In Sub-Saharan Africa, the numbers speak loudly: About 25 million people are infected with HIV. An estimated 2.8 million became infected in 2006 alone. A projected 20 million children will have lost at least one parent to AIDS by 2010. That will mean a total of 42 million orphans.
And yet at the epicenter of the global AIDS crisis, the affected people themselves aren’t speaking loudly. In many cases, they aren’t speaking at all. The stigma surrounding the disease has silenced them.
Dr. Rachel Smith, assistant professor in the College of Communication, has been working on HIV/AIDS communication in Namibia since 2003.
Dr. Rachel Smith, a health communication expert and assistant professor in the College of Communication at The University of Texas at Austin, recognizes that understanding this stigma is critical to slowing the spread of HIV/AIDS in Sub-Saharan Africa.
Without a means of circumventing the stigma, antiviral drugs, education programs, support systems and prevention campaigns risk failure. The social influence of other people is ultimately the key.
“We know a lot about the positive side of norms, how other people’s encouragement has a huge impact on behavior,” she says, “but we know less about the prohibitions. When working on international health campaigns, sometimes we’re dealing with stigma and we don’t have a good theory for how stigma works in communication.”
Smith has been working since 2003 in Namibia, where the stigma around HIV/AIDS has had dire consequences. Some individuals refuse testing, deny care for orphans and reject people who have the disease from jobs and homes. HIV-positive mothers risk passing the virus to their babies when they choose to nurse them, deciding the risk is less severe than the risk of having to live on the street if people knew about the disease.
The problem isn’t necessarily that Namibians don’t have the right information.
“As with a lot of health issues, we originally thought this was a knowledge problem. We figured if people know differently they’ll behave differently,” Smith says. “But you can know something and decide not to do it because there are other competing persuasive efforts involved.”
Namibia, on the west coast of Africa, north of South Africa and south of Angola, made the headlines in the U.S. when Hollywood stars Brad Pitt and Angelina Jolie chose it as a birthplace for their child. (Smith admits her students were sorely disappointed when she came back from a trip to the country without having met the celebrities.) But the real news in Namibia is that it is one of the hardest-hit places in the world when it comes to HIV/AIDS.
Namibia has an HIV prevalence of about 20 percent, with some areas reporting a prevalence of more than 40 percent. AIDS accounts for 50 percent of deaths among individuals aged 15 to 49 and over 75 percent of all hospitalizations in public sector hospitals.
Namibia is one of 15 focus countries for the President’s Emergency Plan for AIDS Relief. The focus countries in the Emergency Plan collectively represent at least 50 percent of HIV infections world-wide.
Smith says the desert nation poses some unusual challenges to those trying to create interventions. It has only been an independent nation since 1990. After Mongolia, it is the most sparsely populated country in the world. And there are understandable reasons why some Namibians haven’t given HIV/AIDS the attention it deserves.
“If anyone was to contract HIV and do nothing, one may die of an AIDS-related illness in 10 to 15 years,” Smith says. “In some parts of Namibia you can die of malaria in two weeks or of civil unrest at any time. So 10 to 15 years may seem like a long time.”
The other challenge is the stigma associated with HIV/AIDS. In much of Namibia, HIV is associated in people’s minds with shameful acts, engaging in sexual taboos, immorality and even witchcraft. The HIV-positive individual is seen as a threat to the community.
“Once a stigma goes into place, it’s really tough to make it go away,” Smith says. “We’ve seen very few successful anti-stigma campaigns.”
In fact, speaking directly about a stigma can actually reinforce it. It allows people to decide that their beliefs are normal because other people have them. In other cases, speaking directly about the stigma shames people, causing a backlash that only reinforces the beliefs.
Smith is working with the Namibian Health Communication Partnership to look at communication on a community level, assessing avenues for dispersing information without worsening the stigma. She is also helping determine who might prove influential in any given community, who has what she calls “social capital.” Those people may not be the official leaders in a community, but they’re the ones everyone talks to and thus key to getting information out.
“What I bring to the table is an understanding of the diffusion of messages, of social influence,” Smith says. “So if we better understand who talks to whom in a community and who has social capital, we can plan a more persuasive effort within that community.”
Smith led studies in thirteen Namibian cities and towns that assessed community attitudes toward HIV/AIDS, risk perception, community leadership and level of stigma. Key to the studies is determining what social groups exist in a community, from football clubs to churches, and where those social groups overlap.
The information will enable experts to create interventions for individual communities, recognizing that a one-size-fits-all approach doesn’t work.
“We’re getting to the point where we can tailor make an intervention, which makes it much more likely to be successful,” Smith says. “We can be more thoughtful in developing a campaign, and since we only have so much money, we can make the best decisions and not create or reinforce any stigmas.”
In one community, the vast part of the population is a member of the Roman Catholic Church, so any intervention needs to involve the church. Another community is in a seaport and very migratory and fractured. A mass media campaign makes more sense in that setting. In poorer towns with a strong sexual trade, interventions are being created to provide other money-making outlets, such as craft organizations.
Smith says a lot of interventions have happened at the very local level, in informal meeting rooms in the community. Training doctors and nurses in how to have discussions with those who come in to receive counseling or care is critical. They also need to learn how to eliminate stigmatizing language in those discussions.
Smith’s studies found that health care workers in most communities regarded HIV/AIDS as the most critical health issue in their community and considered that they carried a responsibility for addressing the issue. Yet by and large, they didn’t believe they had an excellent understanding of HIV/AIDS. Many still believed they could identify people with HIV/AIDS by looking at them.
“We’re trying to stimulate discussion and create new norms,” Smith says. “It’s important to frame the health issue as something that is a challenge to the community but not something that stigmatizes someone who faces that condition.”
One outlet for opening up the discussion may come with the catch phrase, “Tune in next week.”
“Everyone’s favorite new public health mechanism is entertainment education,” Smith says. “Soap operas, specifically, are one of the leading ways to disseminate health information.”
In South Africa, the television series “Tsha Tsha” focuses on young adults living an HIV-positive world and reaches an average of 1.8 million viewers each week. The gritty drama offers characters who explore love, sex and relationships in a world affected by the reality of the AIDS pandemic.
An evaluation has shown it has a significant impact in relation to improved attitudes to HIV/AIDS, stigma, living openly with HIV and faithfulness. Health communication professionals are looking to create similar television shows in other countries.
The possibility isn’t surprising to Smith. She says the NBC drama “ER” has impacted public health in this country. It presented an HIV-positive character early in the show’s history and over the years tackled topics as controversial as abortion and fetal alcohol syndrome.
What’s clear is that dealing with HIV/AIDS in Africa isn’t as straightforward as it may have once seemed. The interventions that are created need to go beyond simply making medications and information available. A place to begin may be with credo familiar to generations of medical students: “First, do no harm.” In Namibia, that means not furthering the damage done by stigma.
“We need to better understand what helps to form or bolster stigma so that we can eliminate that from the discussion altogether,” Smith says. “Instead of reinforcing stigma we can make sure it’s not part of the advertisements, not part of how we talk to the community and not part of the training focused on doctors, nurses and other leaders.
“We want to get the word out about HIV in a way that doesn’t create a stigma. In fact, we want to include other ideas, such as challenge, optimism, inclusion and hope.”