Ethics Statement

Because the data were collected anonymously for the purposes of program evaluation (as part of the World Health Organization’s Ebola response activities) and the authors analyzed data that was de-identified and redacted, the study received an expedited review and exemption under the University of Florida Institutional Review Board (IRB) for the Protection of Human Subjects (IRB-02) #2014-U-1117. In accordance with the protocol detailed during a WHO research ethics review of the proposed data collection initiative, all research participants provided verbal informed consent and their names were not collected with the data. Participants were compensated for their time with US $5.00, and were informed that there would be no other direct benefit for participation in the study.

Prevention

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.

Training, said some, would counter the presence of fear in the communities and change the minds of those who continued to deny the existence of Ebola. Community leaders sought training to address the following key technical challenges in Ebola management:

• How to properly care for sick people
• How to isolate sick people
• How to manage quarantines safely
• How to administer community-based holding centers
• How to transport sick people safely
• How to isolate corpses
• How to bury infected corpses when corpse removal teams did not come
• How to maintain personal and household hygiene and use hygiene materials
• How to make use of available PPE
• How to properly disinfect their homes.

Notably, they were not seeking the basic information about Ebola then offered during health communications campaigns (ex. “What is Ebola? Have you ever heard of Ebola?”). Community leaders felt that they had a strong grasp on the basics of Ebola etiology and transmission, and the challenges they confronted or anticipated pertained to their uncertainty about how to respond in the context of health sector collapse. They called for training methods that would make public health messages more palatable and effective (by using local languages, video, door-to-door education, or billboards), but their concern was that people believed in Ebola and knew enough to be afraid, but not enough to respond effectively in the absence of a functioning Ebola medical response system or general healthcare sector. As one person reported, “We have heard the messages, but most people do not know how to practicalize them.” Continuity of messages and continuity of message delivery was highlighted as a critical issue. Community leaders emphasized the need to engage with communities on a daily basis, and for the messages they were relating to be correct and similar. Proposed training models included youth awareness workshops, community-based volunteer/training-of-trainer (ToT) workshops, and trainings for community leaders on the management of community-based Ebola responses.

To prevent the incidence of Ebola in their communities, community leaders argued that heightened attention to sanitation would prohibit the spread of the virus through bodily fluids. Governmental, NGO, and bilateral support was requested to sponsor heightened sanitation in private and public latrines, to include the distribution of buckets, ash, and bleach for washing, and locally obtainable personal protective equipment (PPE) gear like raincoats, rain boots, and plastic bags. As some demanded, “we need the same PPEs given to the medical doctors and nurses to be given to the community.”

Sanitation alone would not get the job done, however. In order to protect the community from the introduction of Ebola, and deter the spread of infection within neighborhoods, community leaders called for heightened surveillance efforts, and reported those in which they were already engaged. There was a strong community-based ethos informing control measures. As one community member said, “as a community we keep watch over each other.”

Community leaders’ accounts of optimal community-based Ebola surveillance included a four-tiered system of surveillance that was designed to prevent introduction of the virus into the community, facilitate reporting, disseminate information, sustain house-to-house monitoring, and support whistle blowing when community-members were non-compliant with EVD prevention protocols (Fig 2). The first level of surveillance involved the exclusion of “strangers” from the community, prohibiting visitors from sleeping in one’s home (for fear that they might be running from the presence of Ebola infection in their own home), and mandating a 21-day waiting period for those who wished to move into the community to insure that they were Ebola-free. The second level of surveillance included the formation of a community task force that would enforce the exclusion of strangers, and would also assume a leadership role in prevention (like keeping community members away from sick people or the dead). The community task force was also suggested to be responsible for alerting community members to the presence of Ebola, monitoring the health of the sick and their family members, engaging in reporting, and managing resource provisions for community-based quarantines and isolation. At a third level of surveillance was the block watch team. Community leaders suggested that block watches could go house-to-house to monitor the sick, refer new cases to health facilities, and identify efforts to conceal sickness or burials. Fourth, individuals within households were expected to invest in their own domestic surveillance for Ebola by reporting cases of illness within their household, removing themselves or their family members from the possibility of contagion upon discovering sick individuals, and even isolating themselves so as not to infect family members.

The division of labor suggested in community surveillance was implicitly-–and sometimes explicitly—gendered. Women and men were both included in community leadership focus groups, and their reports and ethnographic evidence suggests that men were expected to serve on community task force teams, block watch teams, or community action teams to keep strangers out and engage in reporting and whistle blowing. There was some concern about remilitarization, violence, and destabilization due to this trend, as was born out during the West Point riots in Monrovia, and in armed confrontations between male youth and police and Ebola response teams in Sierra Leone. The mobilization of young men in these communities can, and often does, involve a range of martial and surveillance-like behaviors that can turn rather quickly into a remilitarization of social organization [41–42].

As we will further elaborate below, women, on the other hand, were expected to engage in domestic surveillance, to monitor the physical wellness or illness of family members while they washed, clothed, and fed children, spouses, siblings, and elderly persons, and care for the sick. As a counterpoint, the domestication of surveillance among women caring for the bodies of others within households might have put women at a greater risk of infection within the household, especially under quarantine and isolation conditions, while men were more likely to be infected outside of the household (e.g. through transportation and porterage activities).

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” [9]. 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 centers, and finally, the training of additional health workers and burial teams. These health workers, they insisted, need to be paid and given adequate benefits.

Response and Treatment

Nearly all of the demands for the infrastructure improvements noted above derived from the experience of the failed international and national Ebola response observed and known to community leaders in the months of July, August, and September 2014. When community leaders called for the creation of a communications infrastructure, it was because their calls to hotlines had gone unanswered. When they called for the training of community members to provide care to the sick, manage holding centers, administer quarantines, and isolate or bury the dead, it was because they had experienced the social, medical, and ecological consequences of response teams not arriving in a timely manner or failing to arrive all.

Communication, or the lack thereof, constituted a critical part of the response’s failure at the juncture of prevention and response—the removal of the sick and the dead from communities. The anonymity involved in the process of removing the sick and the dead terrified people, and played a role in their decisions to avoid ETUs and hospitals and to conduct secret burials. In one case, a community leader reported losing an infected individual who had left the community for an “unknown destination.” After going from hospital to hospital, there was no record of that individual’s registration, death, or departure. This was seen as evidence of the failure of the international and national Ebola response.

In the absence of open clinics and hospitals, residents tried to assume responsibility for all aspects of healthcare in their local communities. Everything that follows in this section builds upon this premise. 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.

This section details how community members prioritized the triage and treatment/care of unknown sickness and unexplained death in their communities. In order to assess how community members were likely to respond to illness in local communities, researchers asked a series of questions pertaining to their identification and management of illness in family, friends, and neighbors (Fig 3). Community leaders were quick to highlight the unnecessary morbidity and mortality due to preventable and treatable diseases, injuries, and basic health problems that were caused by the widespread closures of medical clinics and hospitals [43]. Most community leaders concurred that community members would be impelled to provide the best care they could offer for their families within their homes. Demands for guidance abounded: “We need to know how to protect ourselves while taking care of the sick.” “We want training and materials for how we can handle ourselves and the dead.” In order to align local realities with public health messages that were becoming increasingly unreasonable due to their disconnect with the lack of available services, they asked that community taskforce members be trained in basic healthcare provision, treatment of symptoms, and corpse removal.

When someone within a household fell ill, community leaders reported that they were first cared for within the home with palliative care. The person was administered “first-aid treatment,” including locally available pharmaceuticals, herbal remedies, locally accessible oral rehydration solutions or therapies, the provision of fluids, and the early administration of anti-malarials. It was not expected that any single household would be able to provide all of these interventions.

If the sick individual did not recover, community leaders expected caregivers to take a sick person to a hospital, or call the health team. There was a general consensus that if a person did fall ill, both health teams and the community must be notified so that they could respond and take precautions. However, the technical details regarding the proper handling of sick community members at home and in transit was ambiguous among respondents because it was ambivalent in the community. Transportation itself was a vector for infection. Leaders recounted examples of people who had walked to the hospital or carried sick children in their arms rather than travel by taxi or ask for help with transportation, in order to prevent the spread of infection.

Caregiving in all aspects demanded physical contact, but the public health messages regarding physical contact failed to recognize this reality. As some respondents noted, one message said, “Don’t touch,” while another said, “Touch, but use plastic gloves.” The lack of consistency may have resulted in experimentation and innovation, but it also elevated local perceptions that the message “Don’t Touch” was impractical and unhelpful in the context of immediate need. This was particularly significant in a social milieu in which nearly every able-bodied individual functioned as at least a part-time caretaker for children, elderly, or physically or mentally disabled friends and relatives.

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 distribution, case identification and surveillance, multi-level communication and reporting, and patient and corpse conveyance.

Community-based quarantine and home-based healthcare, however, caught communities in a Catch-22. Many community leaders were afraid of continued epidemic spread in their communities, and believed that health workers’ training, medicine, and materials prepared them to support and treat the sick [44]. Conversely, as one research team member commented in her field notes from one focus group, if a relative or neighbor was ill, just half of respondents were likely to call a health team hotline or encourage that person to go to a hospital or Ebola Treatment Unit (ETU). They had good reasons not to. By the time of this study, many of those who had gone to hospitals and ETUs had never returned, or had been turned away from multiple facilities due to lack of beds. Some were concerned that the failure to report the deaths of Ebola patients to their families and communities meant that loved ones’ bodies had been dissected for body parts after death, and that foreign NGOs were trying to keep the practice a secret [44].

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 (Fig 4). 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.

Childcare, eldercare, home-based healthcare and the graduated triage approach were gendered activities; and home-based care constituted a zone of risk for both predominantly female caregivers and their dependents [45], in contrast to community-based surveillance, education, and transport roles, which functioned as a zone of risk for men. This may have also had unrecognized repercussions on infant and child mortality, and on the now-confirmed explosive chains of Ebola transmission within kinship networks and families during the Ebola crisis [46].

Community leaders reported that, after parents infected with Ebola had been removed to hospitals or had died, their children were placed under community quarantine for 21 days. During this time:

“Many of these children do not survive their quarantine periods; they just cry to death because no one can provide care from the outset. Community members are unable to help because of fear of the Ebola virus. Babies and young children are dying, not from Ebola, but because there is no one to care for them and the health workers’ response to these children is too slow.”

The reported deaths of young children under quarantine paint a challenging picture to communities’ descriptions of providing care (food and water) to local families and children throughout the quarantine period. It also facilitated the impression that women’s greater involvement in the direct support of children’s diet and healthcare and in traditional burial practices was resulting in a gender differential in levels of exposure, although this has not been borne out by the official data [47–48, 22]. A community-based approach lends itself to the interpretation that, although male and female case incidences and fatalities were roughly equal [2], women’s risk of mortality may have been impacted by their greater reluctance to seek early treatment for Ebola out of fear for children’s lives, and due to concern for children’s and dependents’ well-being under the quarantine that would follow their hospitalization at an Ebola treatment unit (ETU) or temporary quarantine at community-care centers (CCCs).

Other responses indicated the existence of a path for Ebola response in the community that diverged from both formal healthcare seeking and home-based care. The retreat and isolation of sick individuals was characterized as a protective measure for the community, and as an act of generosity from sick individuals to the community. Survivors characterized their own self-isolation as a strategy for honoring and caring for the families of people who had died. Unsupported quarantine entailed the isolation of an infected individual, without providing treatment to him/her, or referring him/her to a healthcare facility. As one person noted, “If my son is sick, I will run away from him. I am not a health worker to tell whether it is Ebola or malaria. It will be better he dies alone and I be left behind to care for his sisters and brothers.” The intention of this statement sounds chilling, but its meaning is complex, and considers the futures of the people surrounding the individual who present as terminally ill, with little likelihood of treatment or survival.

Sequelae

The legacies of Ebola in Liberia appear to be drastic and long-lasting [48]. This study identified three critical issues pertaining to the sequelae of Ebola: (1) the reintegration of Ebola survivors into local communities, (2) the care and management of “Ebola orphans”—or children who had lost one or both parents to Ebola, and (3) memorialization of individuals who have died of Ebola.

At the height of the outbreak, when these data were collected, focus group participants reported support and acceptance for Ebola survivors in the community. Ebola survivors were widely recognized as being an asset in the fight against Ebola. They were seen as being an embodiment of positive messages suggesting that early treatment could allow one to survive Ebola, and they were referred to many times as “ambassadors” of Ebola awareness, as “living testimony to the Ebola crisis,” and as positive role models. Within focus groups, survivors already appeared to be accepting their positive role model status, and offered vignettes like the following:

1. I am a native doctor (herbalist). I used to heal sick people before I got sick with Ebola. After I cured a few people, there was one person who I was asked to treat. Before I got there the person had already died. I didn’t touch the dead body. When I started feeling sick and noticed that I was showing signs of Ebola I walked to the hospital all by myself. I care for my family and didn’t want to get them infected. I was also afraid to get other people infected, so I didn’t ride a taxi or motorbike; I walked to the ETU. From the beginning, I was discouraged, I lost hope because people who were in the same room (on different beds) died. I spent six days and started recovering. I was given material to use (gloves, PPE, chlorine) and asked to help anyone that I saw showing the signs of Ebola and encouraged people to go to the ETU early.
2. It was traumatic for me but I thank the Almighty God and the medical staff at ELWA for surviving this outbreak. For me when I started feeling sick, I went to the treatment center right away to seek early treatment. I think that is how I survived. Most of the people who come to the center do not come early to get help, and I think that is why people are dying. My advice to people is that they should seek early treatment when they start to feel sick and see signs and symptoms of Ebola.

Although some community leaders mentioned that they were afraid of survivors, most indicated that they welcomed the return of Ebola survivors into their community. They acknowledged that they understood that they were no longer infectious, and that these individuals could not be re-infected with the virus. Concern was voiced that the Ebola virus was found in semen for up to three months following infection, and that previously infected individuals must take care to avoid sexual relations. Others conflated this three-month time period with the perception that these individuals were still infectious, and recommended that they be placed in a halfway house for three months following an infection.

The care of children orphaned by Ebola was widely regarded as a communal responsibility. Some community members mentioned that children would be brought into their homes and families, noting, “The children become our children. These children are our own because their parents are no more.” Another commented that the community leaders must, “encourage people to take children whose parents have died of Ebola as their own, because we have lived in the same community for years and they are like family to us.” Recalling the war and the fragility of life in urban Monrovia [34], one individual noted, “We have done it before. We will take care of the children. Education, feeding, and shelter.” Several respondents mentioned that children required psychosocial counseling to recover from “traumatization” due to having lost their parents, and they recommended that NGOs make counseling available to Ebola orphans in communities and in orphanages. They also stipulated that orphans should not be forced to endure stigma or discrimination because their parents had died of Ebola.

Despite the will to care for the children, there was considerable concern about the economic, emotional, and residential burden that additional children would impose. When children had extended families elsewhere, communities felt that they should be united with them, and that NGOs must assist with “family reunification.” Others called for the creation of orphanages within their communities so that community members could oversee the development of the children, while delegating financial and educational costs to NGOs, UNICEF, the World Health Organization, and the MOHSW. The majority of individuals, however, seemed to hope that children would be able to stay within the community, but would receive financial support for their clothing, food, and education from governmental, non-governmental, ecumenical, and charitable sources.

The data from this research indicated the need for some form of widespread and public memorialization of the lives lost to Ebola. Community members called for: a National Memorial Day; the construction of a statue in the middle of the community; a formal memorial service at the end of the outbreak; a parade; or a day called “Black Day” to be recognized by law. Community members also recommended that a mass grave be built with a headstone inscribing the names of all who had died of Ebola, and had been cremated. The goal of this memorial is to provide family members with a space to “remember” and pay tribute to their loved ones by visiting the grave and laying flowers. Additional suggestions were practical, and included providing scholarships, financial aid, general support, and counseling to Ebola orphans.

Limitations

This study had two major limitations. First, the number of participants in the focus groups was large (15–20). In order to address this issue, the PI stationed four research assistants around the group in order to capture the responses of all participants. Second, the data collected were partly conjectural, and questions were posed as hypothetical or focused on best practices, rather than on direct local experiences and actions, in order to avoid issues of concealment or avoidance during data collection. As a result, community leaders’ feedback is regarded by the researchers as an “ideal-typical” representation of what a community-based response to Ebola should have been like, rather than a factual account of how these same communities actually responded to the incidence of Ebola. Respondents shared information that was based on their knowledge of Ebola, on community and government messages that they had received about Ebola, on resources that they sought for their communities, and on their experiences with Ebola and non-related Ebola morbidity and mortality.