A desire for self-care and controlling HIV risk motivates young women to take PrEP but this can be undermined by negative attitudes of partners and family.
Interviews with young women in Eswatini suggests self-care and a desire to control their HIV risk motivates them to take pre-exposure-prophylaxis (PrEP). But the attitudes of partners and family members, linked to HIV-related stigma and views on female sexuality, alongside women’s own ‘pill fatigue’ can undermine these intentions.
Researchers interviewed 24 young women (aged 16-25) and pregnant or breastfeeding women aged 16 or above in Shiselweni, a rural part of Eswatini. Ten were taking PrEP, and 14 had declined or discontinued its use. Local health workers were also interviewed, and men were interviewed in focus groups.
Most women felt they were at risk of HIV as they were in relationships that lacked mutual trust. Using PrEP was seen by many as a way to take control of their health and reflected a desire for self-care.
Young women saw PrEP and contraceptive pills as things that would enable them to fulfil future educational and career aspirations and become financially independent. Some women said using PrEP had even encouraged them to negotiate condom use in their relationships as it had given them a sense of self-worth and empowerment.
Now when we have sex, we use condoms. Before I started PrEP, we weren’t using condoms. The pill encourages me to use condoms and to know that I will not end up getting infected.
Woman 18–20 years
Most women described the decision to take PrEP as their own to make. This was in contrast with condom use, which requires partner negotiation and could be difficult to achieve.
But difficulties telling partners or family members about PrEP use led some women to stop taking it.
Around half of those with experience of PrEP use had told their partners they were taking it. Some said this led to arguments as their partners felt they should have been consulted first. Others had not disclosed for fear of being seen as promiscuous or as living with HIV.
We quarrelled because of PrEP. It is as if he hears from his friends that PrEP is for prostitutes. What is the need for me to take PrEP?
Woman 18–20 years
In the focus groups, some men said they would feel insecure or mistrustful if their partner used PrEP or that they were being ‘accused’ of living with HIV, which might lead to arguments or physical violence.
When it came to family members, young women felt they would be supported to take PrEP if it was to protect an unborn child but not in other circumstances. Unmarried young women feared being judged as morally unacceptable for taking PrEP as it would reveal they were having sex. Healthcare workers also described being confronted by angry parents who felt their daughters being given PrEP was encouraging them to be sexually active.
The stigma of taking antiretroviral drugs (ARVs), due to their association with HIV, also discouraged PrEP use. Women reported hiding their drugs, which meant they sometimes forgot to take them.
Healthcare worker comments suggest they sometimes struggled to assess risks when providing guidance on PrEP duration, and instead advised women of the need to take PrEP ‘for life’.
Many women also saw their need for PrEP as continuous, at least until they found a stable partner or got married. This in turn could lead to ‘pill fatigue’, and discontinuation of PrEP. Some PrEP users questioned the advantages of taking ARVs to prevent HIV against taking ARVs for HIV treatment, given the perceived similarity between the two.
All women whose partners were living with HIV said their partner supported their decision to take PrEP. But some were unaware that they would be prevented from acquiring HIV if their partner was on effective treatment and virally suppressed. This shows the importance of regular counselling for people on PrEP, including couple counselling, with greater focus on HIV transmission risks and support to start and stop PrEP as risks evolve.
PrEP injections currently being developed might reduce the need for women to disclose PrEP use to family and partners. But injections will not address HIV-related stigma, nor will they provide young women with the emotional support they need to take PrEP. To address this, community-wide interventions that address unequal social norms and promote PrEP acceptance are needed.
There is also a need to provide community-based PrEP for young women, possibly integrated into family planning, as healthcare workers said they struggled to reach young women unless they came for antenatal care. PrEP support clubs for young women could also be beneficial.
Image credit: TheWellProject