Challenges in HIV/AIDS Communication Rethinking Theory, Improving Practice MIH – Module II ’Health Systems in Low and Middle Income Societies’, University of Copenhagen,

Today’s Presentation 1. The HIV/AIDS Pandemic 2. Rethinking HIV/AIDS Communication 3. Examples 4. Three Key Communication Challenges 5. Conclusion

HIV/AIDS Facts 40 million people infected with HIV 70% live in Sub-Saharan Africa 3 million people died of AIDS last year and 5 million new people were infected Some countries have % HIV prevalence

HIV/AIDS & Communication 25 years of experience: 1981 – First case identified 1986 – WHO Global AIDS Programme 1995 – UNAIDS Established UNAIDS Communications Framework 2000 – UN G.A.  Global Fund 2001 – UN Roundtable of ComDev

Critiques of HIV/AIDS Communication Inherited strategies from family planning Slow development of genuine strategies Limitations include –Short-term –Limited formative research –Simplified message transmission –Inadequate monitoring and evaluation

UNAIDS Communications Framework (1999) Culture Spirituality Socio-Economic Conditions Gender Policies

Rethinking Theory (I) Redefine the problem definition Redefine the nature of the solutions Redefine the strategies Redefine the comm-tools From a health problem to a development problem From culture as an obstacle to culture as an ally From urgency to urgency and long-term From magic bullets (social marketing) to inviting to action-reflection-action

Rethinking Theory (II): UN- Roundtable, Managua 2001 Refining and Improving Behaviour Change Communication (BCC) Strengthening Participatory Social Change Oriented Strategies Developing Advocacy Communication

Rethinking Theory (III): Paulo Freire and CFSC Philosophy of Education and Social Change Dialogue and Liberating Education Long-term Power Struggle Action-Reflection-Action Conscientizacao Freire in Comm for Social Change

Rethinking Theory (IV): Elements for CFSC Empowerment (the strategy of Conscientizacao: dialogue, participation – and surrending the agenda) Communication embedded in Popular Culture Understanding the Audience – before, during and after Facing Contexts and Communication Environments

Rethinking Theory (V): A Science and a Practice on the Move? Bridging diffusion and behaviour change with empowerment and participation Bridging not just in words but in action Community based strategies using media The Comm Discipline Challenged? –Our response to development challenges –How we feed theory into pratice

‘At the beginning of this century, communication for social change appears as the paradigm that recovers and deepens the path that participatory, alternative and development communication has cleared, while also integrating progressive features from current modernisation models. It questions at all levels the concept of development that does not include the population that is directly affected, and promotes a communication process that supports effective community participation, particularly of the most impoverished and marginalized sectors of society’. (Gumucio Dagron 2004)

‘The pandemic has shown itself to be a more complex phenomenon than many had expected. To address it, there is a need to go beyond health and the Health Belief Model. HIV research and mitigation strategies have to be more sophisticated and must cut across the narrowly defined disciplinary boundaries. (…) It is in (the) unified understanding of the pandemic that research can shed more light on the theoretical and policy challenges posed by HIV/AIDS (Rugalema 2004: 203)

Youth in Grahamstown A micro-cosmos of South Africa inhabitants 5 schools selected 124 essays written in 11th grade 10 focus-group discussions (60 students) A close-up study of 18 youth: –Photoethnography –Participant Observation –3 x Individual Interviews with each –Mini KAP-study

Township girl (1) HIV/ Aids is the killer in our days, especially to 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 reason that 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 told everyone that you are HIV positive, before you even tell your own family. (…) People always think that if they tell their families about their status, they would 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 quite school. The way that they where talking to her as if she was not a human being (NB8-F).

Township girl (2) Close by to 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 wont take you to the doctor or hospital, only when your situation is worsened they will 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 (NB9-F).

Issues Emerging Stigma – ill treatment in hospitals, silence or gossip in the community, lack of disclosure. Identities at Risk – healthy youth with a future. Ontological insecurity. The future is getting stuck! Stress and Denial – ’dont care’ attitude. Some are constructing an ’other’ who is more at risk. Individual and collective denial. Alcoholism, violence. Gender Inequality – men decide, but blame women, prostitution. Poverty - prostitution for money, food or clothes. Alcoholism. Not able to afford treatment

Tsha Tsha Principles 1.Lessons, not messages 2.Identification 3.Naming the world 4.Change as process 5.Limit situations 6.Edge of Conventions

Issues to tackle 1.Stigma, Stigma and Stigma 2.Fear and Denial 3.Address underlying social, cultural, political, economic and spiritual contexts 4.Build trust through media languages (forms and content) 5. Ensure joint efforts at community level

Innovative Projects Femina HIP, Tanzania: Comics, glossy magazine, Tv talk show, schools Scenarios of Africa: Script contests, short-film production, community use ’El Sexto Sentido’ and Soul City: tv- drama at the heart of edutainment vehicles

Communication Disconnect (1) Discrepancy between immensity of HIV/AIDS problem and the thundering silence about it. Stigma still resulting in: – invisibility of people –Absence of voice

Communication Challenge (1) Rights, Representation and Public Sphere –Right to Communicate: VOICE –Visibility in the media and other public spheres –Understand better the mechanisms of today’s public sphere –Create a speech environment on HIV/AIDS

Communication Disconnect (2) A lack of connection between the media language used (genres, aesthetics, format, language) and the culturally appropriate and lived experiences of the audiences

Communication Challenge (2) Popular Culture and Cultural Citizenship –Produce culturally appropriate content –Enhance cultural citizenship to support citizen identity

Communication Disconnect (3) The immense contradiction between solutions proposed in campaigns and the actual need for much more far-reaching solutions

Communication Challenge (3) Power Struggles and Change Processes –Address unequal power relations –Broaden the problem definition from a health problem to a development problem

In the course of human history there has never been a greater threat than the HIV/AIDS epidemic. Our attention to this issue cannot be distracted or diverted by problems that are apparently more pressing. History will surely judge us harshly if we do not respond with all the energy and resources that we can bring to bear (Nelson Mandela, July 2004)