By Ireen Mosweu, Community Engagement Officer, The Aurum Institute Clinical Research Division in Rustenburg, South Africa.
This article was featured in IAVI newsletter VOICES, which was a special edition focusing on Meaningful Engagement with Adolescents, Young Women, and Girls in HIV Prevention Research.
I work as a community engagement officer at an adolescent-friendly clinic at The Aurum Institute Clinical Research Division in Rustenburg, a city located in South Africa’s platinum mining belt. I have worked for 14 years in community engagement, 11 of them with the Institute. My journey to working as a link between HIV prevention researchers and adolescents is a very personal one.
While still in school, I witnessed some of my relatives dying because of AIDS-related illnesses. It was a difficult time in the country: treatment was not easily accessible, and my relatives were afraid to go to the clinic because stigma and discrimination were widespread. I watched as they first developed signs and symptoms, opportunistic infections, and then suddenly passed on. The social and emotional impact of watching my relatives die made me realize that the life skills training available did not adequately address issues around HIV. That is why I decided to pursue a career in HIV Counseling and Testing. In 2009 when my friend was devastated by her HIV-positive diagnosis, I counselled her, and it makes me feel good to see her today, still living a healthy and productive life.
I now work with an Adolescents Community Advisory Group that meets at our adolescent-friendly clinic in Rustenburg. I am very passionate about my work as an engagement officer as well as giving motivational talks at forums to empower adolescents. When working with adolescents, I do my best to see things from their perspective. Music and roadshows are a big part of the young people’s lives, so these are features that I include in our engagement strategy. I am also considering the use of social media to share relevant HIV prevention information. The adolescent-friendly clinic has a warm and friendly atmosphere, a separate reception area, cable TV, and access to free WiFi during their visits. We also assist adolescents with their homework. We need to make the two hours they spend at the clinic during their visits enjoyable and memorable for them!
The Aurum Institute’s Clinical Research Site conducts clinical research involving adolescents, focused primarily on evaluating the feasibility of enrolling and retaining adolescents in clinical trials. Given the rate of new HIV infections, unwanted pregnancies, and low rates of consistent condom use among adolescents in South Africa, there is an urgent need for interventions targeting this vulnerable population. There is, however, limited involvement of adolescents in research studies or clinical trials, where enrollment and retention are compromised for various reasons. Although adolescents and parents/legal guardians are willing to participate in clinical trials, the fear of possible vaccine side effects, fear of getting tested for HIV, perception that an HIV vaccine is not necessary, limited knowledge on vaccine development and trials, and mistrust of the scientific community are potential barriers to HIV vaccine uptake. The institute aims to bridge this gap by offering adolescents and their caregivers the opportunity to enrol in the feasibility study.
Working with adolescents at this level requires close collaboration among the clinical research team at The Aurum Institute, government departments, adult stakeholders, and community members including religious representatives. Parental consent is also critical in the work that we do.
My dream is to have an HIV-free generation and I hope that through my work amongst adolescents, I am creating a cohort of ambassadors for HIV prevention.