Strong support systems tied to PrEP adherence among adolescent girls and young women in South Africa

A qualitative study published in PLOS Global Public Health explored how disclosure of PrEP use was related to adherence among adolescent girls and young women in South Africa. Those who received positive reactions generally had high adherence and disclosed more readily to more people. Those with low adherence were more fearful to disclose and received more neutral or negative reactions.

In South Africa, adolescent girls and young women are disproportionately impacted by HIV. In the Buffalo City Metro Health District, the site of the study, around 13% of girls and women aged 15-24 are living with HIV compared to 4% of young men.

Relationship dynamics and interpersonal violence limit HIV prevention options for adolescent girls and young women. Prevention methods under a person’s direct control, like PrEP, are a critical tool in preventing HIV among this vulnerable population.

However, PrEP use can lead to unintentional disclosure of sexual activity and associated conflict, loss of support, and harm to physical and mental health. Stigma and misinformation about HIV risk may lead to shaming by partners, family, or other members of a person’s support system.

Experiencing or anticipating these negative reactions can lead adolescent girls and young women to discontinue or conceal their PrEP use, making it challenging to maintain protective levels of the drug through good adherence. The reverse is true: positive reactions and social support regarding PrEP use can improve uptake and adherence.

The study

Dr Joseph Daniels, Dr Andrew Medina-Marino and colleagues aimed to explore how adolescent girls and young women navigate the social dynamics of PrEP disclosure and use over time, with an eye towards improving future interventions.

They did in-depth qualitative interviews in 2020 with adolescent girls and young women who were receiving PrEP through a larger Community PrEP Study in Buffalo City in the Eastern Cape.

Study participants were selected through purposive sampling to ensure a balance between those living in urban and rural settings, those in different arms of the study, and those with dried blood spot results showing both high and low levels of PrEP adherence.

The qualitative data was then examined through a theory of practice framework to examine social and individual factors that influence PrEP uptake, initiation, prevention effective use and disengagement.

Forty-two cisgender adolescent girls and young women aged 16-24 were included in the study. Most reported ever having a sexual partner (68%) and over half (58%) currently had a primary sexual partner. Half reported having sex in the previous four months. Most participants (85%) lived at home with parents or grandparents.

Forty three per cent of the participants had high adherence (~4-7 doses per week) and the other 57 % had low adherence (~3 or less doses per week).

Disclosure to family and friends

Most participants reported that they first disclosed their PrEP use to another female family member, often their mother. Those with low PrEP adherence feared that their parents would disapprove and tell them to quit taking PrEP. One participant shared:

“I was scared thinking that she [mother] might force me to stop like other parents did to their children… At first, I kept taking it in secret because I still did not know if she [mother] wanted me to continue or stop… It affected me badly because I was mostly quiet about PrEP even when my friends were telling others about PrEP, telling them [other women] to come [to the study]…”

They felt isolated, first concealing their PrEP use out of fear and apprehension. Still, most of these participants did ultimately disclose to one or two other trusted family members. They framed the reactions they received as permission to continue taking PrEP:

“Cause I thought she will react funny like, ‘What is this pill? How do you trust these people?’ But, she reacted right [allowed her to continue], and I continued with it [PrEP] then”.

In contrast, those with high adherence to PrEP were more likely to describe how disclosure brought support and motivation, and they were more likely to discuss their PrEP use with more people in their lives:

“People who are close to me support me very much in things that are related to PrEP. They remind me [to take my PrEP] and ask if I’m still continuing [with PrEP], and I say, ‘Yes.’ And they ask, ‘How is it treating me?’, and I say, ‘There’s nothing [no side effects].’ I’m happy because most of them are people who are important to me. So, when supported by people who are important to you, just say, ‘Let me go [pick up my PrEP] because they are important, and they support me.’”

Those with high adherence more often discussed the benefits of PrEP for themselves and others, and recognised how raising other young women’s awareness of PrEP could increase support for those starting PrEP:

“My mother, [I] talked to her the first day I heard about PrEP…There is a teacher who loves me and stands by the girls. [The school] called us [to a meeting], so all three of us [sisters/siblings] [could] learn about PrEP…. I told my friends about PrEP, and I did take it too.”

Disclosure to partners

Many participants shared that men can’t be trusted and often have multiple partners (as did many of the participants). A common strategy participants used was to assess the partner’s openness to PrEP without disclosing, using their reaction to inform whether they disclosed:

“I did make a plan [to disclose to my boyfriend] but I wanted to see first how he [boyfriend] thinks about PrEP. If I’m talking about important things, I want to see how they react or think. When I saw that this person [boyfriend] is not thinking like I do, there is no way that he will understand what I will tell him [about PrEP].”

Those with high adherence often received supportive reactions from partners. Many partners were interested in PrEP as a prevention strategy for themselves:

“He asked, ‘Why I used it [PrEP]?’ And, I told him that, ‘You guys, [we girls] cannot trust you fully. You are not faithful…. That is why I’m using it.’ He said, ‘It’s the right thing [taking PrEP]’. He was interested [in PrEP]. He said, ‘Why don’t you give me one?’ I said, ‘No, these pills are for the whole month [for me], and so I can’t give it to you.’”

Supportive partners often provided reminders, even offering to pay for PrEP:

“When I come [back from my sessions], he asks what I did there and what do they [study staff] ask? What is the reason behind PrEP? There was the time where my pills were finished, and I came here [study site] and it was already closed. So, I didn’t have pills for the weekend. So, he [boyfriend] asked if I could get it [PrEP] at the chemist so that he can buy it for me, and I said yes, and I told [him] how much it cost.”

Even so, the participants knew they couldn’t rely on their partners:

“‘If ever I put my health on other person’s hands, I will be wrong’”

Those with low adherence often received more challenging reactions from partners, such as suspicion, misinformation, and conflating PrEP with HIV treatment. In contrast to the ‘permission’ received from close family, support from partners was something nice to have but not necessary, and the young women did not let their partner’s reaction deter their use:

“I told him [boyfriend about me taking PrEP], but he did not want me to use it [PrEP]. He was asking, ‘What pill is this?’ He was [acting] the same as those people who spoke negative things about PrEP, saying ‘No, you are infecting yourself with the [HIV] virus!’ What pill is protecting you from something you don’t have?’”

When asked by the interviewer how her boyfriend’s reaction made her feel, the participant stated:

“I didn’t care about him because I know why I am taking this pill.”

For other participants, such negative reactions were unacceptable, leading to at least one breakup:

“I told him [about PrEP], and he did not believe it. He thought it is ARVs because he heard that they [pills] are big. So, he thought I am ARVs. I dumped him.”

When the interviewer asked how she felt about her relationship ending because of PrEP, the participant replied:

“I was very hurt. I even told my family about it, and they said I did right by dumping him. They knew about our relationship, and so did his family… [my family said that] ‘if he wanted to know about your status, he would have come here and asked about it.’”

Navigating scrutiny and loss of support

Disclosure led to enacted and anticipated scrutiny for participants, regardless of adherence. They described the attention and assumptions as exhausting:

“If I want do something, there is always someone watching, and they’ll be like, ‘She’s doing that [PrEP and having sex]? Why is she doing this? Why is that, why is that? It’s mind draining because when we’re doing something [PrEP] we have to be like, ‘Ok, someone is watching. I must not do that [PrEP and having sex]? I must let myself do this?’ Because everyone sees you as this person, so it’s mind draining.”

Sometimes, people in their life would withdraw support. When asked about whether she had bad experiences related to PrEP, one participant shared:

“I think it’s bad because before she (aunt) talked with her friend, she was supportive. Like with my dates, I told her my PrEP dates, and asked her to remind me, if I forgot. She phoned me even if I’m at school. And even if I’m home, she asked: ‘Did you take your pills?’ But, after she talked with that person, she stopped supporting me…She didn’t support the thing that is about PrEP, because she heard the pill makes you sick [Gives you HIV], if you take it while you are not sick.”

Those with lower adherence were more influenced by these negative reactions and criticism, which cast doubt on their decision to take PrEP. Those who maintained high adherence despite pushback were able to take the criticism in stride and find support elsewhere, such as with friends. They were more likely to have a perspective on the dynamic nature of disclosure:

‘Today your mother supports you. Tomorrow your dad supports you. The following day your brother supports you and your mother has stopped being supportive. Like it changes…’ 

Conclusion

In this study, participants with high levels of PrEP adherence disclosed their PrEP use to at least one family member, at least one friend, and at least one partner/boyfriend. They were more likely to be able to get different kinds of support from different people based on their own needs, which included motivation, reminders, emotional connectedness, and validation of their use.

In contrast, those with low support disclosed to fewer people, and they were less likely to differentiate between the types of support they were seeking from people. The researchers noted that multiple factors could have been influencing these findings. The social networks may have been too small or it may have been that participants could benefit from help in developing resilience and effectively identifying safe and supportive people from their networks.

Increasing knowledge and acceptance of PrEP through awareness campaigns can help foster a supportive social environment for PrEP. On an individual level, the authors note that interventions to help adolescent women and young girls compartmentalise negative reactions and successfully gain support for their PrEP use may increase their agency and thus adherence.