Community-led Ebola action: adapting a community-led approach to the Ebola outbreak in Sierra Leone

09 November 2015

Listening to the People

On 7th November 2015, eighteen months after its first confirmed case of Ebola, Sierra Leone declared itself free of the Ebola epidemic.

Almost 4,000 Sierra Leoneans died in the outbreak, which saw over 11,000 people infected with the virus, and millions of others impacted as the health system and economy ground to a halt. In total over 14,000 people in West Africa lost their lives to the Ebola virus, and while Liberia and Sierra Leone cautiously begin life after Ebola, Guinea is not free from the virus.

Those who were part of the epidemic response have begun to reflect on what happened: why was detection so late and intervention so slow? Once the key biomedical facts were clear, why didn’t people ‘follow the rules’, obey the health messages, avoid contamination and stop the virus in its tracks? Why did this virus spread so far out of control? And how will the world – and particularly, those poorest and least equipped countries – prepare for, prevent, and be ready to contain the next outbreak?

Like the virus itself, these issues are complicated. Deep-rooted beliefs and practices, political and institutional structures, cultural and religious practices, weak health systems, poor logistics and capacity, lack of basic supplies and services, low levels of research and development – all of these factors can and should be explored in the search to understand what happened, how and why.

And yet, some issues are deceptively simple. In the weeks and months since the peak of the West Africa outbreak, a growing refrain among global health experts and policy makers is ‘Listen to the people’ – the notion that citizens and communities must be properly engaged. This is something Restless Development are advocating to the UK Parliament in the wake of the crisis.

Tackling fear, deepening engagement

Just as with HIV/AIDS and other epidemics before it, at the outset of the West Africa Ebola outbreak, community engagement was often at the periphery of the response, a low priority compared to ensuring adequate beds, ambulances, nurses and doctors. The initial social mobilization emphasis was on convincing people that ‘Ebola is real’ by stressing that it was deadly and incurable. While it was important to create awareness of the disease at first, this message created fear, confusion and little incentive to seek treatment.

When the first Ebola case was announced, fear of the unknown was pervasive. For Restless Development, we had to consider our 168 young Sierra Leonean volunteers and the rural communities in which they were placed across country. Our Volunteer Peer Educator Programme (similar to a local Sierra Leonean Peace Corps) had been working in rural communities for more than a decade, supporting peer educators and youth leaders to tackle negative sexual and reproductive health behaviours. These attitudes are typically slow to change but are crucial in a country with dire health outcomes for young women and girls.

In the first weeks of the disease, the message that ‘you will die if you catch Ebola’, often shouted through megaphones from street corners, undermined much of the initial efforts to get patients to seek treatment. Why go to the treatment centre if there was no chance of survival? Or if you might be turned away due to lack of capacity? Many people thought – quite rationally – that if they were to die, best to be surrounded by those who loved them, who could bury them properly. Combatting these initial messages would take facilitator skill and lots of dialogue.

While response authorities noticed and appreciated the visible signs of Ebola social mobilization – billboards, megaphones, t-shirted groups chanting in the streets of the main towns – the critical work of religious leaders, opinion leaders and local champions convincing their neighbours through listening and dialogue in order to change deep rooted practices was often unseen and overlooked.

Developing a Community-led Approach based on CLTS

After an initial intervention using the door-to-door methods promoted by the response authorities, we quickly recognised the need for an approach that could enable the deep behaviour change that we had experienced in sexual and reproductive health, but that could work more quickly, have more structure, and scale up rapidly.

Drawing on Sierra Leone’s experience with PRA through HIV/AIDS programming and CLTS, by November 2014 we were working with our colleagues at the Social Mobilisation Action Consortium (SMAC) to develop the Community-led Ebola Action (CLEA) model. Blending CLTS and the Restless Development Volunteer Peer Educator Programme, CLEA was used to support communities to conduct their own analysis and take their own action to prevent Ebola transmission. Just as with CLTS, CLEA focuses on triggering collective action by inspiring communities to understand the situation and the steps they could take to protect themselves. We took all of the things that we knew worked with CLTS in Sierra Leone – the creation of a sense of urgency and a call to action, the use of structured PRA tools to facilitate community inquiry in a single ‘triggering’ event – to develop an at-scale community-led movement to stop Ebola.

Working at Scale

At the official end of the epidemic, SMAC has reached 67% of communities nationally with an integrated approach focused on CLEA triggering, support to religious leaders by partner Focus 1000 and mass-media through radio by partner BBC Media Action. SMAC partner GOAL implemented CLEA in Freetown and the district of Kenema, while Restless Development worked in 11 of the 13 rural districts of Sierra Leone.

Since November 2015, Restless Development has trained 2,581 Community Mobilisers, who have in turn triggered 8,634 rural communities, or 55% of all rural communities. Over the course of over 49,000 follow-up visits, we recorded the development and maintenance of community action plans addressing key areas for community behaviour change. In these communities, we measured an increase of 9 percentage points in reported safe burials and a 23 percentage point increase in referrals of the sick within 24 hours. Our partner GOAL recorded similar increases in communities where they were implementing CLEA.

CLEA – a structured, intensive ‘triggering’ and follow-up approach

Just as with CLTS, the first step of CLEA was an intensive one-day triggering exercise focused on inspiring collective understanding of the Ebola threat and actions that communities could take to protect themselves. Community members walked through body mapping and risk ranking exercises (the ‘Danger Discussion’) to assess their understanding of the ways in which the virus could affect them and the level of ‘danger’ of different actions – from shaking hands to caring for the sick to traditional washing of the dead. Burial role plays helped communities articulate what should be done during a ‘proper’ burial in their community, and how this might be adapted in light of the Ebola threat. To demystify the Personal Protective Equipment (PPE) worn by response workers, facilitators brought a set of unused PPE and allowed volunteers to touch and try on the equipment, answering questions about why the equipment was needed and getting communities familiar with these often intimating suits. Story telling by Ebola survivors helped communities understand that there was help with early treatment. The ‘Ebola Spread Exercise’ reinforced the idea that the epidemic could spread quickly through touching, afflicting the most generous and compassionate care-takers in the community.

The appropriateness of the different PRA tools was dependent on the context, differing by urban and rural, and based on community experience of the virus, exposure to other messaging, and other factors. Mobilisers were trained to focus primarily on their attitude and style of facilitation, rather than the specific tools or order of tools, adapting based on the needs of the community.

Just as with CLTS, the real transformation came not during the triggering but in the weeks and months of follow-up community engagement. We found that despite the stressful emergency situation, the majority of community mobilisers absorbed both the spirit and intention of the community-led approach – two-way information flow, learning, adapting and respecting community agency, discussing and understand rumours – in a way that eventually gave CLEA a life of its own.

The vast majority of communities developed action plans which were followed up by appointed Community Champions in each community and monitored by our mobilisers during each visit. These action plans included agreed by-laws such as the reporting of people with symptoms and actions for safe and dignified burials, but also expanded in unanticipated directions to include aspects of sanitation and hygiene, treatment of women and girls, reporting of persons entering from outside the community, and establishment of road blocks and quarantine areas.

CLEA as a framework for linking communities to Ebola services

One of the results of CLEA was the establishment of a national network that connected communities to each other, and more importantly, connected communities to the District Ebola Response Centres (DERCs). Over time, Community Mobilisers became a trusted conduit for two-way communications, relaying the latest news from district authorities to communities, and at the same time acting as an avenue for communities to report alerts about sick cases and community deaths requiring burial. All deaths during the outbreak – whether Ebola-related or not – had to be reported to authorities for a Safe and Dignified Medical Burial. SMAC Community Mobilisers became trusted links between communities and authorities. Mobilisers were consistently made aware, both formally and informally, of deaths (and sometimes secret burials) in their communities, which were then reported to the appropriate authorities for action.

Mobilisers and Champions were often members of the ‘advance team’ ensuring communities are aware of what to expect when an ambulance, burial, surveillance or quarantine team arrives in a community. This required strong community engagement skills on the part of mobilisers, as communities can become frustrated at any delay of service providers and may often wish to go ahead with burials themselves.

Ensuring CLEA facilitator training and quality

All Community Mobilisers were required to take a 5-day training, which included an intensive immersion and practical demonstration of the CLEA tools, approach and philosophy. Learning from CLTS, we used hands-on triggering practice in communities to prepare mobilisers. We knew we would sacrifice some quality because of the urgent need and the scale of the endeavour; however, we felt that strong training and a reliable supervision structure could provide integrity that could be improved over time. We also knew from the CLTS literature that the ‘conversion rate’ for reaching ODF through the CLTS approach was somewhere around one-third. We weren’t sure how this would translate to the CLEA approach, but we considered that this would be adequate to shift social norms enough to slow the pace of the epidemic and accelerate positive community responses to the virus. In any case, we knew that this approach would be more impactful than alternative one-way awareness raising and health education approaches. We have only begun to crunch the numbers on how this turned out.

What next?

In January 2015, when the majority of target communities had been triggered and follow-ups were well underway, Restless Development and SMAC staff participated in a mid-term review process which looked district by district at successes and challenges both programmatically and operationally. Since then, the CLEA approach was recognized, and substantial elements adopted as best practice, within the national Standard Operating Procedures for Ebola Social Mobilisation and Community Engagement. Lessons from Ebola community engagement by SMAC also informed Restless Development’s submission to a UK Parliamentary Inquiry to the Ebola response and a joint submission to the International Ebola Recovery Conference.

Sierra Leone is now celebrating the declaration of the end of the current Ebola epidemic, but we have only begun to scratch the surface of our understanding of the impact of community engagement Initiatives on the outbreak. It is clear that when communities are supported and empowered to take their own analysis and action on Ebola, incredible things can be achieved. Communities showed that they were able and willing to adapt cultural practice and change behaviours on their own terms. Community engagement using PRA at scale in a humanitarian crisis has been tested and it has worked, due to a focus on quality, accountability, and proper resourcing.

So what next? We see CLEA as an entry point. In the nearly 9,000 communities where we operated, how can we build on the CLEA experience, continue to support community champions, and begin the difficult work of recovery? There are a range of seemingly intractable issues – poor sanitation and hygiene, child marriage, poor access to child and maternal health services, female genital mutilation – that can be tackled if community solutions are identified alongside appropriate services. Putting this into practice will be the challenge for all development organizations during the upcoming recovery period for Sierra Leone.

Jamie Bedson and James Fofanah are Directors at Restless Development. Danielle Pedi is with the Bill and Melinda Gates Foundation.