Women account for a disproportionate number of new HIV infections. Protecting young women from acquiring this highly transmissible disease is especially important in sub-Saharan Africa, which is home to the greatest number of women living with HIV in the world. Fortunately, pre-exposure prophylaxis (PrEP) is incredibly effective at preventing people from acquiring HIV. However, in many places in the world, women face barriers to obtaining PrEP and lack support for using it, making them reluctant to start taking this medication.
Studies have examined factors contributing to the reluctance to use safe and effective prevention methods like PrEP. However, few of these studies have taken place in Africa despite a demonstrated need for such research. A new qualitative study funded by the National Institute of Mental Health helps fill this gap.
A multi-disciplinary and international research team examined factors influencing PrEP use among young women at high risk for HIV living in Kenya. The researchers used a two-part strategy to identify both barriers and supports to PrEP use. In Phase 1, they conducted in-depth, semi-structured interviews with 40 Kenyan women (18–24 years old) who declined enrollment in a PrEP research study to assess their understanding of and concerns about PrEP. In Phase 2, they conducted 10 focus group interviews (6–8 people each) at two sites in Kenya with community members who played important roles in young women’s lives, including caregivers, peers, and community leaders. These discussions gave broader insight into decision-making around PrEP and perceptions of women who use PrEP.
The researchers coded themes in the interviews and focus groups and categorized them as barriers or supports and as individual, social, or structural factors. Illustrative quotes provided concrete examples. Collecting in-depth information from individual participants and comparing information across diverse groups of participants helped ensure rigor, trustworthiness, and credibility in the study findings.
Barriers to PrEP Use and Adherence
Although women recognized the effectiveness of PrEP, a variety of individual, social, and structural factors deterred them from taking it. On an individual level, barriers to using PrEP reflected young women’s perceptions of their risk for HIV. For women who perceived themselves as being at high risk for HIV, many described engaging in relationships that were imbalanced in both age and social status to secure resources necessary for survival. Often the fear of disclosing the use of PrEP in these power-imbalanced relationships was too high a risk. In comparison, women who saw themselves as having low HIV risk expressed trust in their partners or in condoms and were concerned that people who used PrEP engaged in risky behavior. Other women reported a lack of confidence in their ability to consistently take a daily medication and the potential for side effects or social stigma from doing so.
On a community level, stigma was a major barrier to using PrEP. Women feared being perceived as immoral or promiscuous for taking the medication and reported actual experiences of unfair treatment because of PrEP use. Another deterrent was a high level of mistrust around motivations for taking PrEP. This extended from partners’ mistrust of women’s reasons for taking PrEP (for example, as a sign she had been unfaithful) to women’s mistrust of outside researchers’ involvement in their medical care. In some cases, religious and traditional community beliefs negatively affected decisions around PrEP use. Last, women reported structural challenges posed by a lack of time and high transportation costs to get to a clinic.
Supports to PrEP Use and Adherence
Individual factors that were barriers to taking PrEP for some women, such as religious beliefs, were seen as supports by others. For instance, for some women, their church’s emphasis on personal responsibility was consistent with proactively seeking HIV prevention, whereas others described their church as discouraging the use of medication and instead relying on prayer for healing. Women who felt confident in their ability to take the medication properly were also more likely to initiate PrEP use. In both the interviews and focus groups, increasing community awareness of PrEP and its effectiveness in preventing HIV emerged as important ways to improve its uptake.
Finally, the researchers surveyed whether the following technologies influenced the decision to decline participation in the original study or made women feel more comfortable initiating or taking PrEP: social media, messaging applications like WhatsApp, and a real-time medication monitoring device. Women expressed comfort in using social media and messaging apps to discuss their medical issues with others. Similarly, they supported using the monitoring device to help take the medication.
Despite its comprehensive assessment of influences on PrEP use by young women in Kenya, this study has some limitations. The uniqueness of the population (women who declined enrollment in a PrEP study) and the geographic location mean that the findings may not generalize to women outside of Africa or even the two Kenyan cities where the qualitative study was conducted. In addition, social desirability bias, reflecting a tendency of some participants to respond in ways they thought were more socially acceptable, may have reduced the authenticity of the data at times.
Overall, the qualitative data reflect the many multi-level challenges to PrEP use in places like Kenya. In particular, young women had to grapple with community perceptions of morality and mistrust, as well as limited access to and misconceptions about PrEP. These barriers were amplified by gender norms, religious influences, and low self-confidence, leaving many women without critical supports needed to overcome stigmatizing beliefs and other barriers. Interventions that mobilize social support, improve community awareness, and provide more flexible options for PrEP care may be critical to increasing access to and uptake of HIV prevention services in high-risk settings.
Katz, I. T., Ngure, K., Kamolloh, K., Ogello, V., Okombo, M., Thuo, N. B., Owino, E., Garrison, L. E., Lee, Y. S., Nardell, M. F., Anyacheblu, C., Bukusi, E., Mugo, N., Baeten, J. M., & Haberer, J. E. (2022). Multi‑level factors driving pre‑exposure prophylaxis non‑initiation. AIDS and Behavior. https://doi.org/10.1007/s10461-022-03748-9