Communication Research on SARS and Its Application for Ebola Stigma

Contending with the Ebola outbreak in West Africa has presented an enormous challenge for public health response. However, the decreasing incidence of cases in certain regions of West Africa masks a looming challenge—namely, how do we manage the stigma attached to Ebola survivors as populations recover from this public health crisis?

A poster warns travelers about Severe Acute Respiratory Syndrome (SARS) at Soekarno Hatta International airport in Jakarta, Indonesia. The poster was produced by the Johns Hopkins Bloomberg School of Public Health/Center for Communication Programs, as part of the KUIS and STARH projects. © 2004 Catherine Harbour, Courtesy of Photoshare

A poster warns travelers about Severe Acute Respiratory Syndrome (SARS) at Soekarno Hatta International airport in Jakarta, Indonesia.
© 2004 Catherine Harbour, Courtesy of Photoshare

During and after an outbreak of emergent infectious disease, fear is itself a contagious agent. Indeed, overcoming psychological contagion is among the most difficult dimensions of public health recovery. The gruesome physical manifestations of Ebola present a perfect recipe for contagious fear, not only among those infected by the disease, but also toward those same individuals should they survive it. This is a painful paradox.

Individuals who survive Ebola develop antibodies that can save the lives of others who are infected. Despite this clinical reality, these antibodies do nothing to protect survivors from long-term ostracism and psychological scars. Prior experience of SARS is illustrative* as it painfully highlighted the power of an emergent infectious disease to stigmatize those who manage to physically recover from it; thus, introducing psychological wounds that can endure long after the infection resolves.

Against this backdrop, health communication efforts can and must play a central role in mitigating stigma toward survivors of Ebola (and other new potential infectious disease outbreaks on the horizon). As communication researcher Peter Sandman has aptly noted, risk perception is the sum of the actual hazard and the outrage (sometimes referred to as ‘dread’ or ‘fear’) accompanying that hazard.

Accordingly, effective risk communication to reduce stigma among Ebola survivors needs to address not only the clinical facts of the disease, but also the sense of dread directed toward those who have been infected by it and who must resume their lives if they’re fortunate enough to have survived. Communication research on SARS has highlighted the importance of health communication campaigns targeted for those at risk of stigma and ostracism, as part of a broader societal-level health communication campaign. Disease survivors at risk of stigma range from members of the general public to health practitioners who may become infected in the course of treating others. Enlisting trusted agents, such as faith-based community leaders, to deliver de-stigmatizing risk messages can aid such vital communication efforts.

Of course, addressing disease-survivor stigma entails recognizing its existence. Ongoing monitoring of traditional and social media content is thus needed to help public health authorities and other risk communication purveyors identify emergence and patterns of stigma at local, national and regional levels. Research can further increase situational awareness of stigma’s prevalence through focus groups, key informant interviews and/or quantitative surveys.

Stigma can have profound economic and quality-of-life impacts on those who experience it and these impacts regrettably can become part of the “new normal” following such outbreaks. In turn, this maladaptive “new normal” can have significant and tragic social justice-related effects on those who have already directly faced the ravages of a terrifying illness. Effective outbreak-related risk communication messaging therefore needs to focus explicitly on de-stigmatizing survivors, to create a constructive new normal without discrimination based on history of illness. In that critical regard, targeted risk communication to reduce stigma toward Ebola survivors can thus help to decrease the very real potential of long-term psychosocial insult on top of physical injury and illness.

*Additional References:

Person et al:
Verma et al.:
Lee et al.:

Encouraging Condom Use or Abstinence for Ebola Survivors

Encouraging Condom Use or Abstinence for Ebola Survivors

Of all the searing images that have come from the Ebola epidemic, the ones that stay with me are the ones that show the loneliness of the disease. The child dying on the floor, the people standing behind yellow caution tape, the impenetrable barrier of the protective suit that prevents the sick from feeling the touch of a caring human hand. How do people endure this kind of isolation? And how must it feel to survive Ebola, to survive this loneliness, and then to face more isolation and loneliness when you return home?


Sexual transmission of Ebola is real.

Of course stigma is one cause of isolation for survivors, but another is becoming increasingly clear: sexual transmission of Ebola is real, and we must ask survivors to be very careful not to pass Ebola to a sex partner. They must use a condom or abstain from sex for weeks – both of which are options that put a barrier (however thin and beautifully packaged!) between a traumatized Ebola survivor and a welcome, needed act of intimacy and love.

So how do you communicate about protecting your lover (or yourself) from Ebola? There are a couple of pieces of good news here. First, we actually know quite a bit about communicating with people about sexual behavior, particularly about using condoms. Second, men can pass Ebola to their partners for seven weeks. This may seem like an eternity to a man recovering from the kind of isolation that Ebola wreaks, but the risk does end and life can go back to normal, unlike sexual behavior for someone with, say, HIV.

There are many successful HIV prevention programs that focus on changing sexual behavior in different ways to mitigate risk. Here is a link to some HIV/AIDS program examples, most of which address sexual behavior for different audiences.

These materials and strategies won’t work if just applied to Ebola in Sierra Leone, of course. This recent study from Sierra Leone on the mental health impact of Ebola (done by the International Medical Corps in the Port Loko District) gives some insight into the ways in which materials for survivors and their sexual partners might be best designed, even though the study is small. The main idea I took away was – again – the weight of loneliness, loss, grief, fear, stigma and isolation that sufferers and survivors bear. It would be unconscionable to inadvertently make that burden worse by producing materials that reinforce separation, rather than connection.

If I were designing materials for Ebola survivors about sexual transmission, what would I keep in mind? I think one overriding theme comes through, maybe best illustrated by the images on condom packages. Are they covered with serious health messages? No. We save that for cigarette packages. Instead they are covered with pictures and words that evoke the act of love, in all its human permutations, depending on the brand and its intended market. In other words, you can’t sell condoms with HIV or Ebola. You sell condoms with sex. Likewise, we won’t be able to “sell” condom use and abstinence for Ebola survivors with fear and trembling. You can’t make intimacy about fear – you have to make intimacy about love, even when love means abstaining from the act of it, if only for a time.

Shedding New Light on Ebola Stigma Through an Old Christmas Song

ebolastigmapostAlthough we won’t hear about Rudolph the red-nosed reindeer for another 11 months, I’ll be thinking about him for a while. Last month I attended mass at St. Therese Parish of Seattle led by Maurice Mamba. Father Mamba’s spoke passionately about the exclusion Rudolph faced from the other reindeer because of his differences. Rudolph, of course, was accepted after his special trait helped in a way none of the other reindeer could. The point was, Father Mamba said in his Congolese accent, it’s important to accept others as they are, no matter how different they may be.

The story reminded me of the two years (2003-2005) I spent in Zambia and the stigma people living with HIV faced there. I also thought about Father Mamba’s home country which experienced an outbreak of Ebola last year in September as well as the epidemic raging now in West Africa. I thought about the people in Sierra Leone who were prohibited from celebrating Christmas outside their homes.

As reported by Reuters, Kadija Kargbo, a man living in the Sierra Leone capital of Freetown, was somber about Christmas: “We want to avoid contact because of this deadly disease. It’s necessary but I am not really happy. Normally we have a lot of fun with family and friends, but we just have to stay home.”

Also not far from my mind were the stigmatized Ebola survivors, many of whom lost family members in addition to suffering from the virus themselves. You can read some of their stories in a Social Mobilisation Action Consortium resource, developed to show showcase their trials and tribulations, but also their hope for the future. A survivor named Juliana, a student from the town of Bo, shared her story:

I went to the hospital and the test showed I had Ebola so I was admitted to the treatment centre. After some time in the treatment centre, I started to get better until one day they did the test and it showed I no longer had Ebola and could be discharged. Now I feel healthy in my body but my mind is struggling because I lost my cousin, my fiancé and my 11-month old son to Ebola. In the community people are scared to come close to me, but they are happy I am alive. People are surprised. They say hello, but they don’t touch me or want to share meals with me. This is difficult for me. I hope that soon people will realize that Survivors no longer have Ebola, and are immune. In this way, Survivors are actually the safest people to be around.

Stories like Juliana’s are at once heart-wrenching and inspiring. I hope she fully regains her neighbors’ acceptance and her peers welcome her back. Since surviving Ebola, Juliana, like Rudolph, has a special trait that can make her a leader in her community. As Father Mumba has shown, people who are different, when fully accepted, can shed new light on an old song.

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