The 13 participants included in this qualitative analysis ranged in age from 18-24 years; the median age was 21 years (IQR 18.5-22). More than two-thirds (9/13) were tertiary-level students in the inner city attending nearby universities or technical colleges, with the remainder having completed high school and seeking employment. All were living with parents, other relatives or in student residences. Prevalence of GBV was high, with 60.5% (8/13) reporting ever having experienced physical, sexual or emotional violence, compared to the 52% who screened positive for lifetime GBV at enrolment in the Johannesburg qualitative sample as a whole (see Table 2).
All but one were in a relationship with a primary partner, and about half reported inconsistent condom use. Of the 12 women with a regular sexual partner, 11 described their partners negatively, as either “controlling”, “cheating” or “lying”. While all 13 participants had accepted PrEP at or shortly after enrolment, by study completion, only seven had maintained PrEP use throughout their study participation (which ranged from 5.8 to 15.3 months). Three had temporarily stopped PrEP due to a life transition (such as pregnancy or ending a long-term relationship) yet aimed to re-start use in the imminent future. The remaining three participants had discontinued PrEP with no intention of resuming use.
Experiences of club sessions
Despite the clubs being designed so that cohort groups would move through the four sessions together, some women swapped groups due to scheduling conflicts. These changes appeared to undermine group cohesion and create anxiety for some women who preferred to remain with their original group, especially when rapport, trust and friendships had been established. For example, Busi, a young working mother, was dismayed when a new work schedule forced her to change her club group.
So it was awkward for us to feel… for me to feel free because I was not used to those
girls because obviously if we know each other from way back, it’s easy for us to talk.
Switching groups meant there was a need to re-establish peer relationships and re-build trust each time. Some women chose to simply arrive late if they had scheduling conflicts or experienced challenges with public transport to the clinic. Lack of punctuality and poor attendance were cited as a key dislike by those who did arrive on time. At least one participant described being the only participant to arrive for a session one day, and the session subsequently being cancelled.
Overall, the women who did attend sessions said they liked both the content and the interactive format. One participant, Dudu, captured a common sentiment, highlighting the clubs’ provision of a safe space for sharing problems, saying:
Like, the club meetings help us, like, we are free to talk about anything, like, any problems that we…So we are like friends, like, we feel free to talk about anything because we know that we don’t know each other… You know that your life and stuff, like, they are safe with them, so I think they [clubs] are very good.
While clubs were generally facilitated by a peer-aged coordinator, the session that focused on GBV required additional psycho-social support, which was provided by older trained counsellors who co-facilitated these sessions. Most participants saw value in having them present. Reflecting a broader cultural norm in South Africa, in which young people are expected to defer to and learn from their elders, Lillian explained how younger club participants could draw on the experiences and life expertise of older women in the group:
…they [older women] give us the advice to say, hey, ‘if this happens, this happens’. Because they have been through those [experiences], so I think it’s fine, the old ones should continue, isn’t it, they say ‘indlela ibuzwa kwabaphambili’ [a Zulu idiom which means ‘you ask for directions from those who have gone past it’], ja.
Despite logistical and scheduling challenges, most of those who managed to attend club sessions reported finding them personally transformative. In the sections that follow, we unpack the nature of these transformations through case studies of four of the 13 participants, highlighting key aspects of their narratives over time. To select these cases, we created a conceptual grid juxtaposing patterns of PrEP use with club attendance (see Table 3) and allocated the 13 participants assigned to attend clubs to this grid. Individual cases representing the different fields of this grid were then selected to capture a broad spread of experiences.
The value of social support: the case of Neli
Studying to re-take her final school exams, Neli spent most of her time moving between the confined spaces of school and her parents’ separate homes. Fearful that her PrEP use would inadvertently expose her as sexually active, Neli hid her PrEP and reasons for going to the clinic from her mother, citing headaches or stomach pains instead. Despite her mother’s strictness, she had managed to maintain a secret relationship for over a year. Neli characterised her relationship dynamics before joining EMPOWER as:
…unfair because it was one-sided...like it was more like whatever he says should stand whether I disagree or I agree. It’s [like] my word did not count.
She summed him up as "controlling in a nice way", stating he was never physically violent toward her. She took precautions to prevent any provocation, however, also concealing her PrEP use from him, saying “I’m avoiding many problems.”
Like many women in the study, Neli was strongly motivated to start PrEP because she recognised her acute risk for HIV infection. Condoms were not used with her partner and she did not trust him to be faithful to her. She used contraception to prevent pregnancy, and now PrEP would protect her from HIV. But adherence was challenging, and those early days required strong self-motivation and discipline. She had little pill-taking experience and in fact disliked taking pills altogether. Having overcome the initial side effects of dizziness and nausea, she did not want anyone to dissuade her from continuing PrEP use. As an early PrEP adopter, Neli was therefore cautious about disclosing to others in her community, recognising that “the majority are not aware of the PrEP pill”. She worried about potential stigma attached to PrEP use, and during her first interview, she imagined how people might respond:
‘Why is she using PrEP? It means she is sleeping around’. [And so] for me I feel, when somebody judges me I feel discouraged. I wouldn’t want--, if it’s just the group [club peers] that knows, it’s okay for me.
In this way, Neli’s club peers were the only people who knew of her PrEP use. Not only did they share similar motivations for using it, they also became a critical source of emotional support over time.
Well, [takes a deep breath] it’s like a girls’ talk, you know where you get to be open, when you get to hear of other people’s views, neh? That is where you got to talk about how you feel and it’s very helpful to those whom are mainly discouraged.
Neli further valued club sessions for the content of the curriculum, recalling “we learnt about confidence, we learnt about esteem, we learnt about gender-based violence. We learnt a lot.” Not surprisingly, Neli attended nearly every club she could, 5 out of 6 in all.
When she returned for her second interview four months later, she spoke about how the new knowledge had become integrated into her life. She talked extensively about the positive impact of clubs on her self-confidence and on her relationship with her partner.
[S]ince from the last time I came here, a lot of things have changed and I feel I began to have the self-esteem to stand firm in whatever I want to do in the relationship specifically….I had problems, I couldn’t speak up, you know, I couldn’t express how I feel….But ever since I came here, I was able to challenge the world, I was able to face whatever and express myself on how I feel, ja.
Immersing herself in the stories of other women in the clubs also helped shift Neli’s beliefs about GBV.
Well, I was at first, when it came to gender-based violence, I was more into [believing] if the woman was wrong, then she deserves the punishment. If the guy is wrong so, so, he also deserves the punishment. But since coming here and hearing other people’s views and stuff, I understood that gender violence is bad, it’s never good… It is not that somebody has to be wrong or right, it is itself just wrong and it should be reported if there is any sign of gender violence in any environment or community.
As the clubs influenced her attitudes about gender and power in relationships, things began to change in her own relationship.
From the groups and from the clubs that we’ve been attending I learnt to stand firm and always have a word in everything that is happening in a relationship. So eventually things started changing, we started understanding each other and it was now both-sided and not one-sided. So ja, things are now controllable.
By the second interview, Neli had settled into a daily adherence routine, although she continued to take her PrEP pills covertly. Having chosen not to disclose PrEP use to anyone, club participation appears to have filled a gap that otherwise may have been provided by supportive family members or a partner. It also appears to have ignited a new-found consciousness and confidence for Neli, enabling other positive transformations in her life. When asked whether she would attend clubs in the future if convened at public clinics, Neli replied, "I would, I would be the first one and I’m sure I would be in the front seat.”
Motivation to exit an unhealthy relationship: the case of Lerato
Having started dating early in life, Lerato had been with her partner since the age of 13. She was aware that his regular infidelities placed her at risk, but nonetheless acknowledged that she “was that person who didn’t use condoms like at all.” In addition, his cheating had led her to take a “side lover” as well, a fellow student where she attended university, who himself had another concurrent girlfriend. During Lerato’s first interview, she mentioned that her partner had hit her once and she feared further violence. He did not support her PrEP use either, saying he “did not take the pill seriously”.
During her second interview, she revealed that she had not understood the difference between the clinic visits and club sessions—and hence hadn’t attended any sessions. As a busy student, she was also concerned about the extra time commitment being asked of her, saying "Hey, I am busy, like one main reason that makes me not to come here is because you take time, guys." But there were other reasons Lerato had missed club sessions. During this same interview, she also revealed that her partner had beaten her after finding out about her side lover. She shared:
I told you I couldn’t come [to the club] because I was messed up, do you remember? I had a blue eye [laughs] ...and I was writing exams.
After this beating, Lerato decided to end the affair. She revealed that her partner had agreed to refrain from hitting her again, provided she behaved as "a good girl". Indeed, she claimed to be doing just that: "I am not sleeping with many people, I have one sexual partner.”
Between the second and final interview, Lerato experienced several important changes in her life. She had begun to attend club sessions and to reflect more critically on the relationship with her partner. At the first session she attended, which focused on GBV, she described arguing with some of her club peers, noting:
…they had their own views and I had my own views so, ja, we were in a different world ‘cos we didn’t have anything in common…I felt like girls let their men rule their relationships, they don’t know how to stand for themselves. ‘Cos I believe that when you have complaints in a relationship, it’s your choice to stay or go. If you prefer to stay, you have to be able to face the challenges. So they are complaining but they are still staying. So I didn’t get that.
Lerato herself eventually made the decision to “stand for” herself. After discovering that her partner had cheated on her yet again, she ended the relationship. She later reflected that club participation had given her pause for thought about her initial impatience with her peers who were struggling with unhappy relationships:
I learnt that every relationship has its own way and strategy they use to last, so ja, so, I for one should learn not to judge other relationships ‘cos I judge a lot, so ja….
Critically, this shift in perspective appears to have been enabled by the supportive environment of the clubs and her overall study participation. Referring to her own experience of GBV, Lerato said:
In a way, the study made me open up, talk more about what happened in my relationship, it helped, ‘cos social workers were here to assist us, talk to us about what had happened, who we could contact for help.
Following the break-up with her partner, she decided to stop PrEP, and planned to re-start it when she became sexually active again. Hopeful for a new relationship in the future, Lerato credited the study and the two club sessions she had attended with helping to empower her to take charge of her health and her life more broadly.
[They have] made me take my health seriously ’cos I started preventing, taking PrEP, attending studies, learning more about what other women face, how we could conquer all problems and come up with strategies to make our men listen to us and our needs.
Importantly, she described how the sessions had been useful toward building practical strategies for dealing with PrEP disclosure in future relationships:
“we were even [role-play] acting…We came up with ways to make--, to apply communication on relationships to explain PrEP to other people and understand and ways in which you can explain to people who don’t want to understand, so, ja, it was helpful."
These role-play activities may have helped participants like Lerato communicate their HIV prevention needs with their sexual partners and take ‘ownership’ of it – just as they enabled her to claim her right to be in a non-abusive relationship. Moreover, being able to ‘explain to people who don’t want to understand’ is a critical part of raising awareness at community level about—and acceptance of—PrEP as an HIV prevention strategy for young women.
When clubs alone are not enough: the case of Zanele
At the time of her first interview, Zanele, a university student, had a long-term partner with whom condoms were not used even though she did not trust him. When asked why she wanted to use PrEP, Zanele’s story was like so many of the young women in EMPOWER. Put simply, she wanted to participate:
…because eish, I can’t trust my boyfriend…especially if you are sexually active. Then so when I looked at it, indeed it was in line with my situation, to say okay I am sexually-active and I am not using condom, I am at risk of getting HIV ‘cos I don’t even trust my boyfriend.
Zanele initially only disclosed her PrEP use to her younger female relatives and encouraged her cousins to also join the study. Her older sister disapproved, however, and reprimanded Zanele by saying, “people who take PrEP are those who have multiple partners”. Zanele refrained from telling any other family members for fear of attracting additional judgement or stigma. Like Neli, she also strategically did not disclose to her partner, fearing that if she told him, "a fight will start, World War 3 will start." Zanele’s anticipated disapproval from her partner, which she feared could even result in physical violence, reflected similar concerns expressed by several participants in the study.
At Zanele’s second interview, she shared that her cousins had since joined another HIV prevention clinical trial near their home in Soweto. Possibly emboldened by this new information, Zanele decided to tell her mother about her own participation in EMPOWER. Her mom then began to support her, by reminding her to take her daily pill – referring to PrEP in code as "that thing" in order to avoid Zanele’s father finding out about it. Still, Zanele had chosen not to disclose to her partner, partly because they were beginning to drift apart in their relationship, as they “focused on external things.” She was optimistic throughout this interview though, confidently noting:
You know, I think being part of this study helped me make wise decisions, I think about everything…everything has changed.
Speaking of the clubs, Zanele said, "I found people who are loving and welcoming," which brought out a new side to her. She claimed her partner "would be shocked" to see her during a club session "because I am just a quiet person, but I have just found that platform where I can just also express myself.” She, too, found value in the club curriculum, and described the empowering effect of acquiring new knowledge in a safe, mediated space.
You see these topics that we get, for me they are okay because in a way because we talk about them, something comes out and then we again unpack them, ja, just anything….like you get many ideas, and in way, eh, amongst those ideas that you get, you can put all of them together and make a better decision for yourself.
Zanele felt that even though she had not personally experienced GBV, exploring this issue in the clubs had helped to raise her consciousness about the power dynamics in her own relationship and how to navigate them better. She noted:
Okay, in terms of relationships, eh, I have learned that communication is key. You see, when you communicate, you do not do something just because another person wants you to do it, you both need to take decisions as a couple, you need to be responsible for those decisions, there was this other time, I cannot recall what the topic was, we were talking about rights and responsibilities.
In contrast to the hopefulness expressed in her second interview, Zanele’s final interview was filled with sadness and regret. In early September, unaware that PrEP does not interfere with conception, she decided of her own accord to stop using PrEP following a decision taken with her partner to have a baby. Shortly thereafter, she went to the clinic for her quarterly visit, and reported, “Ehh, only found that on my last visit, the 22nd of November, ehh, I was tested HIV positive.” Zanele cried during the interview as she spoke about how she regretted stopping PrEP, saying, “I no longer trusted him since he had changed. If I had listened to my instincts I wouldn’t be here now.” Following her diagnosis, she had disclosed her HIV-status to her partner and revealed the entire chronology of her participation in the EMPOWER study and use of PrEP. He blamed her for bringing HIV into the relationship and they broke up.
Zanele was not ready to tell anyone in her family about her seroconversion. The only other people she had confided in were peers in the EMPOWER clubs, “Ja, strangers that I have met here in the study so far”. In this respect, the clubs functioned as a safe haven. At first, they had provided a protected space away from her untrustworthy partner, where she could freely express a new-found confidence. And when circumstances and prevailing social pressures surpassed her best intentions to make healthy, positive choices, her club peers were there to offer non-judgmental support. Importantly, she revealed how she had urged them to continue PrEP if they did not want to end up like her, telling them, “guys, you need to take it every day. It works. Take it every day.” In short, sharing her own experience as a cautionary tale became Zanele’s way to reciprocate the support she had received over time from attending the clubs.
Club attendance sabotaged by controlling partners: the case of Olive
Olive was one of only two women in the sub-sample who did not attend any of the club sessions. Despite being randomised to this group and receiving information about the clubs and regular reminder text messages, both women said they knew little to nothing about how the clubs worked, or the content and focus of these clubs.
For Olive, a college student who lived with her partner of one-year, studying full-time meant there was simply no time to attend club sessions. During her final interview, she revealed that her partner also had discouraged her attendance, noting "Sometimes, like, that person used to stop me from coming." Olive described her partner as controlling and emotionally abusive, but tolerated his behaviour given her financial dependency on him. During her first interview, she openly admitted to not liking him, but rationalised that:
Okay, like he is my provider now, he provides for me and accommodation, ja, I don’t have a place to go to so that I can go to school, so I have to stay with him, I have to face the situation, I had to do whatever he wants.
Olive described how the relationship had become increasingly negative, especially once she had disclosed that she was using PrEP. Her partner questioned this, accused her of being HIV-positive, and obstructed her PrEP use:
…he would, like, take my pills and hide them from me…But when he goes to work the following day, I would hunt them and find them…he said that he doesn’t believe that this thing, he doesn’t trust Truvada.
Olive told friends about this increasingly abusive situation, but they had “nothing” to say in response. She then went to the clinic to get another HIV test and showed him her HIV test results in an effort to prove her sero-negative status, but he ceased all sexual relations with her nonetheless. Stating, “I know that I like sex very much”, Olive then started having sex with other men, rationalising this as “I did that just because he was not sleeping with me…[but] I would use protection.”
During Olive’s second interview five months later, she shared that her partner had broken up with her. He had told her to leave his place, forcing her to find alternative housing at short notice. She lived alone now, and her sister paid for her accommodation. She admitted, "Eish, like I feel so relieved, like, I feel like I was put in jail there."
When the interviewer explained what the club sessions had covered and encouraged her to join the remaining sessions, Olive expressed regret. Realising that the clubs may have helped her stand up to her controlling partner especially when disclosing PrEP use to him, she said, “I have seen that I have missed a lot.” Olive’s absence from the clubs did not seem to impact negatively on her PrEP use, however. She remained fully committed to using PrEP throughout the study and continued to take calculated risks about when to also use condoms and when to rely solely on PrEP to protect herself from HIV.