Last September, I started what was arguably the most challenging and fulfilling journey I have ever experienced. Summarizing my experience working on the Youth Pulse Project, which examines the experiences of HIV-positive adolescents in Eastern Cape, South Africa, in a mere page or two is impossible, but clarifying my reflections on this memorable time in my life is necessary.
Youth Pulse: An ambitious project
When I first arrived in South Africa, I was in awe of the ambitious aims of the Youth Pulse Project. Founded by the Universities of Oxford and Cape Town, with support from the South African government and various international stakeholders, the research endeavor hopes to uncover the lived experiences of HIV-positive adolescents in South Africa’s Eastern Cape.
The Eastern Cape is the poorest of the country’s nine provinces, considered the slowest progressing region of post-apartheid South Africa with limited resources for health, education, and infrastructure. In this challenging social, cultural, and economic environment, I learned about the ethical dilemmas of conducting international research.
Helping or hindering local staff?
To comprehend the difficulties of working on an international research study, understanding the cultural context in which the project operates is essential. On the one hand, basing the Youth Pulse project in one of South Africa’s poorest areas is an excellent way to capture the experiences of the most vulnerable teens in the country. While this is wonderful for finding an interesting research cohort, our operation could inadvertently contribute to the status quo.
For instance, unemployment in the area where I worked, King William’s Town, is exceptionally high, allowing for low-paying jobs and minimizing workers’ ability to negotiate for better pay or benefits. In a sense, empowering local staff to advocate for themselves goes against the best interest of the research project, given its incredibly limited resources. On the flip side, the presence of this project provides employment for many local Xhosa-speaking Research Assistants (RAs).
The ethical quandary of data collection
Another ethical quandary of international research that I learned is the extractive nature of data collection. To collect data, our RAs sit with adolescents for nearly two hours, asking incredibly personal and possibly triggering questions about their experiences with health, school, home, family, and the greater community. These questions probe into a teen’s experience with interpersonal and sexual violence and exploitation, as well as bullying and emotional abuse in a range of contexts. Oftentimes, the teens who have suffered from violence open up to our RAs, hoping for support. At the end of this long and emotionally exhausting process, our RAs must pack up and leave, unable to provide sustainable support or intervention to the teens that need it most.
This is not to say that no help is given to adolescents in need; Youth Pulse offers a range of referrals, including counseling and grant support (for families who are eligible to receive government funding for food or school fees). Nonetheless, it is difficult to say that a few counseling sessions will prevent victimization or heal a broken home. The inability to provide long-term assistance to teens in the project’s cohort illustrates the ethical struggle of such research.
In short, my time in South Africa with the Youth Pulse research project allowed me to think critically about the ethics of international work. Generally, research is known for its long-term benefits instead of immediate results. However, we must engage with the process of transforming data and its conclusions to policy and programming that will make its way back to the communities originally burdened through such data collection.
Youth Pulse and its partner projects have helped improve the lives of over two million adolescents across Africa. This feat, a result of evidence-based policy promoting social and economic support of teenagers, has reduced the likelihood of risky sex among adolescents from 11 to just two percent.
While these policy changes may not support the specific teens who opened up to our RAs in the data collection process, we must accept these strides as worthwhile. Moreover, we must focus on affecting positive change in the short- and long-term, while empowering and learning from our local partners in the process.
Neha is currently a Global Health Corps Fellow in Kigali, Rwanda. The InterExchange Foundation Christianson Grant supported her 10-month volunteer service with the Youth Pulse Project in South Africa.