A total of 12 EVD burial workers were interviewed. We present the results from each aim as follows: Aim 1, where questions focused on the popular conceptions of the origins of the current EVD outbreak. Under this aim, we identified three major themes. We also recognized temporal shifts in people’s attitudes and also describe those under Aim 1. Aim 2 focuses on responses to questions about the barriers workers faced doing their jobs; participant reports crystallized on 3 major barriers. Finally, we identified 5 key supports upon which burial workers relied to do their jobs and describe those under Aim 3.
Aim 1: Determine the common/popular conceptions of the origins and causes of current Ebola outbreak in Beni Town
Theme 1: Politics
The most common community-perceived cause of the Ebola outbreak, noted in responses to open-ended questions by almost all (11/12) interviewees, was politics. The transcripts reflected a widespread belief in Beni Town that members of the government of the DRC had either created or made up the disease in order to maintain power. One participant reported, “The people of Beni said that Ebola does not exist. ‘Health workers deceive us, it's politics.’” (Joelle). Workers identified three common opinions among community members that explained why politicians would deliberately introduce Ebola into the area: voting restrictions, tribal persecution, and monetary gain.
The first suggestion was that the disease was a cover, giving the government an excuse to exclude the region from voting in an important election. In December of 2018, a presidential election took place in the DRC that removed the incumbent Joseph Kabila and elected opposition leader Félix Tshisekedi to the position (27). Former President Kabila was referred to in a negative manner twice, and the December presidential election was specified once, referred to simply as ‘the election’ in other transcripts.
“In the community, people say that the Ebola virus disease was imported by the government of former President Kabila, so as to prevent the holding of elections, to remain in power” – Kaswera
“I can say that stories that people told me were basically about December 31 because three days before the elections it was declared that the population of Beni was not going to vote and people concluded that those same people created the epidemic to penalize the population.” – Felix
The second political reason for the Ebola outbreak mentioned by interviewees was tribalism and the persecution of the Nande tribe specifically. One worker mentioned that the province of North Kivu, which includes Beni Town, is majority Nande. There is a belief that the people of Beni Town are being attacked because of their leader’s tribe.
“It was said that the massacres failed, they have imported Ebola, that's what people say. Even scholars told us that Ebola is a disease that was conceived by scientists and used by politicians to play their games, to show the leader from this region he is nothing, as he is Nande. Therefore, his people will be exterminated.” – Kaswera
Finally, participants reported that there was a perception among community members that the government benefits financially from the epidemic. Non-governmental organizations (NGOs) sent aid and humanitarian assistance to Beni Town and the DRC to alleviate suffering caused by the violence and then the Ebola outbreak, and some community members perceived the relationship between the NGOs and the government to be opaque and corrupt (11).
“It is said, for example, that if this epidemic recurs, it is because of the Congolese government. The government is making money from the epidemic, then foreigners bring us money.” – Bienfait
These three mechanisms (voting exclusion, tribal persecution, and monetary gain) were the most commonly reported community conceptions of how the government may be using the Ebola outbreak to its advantage. These specific conceptions are based on underlying notions within the community. One such notion, brought up by five different interviewees, was that the timing of the outbreak intertwined with instability and violence in the country. They noted that as the outbreak came at a time when politically-motivated violence was sweeping the region, the two things could be perceived as tied together. Community members were often unable to disentangle the two, therefore transferring their blame on the government from the violence to the disease outbreak. A notion mentioned multiple times was that the violence was the first step taken by the government to meet their end goals, and when that was ineffective, officials turned to utilizing Ebola as a weapon.
“Really the people of Beni unhappily learned about Ebola in Beni, Ebola arrived in a war period. They thought it was politics.” – Francine
Theme 2: The (Super)natural
When asked an open-ended question about community conceptions of Ebola, many interviewees brought up stories focused on spiritual or metaphysical origins. All 12 interviewees recognized that community members sometimes turned to traditional healers when they were trying to prevent or treat Ebola. They turned to traditional healers for a variety of reasons, including the lack of trust in the government health system and the belief that Ebola had supernatural origins requiring treatment that health facilities could not provide.
More than half of the participants stated that there are community members who believe in metaphysical origins of the disease. Of those who mentioned metaphysical origins, most interviewees directly mentioned witchcraft or evil spirits.
Yes, some people turn to these imams, pastors, believing that they are possessed by evil spirits - Dieu-donné
On Ebola, people have told me that the origin of Ebola is that some people would have eaten cat meat, others say it is witchcraft. And it's almost everyone who talks about witchcraft and politics. – Adèle
A few of those interviewees who referenced metaphysical origins specifically mentioned a cat as a central figure in stories about the origins of EVD, though the specifics differed. Joelle related how some community members describe the owner of the cat as casting curses while Francine referred to community rumors in which the cat was believed to be magical itself. Adèle’s quote above simply mentions community members referencing eating cat meat as the disease origin.
Some people say it comes from a cat. People ate the cat. The owner of the cat started to cast curses. – Joelle
There are rumors that people in Mangina ate a magic cat and the magic followed them -Francine
Notably, five burial workers asserted that they themselves (unrelated to community conceptions) were aware that the cause is animals. Three mentioned bats, which much scientific evidence points to as an important reservoir of Ebola, a zoonotic disease (16, 28). Given that they have received formal training to conduct their work, it is likely that EVD burial workers had more access to scientific information on EVD than the community at large.
Far away, we know the origin of the Ebola virus. It’s said that it first appeared in Congo and was caused by a bat, which is the reservoir of the virus. -Felix
Theme 3: Human Transmission
Interviewees reported that community members seemed to have a general understanding that human-to-human transmission of Ebola occurs, and this was often reflected in stories of individuals who brought the disease to different places.
Others say that it came with one military person from Equator province to North Kivu. That's the origin of the disease in Mangina. – Joelle
This was also shown through stories of prevention and treatment practices. Although these were not directly related to the causes of Ebola, the comments show an awareness of human-to-human transmission that offers a glimpse into the community’s understanding of how the disease moves, and therefore how it arrived in Beni Town.
Apart from hand-washing, the population is abstaining when there is a case of death; they refrain from touching the body or sitting where there is a case of death. – Bienfait
Five burial workers clarified their own understanding that the disease was brought to Beni Town by a person, all with a specific individual, a wood cutter, in mind. This likely represents the information being provided by the Red Cross or another common authority, as the statements were very similar across all five interviewees.
According to our training, Ebola is here in Beni and Mangina because of the wood cutter who came from Mbandaka and died in Mangina from Ebola virus disease. – Francine
The epidemic is caused by a wood cutter who came from the equator province and died in Mangina. – David
Other: Understanding of Ebola Over Time
Seven interviewees stated that the community’s perceptions of Ebola and its causes had changed for the better over time. At the beginning, the community’s attitude towards the disease was characterized by uncertainty, suspicion, and skepticism. The controversy over the December election played a role in this uncertainty, blurring the lines between truth and reality.
The reaction of the people of Beni was very bad because the people said that it is politics, a reason to delay the vote or it is a human sacrifice from the president of the Republic. - Adèle
A lack of trust in the entities communicating the message about Ebola also shaped the initial conceptions of the community with cynicism and doubt.
The people in Beni said that Ebola does not exist and that it is a phenomenon to make money and they add that if Ebola existed many people and animals would be dead. - Francine
Over time, however, opinions changed and community attitudes shifted. A few interviewees attributed this process specifically to sensitization and awareness-raising done by the burial workers themselves.
Yes, there are changes. For example, in beginning, my neighborhood and people around me didn’t look at me positively. Even when our visitors from other provinces began to raise awareness, the community saw them badly. But today, the more we raise awareness in our community, they are convinced. We communicate very well. – Joelle
A couple interviewees ascribed the shift in understanding to the increase in deaths within families and social circles. Eventually, the evidence of the existence of a fatal disease became indisputable.
There are people who start understanding that the epidemic exists because as one person from their family could be buried and the family keeps resisting. then the younger brother of the dead could fall sick and passed on. We have tangible proofs as it is our work. – Felix
However, a few interviewees confessed that there remained resistance to the reality of Ebola. One believed that the minority of the community members were fighting back against the response teams while another believed it was the majority. A third interviewee, Negasse, believed that although many people have not come to an understanding, progress is being made over time.
Until today there are those who still resist. – Kaswera
I think that many people have not yet realized the reality of Ebola but little by little they are beginning to understand that the disease exists. - Negasse
Aim 2: Major barriers that burial workers face in delivering appropriate care
Theme 1: Violence towards burial workers
When asked what experiences impacted their work, all interviewees cited violence as a barrier to delivering appropriate care. All interviewees reported experiencing either physical assault and/or verbal assault when attempting to conduct safe burials in communities. Three-quarters of interviewees reported stones being thrown at them and/or their vehicles, experiencing verbal insults and physical assault, and at least one more interviewee experiencing verbal insults, but not physical assault. When interviewees were asked to describe the main difficulties or challenges burial workers encountered in Beni Town and in the deliverance of their care, several interviewees identified violence as the most significant barrier.
When it comes to safe and dignified burial, sometimes we fight, people attack us even to the point where they want to beat us or put us in the tomb. But those who know that the disease exists, implore us; but those who do not know that the disease exists, even want to kill us at the graveyards. So they want to bury us alive in the place of the corpse. — Bienfait
Whether asked directly or raising concerns voluntarily, three-quarters of interviewees reported fears of being attacked for their work. As a result of experiencing violence, interviewees reported experiencing psychological concerns, such as trauma, mood and affect changes, and lack of sleep. When asked about how these experiences impact people’s work, interviewees responded affirmatively with statements such as,
Yes, especially in my team ... I can say that it is the trauma. — Joelle
There are times this fear gives me insomnia and nightmare (I dream for example of people who knock at my door or ask me for money) because the community says that we earn a lot of money. —Bienfait
Our mood, when we are called by saying that this is a positive case, we also get emotions, and we wonder when this epidemic will end? —Joelle
Theme 2: Community’s mistrust and misinformation regarding EVD and caregivers’ work.
Another reported barrier for burial workers to the delivery of appropriate care was community members’ mistrust and misinformation regarding EVD and burial workers’ work. Ten of the 12 interviewees mentioned that community members incorrectly believe burial workers are paid exorbitant amounts of money to do their work, as Dieu-donné expressed,
People often say that we are the ones who receive a lot of money and yet we as volunteers do not have a contract, we are volunteers, and we can only have a small per diem so that we could eat well at home. —Dieu-donné
Interviewees also reported misinformation surrounding rumors that burial workers were harvesting organs and body parts to sell. These rumors in turn made community members mistrustful of burial workers when they would come to remove bodies or perform safe burials.
And also in the community people say that the response teams work for Kabila as they look for some parts on the corpse body. So, when someone is dead, his sex and tongue are cut off. So, there parts of the body that are cut to sell somewhere. These are the rumors in the community. —Dieu-donné
Interviewees revealed how common and popular community conceptions of the origins and causes of the Ebola outbreak are founded in misinformation, leading to community members mistrusting burial workers. This mistrust in turn is manifested through violent acts against burial workers.
Theme 3: Resource availability
While the research team initially hypothesized that a lack of resources would be a significant barrier for burial workers in conducting their work, when asked whether workers received adequate materials to conduct their work, all interviewees responded affirmatively.
Interviewer: According to you, in your job or jobs, did you receive the necessary resources from you and your colleagues to help you work effectively?
Interviewee: Answer: yes, we have the chlorine, other medical combinations, spades … which helps us to prevent [infection]. —Felix
Aim 3: Support Systems Available To Burial Workers
In each transcript, interviewees were asked questions regarding support systems available to burial workers. Interviewees identified five major sources of support. First, all interviewees mentioned the importance of their co-workers and the support of the Red Cross for their work. As Kaswera reported,
At home we are like brothers, so we take the other as our brothers and sisters, we love each other. When we are at the head quarters we play cards. When there was a difficulty and that one of us got sick, all of us went to support him, to see him. So the teams of SAFE AND DIGNIFIED BURIAL of the Red Cross are really well bonded, we collaborate, there is love between us. —Kaswera
All interviewees also mentioned the importance of family and friends for coping with the difficulties of their job. As Jean affirmed,
I do not speak about problems or difficulties of my work because it is confidential. When it comes to support, I get support from my family and friends. My work did not affect my relationships. —Jean
Bethesda Counseling Center, the recruitment site for this study, was also mentioned by all respondents. The group counseling was identified as vitally important,
Interviewer: So, you were part of a support group at Bethesda Counseling Center, did participation in this program help you?
Interviewee: Yes, it helped us a lot; moreover the team wanted us to continue with it. What we did not know and that we learned was just how we can take care in case of difficulty. For example, when you are angry, when you remember what you have been taught, you take care of yourself. —Bienfait
Most participants mentioned their faith or religion providing comfort and support. For example, Adèle stated,
Indeed, my faith helped me to do my job more effectively. It has helped me to the extent that it gives me the freedom to do this work and encourages me. —Adèle
And finally, participants also recounted how they found personal relaxation and important way to manage the demands of their job. As David shared,
Interviewer: What kinds of things do you do to relax?
Interviewee: I listen to music and look for a loved one to share stories. —David