When public health workers began canvassing West African villages this spring and summer warning of something called Ebola, they were met with fear — but not of the deadly virus.
One village locked itself down to keep relief workers out, while residents drove the workers out of another after being told they couldn't bury an Ebola victim according to their customs, said Timothy Roberton, a doctoral student at the Johns Hopkins University's Bloomberg School of Public Health. Residents said the outbreak was a scheme to collect aid money, or even to collect body parts.
It wasn't until they saw Ebola's death toll that residents began to trust health workers. But if that trust had been in place when the virus first appeared, the outbreak, which has killed 5,000 people this year, might have gone differently, according to Roberton and Hopkins colleagues, who evaluated the outbreak response for the Red Cross.
The lesson will be a significant one going forward as Guinea, Liberia and Sierra Leone continue to fight the epidemic, and as public health officials work to prevent future epidemics. Though significant progress has been made in adopting protective gear and even hand-washing, relief workers and public health experts say more education is needed, and a foundation of public health infrastructure needs to be laid.
Roberton and colleagues are set to return to the region later this month to explore how the response has evolved, and what tweaks are needed — including to efforts to continue improving how messages to prevent Ebola's spread are shared.
"The disease will carry on unless we find some way to help people change their behaviors and stop the spread of the disease," Roberton said. "It's something that perhaps deserves more attention than it's gotten. I think people on the ground are realizing that now."
Roberton is presenting the results of his research at the American Public Health Association's annual meeting in New Orleans on Monday.
Roberton and Bloomberg classmate Clementine Fu spent two weeks in July interviewing dozens of health workers around Guéckédou, the Guinean town where the outbreak was traced to starting in a toddler.
For the workers, even distributing hygiene kits and teaching people how to disinfect their homes was difficult. Many people couldn't read or write, so the messages had to be explained verbally, requiring translators. But the instructions were nonetheless often baffling.
Residents were told if their children got sick, they couldn't touch them, and if a family member died, they were told not to perform customary washing of the body, instead burying it inside a body bag.
Some villages wouldn't let health workers in for months. One accused the health workers of lying and drove them out, Roberton said.
Even after they explained Ebola, including that it has no cure, some workers were surprised at how few people sought medical care. But they soon realized it was because the message they shared told people there was nothing to be done if they contracted the virus, so they decided they would rather die at home — helping to feed Ebola's spread.
"After that, people realized we've got to be more careful about how we craft our messages," Roberton said.
Some of the misunderstanding has received media coverage. In September, for example, residents of a remote village in southeastern Guinea killed eight people who were trying to educate locals about Ebola.
"They are in a post-conflict behavior," said Pierre Formenty, a World Health Organization expert, during a news briefing days later. "There is lack of trust obviously between these populations and the different governments for the three countries."
Other examples have spread through communities of West African immigrants.
"At first they throught it was rumors, because they couldn't see the Ebola," said Johnetta Flomo, a Randallstown resident and Liberia native who is president of the North America Liberia Adventist Association. They were incredulous at advice not to eat certain meat — a staple of their diet — because animals might be infected with the virus.
"That's like they told them, 'We want you to die,'" Flomo said.
But education has improved as the death toll has accelerated.
"Everywhere you go, people acknowledge that Ebola is real and it's a threat and it can kill you, which in and of itself is significant," said Michael Stulman, Catholic Relief Services' regional information officer for West and Central Africa, in an interview from Senegal.
The importance of trust between communities and health workers is becoming more evident, Stulman said. The Baltimore-based organization's existing relationships in the region when the outbreak began were a significant advantage, he said, and education continues to be a key focus of its ongoing relief efforts.
When they return to Guinea later this month, Roberton, along with Bloomberg professor Dr. Gilbert Burnham, also will study what sort of education is most important, and what other changes are needed to help in the fight against Ebola. They plan to look at how the contacts of Ebola patients are traced, how dead bodies are handled, how well health workers are being trained and supervised, and how safe they feel.
"Clearly there's still a lot of work to be done," Roberton said. "If we can figure out ways to tweak the current strategies ... that would be hugely valuable."
And the more lasting lesson, once the Ebola outbreak wanes, will be the importance of public health organizations establishing a presence and forming relationships in developing countries, he said.
"I hope, as a result, people will see the need to invest in health care," Stulman said.
Reuters contributed to this article.