Challenges to PrEP use in adolescent girls young women in Sub-Saharan Africa: a systematic review of qualitative studies

Abstract

Background

PrEP has the potential to combat HIV epidemic among Adolescent Girls Young Women (AGYW) in sub-Saharan Africa. This study aimed to review research focusing on AGYW experiences and challenges related to PrEP use to promote prevention programmes.

Methods

The PRISMA guidelines were used to direct the search, data collection, synthesis and review. PubMed and Embase databases were searched to identify recent studies that used qualitative approaches to report on the experiences of AGYW in using PrEP.

Results

The use of PrEP was associated with a believe that AGYW were having multiple sexual partners. These misconceptions made it difficult for AGYW to disclose the use of PrEP to sexual partner and families and compelled them to conceal it. The use of PrEP enacted agency, empowerment and self-worth among AGYW.

Conclusion

AGYW ability to exercise decision on the initiation of PrEP and adherence to the course required convenient and supportive context.

Keywords:

• AGYW
• HIV
• prevention
• PrEP
• Sub-Saharan Africa
• qualitative

Background

Recent data from UNAIDS showed that Adolescent Girls and Young Women (AGYW) in sub–Saharan Africa are at increased risk of acquiring HIV infection, accounting for 63% of all new infections in the region (UNAIDS, 2023). Eastern and Southern Africa and West and Central Africa regions reported higher rates of new HIV infection among AGYW. According to UNAIDS, the estimated new HIV in AGYW were 70%-80% of the total HIV infection in this age category (UNAIDS, 2023). These rates reflect multiple societal, economic and cultural biases around HIV and excessive vulnerability of AGYW in the African context. Different gender and power dynamics impacted AGYW ability to take decision on their bodies and sexual life. Research reported that AGYW are less likely to imply safe sex by using protection (Chabata et al., 2020; Chapman et al., 2019; Duby et al., 2021).

In effort to reduce the burden of HIV on AGYW, pre-exposure prophylaxis (PrEP) for the prevention of HIV was promoted to protect a generation from the devastating effect of HIV and AIDs. PrEP is considered as a scientific breakthrough, and it was recommended by World Health Organization to be provided to all persons at substantial risk of HIV infection (Grant et al., 2010; Smith et al., 2012; U.S. Food and Drug Administration, 2012; World Health Organization, 2012, 2015). PrEP is increasingly considered as a critical component of comprehensive HIV preventive programmes. The oral type of PrEP requires regular intake to provide protection against HIV. Many African countries with high rates of new HIV infection among AGYW established programmes to provide PrEP to this age group. However, after years of availability, AGYW still carry the extensive burden of new HIV infection (UNAIDS, 2023). This low impact could have been related to different contextual factors related to PrEP settings including access and convenience. Reports outlined challenges facing AGYW in disclosing PrEP to sexual partners, family and peers because of different misconceptions and judgmental behaviors related to PrEP. AGYW experienced barriers which seemed to outweigh their ability to prioritize their health and protection. A recent study from Kenya reported that PrEP continuation among high risk population including AGYW was 29–32% in month 1 and dropped to 6–8% in month 3 (Were et al., 2020). A systematic review by Sidebottom et al., reported an adherence rate ranging between 29 and 76% in most African countries (Sidebottom et al., 2018). Clear understanding to the complex factors that affect the uptake and adherence of AGYW to PrEP remain essential to enhancing the service delivery this preventive treatment. This study aims to review empirical research focusing on AGYW experiences and challenges related to PrEP in sub-Saharan Africa to promote best practices in prevention programmes.

Methods

This systematic review has considered studies that used qualitative approaches to report on the experiences and challenges related to PrEP in AGYW in sub-Saharan Africa. The Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) 2020 guidelines were used to direct the search, data collection, synthesis and review of findings (Page et al., 2021).

Inclusion criteria

Qualitative studies were eligible if they have been performed in the sub-Saharan Africa. All qualitative research that reported on the experiences and challenges of AGYW related to PrEP were included. Studies which presented qualitative data analysis as a part of other data collection were also considered for inclusion. The phenomena of interest were experiences and challenges related to PrEP for the prevention of HIV. This included studies performed on AGYW who were enrolled in the PrEP programmes or thinking to enroll. It also included AGYW who declined PrEP or interrupted the course. Eligible studies must have used in-depth interviews, focus groups or both. Studies from Jan 2020 until August 2023 were included to report on the most recent experiences with PrEP. During the preliminary search, no studies before 2020 were found. Therefore, the inclusion timeframe was set to include this year and beyond. Lacking research before 2020 might be influenced by delays in scaling up PrEP use in AGYW age category in sub-Saharan Africa.

Exclusion criteria

Studies were excluded if they examined experiences of African women outside of the sub-Saharan Africa. Studies were excluded if they were assessing the opinion of different stakeholders including healthcare providers, families and peers. Studies were excluded if they were examining selective groups including sex workers, transgender women, drug users, homeless or incarcerated women because of different context. Only original articles published in peer-review journal were included and results from grey literature were excluded. Table 1 demonstrates the final inclusion and exclusion criteria.

Table 1. Inclusion and exclusion criteria.

Inclusion

Exclusion

Original articles Assessing the experiences and challenges of AGYW related to PrEP Qualitative study designs Qualitative part of mixed methods Interview studies/ semi structured interviews Published from January 2020 to August 2023 Accessible full text Sub-Saharan African countries English language

Reports, conferences, country data & grey literature Opinion correspondence Review of articles Quantitative studies Studies focusing on experiences and challenges of male partners, family, peers, caregivers or healthcare providers Studies included sex workers, transgender, incarcerated AGYW or intravenous drug users AGYW who are homeless or living on the streets Studies not published in English Studies before 2020 Studies focused on PrEP in African AGYW outside of Africa

Search strategy

The literature search was conducted in August 2023 using PubMed and Embase databases. Details of search strategy are included in textbox 1. The initial search retrieved a total of 691 published records. Out of them, 433 were from PubMed and 258 were from Embase. By eliminating 223 duplicates, the remaining 210 records were screened by selecting qualitative studies or interview/semi-structured interviews and removing non-qualitative studies. This resulted in eliminating 144 records. The remaining 59 records were screened by reviewing the titles and abstracts to verify their eligibility. Further 35 studies were excluded based on ineligible study participants. Additional 2 records were not retrieved because there was no access to full text. After reading the full text for the remining 22 records, an exclusion of another 10 studies was done. Reasons for exclusion included: assessing the healthcare system/providers, assessing caregivers, or assessing vaginal ring modality of PrEP. Last study was excluded because AGYW which were included were on the streets/homeless. The rationale for exclusion was based on differences in social and economic context. Search was performed by the two researchers independently and was cross-checked before finalizing it. There was inconsistency between the 2 researchers in 2 studies, which required reviewing the full text of these 2 studies to take final decision. Both studies were excluded based on the exclusion criteria and no changes has been applied.

Textbox 1. Details of search strategy

Table

PubMed search (n = 433) (Pre exposure prophylaxis) AND (Adolescent Girls Young Women OR AGYW)

("pre exposure prophylaxis"[MeSH Terms] OR ("pre exposure"[All Fields] AND "prophylaxis"[All Fields]) OR "pre exposure prophylaxis"[All Fields] OR ("pre"[All Fields] AND "exposure"[All Fields] AND "prophylaxis"[All Fields]) OR "pre exposure prophylaxis"[All Fields]) AND ((("adolescent"[MeSH Terms] OR "adolescent"[All Fields] OR ("adolescent"[All Fields] AND "girls"[All Fields]) OR "adolescent girls"[All Fields]) AND ("young"[All Fields] OR "youngs"[All Fields]) AND ("womans"[All Fields] OR "women"[MeSH Terms] OR "women"[All Fields] OR "woman"[All Fields] OR "women s"[All Fields] OR "womens"[All Fields])) OR "AGYW"[All Fields])

Embase search (n = 258) ('pre exposure prophylaxis’/exp OR 'pre exposure prophylaxis’ OR (pre AND ('exposure’/exp OR exposure) AND ('prophylaxis’/exp OR prophylaxis))) AND ('adolescent girls young women’ OR (('adolescent’/exp OR adolescent) AND girls AND young AND ('women’/exp OR women)) OR agyw)

Risk of bias assessment

The risk of publication bias was assessed by using Critical Appraisal Skills Programme (CASP) tool for qualitative studies (Long et al., 2020). After reading the full text of all selected articles, the quality of the methodology of each article was evaluated as ‘yes’, ‘cannot tell’ or ‘no’. Studies were considered for inclusion if they pass 8 out of 10 assessment criteria. After extracting the relevant information, all studies showed high quality and satisfied the criteria. However, most studies provided no clarification on the relationships between the researcher and participants. Details on the quality assessment are listed in Table 2.

Table 2. Assessment of risk of bias and quality of included studies by CASP tool (Long et al., 2020).

	Was there a clear statement of the aims of the research?	Is qualitative methodology appropriate?	Was the research design appropriate to address the aims of the research?	Was the recruitment strategy appropriate to the aims of the research?	Was the data collected in a way that addressed the research issue?	Has the relationship between researcher and participants been adequately considered?	Have ethical issues been taken into consideration?	Was the data analysis sufficiently rigorous?	Is there a clear statement of findings?	How valuable is the research?
Perception of and interest in HIV preexposure prophylaxis use among adolescent girls and young women in Lilongwe, Malawi (Maseko et al., 2020)	YES	YES	YES	YES	YES	Can not tell	YES	YES	YES	Very
The PrEP Journey: Understanding How Internal Drivers and External Circumstances Impact The PrEP Trajectory of Adolescent Girls and Young Women in Cape Town, South Africa (O’Rourke et al., 2021)	YES	YES	YES	YES	YES	No	YES	YES	YES	Very
Psychosocial determinants of pre-exposure prophylaxis use among pregnant adolescent girls and young women in Cape Town, South Africa: A qualitative study (Haribhai et al., 2023)	YES	YES	YES	YES	YES	YES	YES	YES	YES	Very
Young women’s lived experiences of using PrEP in Namibia: A phenomenological study (Vasco & Crowley, 2022)	YES	YES	YES	YES	YES	YES	YES	YES	YES	Very
Adolescent girls and young women’s PrEP user journey during an implementation science study in South Africa and Kenya (Rousseau et al., 2021)	YES	YES	YES	YES	YES	Can not tell	YES	YES	YES	Very
Relationship dynamic and anticipated stigma: Key considerations for PrEP use among Tanzanian adolescent girls and young women and male partners (Jani et al., 2021)	YES	YES	YES	YES	YES	No	YES	YES	YES	Very
Experiences of oral pre-exposure prophylaxis (PrEP) use disclosure among South African adolescent girls and young women and its perceived impact on adherence (Giovenco et al., 2021)	YES	YES	YES	YES	YES	No	YES	YES	YES	Very
The influence of HIV-related stigma on PrEP disclosure and adherence among adolescent girls and young women in HPTN082: a qualitative study (Velloza et al., 2020)	YES	YES	YES	YES	YES	No	YES	YES	YES	Very
Influences on early discontinuation and persistence of daily oral PrEP use among Kenyan adolescent girls and young women: a qualitative evaluation from a PrEP implementation program (Pintye et al., 2021)	YES	YES	YES	YES	YES	YES	YES	YES	YES	Very
Uptake of and adherence to oral pre-exposure prophylaxis among adolescent girls and young women at high risk of HIV-infection in Kampala, Uganda: A qualitative study of experiences, facilitators and barriers (Kayesu et al., 2022)	YES	YES	YES	YES	YES	YES	YES	YES	YES	Very
PrEP reminds me that I am the one to take responsibility of my life: a qualitative study exploring experiences of and attitudes toward pre-exposure prophylaxis use by women in Eswatini (Bjertrup et al., 2021)	YES	YES	YES	YES	YES	YES	YES	YES	YES	Very
Improving HIV pre-exposure prophylaxis persistence among adolescent girls and young women: Insights from a mixed-methods evaluation of community, hybrid, and facility service delivery models in Namibia (Barnabee et al., 2022)	YES	YES	YES	YES	YES	No	YES	YES	YES	Very

Data extraction and analysis

The data from each study was extracted and collated into Microsoft Excel spreadsheets. Domains used to organize data included study title, place, and design, participant age, sample size, study context, and findings on experiences and challenges related to PrEP. Analysis was guided by grouping the narrative into categories on key themes related to experiences and challenges reported by AGYW. These were on three areas of challenges including: disclosure related, enablers and barriers and healthcare- related experiences. A table was used to summarize the findings including quotes from the original articles.

Results

Characteristics of the included studies

There were 12 studies included in the current review. As seen in Table 3, all the studies researched AGYW experiences with PrEP in sub-Saharan Africa context. A PRISMA flowchart describing the systematic search is included in Figure 1. Among the studies, there were 3 from South Africa (Giovenco et al., 2021; Haribhai et al., 2023; O’Rourke et al., 2021), two from Namibia (Barnabee et al., 2022; Vasco & Crowley, 2022), one from each of the following countries; Malawi (Maseko et al., 2020), Kenya (Pintye et al., 2021), Uganda (Kayesu et al., 2022), Eswatini (Bjertrup et al., 2021), Tanzania (Jani et al., 2021) and Zimbabwe (Velloza et al., 2020). Final study has reported on two centers; South Africa and Kenya (Rousseau et al., 2021). Most studies included AGYW of the age group 15–25 years. However, Kayesu et al., in Uganda included even the age of 14 years (Kayesu et al., 2022). On the other hand, Vasco and Crowley from Namibia reported on young women 21–24 only (Vasco & Crowley, 2022). All studies covered AGYW alone except of Jani et al., who included opinion of male partners as well (Jani et al., 2021). Generally, the included studies were based in a mix of clinical and community settings. Most studies recruited AGYW who were enrolled in different PrEP initiatives. Out of all studies, Haribhai et al., and Pintye et al., included AGYW in settings related to maternal and child healthcare (Haribhai et al., 2023; Pintye et al., 2021). All studies followed qualitative methodology, except of Barnabee et al., which was mixed methods (Barnabee et al., 2022). Data analysis used in the included studies was thematic analysis or narrative synthesis.

Figure 1. PRISMA flowchart for the selection process (Page et al., 2021).

Table 3. Findings related to challenges to PrEP use in AGYW in Sub-Saharan Africa.

Study	Description	Context of study	challenges related to disclosure to sexual partners, family and peers	challenges related to enablers and barriers	challenges related to the health service and PrEP pills
Perception of and interest in HIV preexposure prophylaxis use among adolescent girls and young women in Lilongwe, Malawi (Maseko et al., 2020)	Place: Malawi Age: 15–24 Sample size: 40	AGYW from Girl POWER Study in urban and semi-urban clinics in Lilongwe, Malawi	AGYW expressed concerns about sexual partners’ potential attitudes toward the use of PrEP especially among married women AGYW worried that sexual partner would suspect their women of having extra-marital affairs “There would be problems in marriage…their [married women’s] partners would question them and would suspect that they have sex with other people. Many men [may] think that when a woman uses that drug that means she is not faithful, there is something she is doing and she does not want to give her partner HIV, instead of understanding that the drug will help them together.” Age 20 AGYW preferred to access PrEP without the risk of family knowing about the treatment	AGYW perceived PrEP as a method of protection against HIV when sexual partners dislike condoms AGYW reported fear of stigma due to people thinking that they might be HIV positive AGYW thought PrEP gives a room to be promiscuous because of protection “What I am trying to say is that PrEP will give room to promiscuity; people on PrEP will sleep around a lot just because they know that they have this [protection],” Age 18	Initiation of PrEP depends on the ease of access to the programme, packaging attributes and delivery context AGYW suggested PrEP services to offered in youth-friendly settings or clinics set aside from the main health facility serving adult patients “A place for the youths to be comfortable getting these drugs, like this one [Girl Power clinic] it’s just the two of us [the provider and I] in here without any problem,” Age 22 Staff at PrEP clinics to be trained for managing young people Side effects were associated with a decision to stop the PrEP AGYW favored packaging PrEP in the appearance of medications for common ailments AGYW preferred packaging to be discreet enough and resemble feminine medications used for contraception AGYW wished for PrEP packaging to be different from HIV ART as this is increasing stigmatization “[They should be packaged] in papers [small plastic zip lock bags], because if they are put in bottles people will say ‘iii that person,’ they will think you are taking ARVs, when you aren’t. But when they are in papers people think it’s just these other medicines. If PrEP drugs were the same antiretroviral drugs that are used for HIV treatment, women were concerned that being seen with ARVs would lead others to believe that they are HIV-positive’’ Age 21
The PrEP Journey: Understanding How Internal Drivers and External Circumstances Impact The PrEP Trajectory of Adolescent Girls and Young Women in Cape Town, South Africa (O’Rourke et al., 2021)	Place: South Africa Age: 16–25 Sample size: 22	AGYW from 3 P ((Perception, Partners, and Pills) study in peri-urban clinics in Cape Town, South Africa	Most AGYW enrolled in this study had disclosed the use of PrEP to someone including sexual partners AGYW felt pressure from family members affects their uptake and adherence to PrEP “I am not happy that I will no longer continue with the pills because of my mom. She believes in God, she doesn’t believe that I have sex and do other things. She doesn’t want me to take the pills…so I couldn’t take them well. I decided to stop using them.” Age 17	AGYW who adhered to using PrEP demonstrated intrinsic motivation and was not dependent on the approval of sexual partners, family or friends. “My goal was to stay negative, […] and in order for me to stay negative I had to keep on taking PrEP.” Age 25 “I want to remain safe… I could even use it for the rest of my life.” Age 22 Feeling of stigma affected AGYW motivation to use PrEP “So even if I’d think of taking the pill, it’d be like eish, I’m not sick, I don’t see the whole point of taking the pill because I am not sick, and I don’t feel anything, and it’s not like I’m going to be looking for HIV. I won’t be getting it any time soon, so it can wait, I’m going to take it another day.” Age 19 Peer support facilitated by ‘adherence clubs’ was appreciated by AGYW who persisted on the use of PrEP “Meeting other people in the (adherence) club is a motivation, you realize that you are not alone. The discussions are also motivational because you are all on the same page.” Age 24	AGYW reported side effects of PrEP especially during the first month Strategies to deal with side effects included adjusting the time of taking the pill or seeking help from clinic staff to alleviate side effects
Psychosocial determinants of pre-exposure prophylaxis use among pregnant adolescent girls and young women in Cape Town, South Africa: A qualitative study (Haribhai et al., 2023)	Place: South Africa Age: 16–25 Sample size: 18 Pregnant AGYW	Pregnant AGYW enrolled in PrEP-PP (PrEP in Pregnant and Postpartum) Cohort study in urban antenatal care clinic in Cape Town	Unmarried AGYW using PrEP during pregnancy felt unsupported and experienced stress because of argument with partners on the use of PrEP “[My partner and I] were having fights sometimes and I would go home only to find [another] problem. So, these things were not [sitting] well with me.” Age 19 AGYW felt more assured when parents support the intake of PrEP and felt that they should adhere to the treatment “[My mother] said I should take [PrEP]…and I should not mind anyone who says I have HIV [stigmatization]…[She said that PrEP] should not leave our home.” Age 21	Participants viewed PrEP utilization as self-care and proactive uptake of healthcare Self-perception of safeguard to incidents of non-consensual sex with someone of unknown HIV status motivated AGYW to utilize PrEP “[M]y decision [to take PrEP] was based on [incidents] happening around us…[W]e are being rap[ed] as young women…[On PrEP,] even if such would happen…I can be protected[.]” Age 25 Pregnant AGYW who were adherent to PrEP despite stigma, reported the feeling that treatment would protect their babies even if boyfriends were having multiple sexual contacts “I was not worried about [stigma]; no matter how [others] would have reacted, I was not going to stop taking [PrEP] because it protects me and my baby.” Age 19 “…I was happy because I knew [my] boyfriend was cheating a lot and I was protecting myself, using PrEP.” Age 21	Healthcare providers with non-judgmental behavior were appreciated Healthcare providers who were approachable, empathetic and provided psychosocial support were apricated Gaps in PrEP knowledge on the availability of PrEP provision and counseling services Complexity in navigating the health system to access PrEP “[M]any people don’t know about PrEP…[Y]ou should allow everyone or any girl child starting from 16 or even 14 years of age to access PrEP…I wish [they] can be given PrEP here in this clinic because [elsewhere], they do not get all the information…” Age 16
Young women’s lived experiences of using PrEP in Namibia: A phenomenological study (Vasco & Crowley, 2022)	Place: Namibia Age: 21–24 Sample size: 9	AGYW enrolled in fine integrated care clinics around the town of Rundu, Namibia	Disclosing PrEP treatment was limited to close family members as young women thought other people would associate PrEP to having an HIV positive partner “Because even me I cannot say it to the other person. What if that other person will ask that where did you hear about it? Me I’m afraid to tell the person that person can think that oho! This one is using those medicines maybe the partner is positive, no I cannot do it in that way.” Some young women refused to disclose the treatment status to their sexual partners for fear of being judged as being promiscuous “I didn’t tell him, I was just scared he would question me a lot. He might think that I am only using it because I want to sleep around with men or I don’t trust him or something.” Young women experienced emotional support and encouragement to continue with PrEP from sexual partners or family members Young women preferred disclosing the treatment with PrEP to other females such as a mother or female siblings than the opposite gender “I only told my mother and don’t know whether she told my father.” “Yah, like my young aunties, they knows, even my mom knows, and she once saw it.”	Young women appeared to have agency in making independent decisions about their health. The decision to utilize PrEP was motivated by being aware of the risk of acquiring HIV “My reason is I do not want to get HIV positive because I was worried about my life….…” Young women adhered to the use of PrEP felt empowered by testing negative for HIV and motivated by feeling of wellbeing “There is a lot of goods because I am free my body is healthy, so I encourage myself to take it continuously like they told me. I feel good, I just say that thank God for bringing me this opportunity to prevent myself.” Realizing that PrEP was effective relieved the stress and anxiety among young women “I was scared I thought maybe they will get HIV in my body but it was come negative, I was happy I stay stress free.” Misconception that PrEP causes infertility in women was reported to negatively affect PrEP use. Some young women experienced confrontation from contacts telling them that they will be infertile because of these medicines	The care plan for PrEP was perceived as appropriate by the participants and follow up was positively perceived with a reassurance and good interaction with the healthcare teams Young women who used healthcare providers who treat HIV-positive in the same centers where PrEP treatments was provided endured being seen as HIV infected. Furthermore, Young women reported that the packaging of both treatments was similar “My parents thought maybe I am lying. Maybe I am HIV positive, just pretending that PrEP is preventing HIV. Even if you come for follow up, when you enter in that room, maybe people thought, they will think that, no this person is HIV.”
Adolescent girls and young women’s PrEP user journey during an implementation science study in South Africa and Kenya (Rousseau et al., 2021)	Place: South Africa and Kenya Age: 16–25 Sample size: 137	AGYW selected from POWER longitudinal study at 2 family planning clinics (Kisumu, Kenya and Cape Town, South Africa)	AGYW reported different experiences with disclosure of use of PrEP to their partners, families and community Some partners accuse AGYW of infidelity and judged them negatively on the sexual life AGYW felt that disclosure to family would be beneficial but disclosure to sexual partners might cause conflict, decreased trust and breakup of the intimate relationship Fear of sexual partner’ reaction was a driver to hiding the use of PrEP “My thoughts were that he [sexual partner] might not understand me and might think that I am sick [have HIV]. So, I was ashamed to tell him.” Age 20 AGYW perceived PrEP as protective in cases of sexual partner’s multiple sexual interactions, unknown HIV status and low condom use AGYW felt PrEP as a good option for young girls under pressure, seduced by older men or engaging in transactional sex “We always want to please our boyfriends or to please friends because of peer pressure. We engage in sex without using condoms. That is why I wanted to know more about PrEP” Age 19 Strategies applied by AGYW included selective disclosure to only who they felt comfortable disclosing to AGYW who decided not to disclose, reported having to hide the pills and take them in secret “It was supportive like at least there is someone who knows that I am taking them, I am not hiding this thing. Especially if my mother knows, then I am okay. About others and stuff, no, but just as long as my mother [knows].” Age 18 Mother support was of particular significance for PrEP use where AGYW reported encouragement from their mothers Some AGYW were prohibited from using PrEP by sexual partners or family members, therefore, they decided to decline. “He [boyfriend] asked me why I should use it. “Don’t you trust me?” he asked. “Do you have a side partner?” he continued. Those were the questions asked and I decided not to use it.” Age 21 AGYW who experienced stigma and disapproval from family, peers and sexual partners were required to interrupt the use “The people in my life had the influence that PrEP is not something good, a lot of people. Like my mother because she is also against PrEP. So, as they think that PrEP is not good, I stopped PrEP.” Age 17	AGYW anticipated the use of PrEP to establish a sense of freedom, empowerment and independency AGYW felt that making the decision by themselves improved their self-esteem and made them feel that their own health is more important than other’s opinion “It has made me feel proud about myself, because it was my decision to take PrEP…based on my own needs and not other people’s [needs] I saw that PrEP [is] good for me.” Age 19 Perception of vulnerability through living in unsecure environment and risk of rape “Well, every girl is at risk of HIV and every day because we live in a horrible world, where we are raped, we are exposed to a lot of bad stuff, so I felt PrEP was just the answer you know, just prevent a disease and not to worry so much about it.” Age 20 Persistent PrEP users described increased comfort during sex without condoms and greater agency and dynamics around sex “I feel relaxed because that risk of getting HIV I have controlled.” Age 19 “I just feel PrEP is really helping, so I am not afraid [of HIV]…It has made me feel so comfortable [with my partner].” Age 17 AGYW experienced stigmatizing attitudes associating the use of PrEP with HIV positive status or thinking that AGYW who use PrEP were promiscuous, cheating on their sexual partners or sex workers.	Healthcare facility was perceived as easily accessible, and provision of PrEP was given on the same day of their clinic visit Healthcare facilitated agency and decision making by the provision of comprehensive information and advise on the appropriateness of the treatment to each case AGYW reported the need for counseling at different stages of the PrEP journey and the importance of receiving clear and comprehensive information about PrEP and feeling supported by clinic staff and knowing what to expect including side effects “It was great because they [clinic staff] clearly explained to me, and I was very clear about what this pill is and for what, and how it works. So, I was interested [in taking PrEP] because I understood what it was all about.” Age 19 AGYW experienced cognitive burden of daily commitment to PrEP pills “It was difficult for me, because I kept on forgetting [to take PrEP] I am not used in taking pills all the time.” Age 20 The packaging of the pill was perceived as confidential when AGYW received PrEP concealed in an envelop “The other thing that motivated me was that when I went to the pharmacy, the tablets were put in an envelope. That already no one can know what I am picking from the pharmacy.” Age 23 Side effects from PrEP were affecting the decision to continue with the pills The size of the PrEP pill caused difficulty in swallowing “I changed my mind because of the side effects… and the size [of PrEP pill]. My mother and aunt have their medications that they are taking but out of all these medications my PrEP pill was the biggest one… and I didn’t feel well even when I was taking it.” Age 19
Relationship dynamic and anticipated stigma: Key considerations for PrEP use among Tanzanian adolescent girls and young women and male partners (Jani et al., 2021)	Place: Tanzania Age: 15–24 Sample size: 12	AGYW enrolled in DREAMS study in urban and rural locations in Tanzania	AGYW appreciated partner’s perspectives about PrEP use and valued open communication with sexual partner Few AGYW felt that it would be difficult to use PrEP covertly to avoid a relationship discord AGYW felt that nondisclosure of PrEP to sexual partner would negatively impact a relationship. “Our relationship will be affected if he is not informed, but if I briefly explain it to him, he will understand I am using PrEP so as to protect myself from HIV infections… if he understands me properly, he can decide to accompany me and begin to take PrEP as well. But if I don’t tell him and he finds them on his own, that is where the problem steps in” Age 22 AGYW appreciated family and peer perspectives for using PrEP AGYW felt that PrEP use would improve by parental support and feared judgment from their parents and family members AGYW reported fears of stigma related to thinking that PrEP was HIV treatment, as well as fears of assumption of promiscuity “They [my family members] consider them [people living with HIV] as prostitutes, and that is why they acquired HIV.” Age 22	AGYW saw PrEP as viable HIV prevention option they could take independently of their sexual partners who refuse to use condoms Desire of AGYW to use PrEP was related to faithfulness of the sexual relationships “my husband moves to different places and I can’t know if he has other partners.” Age 21 AGYW anticipated stigma associated with HIV infection from peers and communities as PrEP was mistakenly perceived to be HIV treatment “Some when they see a HIV infected person, they think he/she was a prostitute or had bad sexual behaviors… Some will keep their relationship with me, others will stigmatize me thinking I am HIV infected.” Age 21	AGYW felt that healthcare providers were well poised to deliver PrEP education to change the judgmental manners of the partners ‘’The only person who can speak to him freely is our doctor, even he has done something wrong… the best person to change his mind would be a doctor.’’ AGYW, age 24
Experiences of oral pre-exposure prophylaxis (PrEP) use disclosure among South African adolescent girls and young women and its perceived impact on adherence (Giovenco et al., 2021)	Place: South Africa Age: 16–25 Sample size: 22	AGYW enrolled in 3 P (Perception, Partners, Pill)s prevention study in peri-urban settlement outside Cape Town, South Africa	Disclosure to sexual partner often initially raised concerns that AGYW would be unfaithful or have multiple partners AGYW perceived that PrEP protects them against non-consensual sex “[It’s] Not that I’m saying that you are going to infect me or whatsoever, but I’m just doing it because we don’t know what might happen. Maybe I might help an injured person who is infected and then get infected, or maybe I can go out partying and then have a blackout, have that guy take advantage of me or whatever” Age 17 AGYW who have sexual partners supporting PrEP encouraged them by pill reminders “He was sending me messages via WhatsApp whenever he remembers and asks me if I have taken my pill” age 17 Disclosing the use of PrEP to sexual partners provoked violence AGYW experienced direct requests from sexual partners to discontinue PrEP due to fears of promiscuity “He had this idea that if I took the pills, I would have multiple partners because I would be safe from getting HIV. It was more or less trust issues.” Age 19 Disclosure to parents, siblings and family members invoked supportive reactions AGYW described difficulties explaining PrEP to their mothers because of the misconception of PrEP might lead to their daughters becoming infected with HIV “My mother will always tell me that she doesn’t like what we are doing, because she feels that it’s inviting sickness; we are taking pills every day like we are sick” Age 17 Disclosing the use of PrEP to fathers was less common but brought supportive reaction from them AGYW who perceived that their fathers were not supportive, refused to disclose PrEP with them Disclosure to a friend who believes in the value of PrEP brought supportive reactions from them Some AGYW described disclosure to friends as a source of stigmatizing responses		The provision of legitimized health information about PrEP helped AGYW overcome the stigma “My mom didn’t believe me at first- she thought I was HIV positive- I explained to her and also showed her the posters and then she understood.” Age 24
The influence of HIV-related stigma on PrEP disclosure and adherence among adolescent girls and young women in HPTN082: a qualitative study (Velloza et al., 2020)	Place: Zimbabwe Age: 16–24 Sample size: 67	AGYW enrolled in NPTN 082/HERS study in Johannesburg and Cape Town, South Africa and Harare, Zimbabwe	AGYW faced rejection from sexual partners upon disclosure of PrEP “The guy I was with dumped me for using PrEP…I showed him PrEP and he thought it was ARVs. He was saying I am cheating, why am I using these pills.” Age 24 AGYW reported that the use of PrEP affected their sexual relationships where the friends of the sexual partners had assumed that the male partner were HIV positive as the reason for taking PrEP “When I started taking Truvada, my husband and his friends got in…When people left he said, ‘My friends were laughing at me that your wife has been taking ARVs.’ It stirs quarrels in marriages…He said, ‘I am being labeled that I am sleeping with you and you are labeled that you have HIV.’” Age 20 AGYW who used PrEP faced rejection from family members thinking that they were HIV positive and in some instances they were asked to leave their homes Disclosure to family members was challenging which made AGYW interrupt PrEP “My mom would ask a lot of questions. She would think…now you wanna do things because you are taking PrEP. I feel like some people now think I can sleep with this one and this one…I don’t want [to take it] because I don’t wanna explain it.” Age 24	AGYW experienced stigma associated with thinking they were HIV positive “This pill bottle that they give us, it’s the same bottle as those of ARVs, some people will think you are lying, she is taking the AIDS pills…it’s not easy for a person to prove.” Age 25 AGYW felt that taking PrEP brought stigma as having multiple sex partners	Support from healthcare providers and community outreach campaigns to effectively educate the community about the use of PrEP to reduce the stigma AGYW suggested that adherence to PrEP could improve by learning disclosure skills, counseling sessions, outreach material which they could give to others to explain PrEP Discreet pill carrying cases which looked like cosmetics cases helped AGYW to conceal the medicine AGYW felt embarrassed about their pill bottles being seen or heard rattling “that container would humiliate us in the street,” Age 17
Influences on early discontinuation and persistence of daily oral PrEP use among Kenyan adolescent girls and young women: a qualitative evaluation from a PrEP implementation program (Pintye et al., 2021)	Place: Kenya Age: 15–24 Sample size: 93 Some AGYW were pregnant	AGYW enrolled in PrIYA programme for maternal and child health in Kisumu Kenya	Disclosing the use of PrEP to family members and friends was encouraging where AGYW found support from them Negative partner reactions to PrEP included confiscating PrEP pills AGYW reported the need to conceal PrEP pills in a different container to convince sexual partner that the pills were pregnancy related “My husband doesn’t know that I am taking those drugs [PrEP] because if he knows…he will chase me away. He will just be convinced that I am taking HIV medication. For now, he thinks they [PrEP pills] are for pregnancy.” Age 24 Pregnant AGYW felt difficulties in disclosing PrEP use to their sexual partner and reported that pregnancy helped conceal the use and taking PrEP post-partum would be challenging “I feared him questioning me if he’d spot them [PrEP pills] or see me taking them, but I found a way around it. I decided to tell him that these were part of the pregnancy drugs I was issued at the clinic. But now that I have delivered my baby, I planned to tell the truth about the PrEP drugs because I truly do not know his HIV status.” Age 20	The ability to take PrEP pill was a key influence on initiation of the course AGYW felt empowered by using PrEP and reported that taking pills were better than persuading sexual partner to use condom consistently “It [PrEP] makes me feel happy because I’m now strong enough and I can’t get HIV even if I engage in sexual intercourse with my partner without a condom.” Age 23 AGYW experienced misconceptions like resistance to ART if AGYW contracted HIV in future	AGYW felt that the size of the pills made them difficult to swallow Side effects associated with PrEP pills affected AGYW health AGYW preferred alternative form of PrEP administration such as injections “Taking PrEP [pills daily], in fact it is a burden, it is not easy. I prefer you inject me instead of giving me pills.” Age 23
Uptake of and adherence to oral pre-exposure prophylaxis among adolescent girls and young women at high risk of HIV-infection in Kampala, Uganda: A qualitative study of experiences, facilitators and barriers (Kayesu et al., 2022)	Place: Uganda Age: 14–24 Sample size: 26	AGYW enrolled in Intervention for HIV Prevention among Adolescents and Young Women (IPAD) in urban slums in Kampala, Uganda	Disclosing the use of PrEP to sexual partner was not common practice among participants because they feared that their sexual partners would suspect them of infidelity or that they would assume that they were HIV positive AGYW who lived with guardian or family member, declined PrEP as they feared their suspension of HIV positive status “The problem is that if she sees me using them, she may think that I went and had sex with a man who has HIV. And then I feared telling her. So it is very hard.” Age 17	AGYW experienced negative effects of misconceptions prevailed in the community such as PrEP is ART and people receiving PrEP were infected with HIV AGYW felt that PrEP users were perceived as prostitutes Other misconception was people who use PrEP risk getting complications such as infertility Some AGYW reported being labeled by friends and community as HIV positive because of the use of PrEP	AGYW reported the importance of the convenience of the location of the service for adherence and inability to endure the cost of transport Tools and devices that help reminding AGYW of pill-taking and to track their schedules were perceived as helpful Side effects from PrEP affect AGYW decision to continue with using them
PrEP reminds me that I am the one to take responsibility of my life: a qualitative study exploring experiences of and attitudes toward pre-exposure prophylaxis use by women in Eswatini (Bjertrup et al., 2021)	Place: Eswatini Age: 16–24 Sample size: 14	AGYW enrolled in PrEP demonstration project by Médecins sans Frontières at rural Shiselweni region of Eswatini	Some AGYW were confronted by sexual partners who felt they should have been included in the decision to use PrEP. Disclosing the use of PrEP to cohabiting family members could lead to encouragement and pill reminders AGYW who received negative comments from family members reported reduced motivation to adhere to PrEP Unmarried young women found difficulties in disclosing the use of PrEP to parents as they would be judged as sexually active	The use of PrEP enacted agency and self-care among AGYW and evoked a sense of responsibility for one’s own life and self-worth AGYW perceived PrEP use as promoting peace of mind and confidence in staying healthy AGYW described the decision to initiate PrEP as their own and this helped them remove the need to negotiate with partner as the case with condoms Some AGYW felt that the use of PrEP helped them to commit to the use of condoms “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.” Age 18–20 Support, encouragement and pill reminders from family members promoted adherence Financial barriers to adherence include transport money “I’m committed to this [PrEP]. Even if I don’t have transport money, I’ll rather try borrowing it from neighbors, so I’m able to go to the clinic to get my PrEP pills. Then I can raise my children properly and not end up having HIV.” Age 21–25
Improving HIV pre-exposure prophylaxis persistence among adolescent girls and young women: Insights from a mixed-methods evaluation of community, hybrid, and facility service delivery models in Namibia (Barnabee et al., 2022)	Place: Namibia Age: 15–24 Sample size: 28	AGYW enrolled at community/ hybrid/ facility based PrEP services at Khomas region in Namibia	AGYW reported support as an important factor to enhance PrEP adherence Peer support between AGYW through the programme education improved connectedness between AGYW and helped building confidence to disclosing the use of PrEP “There were still people who were taking PrEP and people I knew, friends of mine took PrEP. So, I thought, like if they take, then I can even continue with my PrEP.” Age 17 Peer with inaccurate knowledge of PrEP could spread misconceptions about PrEP and lead to discouragement of use “I had friends that were telling me, … “No you shouldn’t take PrEP, people that take PrEP are only those that have boyfriends … if you take PrEP [that means] you also have one.” Age 18	AGYW perceived the importance of information on PrEP in enabling them to face challenges such as side effects, or discouragement or stigma from others “The first day I told them [my parents] when we were in DREAMS, it’s like they didn’t understand. Then I kept telling them every day we had DREAMS, telling more about it [PrEP]. Then I brought them a leaflet to read. Then they said, “that it’s fine, it’s your life, it’s your decision. You have your own right. You can take it; we won’t stop you.” Age 22	Information delivered by healthcare providers influenced PrEP adherence among AGYW Clear explanation of the regimen, side effects and how to restart if discontinued helped AGYW with the use Appointment confirmation calls from the provider helped adherence AGYW negatively perceived judgmental and stigmatizing attitudes from healthcare providers “Then I said, “I’m taking PrEP because I don’t want to get HIV.’ Then he said, “why… are you not like having one partner?’ Then I said, “I’m having.” “And is your partner having HIV?” Then I said no, then he said, “oh, so why are you taking it? PrEP is for only people that they are in a relationship whereby one partner is [living with] HIV.” Then I said, “you never know, maybe your partner is lying to you.”… Then he said ok, then he gave me, then I went home.” Age 24 Community PrEP refill services which offered flexibility of PrEP service in terms of location and time were appreciated as simple and convenient (offering at home, at school or at work services) Community PrEP refill services helped save time and transport cost Respect, trust and confidentiality of the healthcare providers was highly appreciated by AGYW “Cause what we talk about in there, in the DREAMS program, remains there. It doesn’t go outside. And, yah, that’s why I decided to open with them because I trust them.” Age 18

Challenges related to disclosure of PrEP use

Stigma associated with PrEP use was reported by AGYW interviewed in the included studies. The perceived stigma originated from tendency of others to believe that PrEP was a treatment for HIV infection rather than a preventive measure. Furthermore, using PrEP prevention in AGYW was linked to suspicion of having multiple sexual partners among these women. Most AGYW experienced difficulties in disclosing PrEP use to partners for fears of assumption of sexual infidelity (Jani et al., 2021; Kayesu et al., 2022; Maseko et al., 2020; Rousseau et al., 2021; Velloza et al., 2020). A participant from Namibia, quoted “I didn’t tell him, I was just scared he would question me a lot. He might think that I am only using it because I want to sleep around with men or I don’t trust him or something.” (Vasco & Crowley, 2022).

AGYW applied different strategies to disclose the use of PrEP including selecting who they trust and felt comfortable sharing with (Rousseau et al., 2021). Many AGYW reported arguments with sexual partners leading sometimes to violence or ending the relationship (Bjertrup et al., 2021; Giovenco et al., 2021; Haribhai et al., 2023; Jani et al., 2021; Kayesu et al., 2022; Velloza et al., 2020). Fears of sexual partner reactions led to decision to conceal PrEP, (Rousseau et al., 2021), sometimes using strategies such as exchanging the container (Pintye et al., 2021). On the other hand, AGYW felt assured when parents supported them and motivated them to adhere (Bjertrup et al., 2021; Haribhai et al., 2023; Pintye et al., 2021). In some cases, AGYW preferred to disclose PrEP treatment to female members of their families but not a male one (Vasco & Crowley, 2022). Mother’s support was encouraging (Rousseau et al., 2021). Disclosing the use of PrEP to fathers was less common but brought supportive reaction from them (Giovenco et al., 2021). One AGYW participated in Haribhai et al., study mentioned “[My mother] said I should take [PrEP]. and I should not mind anyone who says I have HIV [stigmatization]. [She said that PrEP] should not leave our home.” Age 21 (Haribhai et al., 2023).

Conversely, parental rejection and fears of promiscuous status of AGYW prevented them from disclosing PrEP to parents (Jani et al., 2021; Maseko et al., 2020; Vasco & Crowley, 2022). Furthermore, pressure from family members seemed to affect the uptake and adherence of PrEP (Bjertrup et al., 2021; Kayesu et al., 2022; O’Rourke et al., 2021; Velloza et al., 2020). Peer support facilitated by ‘adherence clubs’ was appreciated and increased adherence (Barnabee et al., 2022; O’Rourke et al., 2021). Disclosure to a friend who believes in the value of PrEP brought supportive reactions (Giovenco et al., 2021). However, peers with inaccurate knowledge of PrEP discouraged AGYW by spreading misconceptions about this treatment (Barnabee et al., 2022).

Challenges related to motivators and barriers of PrEP use

AGYW viewed PrEP utilization as a personal value associated with a happy feeling of HIV negative status (Bjertrup et al., 2021; Haribhai et al., 2023; Jani et al., 2021; O’Rourke et al., 2021; Vasco & Crowley, 2022). PrEP enacted agency, empowerment, and self-worth among AGYW (Bjertrup et al., 2021; Rousseau et al., 2021). Being aware of the risk of acquiring HIV and perception of vulnerability acted as motivators to use PrEP (Rousseau et al., 2021; Vasco & Crowley, 2022). AGYW who were adherent to PrEP reported greater agency and dynamics around sex (Jani et al., 2021; Rousseau et al., 2021). PrEP was perceived as a protective tool to reduce the control of the sexual partner who may dislike condoms (O’Rourke et al., 2021). Rousseau et al., quoted “I feel relaxed because that risk of getting HIV I have controlled.” Age 19 (Rousseau et al., 2021). Furthermore, results shows that AGYW perceived PrEP as a safeguard to incidents of non-consensual sex with someone of unknown HIV status or in situations where AGYW found difficulties in persuading sexual partner to use condom (Haribhai et al., 2023; Pintye et al., 2021). Jani et al., reported that AGYW who distrust their sexual partners’ faithfulness to the sexual relationships were interested in PrEP (Jani et al., 2021). AWYG commented “my husband moves to different places and I can’t know if he has other partners.” Age 21 (Jani et al., 2021). Pregnant AGYW who used PrEP perceived the adherence as a protective strategy to save their infants where a boyfriend might be having multiple sexual partners (Haribhai et al., 2023). Results highlighted different challenges originating from wrong information regarding PrEP including a misconception that PrEP causes infertility (Kayesu et al., 2022; Vasco & Crowley, 2022) or affect productivity (Maseko et al., 2020), or causes resistance to ART if contracted HIV at any stage (Pintye et al., 2021).

Challenges related to healthcare providers, information and pill taking

Initiation of PrEP depends on the ease of access to the programme (Maseko et al., 2020). Most programmes were perceived as accessible and employed supportive healthcare teams (Barnabee et al., 2022; Haribhai et al., 2023; Rousseau et al., 2021; Vasco & Crowley, 2022; Velloza et al., 2020). AGYW suggested PrEP services to be offered in youth-friendly settings or clinics set aside from the main facility serving adult patients (Maseko et al., 2020). AGYW who received PrEP in the centers offering ART had to endure being seen as HIV-positive (Vasco & Crowley, 2022). Taking lifelong PrEP pill was perceived by AGYW as a cognitive burden (Rousseau et al., 2021). Pintye et al., quoted “Taking PrEP [pills daily], in fact it is a burden, it is not easy. I prefer you inject me instead of giving me pills.” Age 23 (Pintye et al., 2021). AGYW favored packaging PrEP in the appearance of medications for common ailments to help them conceal the use (Maseko et al., 2020). Velloza et al., reported that PrEP which used discreet pill carrying cases that looked like cosmetics bags was appreciated by AGYW (Velloza et al., 2020). The size of PrEP pills made them difficult to swallow (Pintye et al., 2021; Rousseau et al., 2021). Some AGYW preferred alternative form of PrEP administration such as injections (Pintye et al., 2021). Side effects were challenging for AGYW and were associated with a decision to interrupt PrEP (Kayesu et al., 2022; Maseko et al., 2020; O’Rourke et al., 2021; Rousseau et al., 2021). Strategies to deal with side effects included adjusting the time of taking the pill or seeking help from clinic staff (O’Rourke et al., 2021). Judgment and stigma from the healthcare providers was reported by AGYW (Barnabee et al., 2022). A participant interviewed by Barnabee et al., mentioned “Then I said, “I’m taking PrEP because I don’t want to get HIV.’ Then he said, “why… are you not like having one partner?’ Then I said, “I’m having.” “And is your partner having HIV?” Then I said no, then he said, “oh, so why are you taking it? PrEP is for only people that they are in a relationship whereby one partner is [living with] HIV.” Then I said, “you never know, maybe your partner is lying to you.” Then he said ok, then he gave me, then I went home.” Age 24 (Barnabee et al., 2022). AGYW valued community services which offered flexibility of getting PrEP refills (Barnabee et al., 2022).

Discussion

This systematic review sought to examine challenges facing AGYW in relation to using PrEP for the prevention of HIV in a high incidence setting. The provision of PrEP to AGYW is fundamental to control HIV epidemic in sub-Saharan Africa. The number of PrEP initiatives in the region was scaling up over the last few years especially where a government approval was processed (PrEPWatch, 2023). Nonetheless, local policies still affect the ability of AGYW to access PrEP and changes such as widening the eligibility and lowering age of consent have positive impact on uptake of PrEP (Irungu & Baeten, 2020; Patel et al., 2022; Tailor et al., 2022). Despite the importance of PrEP, there are many countries in sub-Saharan Africa, with no report on uptake of this preventive strategy (Irungu & Baeten, 2020; PrEPWatch, 2023). The current review reported on 8 sub-Saharan Africa countries, highlighting the scarcity of information from the remaining African nations. According to UNAIDS, only 42% of districts with very high HIV incidence in sub-Saharan Africa were covered with dedicated prevention programmes for AGYW (UNAIDS, 2023). Therefore, future research should explore challenges to implementation of PrEP programmes in these African nations.

This review has shown a general state of fear among AGYW interviewed in the included studies. The fears seemed to originate from gender inequality and misconceptions around PrEP. Patriarchal patterns of social disempowerment manifested in men’s control over AGYW lives and access to PrEP treatment. Fears were drivers to prevent AGYW from seeking PrEP or declining it when offered the treatment (Giovenco et al., 2021; Pintye et al., 2021; Velloza et al., 2020). AGYW feared men’s rejection to their decision to use PrEP. This rejection was paired with verbal and emotional abuses as well as violence against AGYW who decided to use PrEP. Patriarchal trends in sub-Saharan Africa, were reported to disadvantage AGYW in different aspects of HIV testing, prevention and treatment services (Crowley et al., 2022; Murewanhema et al., 2022; Ninsiima et al., 2018).

The results of the current review demonstrated a common misconception between sexual partners, families and communities that PrEP was a treatment for HIV infection rather than a prevention against the infection. This confusion flared the stigmatizing attitudes and hindered AGYW ability to access PrEP. Typically, misconceptions are supposed to be addressed at the commence of the new HIV preventive strategy by offering clear and effective information to the public. The results of the current review suggest that AGYW were invited to use PrEP in communities deficient in accurate information. Delays in tackling these misconceptions impede the progress of PrEP initiatives and urgent interventions to address the prevailing concepts are necessary.

Results of the current review reflected the presence of social control mechanisms impacting AGYW decision to disclose the use of PrEP to inner and outer social circles. Disclosing the use of PrEP to sexual partner, family and peers known to increase adherence (Beesham et al., 2022; Ojeda et al., 2019). The results of the current review highlighted different experiences with disclosure of PrEP to family and peers, ranging from support to rejection. The experience with disclosure reflected the intensity of circulating misconceptions. Seeking to generate support, AGYW used very selective strategy in disclosing (Campbell & Mannell, 2016; Daniels et al., 2023; Giovenco et al., 2021; Mannell et al., 2019). Obtaining a permission to use PrEP, from sexual partner was challenging in most cases. Many AGYW struggled to share PrEP use with their sexual partners for fears of reflecting an image of sexual misbehavior and infidelity. Findings from the current review came in accordance with Skovdal et al., in Zimbabwe, who reported that AGYW perceived seeking permission from sexual partner as practically difficult and potentially dangerous (Skovdal et al., 2022). Concealing the use of daily tablets was challenging for AGYW, especially in circumstances of poverty and lack of privacy.

Improving gender equality in sub-Saharan Africa is a longstanding challenge and the findings of the current review urge the need for women empowerment in decision making. It is crucial to escalate effective public communication about PrEP and normalize their use to help AGYW access the treatment to protect themselves against HIV. Intensive campaigns to dismantle misconceptions regarding the association of PrEP with unfaithfulness and promiscuity in sexual relations are vital. Teaching AGYW about the best disclosure strategies would help them be ready for sharing the information without implicating a dramatic reaction from sexual partners, family members, peers and the wider community. Agot et al., in Western Kenya, engaged uncooperative partners in support club to improve understanding of PrEP, and reported that information sessions helped changing the opinion of these partners (Agot et al., 2022). Similarly, interventions involving male sensitization sessions reported to have a positive effect in creating a supportive partner (Hartmann et al., 2021).

In the current review, AGYW perceived PrEP utilization as a proactive health habit that enabled them to take control on their sexual lives. Many AGYW felt that using PrEP was easier than negotiating a condom use with partner. In many sub-Saharan Africa settings, condom use reported to be very low despite the high rates of STI (Maticka-Tyndale, 2012).

Healthcare providers are key to the uptake and adherence of PrEP among AGYW. Experiences of AGYW, highlighted good quality of healthcare service related to PrEP in most programmes. AGYW valued the provision of adequate information in supporting their decision to enroll and persist. Moreover, the convenience of access to PrEP was highly appreciated by AGYW. Services such as text reminders and extending pill-refilling services to community setting were perceived to improve convenience (Barnabee et al., 2022). In general, results demonstrated that supportive healthcare providers improved AGYW experience and increased their adherence. On the contrary, unsupportive healthcare providers acted as a barrier to accessing PrEP. Research reported similar observation from healthcare providers (O'Malley et al., 2021; Skovdal et al., 2022). To avert negative attitudes from healthcare providers toward AGYW, special training on supporting this age category is essential.

The results of the current review outlined some negative experiences associated with PrEP pills. AGYW expressed preference for more discreet options like an injection. This would solve a few of their challenges including home storage, refusal from family and sexual partners and less frequent visits to the clinic (Irungu et al., 2021). A feminine appearance of the pills could improve the uptake and adherence (Maseko et al., 2020). Proper management of side-effects by adequate medical care, counseling and supportive treatment can improve the adherence among AGYW (Chebet et al., 2023; Duby et al., 2023; Jackson-Gibson et al., 2021).

Limitation

The wide range of PrEP initiatives in this context offers a breath of views around AGYW experiences and challenges related to this treatment. However, recruiting participants who were already been enrolled in different PrEP initiatives might not be reflective of AGYW in general. The purposive selection of study participants within the included studies might potentially be associated with bias to the generalizability of the findings. In sub-Saharan Africa, full autonomy of AGYW to voluntarily participate in studies is challenging. In the included qualitative studies, social desirability could have affected AGYW answers. Furthermore, interpretation of qualitative research findings could be associated with inaccuracies as different studies applied different approach to analysis.

Conclusion

The findings of the current review highlighted the detrimental effect of stigma about PrEP use on AGYW. It is essential to leverage the window of opportunity to alleviate the burden on AGYW in sub-Saharan Africa by intensive campaigns to normalize the use of PrEP. Widening the visibility of PrEP helps reducing stigma and enhances adherence. More research into enablers of AGYW to access and adhere to PrEP is essential.

Disclosure statement

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

Additional information

Funding

The author(s) reported there is no funding associated with the work featured in this article.