaccinating everyone or vaccinating pregnant and breastfeeding women) or improving them (e.g. including family members in burials and involving local healthcare providers in the response). Community members also asked for resources such as wash basins, soap and disinfectants to help them prevent the spread of the virus. Over time, community members have expressed gratitude for the response, along with calls for an end to the outbreak as soon as possible.

Below are four examples of how feedback can guide local action: J. Bedford at al., Social Science and Behavioural Data Compilation – November 2018, UNICEF, IDS and Anthrologica (https://opendocs.ids.ac.uk/opendocs/handle/123456789/14144).

• Early community feedback suggested a widespread perception that family members were not being invited to participate in the burial process. October community feedback in Butembo: ‘Currently cement is being buried instead of the person’; ‘The Red Cross spreads the epidemic [through safe and dignified burials]’; ‘The Red Cross does not involve the families [in burials]’. The Red Cross safe and dignified burial protocol has been revised to respond to cultural needs and community feedback. Community engagement volunteers focus on explaining the procedures before the team arrives, and family members are given the opportunity to dress in protective gear and join the burial team through the burial process. These changes have increased acceptance of safe and dignified burial, and over time fewer concerns have been raised.
• Comments received about family members’ need for visual confirmation that their loved one was in the body bag led the Red Cross to acquire transparent bags. Using transparent bags may also help address perceptions that the bags are filled with rocks or dirt because body parts have been removed and sold.
• In several communities, there were widespread and dominant negative sentiments around Ebola Treatment Centres (ETCs), specifically that when sick people enter one they always die or, worse, that they are killed by suffocation in mortuary bags or injected with poison. These findings have prompted several strategies including guided tours of ETCs for community members and leaders, as well as testimonials from people who survived an infection with Ebola after receiving care at an ETC.
• Feedback data has guided dialogue sessions conducted by frontline workers and volunteers in communities in Butembo and Katwa, the most recent epicentre, where rejection of response teams, including some violence directed at frontline workers, is highest. Dialogue is helping to build trust and acceptance and ensure access.

This collaborative approach to gathering, analysing and sharing community feedback in the context of an outbreak response has prompted the development of tools for accurate, rapid qualitative analysis (standard operating procedures, reporting forms, a codebook and dataset) and interactive dashboards (the IFRC pivot table), including an online dashboard supported by the Humanitarian Data Exchange. If used regularly, these tools can inform the work of frontline staff and volunteers and support leaders in implementing response activities that incorporate community perspectives.

Local challenges: how hard is it to change how we work?

Gathering, analysing and interpreting thousands of community members’ perspectives is hard work. However, the greatest challenge has been ensuring that local feedback regularly informs higher-level strategy and decision-making to contain the outbreak. At least four reasons may be at play:

1. Qualitative versus quantitative: qualitative insights may be perceived as less credible by leaders who have more trust in quantitative research methods.
2. Action-oriented coordination approaches: community feedback offers critical information that can shape the work of every response team. However, it is often perceived as only useful to communication and community engagement teams. There is a need to shift to problem-solving fora across response teams using many different types of data in their discussions (e.g. epi data, community feedback data) in a way that fosters productive discussions about what could be done better or differently, rather than limiting coordination approaches to largely information-sharing fora.
3. Safe and timely access: ongoing high insecurity due to the conflict limits our capacity to guide and shape community action based on the feedback data. Training and accompanying frontline workers and volunteers in unsafe areas remains challenging.
4. Characterising responses and reflecting on responsibilities: often, difficulties in humanitarian or outbreak response efforts are blamed on the community (e.g. community resistance), when humanitarians should perhaps be reflecting on whether our approaches are appropriate or need to be revised to make them more acceptable to the community.

Conclusion

Community-based solutions to beat Ebola in the DRC must be at the forefront of the response. Evidence shows that local practices and beliefs are not static but shift and evolve in response to changing conditions. Our community engagement approaches must also evolve and adapt to the needs and concerns of the affected population. Establishing systems that allow communities to voice their understanding of the issues and provide timely and regular feedback on how we are delivering services will only build trust and stronger community-led solutions. Regular collection of community feedback through systematic listening and monitoring of community perceptions and concerns is essential to adapting the community engagement strategy, informing response actions and presenting clear information that addresses anxieties, fears and unhealthy beliefs, and ultimately contributes to building trust. The process of using qualitative community feedback could be adapted for other organisations and future epidemics. This method is one way in which social and behavioural sciences can be rapidly deployed to provide valuable community intelligence in a response and build trust with communities.

Ombretta Baggio is the Senior Advisor for Community Engagement and Accountability at the IFRC in Geneva. Cheick Abdoulaye Camara is IFRC Community Engagement and Accountability Coordinator in Beni (DRC). Christine Prue is Associate Director for Behavioral Science at the National Center for Emerging and Zoonotic Infectious Diseases at the CDC.