| Summary: | The aim of this study was to explore factors contributing to the success of health communication strategies and supporting visual communication tool(s) designed to explain antiretroviral medication (ART) adherence, and motivate young people who live with HIV to follow an adherence regime. The study drew from the social sciences, including psychology, health sciences and communication. Currently there are an estimated 6.8 million people living with HIV in South Africa, making it the site of the largest HIV epidemic in the world (UNAIDS, 2014). Antiretroviral Therapy (ART) is the only effective treatment for HIV and is one of the most demanding medicine regimes, requiring a 90% compliance. Various studies have documented worryingly poor levels of adherence to ART, especially amongst adolescents and young adults in South Africa. The empirical research consisted of a qualitative case study in Khayelitsha, a periurban township on the edge of Cape Town. It focused on young people from Khayelitsha and health care professionals - doctors, nurses, HIV counsellors and pharmacists. Using grounded theory data collection was carried out during two phases of fieldwork, interspersed with periods for data processing and analysis. The principal methods used were focus groups, semi-structured interviews and participant observation. Two key factors emerged from the data that form the basis of a new theoretical understanding: first, concerning how young people become motivated to learn about treatment and adhere to it, and second, concerning how information about treatment can best be communicated to them. In relation to the first of these, findings showed that young people were traumatised by an HIV diagnosis, fearing both that they would get sick and suffer an early death and also that they would be rejected by their belonging groups. This meant that they could not take in the factual information offered, and in addition, had no motivation to do so because the diagnosis resulted in a loss of hope for their present and future lives. According to young people, motivation was an outcome of re-connecting to one or more trusted significant other(s) from within their belonging group, who accepted and supported them. This in turn affirmed their prior belonging identities of son, daughter, cousin or close friend and then reconnected them to their present and future hopes. This renewed motivation to live was the basis for their becoming motivated to learn about treatment and adhere to it. In relation to the second factor, this study found that current communications about treatment were not effective. Specifically, the use of metaphors, which was seen among clinicians as a method of simplifying the complexity of ART adherence messages, was in fact creating confusion. Also, the use of printed information in isolation was not effective; communication was much more effective when it provided a space for discussion. These two key factors form the basis of a health communication strategy for young people who live with HIV and need to adhere to ART. Following on from these findings the study included the production of a film and animation that were identified as the visual communication media that would best support young people's understanding and motivation to adherence. The film presents a case study of a young person who overcame their initial diagnosis shock and, through the acceptance and support of his family, learned to live a normal life with HIV. Young people had said that they wanted to be able to view a film of this kind soon after their diagnosis. The animation, which was designed using a participatory process, used 'iso-type' as the central visual language. It was piloted, and this showed that the best use of a visual communication tool was in a setting that allowed young people to talk about prior losses to HIV within their families and community and about their confusion about treatment, and to ask questions about the meaning of complex biomedical concepts such as an undetectable viral load. All young people who visited the clinics, irrespective of test results, said that they wanted to learn about ART so that they could support friends and family members who lived with HIV, change perceptions about HIV among peers and better prepare in the case of becoming HIV positive themselves. Therefore it is recommended that communication strategies should target patients, their belonging groups and the wider community. This substantive theory contributes knowledge relevant to how ART adherence is communicated to young people. More broadly, this thesis argues that an interdisciplinary approach is required if communication practitioners are to properly understand the meaning that a population attributes to a health challenge; especially in the context of motivation and understanding. It is only when those meanings are fully identified through consolidated social science research that a communication strategy and supporting visual tools can be successfully designed.
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