My Journey Researching the Role of Gender-Based Violence in PrEP
Miriam Hartmann (Researcher, UCT)
Editorial Note: One researcher’s reflection on her journey exploring the role gender-based violence in South African women’s PrEP use and how it’s shaped her understanding of these issues, development of interventions addressing the intersection of the two topics, and research methods.
My work in South Africa commenced remotely from the United States in 2011 through a social behavioral research study embedded in a pre-exposure prophylaxis (PrEP) clinical trial (VOICE-C). The study, conducted in Johannesburg, qualitatively examined barriers and facilitators to women’s PrEP use. Using the socio-ecological framework, we considered factors at individual, relationship, family, community, and societal levels that may support or hinder PrEP adherence. I must admit that at the time, I was skeptical of the number of years it may take before PrEP had a “real impact” on these women’s lives and was therefore not as enthused about the topic – having an impatience and a desire to focus on interventions that may create change now. Ten years later, both the science and my perspective have shifted.
While studying Maternal and Child Health in my Master of Public Health from 2007-2009, I took a course on sexual and reproductive health. In that course, a PhD student and gender advisor to USAID, led our class through a series of exercises designed to recognize our gender biases and to unpack their impact on health. I was struck by evidence around the influence of gender on health and well-being and appreciated the value of sensitively uncovering our own preconceptions. She also offered a systematic approach to consider the impact of gender at various levels. That lens and those tools are what I used to understand the qualitative data we collected in VOICE-C and have influenced my work ever since.
“Because it would help them. They (young women) get raped most of the times…I don’t know what the (PrEP) gel does … I think it works the same as the condom. So, we told ourselves that it will help them like that.” [‘Ratu’, VOICE-C IDI participant]
Refrains such as this one struck me. Why was rape so commonly cited as a reason for PrEP use when so much of HIV transmission occurred outside that context? Examining the discourse on rape as it was used for negotiating PrEP use1 led me to focus further on the context of violence within and outside of women’s relationships in urban South Africa.
In subsequent years, as PrEP has proved effective against HIV transmission and became available outside of a clinical trial setting, I have had the opportunity to further explore the intersections between PrEP and intimate partner violence (IPV) and to design and test interventions aimed at addressing this and other relationship barriers to effective PrEP use.2-4 Most recently, this has included the adaptation of a clinic-based counselling intervention for women accessing PrEP – CHARISMA – to a mobile website format. Besides the satisfaction of conducting intervention research on a topic that is of great significance to South Africa and beyond, what has been special about this work is the further integration of participatory research methods into our approach.
I moved to South Africa in 2015, which has only enriched my own viewpoint of women’s refrains on rape and violence that continue to emerge as myself and our teams work in HIV prevention. Exposure to frequent concerns around violence in the media, and in my personal life and networks, make women’s fears more tangible.
“For my safety, things are happening, girls are being kidnapped, so you'll never know what might happen. So, it's…it's better to be raped knowing that you are protected because these people want to infect you [with HIV]... So that's why (I decided to take PrEP).” [‘Rachel’, CHARISMA IDI participant]
Now that I live here, when I hear women express statements such as Rachel’s, I have a more inherent understanding of the fear driving these declarations. Recent nationally recognized cases such as the rape and murder of a UCT student and other femicides5 rise to my mind and heart in a way they may not have otherwise. I also understand how they protect women from similarly real concerns that PrEP use may imply mistrust to their partners and create enough suspicion to incite emotional or physical violence in their own homes.
That brings me back to the role of participatory methods in CHARISMA mobile, as we affectionately call the adaptation. In CHARISMA mobile, we began with a series of human-centred design inspired workshops with women who had participated in the main CHARISMA trial. In these two-day meetings, held at the Wits RHI research clinic in Hillbrow, Johannesburg, 14 women led the review and creative adaptation of the CHARISMA counselling content into a mobile format that may ultimately reach greater numbers of South African women. They developed personas representing women in their communities who have a need for relationship-based and PrEP support counselling, and designed interactive content representing tools that help women consider what is healthy and ideal in their relationships. These outputs are informing current website development, particularly framing the project’s focus on accessibility and safety.
As we move into further stages of CHARISMA mobile, our team continues to utilize research methods that aim to more fully integrate women’s voices into the process. Throughout website design, we used cognitive interview [think aloud] methods where women reflected out loud as they reviewed prototypes. Our next stage of beta testing will similarly seek active input from women to ensure the relevance of our tool to a larger population. In this process, I perceive my involvement as multifaceted as I embrace different positionalities: a researcher and as a conduit between their input and partners such Equal Experts, the website developer, or Makhulu, our video producer. Interestingly, it has taken more years of experience to learn and embrace participatory methods that I feel more fully respect the knowledge we as researchers gain from participants than to apply more traditional research approaches. I look forward not only to how these methods further enhance CHARISMA mobile, but also to how I may apply them to my further research career.
References:
1. Hartmann, M., Montgomery, E., Stadler, J., Laborde, N., Magazi, B., Mathebula, F., & van der Straten, A. (2016). Negotiating the use of female-initiated HIV prevention methods in a context of gender-based violence: the narrative of rape. Culture, health & sexuality, 18(6), 611-624.
2. Hartmann, M., Palanee-Phillips, T., O’Rourke, S., Adewumi, K., Tenza, S., Mathebula, F., ... & Montgomery, E. T. (2018). The relationship between vaginal ring use and intimate partner violence and social harms: formative research outcomes from the CHARISMA study in Johannesburg, South Africa. AIDS care, 1-7.
3. Hartmann, M., Lanham, M., Palanee-Phillips, T., Mathebula, F., Tolley, E. E., Peacock, D., ... CHARISMA Team (2019). Generating CHARISMA: Development of an intervention to help women build agency and safety in their relationships while using prep for HIV prevention. AIDS Education and Prevention, 31(5), 433-451. https://doi.org/10.1521/aeap.2019.31.5.433
4. Hartmann, M., Otticha, S., Agot, K., Minnis, A., Montgomery, E.T., and Roberts, S.T. (2021) Tu’Washindi na PrEP: Working with young women and service providers to design an intervention for PrEP uptake and adherence in the context of gender-based violence. AIDS Education and Prevention, 33(2), 103-119.
5. Remembering Uyinene Mrwetyana, a year since UCT student's brutal murder (iol.co.za)
Author Biography
Email: mhartmann@rti.org