Which lesson can we learn from this analysis?
As health systems showed their limits, local communities in Liberia have developed innovative solutions to respond to the Ebola crisis, such as the organisation of informal quarantines and the creation of personal protective equipment (PPE) from available materials. This study looks at some of these processes and suggests that surveillance and reporting mechanisms that include local communities should be used to avoid future epidemics.
A key lesson from the West African Ebola epidemic is that local community engagement is crucial for response, and may have played a role in the decline in transmission rates. In a context in which health surveillance systems had failed, healthcare workers were experiencing disproportionately high mortality rates due to Ebola infection, clinics and hospitals across Liberia were shut down, and the construction of hospitals and Ebola Treatments Units (ETU’s) could not keep pace with demand, communities were compelled to generate solutions of their own.
Our findings demonstrate how communities showed resilience, innovation, and rapid response to the Ebola crisis. They also show how under conditions of extreme stress, culture can be flexible and supple in response to extreme circumstances and the arrival of new information (like public health messages), and make allowances in extraordinary conditions […]. Local knowledge can shift rapidly in response to public health information and local epidemiological realities. Funerary and caregiving practices can be suspended or altered. Families will break with convention to protect uninfected individuals.
Community leaders agreed that prevention was the best strategy to curtail the Ebola outbreak. During the Ebola outbreak in Monrovia, prevention was seen as including six key areas: (1) a sharp increase in the quantity and specificity of community-based training to prevent Ebola infection, (2) improved hygiene, sanitation, and the distribution of cleaning and protective materials, (3) creating a system of surveillance, (4) safely transporting infected individuals from the community into hospitals and Ebola Treatment Units (ETUs), (5) removal of the dead, and (6) establishing a community-based infrastructure to care for people who were sick with Ebola.
Most importantly, community leaders argued that substantial investments in local infrastructure and systems were required to prevent the spread of the epidemic, recalling Paul Farmer’s much circulated call for “staff, stuff, and systems”. They requested government and other organizational support to create community “holding centers” to serve as interim sites for the sick and dead while waiting for Ebola response teams and/or burial teams to arrive.
They demanded a hotline system that prioritized rapid response to local communities’ calls to place sick people in hospitals and ETUs and remove bodies. Community leaders also recommended a broader local communications infrastructure, including a better-staffed call center, more ambulances, the establishment of mobile clinics or the reopening of local community clinics that had closed their doors, more testing centres, and finally, the training of additional health workers and burial teams. These health workers, they insisted, need to be paid and given adequate benefits.
When community leaders engaged in discussions of “best practices” regarding response and treatment, community leaders agreed that the true “best response” was to obtain care in a hospital or ETU, to seek the removal of sick individuals by healthcare teams working for the government, and to engage in proper burials that reduced disease transmission. But, if resources were not in place, community leaders engaged in creative planning and response by innovating alternatives to how a community might best manage the presence of Ebola infection and dispose of infectious corpses.
Instead, community-based quarantine was identified as the best available strategy or approach. The process of quarantine required careful oversight and supply of resources, and community-leaders gave careful thought to how they might best support individuals and families in isolation and quarantine. In community leaders’ discussions, it was apparent that they sought to position the community at the center of the Ebola treatment response by managing the health and safety of quarantined families through food supply, illness surveillance and oversight, reporting, the provision of medical supplies, and communication and information. There was a strong willingness on the part of the community to serve as a central axis for interaction between the state and local individuals and families by doing the work of organizing food, medical, hygiene, and PPE [protective personal equipment] distribution, case identification and surveillance, multi-level communication and reporting, and patient and corpse conveyance.
This research offered direct insight into the fore-planning process of women as they consider how to respond if and when Ebola arrives in their households, families, and social networks. A broad subset of respondents—mainly women—reported that they would care for their sick family members on their own, and that they preferred to do so inside the home. They described a plan for isolating themselves with a sick family member[s] and for providing the best locally available appropriate care they could offer, using available resources. As one woman noted, “It will be impossible that my child or husband is sick and I refuse to touch them. I do not have the courage or heart to do that.”
Referencing a widely circulated video of a nurse who had made her own personal protective equipment (PPE) from garbage bags, rain coats and boots, and gloves, an elderly woman reported her intention of making her own PPE from locally available materials. “I will find my own PPE (using a raincoat, plastic bags on hands) and care for sick relatives like I saw on television. If the person is not getting better, I will hold them (with the plastic still on my hands) and take them to the hospital.” Women showed an intense conviction that they should care for their families, and showed a desire to do so, despite risks to their own health.
In the future, engaging local communities in epidemic response will require answering their challenging questions about their encounters with systemic failures in real time. Communities sought guidance for triaging a sick person when he or she had been turned away from hospitals, for building and supporting holding units in communities, and for reporting deaths when their calls to hotlines went unanswered. The global health community needs to consider what it would mean to put into place surveillance and reporting mechanisms in which community-based leaders have the ability to directly account for health, illness, or death of every individual in the population. This could be done through the creation of health identification numbers, the creation of health census lists, or other mechanisms of reporting and marking. In a context in which every death is an Ebola death because there are no community-based testing facilities for Ebola, every death needs to be counted as worthy of being reported. (And when everyone has a number, everyone counts.)