Ebola diaries: Lessons in listening
Cheikh Ibrahima Niang
Cheikh Ibrahima Niang, a professor of medical and social anthropology at the Cheikh Anta Diop University in Dakar, Senegal, has researched anthropological aspects of a wide range of health issues. In July 2014, WHO asked him to investigate community attitudes to Ebola virus disease. He led a team of anthropologists to Sierra Leone just as the outbreak exploded in the eastern part of that country. This is what he found.
"I knew this was a very big challenge but on arriving in Kailahun (in Eastern Sierra Leone), I found the situation was worse than I thought. Njala, the most Ebola-affected village, was a ghost town. Ebola had killed more than 40 of its residents, nearly a third of the village. Most of the remaining people had fled. Houses were closed, there were a lot of orphans and there was nothing to eat. No one wanted to bring them food, too scared of this unknown, deadly disease. It was very hard.
People needed to be heard
Our job was to conduct a one-month study on the social aspects of Ebola virus disease. We knew that if we could better understand people’s beliefs – about Ebola, about the response, about treatment centres, about safe burials – lives would be saved. We realized that communities needed to be more included in making decisions such as where to locate Ebola treatment centres.
And most importantly, we sensed that people needed to be heard. Before you can create effective messages, you have to listen first. And even then, communities will translate medical messages into their own terms. You have to give them the knowledge that gives them power to make their own decisions.
So we did a lot of listening, without making any noise. Our approach was humble, human, discreet, focused on their concerns. No official cars, no flag waving, no uniforms. We did not make a show. In fact, WHO was the only organization that sat with villagers and listened to them for hours. And they were anxious to speak with us. Angry, frustrated, scared of this disease that was killing them and of these recommendations that clashed with their belief systems, they felt misunderstood and abandoned by the whole world.
Life and death, reality and metaphor
We learned many important things. For example, there were conceptual clashes around safe burials: in these communities, a dead person has rights and communities have certain obligations towards the deceased. If these rights are not respected, people lose credibility and respect in their communities. This is very important.
Secondly, washing the dead bodies of loved ones is not only an act of caring, but a purification rite and metaphor. The body has to be clean so that the person is pure when he or she goes to heaven. The strings around the shroud, another metaphor: when the deceased unties these strings, his or her soul is freed and ascends. And the lightness of this ascending soul yet another metaphor; the deceased has released any anger and anxiety that was weighing him or her down.
There were also some conceptual clashes around diagnostics and treatment. For example, when you give blood, when you give lab samples, these things express the person as a whole. In addition, they do not belong only to the individual, but also to the community. The body is collective and the community has some responsibility to the collective of the body. Community and group leaders in Kailahun insisted on confirming with their own eyes that there were no missing body parts before a dead person was buried.
Restoring dignity and trust
It became clear that resistance was a way people affirmed their position when their dignity felt threatened. Nobody wants to die from Ebola. When villagers said, “Ebola doesn't exist. Ebola is a poison that Westerns are sending us.” You say “ok”, and then you learn that they do not like the way they have been treated.
Once heard and understood, communities felt reassured, violence diminished. And we were well received. For example, we went to Kenema the day after Dr Sheikh Umar Khan, died of Ebola. There were riots. Police arrived and even fired on a man, hurting him. We listened to people and helped them pull themselves together. We worked with the imams, helping them to calm people.
And we went to the market and listened to the women demonstrating. Women are especially important, because they take what they learn from you and go and validate this information in their communities. These women did not want an Ebola treatment centre next to the maternity centre. “The treatment centre is a centre of death, the maternity centre is a centre of life,” they said. They were upset because nobody had consulted them when deciding the location of the treatment centre.
So we followed the outbreak, using the same listening approach in each village. As we ourselves understood more, we helped others understand what Ebola was and how to prevent it.
Lessons of simplicity, respect and humanity
What did we take away from this?
We saw the importance of letting anthropologists approach the community first, with no sirens, no announcements, no personal protective equipment, as members of the community, not as visitors. We dress as they dress, we protect ourselves the same way.
We saw the importance of having respect for the community. Some approaches we saw were too brutal. And we learned the importance of letting families communicate with their sick loved ones. We recommended this approach, even then. Let them communicate by phone, create a space where the family can come sit down and look at their loved one. Unfortunately, some of these approaches did not correspond with medical protocols at the time.
Our job as anthropologists is to help understand what happens when a person is stigmatized, and to help these people strengthen their coping mechanisms. We see value in an approach where kinship relationships play an even greater role in healthcare and healthcare delivery than medical institutions, where human beings are remedies for human beings.
For this reason, we are now working to support WHO’s efforts to develop people-centred care."