As Ebola recedes from the headlines, amid long awaited declines in incidence in West Africa, a long overdue commitment to developing vaccines and adequate health care infrastructure is underway. The importance of these approaches should not to be minimized. Yet we need to remember that health promotion and protection, as well as social development, ultimately hinge on people, not simply drugs or clinics.
“The people” on whom so much rests, certainly include health care workers, who in the case of Ebola often gave unstintingly, suffered a 55% mortality rate, and were (appropriately) named Time Magazine’s 2014 Persons of the Year. Yet to really be successful in health promotion and disease prevention and control, “the people” also must prominently include community leaders and members, whose deeper engagement, farther into the Ebola outbreak, helped improve outcomes.
In stressing the need for elevating community engagement, we in no way mean to downplay the critical importance of addressing the broader socio-structural factors that create the environments in which deadly diseases can flourish. Yet, we health professionals must, at the same time, reframe our approach to diseases like Ebola, viewing communities as part of the solution, and indeed pivotal to success. Early pictures of outside experts in “space suits,” unceremoniously taking away bodies and spraying residents with chlorine, are seared into our collective memory. So, too, are images like one of a young woman, trying desperately to throw dirt on the rapidly departing, triple wrapped body of her deceased sister, in a final attempt to provide some dignity, some modicum of cultural appropriateness.
There was a better way, and while it was increasingly exhibited in the waning stages of the outbreak, how much better it would have been to follow some simple steps from the beginning, ideally averting such deadly practices as hiding ill family members and unsafe burials.
We created an eight step process to better address disease outbreaks through early and sustained community engagement. These steps include ensuring that outside health care workers familiarize themselves with a community (its customs, beliefs, and informal leaders) before entering; that they enter accompanied by a respected local leader, and with “cultural humility” (showing respect for the community’s knowledge and assets); that they listen and learn, not simply give orders and take unexplained and fear-producing actions. A meeting in the community, called by local leaders and to which outside health workers are invited as guests, is another important step; it allows outsiders to share what they know while promoting reciprocal learning, and establishing trust and respect. Community meetings also provide a good platform for assessing “community readiness” to work with health care workers in identifying aspects of the standard infection prevention and control (IPC) protocol that might be adjusted to improve their cultural congruence, without compromising safety.
The WHO identified several such modifications with respect to the most dangerous practice: the ritual washing and burying of the newly deceased. Inviting the bereaved to help dig graves of sufficient depth, and lower the coffin/body while wearing protective gloves, respected local beliefs and practices while ensuring safety. In our conversations with residents and health care workers in Sierra Leone and other African nations, we learned of other promising practices, as well as important local assets that could be mobilized to help. A song about Ebola by the popular “Sierra Leone Refugee All Stars,” that played on local radio stations, and short, locally-made films in which “real people” convey accurate information conversationally, were among these assets. From Kenya, we were reminded of the key role local members of Slum/Shack Dwellers International can play in providing detailed information about informal settlements where disease outbreaks too often become epidemics.
The development of a safe, collaborative community-medical IPC protocol, adjusted to include safe modifications based on the “community protocol” (local customs, beliefs, knowledge and practices), may make a substantial difference in community responses and contributions, and save lives. So too can the active engagement of once shunned Ebola survivors, who now are playing a critical educational and supportive role in many communities.
Although rigorous testing of such an approach still is needed, and assessment processes and plans for sustainability must be built into each application, more recent involvement of local leaders and residents, including survivors, suggests the promise of a more community-engaged approach.
Encouraging, too, is the recent commitment of the presidents of Guinea, Liberia, and Sierra Leone to reaching “Zero Ebola Infection in 60 Days,” with an operational framework that includes standard infection prevention and control, social mobilization, and community engagement among its key elements. Although we applaud these efforts, we suggest that community engagement and social mobilization must be a core part of, and not a supplement to, the development and deployment of a sound IPC. Such engagement may have helped prevent recent rumors that the spraying/disinfecting of schools was actually spreading Ebola — rumors which led to the burning of a vehicle and Medecins Sans Frontieres office in Guinea in mid-February. Now is the time to fully develop, test, deploy, and sustain a more robust community-engaged approach to IPC. Doing so may help achieve the ambitious goal of Zero Ebola Infection in 60 Days. It will also help build capacity and readiness before the next Ebola, or other serious infectious disease, has a chance to take hold.