Challenges for HIV/AIDS communication

‘Close by my house there is a little girl who is HIV positive. At her home it’s only her sister who knows about the young girl’s status. They are both scared that if they tell their parents, they will chase her away from home. Her sister told me, and asked if I could keep it a secret. In clinics people who are HIV positive are being treated badly. Even if you ask them to get you some water, they will shout at you for no reason. Even if you are still in bad condition to be discharged, they will tell you that you need to go home because there’s no place for you here. You can just go home and die there. If your family knows your status they won’t take you to the doctor or hospital, only when your situation has worsened will they take you to Temba Santa Hospital (TB Hospital) and say you had TB. Even at your funeral they will just say you died of TB. I think if we can learn to be more open about AIDS, we can defeat it’ (High School Girl A, Rhini Township, Grahamstown).

‘HIV/ Aids is the killer in our days, especially of our youth. People of Rhini are just making fun of people who are living with HIV/AIDS. That is why we have funerals every weekend. It’s also one of the reasons why people who are HIV positive don’t come forward. They end up turning to alcohol and drugs. Even in hospitals once you are told by the doctor that you are HIV positive, they tell everyone, even before you tell your own family... People always think that if they tell their families about their status, they will not be accepted. There is a girl that I know who is HIV positive. The first person she told was her school principal. The principal told her teachers and the teachers told the students. No one wanted to be associated with this girl. They treated her so badly that she quit school... They talked to her as if she was not a human being’ (High School Girl B, Rhini Township, Grahamstown).

Considering the fact that donor agencies, governments, NGOs and CBOs are spending large and growing amounts of money on HIV/AIDS communication, the interest of this project was to view HIV/AIDS communication from the community perspective. How is HIV/AIDS handled in the communities? What are the key problems? Where and how do the campaigns emerge as useful input? Ultimately, the aim of the research project was deliberately to explore the complexities of everyday life in order to identify both research agendas and concrete communication challenges that future HIV/AIDS communication planners and strategists must deal with.

Stigma

Both of the two girls’ statements above point towards one of the key challenges with HIV/AIDS today: the problem of stigma. Stigma is, according to Collins English Dictionary, ‘a distinguishing mark of social disgrace’. Sadly, it is the myths and misunderstandings surrounding this mark of disgrace, it is the fear of meeting this mark and it is the denial of having this mark, HIV, which creates a very difficult situation to tackle. It results in the ill treatment at hospitals, in the silence or gossip in the community, and it leads to nobody really wanting to know their own HIV status. It’s a situation that is tightly locked, and where communication hopefully can have a stronger role to play as facilitator in opening up this situation in so many communities.

What comes strongly through from the Grahamstown data is that young people feel their identities are at risk. Young people are almost by definition the most energetic, the most optimistic, the invincible generation with their future ahead of them. But, as one young man wrote in his essay: ‘If you get HIV, your future gets stuck’ (M20). You become part of a real ‘no future’ generation. At least that’s the perception many youngsters have due to the lack of a cure.
This again results in states of denial and situations of stress where many young kids develop an attitude signalling ‘I don’t care!’ Some of them deny that they might be at risk, and most often then blame the spread of the virus on somebody else – some groups of ‘others’ – be it the opposite sex, be it marginal groups such as prostitutes, be it those in another neighbourhood or be it simply ‘others’. HIV/AIDS is, in that respect, dividing societies far more than it is promoting unity or any degree of collectivity required to face the actual problem.

Finally, HIV/AIDS is obviously a problem of poverty and unequal power relationships in society: a pandemic which blossoms in societies with gender inequity; a pandemic that travels with human trafficking or with migrant labour: and a pandemic that strikes hardest against those that cannot afford any form of treatment. It is a symptom of social and economic injustice and should be combated accordingly. It’s not just about changing individual behaviour, encouraging people to use condoms or abstaining from sex. That’s just treating the symptoms, and not dealing with the underlying causes.

Community challenges

From my Grahamstown fieldwork, a number of issues emerge as crucial community challenges which – to the best of my knowledge and understanding – are challenges that many local South African communities are facing and that may serve as communication challenges for future campaigns against HIV/AIDS. I shall illustrate them with excerpts from the essays young people wrote on HIV/AIDS in their community.

1. Stigma. It cuts across most of the other challenges – the fact of massive social condemnation and marginalization making disclosure of your status, or simply revealing your uncertainty about possibly having the virus, one of the most difficult decisions in life. As this boy from the township says: ‘They always think if they maybe tell a friend, family member or girl/boyfriend, that they will get into an argument and get dumped. They think that their families will start to dislike them. Every thing their families are doing, they won’t include them’ (NB6-M). And as this girl from the township reports: ‘People with this disease are always ill-treated and it undermines their ability to live. You’ll hear them saying “instead of living this kind of life, I’d rather die”. Most parents chase their children away from their homes because they have the disease’ (NB1-F).
2. Fear. Although most human beings are afraid of acquiring a serious illness, widespread stigma throughout Grahamstown reinforced a feeling of fear to a degree that led to strong denial on the one hand and to careless behaviour and ‘laissez-faire’ attitudes and blame of others on the other. In many reported cases, it also led to suicide. Thus, at the heart of the problem lies the need to tackle these profound feelings of fear.
3. Lack of social support systems. By this I refer to the social institutions present in any community – from hospitals, schools and churches to families, friends and neighbours. Gathered under the analytical concept of ‘institutional mediators’ the most common experience was a lack of social support encountered in these contexts. The two initial quotes tell the story of the hospitals, and from their school experience they spoke of the risk of being thrown out if you are HIV positive as well as the risk of abuse by teachers. As for social networks in the community, lack of support was expressed all the time: ‘What I don’t like is when the community treats people who are living with HIV/AIDS badly. Instead of welcoming them to your house, you chase them away. Other families start to dislike you when you are HIV positive. Even if you were drinking water from a jug, people who are not positive won’t use it. People who are living with HIV/AIDS, we need to support them so that they won’t think about their status. I urge people not to make fun of people who are HIV positive.’ (M1-F)
4. Superficial use of communication initiatives. It was very striking how all the key messages from numerous campaigns came through in essays, everyday talk and in interviews, but on a slogan-like level in deep contrast to the deep-felt problems of stigma, fear and lack of social support systems. Excerpts can provide an illustration: ‘The great thing is to talk about it’ (M17)…’ And to the youth, they must stick to one partner and be protected, the condoms are there for safe sex…’ (M17); ‘use a condom because HIV/AIDS is a killer disease’ (M18); ‘I think the solution is to condomize’ (M19); ‘The solution to this disease is to use condoms’ (M20); ‘There is only one cure. Condom.’ (M21); ‘In order to get help about this you have to talk about it’ (M22-Mtwisita Ayanda); ‘Young people must use condoms – is the easy way to protect our life’ (M24); ‘Message: Please, ‘don’t compromise, condomize, people’ and ‘AIDS kills our people so we must fight it’ (N23-M? Loyi); ‘don’t be shy, talk about it, eat good food, especially fruit and vegetables, and drink juice, not alcohol’ (N25-Buwi); ‘Wrap it or Zip it’ (K13-M). On the one hand the slogans illustrate the fact that the campaigns are reaching the target groups, are being listened to and watched and even discussed in the community. The big problem arises when you start contrasting this apparent success with the other findings mentioned above. There seem to be parallel discourses – one of handling information in everyday circumstances, the other revealing deep levels of ontological insecurity, fear and uncertainty.
5. Lack of joint community efforts. Seen from the perspective of 14-19 year olds, living in a community with a 10+ prevalence rate, with personal experiences of loss, illness and a stigmatized environment, what is needed is a coordinated community-based effort to tackle some of these challenges. This points to weaknesses in the health and education systems and the need for improvement. It also points to the need for a more articulate civil society. In my field experience, civil society did not come through with any noteworthy visibility or strength. Furthermore, there is the huge political challenge of replicating the current national process of seeking multisectoral and coordinated responses – and doing a better job of it – at the community level.

Media campaign

Finally, the findings bring this article back to its starting point of wishing to contribute to a critical assessment how mass mediated HIV/AIDS messages manage to communicate successfully with their target groups. I have highlighted some of the challenges, but let me end by providing an example of a media campaign which – albeit lacking a community connection – is working successfully on some of the challenges outlined above. It is a TV series called ‘Tsha-Thsa’, produced by an NGO called Cadre.

In 2003 and 2005 Cadre broadcast 26 episodes on Fridays in prime time. They achieved high ratings among their prime target group of young people. The reason I highlight it here is that it successfully takes story-telling a good step further in quality and in framing the issues in nuanced and empowering ways. The story is set around four young people living in a small town far from the urban centres of South Africa. Most of them are involved in a ballroom dance activity that takes place in a local bar. The story is about them and in various ways and manners recounts how they cope with HIV/AIDS in everyday life.

Although the campaign is not rooted in any strong partnership with community-based oragnisations – something which my Grahamstown findings show is extremely important – the strategy of Tsha-Tsha is nevertheless interesting because of its careful and nuanced work with narrative. It is based on a set of principles:

• The first principle is to work on communicating lessons to the audiences rather than attempting to diffuse messages about how they ought to behave. Regulating human behaviour is much used in a lot of HIV/AIDS communication, despite the fact that it is proven to be extremely difficult to achieve behaviour change in this manner.
• The next principle is to facilitate audience identification with the emotional and intellectual world and minds of the characters. The point here is to work much more with the characters and their complexities in order for the audiences to engage with them in more nuanced manners.
• The third principle is, in close resonance with Freire’s principles, to name or show ideas, behaviours or social activities. It’s Freire’s principle of ‘naming the world’ that is pursued. By following the characters in their process of ‘naming the world’, the audience is participating in the process of reasoning and consciousness-raising which the character goes through.
• Change is recognized as a process, which results in a no clear-cut perfect role-modelling, but in showing how human behaviour is far less linear than behaviour change models indicate and seek to show.
• The principle of ‘limit situations’ is about showing the need that sometimes occurs to push the limits of a given situation or transform a given situation. It’s about change, but it’s about engaging with the new or slightly changed situations, such as when one of the protagonists learns she is HIV positive and learns to live with it.
• Finally, the sixth principle is about empowering youth to find a place in the world that they can call their own. It is about pushing at the edge of conventions as they are framed, and for youth they are often framed by parents or teachers. In the series, there is a deliberate focus on how youth explore rules, norms and expectations set by others.

‘Tsha-Tsha’ is, through its elaborate mission statement and through its successful edutainment-strategy, a fine example of an innovative communication practice. It does, of course, have some short-comings, example that the evaluation lacks depth and that the TV programme is not incorporated into a broader strategy with other mediators in the local society. The significant innovation is however the manner in which it represents the issues. There is far less marketing of correct behaviours and more invitation to the audience to engage with the problems, doubts and troubles of these young ballroom dancers.

The key challenge we face is to develop ways in which such fine examples of edutainment/education can connect with community-based structures and organisations – pursuing the aim that the futures of young kids in South Africa and elsewhere do not get stuck because of HIV/AIDS.

Thomas Tufte is Professor in the Department of Communication at Roskilde University, Denmark. His recent books include The Communication for Social Change Anthology. Historical and Contemporary Readings. Alfonso Gumucio Dagron and Thomas Tufte (eds). New Jersey: Communication for Social Change Consortium (in press); Media and Glocal Change. Rethinking communication for Development (2005). Oscar Hemer and Thomas Tufte (eds). Göteborg and Buenos Aires: NORDICOM and CLACSO; Living with the Rubbish Queen - A Media Ethnography of Telenovelas, Culture and Modernity in Brazil (2000). Luton: University of Luton Press. E-mail: ttufte@ruc.dk