South Africa has the highest rate of HIV infection in the world. Fordham University HIV Prevention Research Ethics Training Institute (RETI) Fellow Charmaine Thokoane is working to combat that statistic through a sexual and reproductive health program designed for 12-18 year-olds in South Africa. In fact, Thokoane’s work has caught the eye of the Mayor of Pretoria, who has agreed to fund the program she coordinates.
Thokoane is the recipient of the 2012 Fordham Center for Ethics Education/Santander Universities International Scholarship, which provided her with the funds to travel from South Africa to New York City to attend the HIV Prevention Research Ethics Training Institute in the summer of 2012. She will return to New York City for this year’s institute. Her mentor for the project is RETI and Center for Ethics Education Director Dr. Celia B. Fisher.
Thokoane first started working in HIV research in 2008 as a faculty coordinator for the Centre for the Study of AIDS (CSA) in Pretoria, South Africa, where she also worked as an assistant for a CSA research team that was contracted by the AIDS Foundation of South Africa (AFSA). In 2009, she was appointed to the position of project coordinator of the Future Leaders @ Work project at the CSA. At that time, part of her job involved working on the CSA’s entry-level HIV & AIDS training course, which is available to all University of Pretoria students.
“We were in the process of updating our training content and material to make it more relevant to students, so we decided to conduct workshops with students on sexual networks to better understand student sexual behavior,” Thokoane explained. “The workshops helped me understand the complexity of sexual behavior and the social factors that make people vulnerable to contracting HIV.”
Thokoane found that the participants in her program were well aware of HIV & AIDS and human rights because they were taught about it in school, but had less knowledge and understanding of youth sexual and reproductive health rights; these were the results she had expected. She also found differences between the male and female participants, and between the age groups (12-14 and 15-18). The female groups were initially less confident talking about sex and relationships than the male groups. This was further emphasized by the low perception the young women expressed about themselves, perceiving themselves as being voiceless and powerless in relationships and society. All groups acknowledged the effects of drug abuse among young people and its relationship to HIV and teenage pregnancy.
“The most surprising was the level of education of the young people,” Thokoane said. “They found it challenging to understand certain concepts and associations, even when translated into their local language.”
Thokoane believes that it is important to first get an understanding of the group of people you are working with – including their background, social and cultural beliefs and identities, challenges they face, hopes for the future, and knowledge and beliefs about sex and health – before implementing a program that best suits the context and the group.
“The program should be developed with members of the community and youth groups in the community,” she added. “The community should be able to take ownership of the program.”
The Mayor of Pretoria became interested in Thokoane’s program at the CSA because it focused on youth in an under-resourced area in Pretoria. The Mayor’s Office agreed to fund the program, which will operate in collaboration with the CSA, and is set to begin as early as this year.
Based on her work experience and the existing literature, Thokoane identified three HIV prevention challenges that may be specific to South Africa. Firstly, because South Africa has the highest rate of HIV infection in the world, prevention strategies must be implemented which ensure that those who are HIV negative remain that way, and those who are HIV positive live longer and do not become re-infected. Secondly, the levels of infection differ across the nine provinces in the country, as well as within the provinces, which requires different interventions, tailored to the needs of the region. Lastly, she identified trying to challenge and break long-established sexual behaviors, such as multiple and concurrent sexual partnerships, as a major challenge of HIV prevention in South Africa.
Thokoane thinks that there will be an increase in biomedical interventions in HIV prevention in South Africa. She also notes that there is currently a major focus on medical male circumcision as a preventive measure in South Africa. Additionally, treatment as prevention and discovering a vaccine has also generated significant discussions and debates.
Thokoane said that the Fordham University HIV Prevention RETI has helped her better understand ethics – not only in HIV, but also in working with research participants.
“When I first started the research program, I had some understanding of ethical implications in HIV research. My mindset at that time was, I wanted the program to benefit the young people and at the same time respect their dignity due to the sensitive topics and age group involved,” she explained. “The RETI helped me be more critical and aware of ethical issues related to the questions I asked in the interviews, the conditions under which training would take place, the language used throughout the program (spoken and in written documents) as well as my own actions. This was the first research program that I led and I was fortunate to participate in the RETI before starting the program.”
Training young people in this program, Thokoane experienced firsthand the impact of inequalities on the South African education system. She describes herself as “passionate about education,” and is currently doing a one-year teaching qualification so that she can further her studies in education, where she hopes to continue to educate people in sexual and reproductive health services.
“The reason I wanted to be involved in the program was to educate young people in Hammanskraal about sexual and reproductive health rights and also work with community organizations to create more youth friendly health services,” she said.