*This post originally appeared in PLOS | blogs.

When I was in Liberia in June this year, just one month after the country had been declared “Ebola-free,” I noticed how often I heard the phrase “that was before Ebola” or “that was after Ebola”. The Ebola outbreak that began in 2014 brought unspeakable horror to a country still rebuilding after the war. News of new cases in late June 2015 again catapulted the country into high alert. In September 2015, the country was once more declared Ebola-free, but not for long. Ebola’s return in mid-November 2015 has produced yet another high alert.

Thus the realization is growing that it is not “before Ebola” or “after Ebola”, it is during Ebola. Ebola is with us, with the people of West Africa.

 

August 2014

• Liberia’s President, Ellen Johnson Sirleaf declares a state of national emergency.
• The WHO declares Ebola an “international public health emergency”

May 2015

• Liberia is declared Ebola-free. Liberians heave a collective sigh of relief

July 2015

• A handful of new Ebola cases emerge.

September 2015

• The WHO once again declares Liberia free of Ebola virus transmission in the human population.

November 2015

• Three new cases of Ebola are confirmed. More than 160 people are being monitored for signs of the diseases

Source: http://www.cdc.gov/vhf/ebola/outbreaks/history/chronology.html

Before the 2014-25 Ebola outbreak that took 11,000 West African lives and made Ebola a worldwide concern, people in Liberia spoke of an event being “before the war” or “after the war.” Liberians lived through two conflict periods, the First Liberian Civil (1989 – 1996) and the Second Liberian Civil War (1999–2003).  “References to before the war and after the war is a heuristic that individuals use to frame or situate the horrors of the war and what it entails. What might be unspeakable”, says Dr. Janice Cooper, who heads up the Carter Center in Monrovia’s mental health program. “It is a reference to which we can collectively relate”.

When Ebola re-emerged in Liberia in late June 2015, there were no panicked scenes, no people collapsing in the streets. According to the Dec. 2nd 2015 WHO situation report, a monthly case tracker, the June/July outbreak was confined to six cases. But the euphoria and pride Liberians felt at having defeated the disease was over. In its place, new questions emerged about what it all meant.

Translating Complexity

At Internews, a media development organization, where I serve as Global Health Media Advisor, we had navigated this complexity alongside local Liberia-based journalists for whom we provide training to help them respond to the Ebola crisis – and who then go on to produce their reports in various media, most often working on a shoestring. We also partnered with the humanitarian community to provide two-way communication channels to affected communities.  Early in 2015, Internews set up DeySay, a rumor tracker that detects and manages Ebola-related rumors, which are coordinated and analysed for trends at a central hub in Monrovia. The tracker has picked up on wild speculation that the government of Liberia was profiteering from Ebola and recorded widely held beliefs that the disease is not real. Distrust in government is rooted in the years of civil war and conflict preceding Ebola. Also, early on in the outbreak, many people resisted treatment for Ebola because early presentation of the disease is with symptoms similar to malaria or even flu. Malaria is endemic in Liberia, and so often the (Ebola) symptoms seemed like those of a familiar disease.

“We would analyse the rumor and say: what’s the piece of information that is missing here? Where is the misunderstanding coming from? And then we provide that piece of information to our journalists and social mobilizers and religious leaders on the ground. It’s about really understanding where it’s coming from,” says Anahi Iacucci, Internews Senior Innovation Advisor, who led the Information Saves Lives project in Liberia and deployed DeySay.

In this way, DeySay has been a valuable journalistic tool used by Liberia-based reporters in the Internews training program. As rumors were collected with the DeySay tracker, myths were debunked by providing a factual correction or explanation as illustrated below:

• Rumor from Sinoe County:  There are people who are refusing to take their children to the hospital for the Polio and vitamin A immunization campaign because they believe that the government is using the campaign as a way to infect people with Ebola.
• Well-sourced and accurate response: From the 26 nation-wide Polio and vitamin A immunization campaign: Children below the age of 5 were given free drops in the mouth to protect them from the polio virus. The polio immunization campaign was not organized by the government to infect people with the Ebola virus. With the vaccination, young children are protected against the virus, to ensure that Liberia will continue to be polio free.
• Rumor from Nimba County: A woman in Nimba County was arrested after she refused health workers trying to give her child the Polio and vitamin A vaccine. She said the vaccine would infect the child with the Ebola virus.
• Well-sourced and accurate response: A parent has the right to refuse the immunization of his child. No one should be arrested for refusing to take part in the immunization campaign.

Beyond tracking rumors, Internews is also partnered with GeoPoll in a project that traces the most frequently asked questions around Ebola. During all phases of the crisis – during Ebola’s peak in July to October 2014, in the Ebola-free phase as well as after its resurgence in July 2015 – the most enduring question has been: Where does Ebola come from?  

The Medical Forensics of Ebola

Like the people of Liberia, scientists have also been asking this question; specifically, where did the new Ebola cases in Liberia come from, in late June, seven weeks after the country had been declared Ebola free, and again, in mid-November, ten weeks after the country had again been declared Ebola free.  Although their present focus is on West Africa, the question of where Ebola originated has bedeviled virologists since the virus was first identified in 1976. In time this strain would be dubbed Zaire virus. Subsequently, additional strains of the virus emerged, named for the areas where they occurred.  Later in 1976, Sudan virus was identified, a strain of the virus with a lower fatality rate than Zaire virus. Ivory Coast Ebola virus, isolated in 1994, showed slightly different characteristics again. In the period 1989–2007, three additional Ebola subtypes have been identified, Reston virus, Taï Forest virus and Bundibugyo virus. The strain of the virus present in the multiple outbreaks in West Africa since March 2014 is simply called Ebola virus.

So, where did the new cases in June 2015 come from?

A simple headline, released by Liberia’s Ministry of Health and Social Welfare, sums up a complex scientific investigation.

“Ebola virus genomes from latest flare-up rule out introduction from Guinea or Sierra Leone.”

The government’s news release further outlines the players and medical forensics that led to this conclusion:

“A joint team – including the Liberian Institute for Biomedical Research (LIBR), the United States Army Medical Research Institute for Infectious Diseases (USAMRIID) and the Liberian Ministry of Health – has sequenced the EBOV isolated from the index case in this cluster.”

As Tolbert Nyenswah, the Head of Liberia’s Incident Management System (IMS) later explained, “The form of the virus present in June was of a mutation present in Liberia, not neighboring countries. Both sequences are identical and are consistent with this cluster representing a continuation of the EBOV outbreak in Western Africa, as opposed to a separate introduction from a reservoir population.”

Say What?

Through-out the epidemic, viral sequencing had shown different mutations of the current strain found in West Africa, thus enabling scientists to identify the origin of a single infection as being a version circulating in localized parts of Liberia, Sierra Leone or Guinea. This resolution of the Ebola DNA detective story helped put an end to the common rumor that the new Ebola cases came from across the border, from Guinea or Sierra Leone. Or did it?  As the science on Ebola has unfolded, those most affected have been trying to make sense of the complex procedures utilized in scientific laboratories to arrive at such conclusions. However, this language is not easy to follow if you’re new to molecular genetics. So, the question local journalists repeatedly faced was How can we make sure this critical information is broadly understood by the people? 

Internews trainee Eric Opa Doue of Echo Radio, which provides Ebola news in Rive Cess County, Liberia. Photo by: Andre Smith/Internews

“This news is in deep science, not in English,” says Eric Opa Doue, a community radio journalist in the Internews health training program who holds a degree from the Ghana School of Journalism.

“I first need to digest and simplify it, then send it to the translation department at my station, to ensure the message is correctly deciphered in Kru and Bassa languages for my audience, so that everyone will understand. For example, Opa Doue asks, “what does the following sentence (from the Liberian government’s news release) mean – in plain language:

‘The sequence groups closely with previous isolates from Liberia and is distinct from the viruses currently circulating in Sierra Leona and Guinea.’”

Most importantly, local Internews reports focused on the fact that this scientific finding ruled out cross-border transmission from Sierra Leone or Guinea. It also ruled out rumors, including that the boy died from eating infected dog meat. In essence, the message became the fact that this was the same Ebola they’d been dealing with since 2014.

“Ebola Deeply”

Ebola Deeply, an independent global digital media project led by journalists and technologists whose goal is to “build a better user experience of the story by adding context to content,” also took on this challenge. Work such as their two-part series Unlocking Ebola’s Secrets has been helpful to Internews trainees and others following and attempting to explain this story. To produce this report, the Ebola Deeply team visited Liberia’s genome sequencing center where researchers examined the genome of viral samples taken from the 17-year old boy who died in the town of Smell no Taste in Margibi County. There they learned that by using genome sequencing, the scientists were able to determine that the viral strain in the boy’s body was genetically similar to that circulating in this area of Liberia last year. The viral forensics had shown that the virus which killed the 17-year-old young man in June 2015 and which caused Ebola to re-emergence in a small pocket in his town in Margibi County, had the same signature as the virus present in his area earlier in 2015.

As the Ebola Deeply journalists explained in Unlocking Ebola’s Secrets, the process of genome sequencing is like “turning the pages of the virus’s personal diary”.

Learning (More) from Ebola

Toward the end of July 2015, the WHO’s Dr Bruce Aylward and colleagues from the US Centers for Disease Control and the Liberian Ministry of Health told humanitarians responding to the Ebola crisis that the world of science is braced for a period of immense learning.  The West African Ebola epidemic has been the most devastating the world has seen. More than 11,000 people have died, and, connected to this scale and to an increasingly more efficient Ebola response, is the fact that this epidemic has left behind the largest number of Ebola survivors ever – people who have been infected, but who did not die of Ebola. To families, these are loved ones who are still with them; to science, this is an opportunity to unravel some of the many questions about Ebola that remain unanswered.

What scientists like Aylward are now saying about Ebola are things that could not have been tackled in the horror and haste of the humanitarian crisis, when the entire focus was about saving lives and preventing transmission to caregivers from those who were dying.

In part two, I discuss what is being learned about new modes of Ebola virus transmission and the public health messages that are being prepared and implemented to communicate the implications for the people of Liberia.

The journal Nature has a special on Ebola, collecting all its reporting on the virus in one place. One of those articles, Models overestimate Ebola cases, is on the failure of mathematical models to accurately predict the epidemic’s course. In an interesting letter responding to that article, the authors credit “altered cultural perception” that allowed for behavior change, changing the course of the epidemic for the better.

Below is the text of the response. The letter, along with others from the November 26th issue, can be found here on Nature’s website.

Ebola: the power of behaviour change

Without including social, cultural and behavioural responses to the Ebola epidemic, models may overestimate outbreak size (Nature 515, 18; 2014).

Behavioural response, triggered by an epidemic, can slow down or even stop virus transmission (see S. Funk et al. Proc. Natl Acad. Sci. USA 106, 6872–6877; 2009). Indeed, altered cultural perception in response to the disease enabled people’s behaviour to change in ways that helped to contain outbreaks in the past (see B. S. Hewlett and R. P. Amola Emerg. Infect. Dis. 9, 1242–1248; 2003).

Reports from Foya in Liberia indicate that the outbreak there is now in decline. A local information campaign to change funeral practices and other behaviours seems to have paid off.

More aid and more personnel are urgently needed, but so is the involvement of local communities and the provision of information that can help to contain this epidemic.

Sebastian Funk, Gwenan M. Knight London School of Hygiene & Tropical Medicine, London, UK.
Vincent A. A. Jansen Royal Holloway University of London, Egham, Surrey, UK.

 

In ancient Greece, slaves and traitors and other undesirables were marked or branded to show their lowly status and allow people to shun them. From that practice we get the word stigma, or mark. Today we use the word to describe the discrimination and social shunning people experience for myriad different reasons – sexual orientation, disease status, weight, ethnicity. As Ebola has spread, so has the stigma associated with the disease. People touched by Ebola – who themselves have it or have had it, who care for people with it, or who come from countries suffering from it – are marked.

A few things suggest why stigma has followed Ebola in a way that it hasn’t for, say, influenza, which kills far more people every year all over the globe.

• Novelty. We humans don’t like what we don’t know. We tend to distrust new people, technologies, and diseases more than we distrust known, dangerous, but familiar things.
• Fear. Being afraid can make us act in ways we otherwise wouldn’t, pushing away others in need of care because their disease frightens us so badly.
• Other-ness. When things are frightening and new, it is comforting to be able to say “I can’t get it, because I’m not like her.” It either creates an “Us versus Them” dynamic to create mental separation between those at risk and those not (even if only in the imagination) or it exacerbates existing Us versus Them dynamics with previously stigmatized groups (think injection drug use and homosexuality at the start of the HIV epidemic).

The reaction of many in the US is illustrative of the Novelty/Fear/Other-ness dynamic: – Ebola is frightening, new to the US, and is brought to us from far away by them. Perhaps it should be unsurprising that the family of the Liberian man who died of Ebola in Dallas has experienced stigma and shunning, and that nurses, doctors, journalists, and aid workers of all types coming back from Liberia, Sierra Leone, and Guinea have also been excluded, quarantined, and feared. That Liberians, Sierra Leoneans, Guineans, and Nigerians – and their children – living in the US have experienced shunning and humiliation is appalling. The much more deadly impact of stigma, however, is in the countries where Ebola is epidemic.

Why does stigma matter so much in countries facing epidemics? It is because stigma leads to hiding of the disease, and that leads to further transmission. If people are afraid of a disease not just for itself, but for what people will do to them (or not do for them) if they have it, they are less likely to report symptoms and seek care. Stigma also limits communities’ ability to care for children who are sickened or orphaned by the disease and it prevents communities from welcoming survivors back into the fold. Survivors are potential game-changers in their communities, able to care for people with the virus without falling ill again. It is essential that communities find ways to welcome them home. In Liberia, at least, there is anecdotal evidence that stigma is receding as correct knowledge grows and survivors come home. This article in the Washington Post illustrates both the stigma and the resilience of a community working to care for kids impacted by Ebola.

Other health conditions face stigma, too, and we can learn from those experiences. The comparison everyone is making is to HIV/AIDS, of course, but other epidemics may have more relevance. For example cholera, like Ebola, is communicable, deadly, pops up in difficult to extinguish epidemics, and its sufferers and survivors experience stigma. In Haiti, not only the people with cholera experience stigma, but so do the people who are integral to preventing it, the men who clean and maintain latrines. The IRC has developed some key messages and materials to battle stigma and these illustrate the simplicity of the messaging and desired action response: cholera is a disease like any other; help people, but protect yourself; cholera can’t be spread by shaking hands.

From a communication perspective, what can be done to reduce stigma and help communities get beyond their fear to care for their own? What messages and channels should be the focus? Here are some areas for messaging:

• Communicate correct knowledge on transmission and risk (a person who isn’t sick isn’t a risk to me, even if the person has recovered from Ebola)
• Increase people’s sense of self-efficacy for prevention (I know what I can do to protect myself and my family)
• Promote the role of people who have survived Ebola (survivors are assets to my community)
• Care and compassion for children who have lost their care givers (we are all responsible for taking care of the community’s children)

As with any communication, the message you need to convey and the audience you are trying to reach will guide you in figuring out how to communicate. For example, mass media campaign type work can help with correct knowledge, but isn’t very effective for transmitting complicated information; entertainment education can help model change and promote pro-social behavior, but can be time consuming to produce and air; community mobilization can work to organize people to respond, and provides opportunities for dialogue with religious and cultural leaders. All of these channels (each with their strengths and limits) are more powerful when they are used together, because multi-channel interventions extend reach and are mutually reinforcing.

If you Google “brochure” and “family planning,” you get page after page of links to brochures, most of them to reputable materials you can use. But replace “family planning” with “Ebola,” and there aren’t so many options.

The outbreak, and our response, is simply too new. If you are in need of a brochure (or poster or radio spot or whole communication strategy) for Ebola – and you need it now, of course – you are going to have to build one. Luckily, you won’t have to do it from scratch.

There are communication materials for Ebola, and the Ebola Communication Network is making sure that they are being shared. But even if you find something that you think might meet your communication needs, you still are going to have to adapt it. Why? Because communication materials work best when they are specifically designed with an audience, topic and action in mind.

For example, this nice poster was developed by the Ministry of Health and Social Welfare (MOHSW) and UNICEF in Liberia. Let’s say you want to use it somewhere else. Would it work? Could you just change the hotline number and the country logo and order a print run? Here are some things to consider before you do.

1. What is my goal? What do I want people to know and do?

These are the first questions to ask. If the material doesn’t clearly and directly address the knowledge, behaviors or beliefs that you want to change, you are going to have to do an adaptation. This poster, for example, would be appropriate if your goal is for people to know the symptoms, call for help when they are sick and allow care by health care workers. This poster is appropriate in an active epidemic context where people have access to Ebola Treatment Units. But if you are working in a context where there are currently no Ebola cases but the community needs to prepare for a possible epidemic, the messaging will change to awareness of the signs and symptoms, rather than seeking care. In other words, your communication goal is going to be different in different places, and it will need to change over time as the situation changes, and your materials will need to change as well.

2. Is it right for my audience?

On a very basic level, you need to be sure that the people you are trying to reach can access and understand the information. If you are trying to reach poor women in an urban slum, because they are the family caregivers, you’ll need to be careful that the material is appropriate for a low literacy audience, and that the materials appeal to and catch the eye of the people who need to see it. So first define your audience, and then make sure the material is accessible and understandable to them. Two areas in particular are important when adapting for specific audiences:

Language: People are most likely to absorb the message of a material if the language is the language spoken in their home and community. Even if someone can speak English (or French, or what have you), the material might be more effective in a native tongue, especially if the material contains information that is influenced by culture. That creates a trade off: translating into multiple local languages and creating distribution plans for different sets of materials is more expensive and more time consuming than producing material in one language, and having one plan for its dissemination. But a material that isn’t understood or is ignored because it is perceived as coming from outside the community isn’t going to work, and that is an even bigger waste of time and money.

Images: Like language, pictures matter. If the material has graphics of people, houses, food, etc. they should look like the people, houses and food of the community for which the material is designed. Sometimes the graphics are simple enough that specific cultural or geographic cues aren’t noticeable, but often they are vitally important and getting it wrong can cause offense.

3. Is the information correct for my context?

Information that is correct in one context may be dead wrong in another. Carefully review the material to make sure that the information lines up with what local authorities are advising. Make sure hotline numbers, addresses and names of service providers are locally adapted.

4. Does the material have key messages?

Even if the information is generally what you want to communicate, materials are most effective when they have a few key messages. The Liberia poster is a good example of focus on a few key messages: the symptoms of Ebola and the steps to take if you have it. Sometimes communication materials can get too wordy or have too much information to absorb. Stick to a few key messages and if there is more information that is essential to communicate, put it on another material and distribute as companion pieces or try a different format.

There are many situations where a print material (or a radio PSA, or other short form mass communication) isn’t the appropriate way to communicate information. Complicated, in-depth information or information that contradicts cultural norms is best conveyed inter-personally or using video. This allows for back-and-forth communication with a trusted source (in the case of interpersonal communication) or at least modeling of behavior (in the case of a video). An example of complicated information would be how to care for sick family members at home while waiting for help. The instruction is best done by community health workers, while a print material or PSA could be used to encourage people to talk to those workers to get more information.

A sub-category of the key message is the “call to action,” which is the behavior you want people to take as a result of exposure to your material. This should never be ambiguous to you or your audience. Examples might be: “if someone in your family has a fever, call for care” or “protect yourself and your family, don’t touch dead bodies.” You should test the exact language of your call to action with the community to be sure you get it right.

So, say you have found a material that seems very close to what you need for your intervention. You have determined that it is appropriate for your audience, translated it into a few local languages and adjusted the language so it has a few key messages and a call to action that fits your context. Can you send it to the print house? Nope, not yet. One last important step.

5. Pre-test.

Before you invest time and money in producing materials, you need to be sure the audience understands them and reacts to them the way you intend. A pre-test doesn’t need to be formal or conducted by researchers. Here is a guide to conducting pretesting. When it comes to pretesting, do what you can do. Don’t decide to do none at all because you can’t do it the way the book tells you to. Any feedback is better than none.

Finally, a plea. If you are developing Ebola communication materials, or adapting existing materials, please share them with the Ebola Communication Network so others can adapt them all over again.