Youth-friendly services was the magic: Experiences of adolescent girls and young women in the community PrEP study, South Africa

ABSTRACT

Adherence to daily oral pre-exposure prophylaxis (PrEP) for HIV prevention has been challenging for adolescent girls and young women (AGYW). As part of The Community PrEP Study (CPS), AGYW were randomised to HIV-prevention empowerment counselling (intervention) or basic medication pick-up (control). In this qualitative sub-study, we interviewed AGYW participants (n = 39) to explore PrEP use and study experiences by study arm, and study staff (n = 7) to explore study implementation, site environment, and participant engagement. Data were thematically analysed using a constant comparison approach. Comparative matrices assessed similarities and differences in study experiences and PrEP support preferences. Friendly, non-judgmental, non-stigmatizing study staff were described as central to participant’s positive experiences. Participants highly valued CPS staff’s holistic health support (e.g. physical and psycho-social). Intervention participants described empowerment counselling as helpful in supporting PrEP disclosure. However, control participants also described disclosing PrEP use to trusted individuals. Participants and staff recommended public-sector PrEP services provide holistic, confidential, and integrated sexual and reproductive health services, and community sensitisation. An adolescent and youth-friendly environment was the primary factor motivating AGYW’s study engagement. While HIV-prevention empowerment counselling was well received, welcoming, respectful and non-judgmental staff may be the ‘secret sauce’ for implementing effective PrEP services to AGYW.

KEYWORDS:

• Daily oral pre-exposure prophylaxis
• adolescent girls and young women
• adherence support
• adolescent and youth friendly services
• HIV prevention

Introduction

Persistence on daily oral pre-exposure prophylaxis (PrEP) for HIV prevention among adolescent girls and young women (AGYW) in South Africa remains a significant challenge, with obstacles including burdensome daily pill-taking, stigma at health facilities and from social networks, and inadequate social support (Cassidy et al., 2022; Celum, Delany-Moretlwe et al., 2019; Giovenco et al., 2021; Munthali et al., 2022; O’Rourke et al., 2021; Velloza et al., 2020). A longitudinal study of South African AGYW accessing PrEP via a larger PEPFAR partner from 2016–2021 reported a 38% persistence one month after initiation, and 3% re-initiation within twelve months of first initiation (Rao et al., 2023). As transitioning from adolescence to adulthood introduces shifting life responsibilities amidst still-developing executive function (Smith et al., 2013), AGYW are likely to require more intensive support for PrEP persistence (Celum, Delany-Moretlwe et al., 2019). Multilevel interventions to support African AGYW in taking PrEP have been developed at the interpersonal level (e.g. peer support groups) (Adeagbo et al., 2022; Baron et al., 2020); and community level (e.g. demand creation, alternate delivery venues, integrated services) (Celum et al., 2022; Gourlay et al., 2019; Morton et al., 2020). While AGYW have found many of these interventions to be highly acceptable and have improved PrEP initiation, they have had limited success in improving PrEP persistence (Irungu & Baeten, 2020). Consequently, a better understanding as to which intervention elements are most impactful in supporting AGYW in taking PrEP is crucial.

From 2016, oral PrEP was available at selected government health clinics in South Africa for sex workers and men who have sex with men. In 2020, the updated South African guidelines for daily oral PrEP for HIV prevention for individuals at substantial risk, including AGYW, were released (South African Department of Health, 2020). At the time of this study, AGYW’s PrEP knowledge and access through government health clinics was limited, and hampered by a lack of community-wide health communication and structural health system issues (Ajayi et al., 2019; Birdthistle et al., 2022).

The Community PrEP Study (CPS) evaluated the impact of an HIV prevention behaviour empowerment intervention on monthly PrEP refill pick-up rates and adherence among AGYW in South Africa's Eastern Cape Province (Medina-Marino, Bezuidenhout, et al., 2021; Medina-Marino, Daniels, et al., 2021). This paper qualitatively analyses CPS participants’ support preferences and experiences as part of the control (PrEP pick-up only) or intervention (empowerment counselling) arms. Specifically, we unpack CPS participants’ perceptions of what study components influenced their participation. We also share recommendations from AGYW participants and study staff on how to encourage future engagement in PrEP services in their communities.

Methods

Study design

The overall study design for CPS has been previously described, including as part of a full study protocol and baseline results (Medina-Marino et al., 2021, 2022). For the parent study, eligible participants were individuals who self-identified as female, aged 16 and 25 years, tested negative for HIV during community-based counselling and testing (CBCT), and expressed an interest in taking PrEP. Briefly, CPS sought to: (1) assess the acceptability and feasibility of leveraging community-based HIV counselling and testing (CBCT) platforms to increase AGYW’s access to HIV PrEP services, and (2) evaluate the efficacy of an HIV prevention behaviour empowerment intervention on monthly PrEP refill pick-up rates using a 1:1:1 randomised controlled trial design (PrEP pick-up only, individual empowerment counselling, or group-based empowerment counselling). Persistence was measured via tenofovir blood concentration levels.

Study setting

CPS was conducted in the Ndevana (rural) and Scenery Park (peri-urban) communities of Buffalo City Metro Health District (BCM), Eastern Cape Province, South Africa. In 2018, the year in which CPS began recruitment, Eastern Cape had a population of approximately 6.465 million people, of which an estimated 580,272 were AGYW aged 15–24 years (Johnson & Dorrington, 2023). The estimated HIV prevalence and incidence among AGYW aged 15–24 years was 9.9% (95% CI: 9.3–10.5%) and 1.73% (95% CI: 1.6–1.89%), respectively (Johnson & Dorrington, 2023).

CPS participants enrolled in the rural site accessed monthly PrEP services from a study site integrated within an existing non-government community centre situated along a main road and next to a taxi-rank (Figure 1). Participants enrolled in the peri-urban site accessed monthly PrEP services from a study container centrally located within a township across from a church (Figure 1). The physical study site spaces were designed to be comfortable and accommodating, with appropriate waiting areas for participants and private consultation rooms.

Figure 1. Photos of study sites. Top: Ndevana study site (rural). Bottom: Scenery Park study site (peri-urban).

Standard services provided to all participants

All participants were able to informally engage with peers and study staff in waiting areas before and after sessions. When provided with their monthly supply of PrEP, all participants also received a basic ‘Health Package’, which included a pill box (Supplementary Figure S1), bag of chips and juice box, menstrual pads, condoms, and a study-related informational brochure. Up to three monthly reminder phone calls and an SMS were sent to all participants two days before they were due for their refill visit. As previously described, at months 1, 3, 6, 12, 18, and 24, study specific activities (i.e. specimen collection, additional data collection) were conducted, and participants received a R30 (∼2 USD) travel reimbursement (Medina-Marino et al., 2021).

Control arm

The control condition was a monthly, basic PrEP refill pick up service which sought to implement national guidelines for PrEP initiation, monitoring, and follow-up including basic education about the benefits, potential side effects, and adherence requirements of PrEP as provided by research nurses (South African Department of Health, 2017). Control arm participants were provided PrEP information by counsellors at recruitment. Research nurses also guided participants on how to access basic services provided by the study. During monthly visits to the study site, control participants checked in with a research nurse and picked up a one-month supply of PrEP. Control participants received basic adherence support from research nurses regarding ongoing PrEP use and side effects including in accordance with the recommendations of the Southern African HIV Clinician’s Society (Bekker et al., 2016). Control participants were intended to have passive and minimal interaction with staff.

Intervention arm

The CPS intervention was guided by the Information-Motivation-Behavioral Skills (IMB) Model of Adherence (Fisher et al., 2006, 2008), and incorporated content areas from the evidence-based intervention (EBI) Life Steps (Safren et al., 1999, 2004). IMB has been used to improve adherence to medication, including adherence to antiretroviral therapy (ART) (Fisher et al., 2006, 2008; Horvath et al., 2014) and daily contraceptives (Byrne et al., 1993; Fullerton et al., 2013), as well as initiation of care (Amico, 2011). According to the IMB model, behaviour change results from the joint function of three critical components: the accurate information about HIV-related health behaviours, the motivation to perform health behaviours, and the self-efficacy and behavioural skills necessary to perform the behaviours. The Life Steps intervention addressed informational, problem-solving and cognitive-behavioural steps. During intervention sessions, participants worked to define problems impacting adherence, generate solutions, make decisions about the alternatives, and arrived at a plan to implement the solutions. Finally, intervention sessions explored personal narratives around using PrEP, as well as barriers and facilitators to PrEP adherence.

Participants randomised to the intervention conditions engaged in a structured, IMB aligned monthly programme that sought to empower them with tools, knowledge, and support for adopting HIV preventive behaviours, focusing on motivation, risk-reduction information, and behavioural skills to reduce HIV transmission risk (Fisher et al., 2008). Sessions were led by a trained adherence counsellor, and followed step-by-step procedures and activities outlined in the study intervention manual (see Supplementary Table S1 for example activities).

Intervention arm participants were either randomised into: (1) one-on-one individualised and information tailored sessions with a trained counsellor, or (2) group empowerment counselling sessions (i.e. health club) delivered by a trained counsellor. The one-on-one format facilitated individual discussions to assess the participant's knowledge, personal values, and goals, and to develop and strengthen their behavioural skills relating to PrEP use. Individual counselling sessions lasted approximately 30 minutes. In the group format, participants engaged in interactive and co-facilitated sessions with other peers led by the trained counsellor. The group format sought to provide opportunities for social support and to learn and practice behavioural skills with peers Group formations, logistics, and commitments were explained to participants to encourage peer – participation and support. Risk-reduction information, educational presentations, discussions, role plays, and interactive activities occurred as a group. Group sessions lasted approximately 45 minutes to 1 hour.

Examples of monthly one-on-one and group format empowerment sessions included: (1) the Siyaya activity that involved participants identifying and listing key supporters from their networks and discussing how to disclose PrEP (Supplementary Figure S2), and (2) the Action Plan activity about defining personal and PrEP goals (Supplementary Figure S3). Intervention materials including handouts, visual aids, and interactive activities were adapted from the Life Steps, HPTN-082, and 3P studies (Celum, Mgodi et al., 2019; Celum et al., 2020; Safren et al., 2009) (see Supplementary Figures S2–S4 for examples of handouts). Monthly calendars were offered to intervention arm participants and monitored by adherence counsellors.

See Figure 2 for flow diagram comparing monthly study visit procedures for control versus intervention participants.

Figure 2. Monthly study visit procedures for control vs. intervention participants.

Staff training

Staff complement at each site included: two adherence counsellors, one research nurse, and two field workers. Prior to implementation, all staff attended a three-day training workshop on study procedures that was facilitated by a behavioural scientist. Research nurses received specific training for implementing the control arm, which emphasised the importance of providing PrEP in a professional and efficient manner. All adherence counsellors were trained for implementing both intervention arms (one-on-one and group counselling) as a contingency plan in case of staff absences. Intervention training included in-depth education on the IMB model and how its components drive behaviour change, study manual contents, PrEP knowledge, and social support, followed by practice sessions. Field workers received training on consent, study-related devices, and data collection tools for administrative and site support. Staff members were trained to create a welcoming and non-judgmental atmosphere, respecting the confidentiality and privacy of participants.

Data collection

From October 2018–November 2021, CPS participants were purposively recruited for in-depth interviews to inquire about their study experiences. Participants were eligible for more than one interview category based on the type of experience reported relevant to certain study endpoints and willingness to share these experiences. Interview categories have been previously described (De Vos et al., 2023; Mudzingwa et al., 2022); examples include PrEP discontinuation, unique patterns of use, study arm experiences, and missing study visits. Additionally, a sub-set of participants who attended their Month 24 study visit were invited to participate in an interview to describe their clinical referral experiences upon study exit. Interview guides with topics relevant to this sub-study explored: (1) motivational and influential factors for PrEP use, (2) experiences of assigned study arms and monthly support sessions, and (3) recommendations for encouraging future PrEP use. Additional interviews were conducted with all field-based CPS staff regarding study site environment, implementation activities, participant engagement, and type of support staff provided to participants.

All interviewers received a 3-day training on qualitative interviewing, including note-taking for site observations, the study protocol and good clinical practice. Participants were interviewed by trained field workers not directly involved in monthly counselling sessions. Participant interviews were conducted at secured study sites (Figure 1) which offered a private room for individual interviews. Interviews were conducted in English or isiXhosa and took approximately 30 min. Staff interviews were conducted in English and lasted approximately 60 min. To ensure that site staff were not interviewed by a colleague from their own site, a field worker from the rural site conducted interviews with staff at the peri-urban site, and vice-versa. The qualitative research team continuously monitored interview activities. Interviewers received refresher training as necessary, focusing on probing techniques and newly developed interview guides. All transcripts were audio-recorded, transcribed, and translated into English by a fluent speaker if conducted in isiXhosa. Completed transcripts were reviewed by a second team member to ensure data accuracy.

Data analysis

Transcripts were coded by the qualitative research team as previously described (Mudzingwa et al., 2022). Briefly, a subset of interviews was open coded and discussed. Codes were inductively identified and consolidated into three separate draft codebooks: (1) participants interviewed during study implementation, (2) participants interviewed after study completion, and (3) study staff interviews. Codes were iteratively refined and finalised through team discussions. All coded transcripts were reviewed by a second qualitative research team member to ensure coder consensus. The qualitative research team regularly convened to discuss discrepancies and resolve queries from second coders/reviewers. Participant transcripts were organised and coded using Dedoose (2022), whereas staff transcripts were coded manually using Microsoft Word.

Transcripts from study participants that included in-depth description of study site experiences, interactions with study staff, study arm experiences, and/or preferences for empowerment counselling and support were selected for analysis for this sub-study (Table 1). As previously stated, many participants presented for their routine refill when it suited them. This resulted in operational challenges to convene health clubs. Given that most participants randomised to the health clubs engaged with adherence counsellors on a one-on-one basis, we combined the two intervention arms into a single ‘intervention’ group for the purpose of this analysis.

Table 1. Qualitative sample included in this sub-study analysis.

Participant group	Number of participants	Number of interviews	Total number of participants in CPS
Control (PrEP pick-up only):	16	19*	201
Intervention (one-on-one or group counselling):	23	26*	402
Study Staff	7	7	N/A
Total:	46	52	603

*Some control and intervention participants had two separate interviews (n = 6).

Participant interviews were analysed using a constant comparison approach (Glaser & Strauss, 2017) to assess similarities and differences in how intervention and control arm participants described their study experiences. Code reports were generated which compiled transcript excerpts with relevant codes applied, such as ‘study site experiences’, ‘study staff’, and ‘study arm experiences’. The qualitative research team analysed and summarised key themes across code reports by writing memos and generating comparative matrices. Similarly, staff interviews were analysed using comparative matrices and memos, focusing on staff assessments of study roles, staff-participant interactions, and study activities.

Participant and staff responses were triangulated through matrices to understand provider and study environment influences on participant engagement. Emerging findings were formally presented to senior investigators and discussed.

Ethical considerations

Ethics approval was granted by the University of Cape Town Human Research Ethics Committee (UCT-HREC; Ref no.: 289/2018). Permission to conduct this study in Eastern Cape Province was provided by the Eastern Cape Provincial Research Committee and the Buffalo City Metro Health District Management Team. Participants consented to participate in the larger CPS study were separately consented to partake in qualitative interviews. A Ministerial Waiver of Parental Consent was approved by UCT to consent and enrol minor participants aged 16 and 17 years; however, minors had the option to obtain parental consent if preferred.

Participant representation

Participant quotes are represented by study arm, site, and age at study baseline. For staff, in-text quotes are displayed as a staff number and study role. Table 1 shows the qualitative sample that was included in this analysis, and Table S2 summarises participant characteristics at baseline.

Results

Of note, many participants presented for routine refill visits based on their schedules and needs. As such, it was operationally challenging to schedule and convene a health club. This resulted in counselling for group participants often defaulting to a one-on-one basis. AGYW participants in both the control and intervention arms emphasised how CPS created a youth-friendly environment which motivated their study participation. Specifically, participants and study staff characterised two key aspects of this ‘youth-friendly’ study environment: (1) friendly, non-judgmental study staff, and (2) a welcoming site that met material needs such as Wi-Fi, chips and juice, sexually transmitted infection (STI) testing, and menstrual hygiene products.

Study staff interactions: Friendly, non-judgmental, holistic support

AGYW participants consistently described the central elements of the study site were the friendly, non-judgmental study staff who provided holistic support. Many anticipated concerns about being shouted at by judgmental, unrelatable staff, reminiscent of previous experiences with public clinic nurses. Most participants were surprised by the kindness of study staff and quality of care they received, going beyond the silo of HIV prevention to addressing their social and emotional needs:

It was more than what I was expecting, I was expecting to come and collect pills then go, and I was expecting to meet with a nurse, not people who knows counselling. When you talk to them you can feel there is a healing … I was expecting healing of the body, not emotionally, and I got that emotionally and health-wise. (Intervention, rural, 23 years old)

When I got here, I found a family. They [study staff] are always ready for us, they are very kind so that is why I said I will never stop using PrEP. […] It’s very nice being here, when you get here you can tell them all your problems and they would listen to you, and they take action on that matter. We matter to you, you make us your first priority […] They love people, they make sure that you don’t walk out complaining, you don’t go home feeling sick, they do everything beside PrEP. They even care about your health. (Control, peri-urban, 23 years old)

Some intervention participants most appreciated the non-PrEP related components of their empowerment counselling sessions. For example, one intervention participant was most impacted by a session during which they discussed personal issues with study staff ‘because at that time I really needed someone to talk to’ (Intervention, rural, 16 years old).

Control participants also appreciated how study staff were available to answer any questions or provide support when picking up their PrEP refills. Notably, instead of just collecting PrEP and leaving, some control arm participants purposefully stayed longer at the site just to talk with study staff.

In pick up [control arm] sometimes you don’t stay a long time. If you wanted to stay, you can stay with the nurses and they make a conversation with you, and then you see wow it is nice being here and you wish to stay. (Control, peri-urban, 16 years old)

Participants described deeply trusting staff members and being comfortable to openly ask questions and received trusted, reliable information about PrEP and other life concerns.

Here [study site] I found friendly people who are accommodating. If you don’t know something [about PrEP or other topics] they [study staff] would give you the whole information you want, they have never given me less information, or give you certain information and withhold the other, […] I was comfortable to ask things that I didn’t know because they gave a chance to ask and the way they were welcoming. (Intervention, rural, 23 years old)

The communication between participants and staff was described as ‘free’: youth did not feel judged like they do when talking with their parents or public clinic nurses, and they trusted study staff to keep their conversations private. Participants viewed study staff more as friends or big sisters with whom they could share openly than as parents who might punish them. For example, this control participant described her communication with study staff as more open than with her parents: ‘because there are no parents, and you talk freely. […] because there are secrets and people from the site are nice’ (Control, rural, 19 years old). An intervention participant elaborated on the high degree of trust she felt with staff:

You guys [study staff] are such angels, you feel safe in any way. You feel like you talking to one of your closest family members or friend that you can disclose anything, and you know that they won’t tell anyone. Besides that, you feel like they understand you, not per se like you are in the same age group but you are talking to someone that you can trust. (Intervention, peri-urban, 24 years old)

Aligned with how AGYW described their view of study staff, staff shared how they built close relationships with participants. They described how they created a private and safe space for conversations, which made AGYW feel comfortable to share openly. Despite age differences, staff members encouraged openness by being ‘on their level’, treating participants as trusted friends or sisters rather than parents or patients.

Staff actively tried to avoid judging or shaming participants if they missed visits or didn’t adhere to PrEP:

Even if [you] miss your date for like two or three months […] we are happy that you have come. So you don't have that kind of a mentality where you shout at them for missing out for so many months. (Staff 2, Adherence Counsellor)

Several study staff described reassuring participants that ‘there is confidentiality and privacy’, and ‘whatever we are saying in the room will stay there’, as this research nurse describes:

When participants come here, they feel free […] Whatever is being said in the room will stay between us, because we have the door closed and no one is coming in, interfering with that because I have my ‘do not disturb’ sign at the door so anyone who passes knows that I’m busy. […] So participants feel free because they know that everything here is confidential, it’s private. (Staff 4, Research Nurse)

Study staff mentioned how they actively listened to participants and encouraged discussion of general health or life issues outside of PrEP to facilitate deeper relationships with AGYW. One staff member mentioned how simply having a consistently friendly attitude towards AGYW participants can coax those who are initially hesitant to share more openly. Another adherence counsellor commented, ‘I am always here to listen to you even if it’s not about PrEP. Even if it's not about your life we are here for that’ (Staff 1, Adherence Counsellor). Field workers who called participants to remind them of their visits also described having conversations about matters beyond PrEP:

We talk about some things in general like the daily things that happen. Every day we talk about those things maybe about their education, their challenges, all sorts of those things. […] We had one participant that dropped out of school but as she attended the adherence sessions, she got back to school this year. Also, there were those who failed matric [final year of high school] last year. And we motivated them that you are still young, you can still go back to school, and they did. (Staff 3, Field Worker)

This research nurse summarised how these positive staff interactions facilitated participants viewing the site as a ‘youth-friendly zone’:

They [AGYW participants] interact very well with the staff so I think see it [study site] as kind of a youth-friendly zone. Where they feel they can be comfortable, and they can be free and talk about everything that concerns youth. (Staff 4, Research Nurse)

For example, this nurse contrasted the care that AGYW feel when accessing pregnancy tests at the study site compared with the public clinic: ‘They always say this [study site] is the most comfortable space where you can say, “yoh I think I’m pregnant, can you please do a pregnancy test for me?”’ In contrast, perpetually short-staffed public clinics results in time-pressed nurses, where a

young person comes in [thinking she may be pregnant] and wants to ask questions but the nurse is so tired she doesn’t want to talk or doesn’t want this person asking way too many questions, when there are people with bigger problems. (Staff 4, Research Nurse)

Study site perceptions: Welcoming, efficient, access to material benefits

Both control and intervention participants found the study site to be a welcoming place, contrasting their positive experience at the study site to the negative experience they had anticipated based on past public clinic experiences. Many recounted previous experiences at the public clinic of waiting in long queues, being judged or shouted at by nurses or clinic staff for being sexually active, and a lack of confidentiality. One AGYW in the intervention arm commented how the study site far exceeded her expectations compared to previous treatment at her local government clinic: ‘When I got here [study site], I was already used to the clinic’s treatment. I didn’t think that it would be different and safer than the clinic’. (Intervention, rural, 23 years old)

Similarly, this control arm participant described the efficient, non-judgmental care she received at the study site in contrast to the long waiting times and being shamed at the public clinic:

You come here [study site] knowing that you came to people that are kind, no one will be shouting at you, even if you are late for your date no one will ask you why you didn’t come, they don’t ask you too many questions. You get here and they give you your pills like they are supposed to give you, you don’t have to wait too long in a queue, you walk in and they attend you and you go home. (Control, peri-urban, 24 years old)

In addition to convenient, quality health care, provided at the study site, many AGYW appreciated the material benefits tailored to youth priorities, including chips and juice, menstrual pads, and internet access. As this participant describes, many of her peers struggle with lack of access to menstrual hygiene products and with food insecurity, so these simple resources provided at site motivated them to come:

I think they [study staff] care about us because some of the participants don’t have money to buy sanitary pads, so that thing of receiving chips and juice, I think it motivates some of us. Some of us when we come here we know we will get chips and juice for free. (Control, peri-urban, 24 years old)

Compared to the public clinic, AGYW and study staff further described how the study site provided quicker and less stigmatised access to youth-oriented health services beyond PrEP, such as HIV/pregnancy/STI testing and help with other health concerns.

When I feel sick I come here [study site] and the nurses quickly assist me better than going to the clinic. […] You just one call away, and would say, ‘we are here you can come over right now.’ So for me I found a place where I can get quick help, not that I’m running away from the clinic but then there’s more privacy here. (Control, peri-urban, 23 years old)

Young women appreciate our site saying it really helped them because now they are able to come and check their HIV status freely […] someone will come to test even it’s not her date [for a PrEP refill], so they come freely. (Staff 5, Adherence Counsellor)

Staff elaborated on how AGYW felt a sense of belonging at the site. Specifically, staff found participants coming to the site just to talk with study staff, drink coffee or tea, and use Wi-Fi, even when they were not scheduled for a PrEP visit.

The way we welcome them [AGYW participants] at the site, I think it’s what they like mostly because it’s like they belong there or they work there. When they come to the site, they will feel like we are at home and even ask for tea, things that are so little. […] It’s things like that which make them comfortable and feel welcomed. (Staff 1, Adherence Counsellor)

They [AGYW participants] even come and finish our coffee [laughing]. Sometimes they just come for coffee; sometimes they just come for the Wi-Fi. […] We used to have like participants coming even when it's raining and we ask them, ‘what are you doing here in this rain?’ They would be, “No, we missed you and that's all”. And you find out it's not even their [study visit] dates – they just want to hang around. (Staff 2, Adherence Counsellor)

Finding relational support for PrEP use: Crucial for both intervention and control participants

Regardless of study arm assignment, participants describe how finding relational support both within and outside of the study was important to encourage them to use PrEP. Many participants randomised to the intervention arms noted that a particularly helpful component of the empowerment counselling sessions was the ‘Siyaya’ activity about identifying supportive people in their own networks and disclosing PrEP use to them (Supplementary Table S1, Supplementary Figure S1).

We have got Siyaya activity and the one you write the people you want to share with, I draw my aunt and mom and we shared with nurses people who are supporting me. (Intervention, peri-urban, 22 years old)

While the Siyaya activity helped intervention arm participants identify PrEP-supportive people outside the study, they also found support via other participants. This young woman mentioned how conversations with other participants motivated her to take PrEP:

Attending the [adherence counselling intervention] session is very useful, especially when in Health Club we, there is two or three of us, because we always chat sometimes, maybe before or after the session, and advising each other so it’s very useful […] Seeing other people who are younger who are very willing to take PrEP so it motivated me to, you know what, there are so many people who want so I might as well continue with it. (Intervention, peri-urban, 20 years old)

Participants in the control arm, such as this young woman, also discussed finding PrEP-supportive family members, friends, or partners on their own:

Others even my boyfriend I told that I’m taking PrEP, he’s my supporter. He even said when I go to the gym, take your pill box, put them in your bag, you will drink it at the gym when the alarm rings at 8pm. (Control, peri-urban, 23 years old)

Both intervention and control arms created and utilised similar adherence tools. Participants self-identified ways to remind themselves to take PrEP, such as taking it at the time of a popular TV show, using their study pill boxes or setting an alarm on their phone:

When you taking you decide for yourself on how you take and at what time. […] So, I just switch on my alarm, when my alarm ring everyday Monday to Sunday I just know it’s time to take my pills. And the other thing it makes it flexible to take PrEP because they give us those small pill boxes, they are very smart. (Control, peri-urban, 24 years old)

I do all house chores and I know I take my PrEP at 8 or 19:40 and I don’t forget to take it because it has been a while taking it. I said I am setting an alarm and I stopped using it because I have been using PrEP for a long time now and my boyfriend supports. (Intervention, peri-urban, 22 years old)

Recommendations from AGYW to encourage future PrEP use: Community, confidentiality, combined services

When asked how to improve PrEP use among their peers in the future, AGYW, regardless of study arm, discussed engendering a sense of community among PrEP users. Several AGYW in the control arm suggested offering group PrEP support activities, such as a WhatsApp chat group and physical gatherings with other PrEP users.

I think inviting all PrEP participants and do something for them to get to know each other and share so that when one has a problem, they can be able to talk, because when we talk with others outside PrEP, they discourage us. (Control, peri-urban, 17 years old)

Multiple participants emphasised the importance of having youth-friendly PrEP providers who care equally about their physical health and emotional wellbeing. For example, this participant defined a youth-friendly PrEP provider as one who would be attentive to her feelings and body language, contrasting her positive experience with study adherence counsellors to a hypothetical unfriendly PrEP provider:

Sometimes we come here “to collect my PrEP”. Imagine saying ‘I am here to collect my PrEP’ and my face says something else and you [PrEP provider] can see that there is something wrong, like I am angry, then you give me PrEP and I go. You don’t even ask me ‘how is life’ and all that. I think that these sessions [counselling] need to continue. (Intervention, rural, 23 years old)

Both staff and participants raised the importance of educating and sensitising the community about PrEP and its benefits. This young woman who discontinued PrEP recommended more awareness, especially among parents:

To have something that will make parents aware like that there is this PrEP pill and it helps in these things like this right [sigh], so that we can get support from the parents […] Because some parents don't have the knowledge about this PrEP and so that's why it becomes difficult for their child to use PrEP. (Intervention, peri-urban, 18 years old)

While participants felt that creating a sense of community among PrEP users is important, they also valued confidentiality and privacy. Notably, multiple intervention participants and staff mentioned the importance of a confidential, non-judgmental space for AGYW to ask questions, as they had experienced during the study. They highlighted how some AGYW are uncomfortable speaking in large group settings and are afraid of their ‘secrets being shared’. One intervention participant shared how she was assigned to group adherence counselling, but preferred one-on-one counselling ‘just because I don’t feel comfortable talking to strangers, people that I don’t know, worse when they are many’. (Intervention, rural, 16 years old)

Finally, participants and staff recommended a service-integrated approach to youth-oriented health services, where AGYW could access family planning, STI testing and treatment, PrEP, and other health services. Staff described how participants frequently asked about contraception during study sessions and were afraid to access it at the public clinic out of fear of being judged by clinic staff for being sexually active or being treated poorly. Participants received testing for STIs as part of CPS but were referred to public clinics for STI treatment or contraception. A research nurse recommended integration of multiple health services for AGYW in future health care:

We could have at least integrated family planning and also STI treatment as well for our participants. I mean most of them will be coming for family planning, not necessarily wanting PrEP. But because we are offering family planning and STI treatment, they will come for that and take PrEP and but not actually adhere to the PrEP. They’re only coming because we are offering these services that they cannot get at the local clinic. (Staff 4, Research Nurse)

Discussion

This study qualitatively explored the experiences of CPS participants by study arm and found that a youth-friendly environment was the primary motivator for continued study engagement, including returning for PrEP medication refills and services. Participants in both control and intervention arms consistently described caring, non-judgmental study staff as the most important aspect of ‘youth-friendliness’. They especially valued that staff engaged with them holistically, including social life concerns. Results from this study raise important questions on what may engender retention in PrEP services. In particular, a minimum level of contact may be sufficient as long as providers are friendly, caring, and good listeners (i.e. youth-friendly). AGYW participants also appreciated opportunities to engage with their peers taking PrEP, and informally converse with staff about PrEP and other life concerns. Intervention participants particularly valued the empowerment counselling sessions where they learned about how to discuss PrEP use with family and friends, and motivated their own PrEP use. While participants appreciated access to PrEP reminder tools such as pill boxes and calendars, they did not seem to require structured coaching or monitoring of use of those tools, as provided as part of the intervention.

Adolescent and youth-friendly services (AYFS) seek to prioritise confidentiality, non-judgmental care, and culturally-sensitive approaches (World Health Organization, 2012). Youth-friendly services have previously been shown to improve service uptake and utilisation compared with standard clinics in low – and middle-income countries (Denno et al., 2015), with applications ranging from HIV testing to viral suppression among young people living with HIV (Adeagbo et al., 2022; Zanoni et al., 2017). However, what makes something ‘youth friendly’ varies by study. For participants in this study, the essence of youth-friendly services was the person: an empathetic, available provider who could relate with them on their level. During qualitative interviews, participants did not discuss much about what the study site buildings physically looked like or how intervention messaging was tailored to them. Rather, they emphasised the trusted, deep relationships they formed with study staff; CPS site staff were consistent throughout the study, allowing participants to develop relationships with the same study staff. Multiple studies evaluating youth-friendly services across South Africa have found that creating trusted, respectful relationships with providers is what youth want most (Geary et al., 2015; Ninsiima et al., 2021; Ramraj et al., 2023; Zanoni et al., 2019). Consistent with these studies, our results point toward the need to train and sensitise PrEP providers about how to engage with young people in a way that makes them feel seen, welcomed, and cared for. Echoing previous recommendations (Delany-Moretlwe et al., 2016; Pleaner et al., 2023), training should focus on how stereotyping and judgement impedes service delivery, and PrEP should be framed as a way for AGYW to take responsibility for their own health.

Though not intended, the basic package of services provided to all participants may have inadvertently served as an active control arm. Specifically, the youth friendlessness of the study environment and staff was described by participants in both the intervention and control arms as sufficient for engendering engagement in PrEP services. Notably, the standard of care for AGYW visiting a standard government clinic is far less than what was provided to CPS control participants (PrEP pick-up only). In government clinics, AGYW typically encounter long queues, lack of privacy, and judgement from clinic staff (Dickson et al., 2007; James et al., 2018; Mokomane et al., 2017; Nyblade et al., 2022; Schriver et al., 2014). Moreover, adolescent girls often receive harsher treatment at government clinics than other age or gender categories, and are stigmatised for accessing sexual reproductive health services at a young age (Nakasone et al., 2020; Nkosi et al., 2019; Nyblade et al., 2022).

In contrast, CPS participants in the control arm encountered friendly staff who were available to discuss other life issues, access to essential needs such as snacks and menstrual pads, and efficient care with minimal waiting times. A scoping review of PrEP service delivery models among African youth found that community drop-in centres and health facilities with client-friendly and non-judgmental providers promoted PrEP initiation (Ramraj et al., 2023). In addition, numerous community-level interventions that provided PrEP via youth-friendly services found that AYFS facilitated uptake (Adeagbo et al., 2022; Maseko et al., 2020; Rousseau et al., 2021). The Girl Power study in Malawi showed that youth-friendly services (e.g. integrated services; providers trained in non-judgmental approaches; wider range of service hours) improved SRH service utilisation rates among AGYW compared with a standard clinic, but a behavioural intervention offering monthly empowerment sessions had no further impact (Rosenberg et al., 2018). Results from our study suggest that youth-friendly services may be sufficient, in and of itself, to improve engagement in PrEP services, and that additional structured support interventions may not always be needed.

One of the prominent questions regarding youth-friendly services in low – and mid-resourced contexts is how to deliver them in a scalable, sustainable way. WHO guidelines set forth five primary characteristics for what are considered adolescent-friendly services: accessible, acceptable, equitable, appropriate, and effective (World Health Organization, 2012). AGYW in this study stressed the importance of the ‘acceptable’ characteristic: that providers are non-judgemental, and that care is provided in an efficient and confidential manner. As implemented in this study, future youth-friendly training should focus on the providers: relating with young people in a way that makes them feel seen and heard, refraining from shaming behaviours and attitudes, and ensuring privacy and confidentiality. To maximise PrEP access, youth-friendly services training should also be targeted toward a broader range of potential PrEP providers, including peer navigators (subset of community health workers) and counsellors in addition to nurses (Adeagbo et al., 2022; Nelson et al., 2022). Strengthening relationships between health providers and AGYW may have causal effects of improving PrEP demand creation: if providers can more easily speak with AGYW, their recommendations about PrEP will be more widely heard and shared by AGYW.

Finally, both staff and AGYW participants in this study recommended that PrEP be delivered as part of integrated SRH services all in one stop. Access to STI and pregnancy testing in a welcoming and supportive environment motivated some study participants to come for study visits. Aligned with recommendations from other studies (Cassidy et al., 2022; Pleaner et al., 2023; Rousseau et al., 2021), implementers should consider providing PrEP as part of an HIV sero-neutral platform, family planning, and STI testing and treatment, all embedded within one clinic, staffed with AYFS-trained providers.

One limitation of this study is that we did not interview AGYW accessing PrEP services in government health clinics. This limited our ability to directly compare the CPS intervention arm with the standard of care for PrEP access at a public clinic. However, a rich literature describing AGYW’s experiences accessing SRH services could easily be reflected upon. We have also conducted a follow-up qualitative analysis of experiences of participants accessing PrEP from public clinics after study exit (Mudzingwa et al., 2024). A further limitation is social desirability bias: since qualitative interviewers were study field workers, participants may have felt pressured to say positive things about their interactions. We focused our analysis on transcripts which were more in-depth, and on transcripts where participants gave specific examples of how they applied study learnings to real life. Another limitation is the small number of staff interviews conducted; however, all existing members were interviewed. Finally, results may not be generalisable to other settings beyond these study communities in Eastern Cape, South Africa.

Conclusion

Our findings support that youth-friendly providers may be the crux of what is needed for PrEP adherence support among AGYW in South Africa. Future interventions should prioritise training a wide cadre of providers to be welcoming, non-judgmental, and supportive of AGYW seeking SRH health services, of which PrEP is a component.

Author contributions

EKM: Analysis, Data curation, Writing – original draft, Writing – review & editing; LDV: Methodology, Project administration, Data curation, Analysis, Writing – original draft, Writing – review & editing; LF: Methodology, Project administration, Analysis, Writing – original draft, Writing – review & editing; MA: Conceptualisation, Methodology, Analysis, Writing – review & editing; ITK: Writing – review & editing; SH: Funding acquisition, Writing – review & editing; CC: Funding acquisition, Writing – review & editing; LGB: Principal Investigator, Funding acquisition, Resources, Conceptualisation, Writing – review & editing, Supervision; JD: Principal Investigator, Funding acquisition, Methodology, Analysis, Writing – review & editing; AMM: Principal Investigator, Funding acquisition, Resources, Conceptualisation, Methodology, Writing – review & editing, Supervision

Ethics approval

Ethics approval for this research was obtained from the University of Cape Town Human Research and Ethics Committee (HREC 289/2018). Separate approval was given by the Eastern Cape Provincial Department of Health to conduct the research in Eastern Cape Province. This study was performed in accordance with the ethical standards of the 1964 Declaration of Helsinki and its later amendments.

Consent to participate

Informed consent was obtained from all individual participants included in the study.

Acknowledgements

We kindly thank and greatly appreciate all the adolescent girls and young women in our study who agreed to be interviewed and shared their experiences with us. We thank Ms. Keabetswe Kodi, Ms. Lungelwa Mlanjeni, and Mr. Ralph Mawarire of the Foundation for Professional Development for project coordination and support. We would like to acknowledge the adherence counsellors and research nurses for the provision of implementation details included in the study methods. We further thank our field teams for their dedication and hard work. We thank Buffalo City Metro Department of Health (BCM-DoH) for their support and engagement in ensuring successful implementation of this study.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Data availability statement

De-identified data presented in this manuscript will be shared upon reasonable request and receipt of a completed data request form.

Additional information

Funding

This research is funded by the National Institute of Mental Health (NIMH) of the U.S. National Institutes of Health under award number R01MH114648 to AMM and LGB. Complementary funding was provided by The Bill and Melinda Gates Foundation though the South African National HIV Think Tank to AMM and JD. The funders had no role in the study design, data collection and analysis, nor do they have any role in manuscript preparations or publication decisions.