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Barriers to PrEP use and adherence among adolescent girls and young women in Eastern, Southern, and Western Africa: a scoping review

BMC Women's Health volume 24, Article number: 665 (2024) Cite this article

Abstract

Background

Adolescent girls and young women (AGYW) are disproportionately affected by HIV. Globally, in 2022, an estimated 4000 AGYW 15–24 were newly infected with HIV weekly, and nearly 78% of these infections occurred in sub-Saharan Africa. Oral Pre-Exposure Prophylaxis (PrEP) is a key HIV prevention option within an overall HIV combination prevention approach with an efficacy of over 90% when taken correctly. However, uptake of and adherence to PrEP remains low, particularly among AGYW. This scoping review aims to map available evidence on factors that limit PrEP use among AGYW in Eastern, Southern, and Western African countries to inform research, policy, and practice on delivery of PrEP. Our review identified factors that affect PrEP journey among AGYW along the HIV prevention cascade.

Methods

Guided by Arksey and O’Malley framework and using the PRISMA extension for scoping reviews, we searched the Web of Science, Global Health, and PubMed databases. Our review focused on oral PrEP, specifically papers reporting on barriers to PrEP experienced by AGYW, and peer-reviewed English-language articles published between 2012 and 2023.

Results

Of 1063 papers screened, 25 were included. Over half (60%) of the studies were qualitative; 72% were conducted in Kenya and South Africa. The barriers affecting motivation were, fear of side effects and pill burden, percieved low HIV risk, perceived stigma, PrEP use disapproval from parents and partners. PrEP access was limited by healthcare providers' stigma, isolated clinic setup, and lack of resources. Effective PrEP use was limited by a lack of parental or partner support, stigma, and lifestyle changes.

Conclusions

Adolescent girls and young women face multiple and often intersecting barriers to effective PrEP use with stigma being a factor cross-cutting all steps of the prevention cascade. Similarly, lack of social support, reflected through disapproval and judgmental attitudes and low HIV risk perception, also affected two steps of the prevention cascade. Our review identified gaps in available evidence, with most studies conducted in only two countries and few quantitative studies available. Improving PrEP uptake and adherence requires interventions that address barriers across the cascade, with a particular focus on stigma and social support.

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Background

Despite declines in HIV incidence, HIV remains a public health concern in many African countries [1, 2]. In particular, it is well established that compared to boys and men, adolescent girls and young women (AGYW) are disproportionately affected by HIV [1, 3,4,5,6,7,8,9,10,11]. Every week, 4,000 AGYW aged 15–24 acquire HIV globally (UNAIDS, 2022); nearly 78% of these AGYW reside in sub-Saharan Africa [3]. In 2022 in AGYW accounted for 77% of new HIV infections among young people aged 15–24 in sub-Saharan Africa [3]. Despite the availability of antiretroviral treatment, HIV-related illnesses remain a leading cause of mortality among AGYW in Africa [12].

According to UNAIDS 2022 report, the global target of reducing new infections to fewer than 500,000 by 2020 was not met due to inequalities in HIV programmes, including, for example, uneven distribution of resources [10]. In response, the 2021–2026 Global HIV Prevention Strategy highlighted inequalities as a key driver of the HIV response and emphasized the need to ensure that marginalized communities, including AGYW, are at the center of the HIV response [10]. The targets of the Global HIV Prevention Strategy include reducing the number of new HIV infections among AGYW to less than 50,000 [10].

Increased vulnerability to HIV among AGYW is driven by a complex interplay of various factors, including increased biological vulnerability, gender inequalities leading to power imbalances, gendered cultural norms around sexuality, and structural factors, such as poverty and lack of education [1, 4, 13, 14]. Unequal power dynamics rooted in gender inequities are major drivers of HIV among AGYW [15], as these dynamics place men in positions of physical, social and economic power leading AGYW to experience fear of resource withdrawal, abandonment, or limited power to negotiate condom use [16]. For these reasons, AGYW is a priority population for HIV prevention programs [5].

Among the range of HIV prevention strategies, such as condom use, regular HIV testing as a behavioral interventions, continuous community education, stigma reduction and structural interventions, oral pre-exposure prophylaxis (PrEP) has become a crucial biomedical prevention strategy to address HIV epidemics [17]. PrEP is an efficacious HIV prevention option that involves the use of antiretrovirals among HIV-negative individuals to reduce their risk of HIV acquisition [13, 18,19,20,21,22,23,24]. The US Food and Drug Administration (FDA) approved the use of oral PrEP in 2012; in 2015, the World Health Organization (WHO) recommended that people at substantial risk of HIV infection (i.e., population with an HIV incidence of > 3 per 100 person-years in the absence of PrEP or individuals with characteristics and behavior that could lead to HIV exposure), including AGYW, be offered oral PrEP as part of a package of comprehensive, combination HIV prevention services [3, 22, 25, 26].

A recent pooled review provided clear evidence that oral PrEP is effective in real-world settings among cisgender women [27]. According to the 2022 UNAIDS Global Update, nearly 1.6 million people received oral PrEP at least once in 2021, with Eastern and Southern Africa accounting for one million individuals and Western and Central Africa nearly 200,000 people on PrEP [10].

Since the introduction of PrEP significant success have been reported in terms of HIV prevention. A recent review of intervention aimed at promoting PrEP use among AGYW in HIV endemic settings, revealed that approaches have been implemented to address barriers to PrEP use [28]. These include mHealth, drug-level feedback, adherence counseling, peer groups, and PrEP decision-supports, demand creation, integrating PrEP and reproductive health services all of which show promise in supporting PrEP uptake among AGYW [28]. However, many of these interventions have not been able to definitively assess their effectiveness [28]. Reports from FHI 360 highlight that peer-led initiatives have significantly increased uptake of PrEP among high-risk population [29]. Similarly, UNAIDS reported a declines in the number of new HIV infections among AGYW in sub-Saharan Africa between 2010 and 2022 [1]. Despite the progress and increased uptake of PrEP use since 2016, progress has been slower than desired and there is also high rate of oral PrEP discontinuation among AGYW [29]. PrEP efficacy relies on the continued use and adherence [30]. Increased uptake and continued use, requires an understanding of barriers to PrEP use among AGYW.

This scoping review aims to identify barriers to PrEP uptake and adherence in the HIV prevention cascade [31, 32]. It has three steps that correspond to motivation for, access to, and capacity to effectively use PrEP. The HIV prevention cascade has been used to assist in the planning, implementation and monitoring of HIV prevention programs by identifying gaps in the steps required for improved delivery of HIV prevention methods [31, 32].

We chose the HIV prevention cascade as a guiding framework for this review because it is a practical approach for organizing data in line with prioritizing barriers for effective interventions that potentially could improve impact; in addition can be easily adapted to any population [31, 32]. Moreover, it will provide a comprehensive summary on key barriers which we believe ultimately, inform policy and practice on the improved delivery of PrEP to AGYW [31, 32].

Methods

This scoping review followed the steps proposed by Arksey and O’Malley (i.e., specifying the research question, identifying relevant literature, selecting studies, mapping the data, summarizing, synthesizing, and reporting the results) [33, 34]. We applied the preferred reporting items for systematic review and meta-analysis (PRISMA) extension for scoping reviews checklist as a framework for presenting the article selection process [35].

We used the PICo approach (population, phenomenon of interest, and context) to develop the review question [34, 36], what are key barriers to oral PrEP use (defined as uptake, continuation and adherence) among AGYW in Western, Eastern, and Southern Africa? Corresponding to step 1 of the Arksey and O’Malley framework [33]. Our population of interest was AGYW aged 15–24; the phenomenon of interest was barriers across three steps of the HIV prevention cascade, with a focus on oral PrEP (i.e., motivation to use PrEP, access to PrEP, and capacity to use PrEP effectively), while the context was the countries in Southern, Eastern, and Western Africa, where the incidence of HIV among AGYW countries is the highest globally (Table 1).

Table 1 Description of selection criteria
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Identification of relevant studies

In step 2, we searched three databases, Web of Science, PubMed, and Global Health, to identify published literature. This search was conducted from May 2 to May 15, 2023. We used four core concepts in formulating the search strategy for each database: HIV, PrEP, AGYW, and Southern, Eastern, and Western African countries, an additional table file shows this in detail (see Additional file 1). Additional articles were identified through manual searches of the references of the studies considered eligible for inclusion.

Study selection

In step 3, we included articles based on specific inclusion and exclusion criteria (Table 1). The inclusion criteria were: studies that explored barriers to oral PrEP use, published in peer-reviewed journals and written in English, studies published from 2012 onward that included AGYW aged 15–24 years or disaggregated data for AGYW or studies that were about perceived barriers experienced by AGYW, regardless of the study population [37].

We excluded studies that were not peer-reviewed (gray literature, conference proceedings, or notes, commentaries/opinion pieces), did not include AGYW as their priority population, and focused only on AGYW from specific, distinct populations (i.e., sex workers, transgender women, pregnant women) and studies that did not specify the age of AGYW included in the study (Table 1). The selection criteria were developed, discussed, and refined within the review team. We applied these criteria during the search strategy as described above.

The search and article review was conducted by MA, with a random selection of 10% of studies reviewed by BH for consistency at the abstract review stage. At the full-text stage, CN reviewed a random selection of 10% of the articles to determine whether the articles were eligible for full-text review. Discrepancies were resolved through discussion between the reviewers based on consensus.

Charting the data, summarizing, and reporting

We used a standardized data extraction chart in Excel to extract data from the eligible studies (step 4), including the authors, publication date, aim of the study, population group, study design and data collection method, setting, and key findings (Tables 3 and 4). For quantitative results, we extracted data on factors associated with PrEP use and/or adherence that were considered statistically significant at the p ≤ 0.05 level. As indicated, we used the HIV prevention cascade as a framework to synthesize and summarize the data from selected studies (step 5) [31]. It has three steps that correspond to motivation for, access to, and capacity to effectively use PrEP. The HIV prevention cascade has been used to assist in the planning, implementation and monitoring of HIV prevention programs by identifying gaps in the steps required for improved delivery of HIV prevention methods [31, 32].

PrEP uptake refers to receiving and initiating oral PrEP, the PrEP continuation phase refers to persistent participation in an oral PrEP program (i.e. continuing to obtain PrEP refills and use PrEP following initiation), while adherence refers to the consistency with which a person takes their PrEP medication as prescribed, thus ensuring the effectiveness of PrEP in HIV prevention [30, 38]. Using the HIV prevention cascade, we synthesize the evidence into motivation to initiate PrEP, factors affecting access to PrEP services, and those influencing AGYW’s ability to continue with and adhere to PrEP. We opted to use the prevention cascade as a framework because it is a practical approach for organizing data in line with prioritizing barriers for effective interventions that potentially could improve impact; in addition can be easily adapted to any population [31, 32].

Results

Characteristics of the included articles

We identified 1920 studies, 1911 through database searches, and nine through the reference lists of included studies (Fig. 1). After the removal of duplicates, 1063 articles were screened, yielding 53 articles for full-text review. Of these, 28 were excluded; over half (n = 17, 68%) were excluded because the studies did not explore barriers to PrEP use among AGYW; seven were excluded either because the study population (type and/or age) did not meet our inclusion criteria or disaggregated data for our population of interest were unavailable (Fig. 2).

Fig. 1
figure 1

PRISMA diagram illustrating the article review process

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Fig. 2
figure 2

Summary of key barriers affecting motivation, access, and capacity for oral PrEP effective use among AGYW

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Of the 25 articles included, 15 (60%) were qualitative, six (24%) were quantitative, and four were mixed-method studies (Table 2). The majority of studies (n = 18; 72%) were published in 2022–2023 and conducted in two countries, namely Kenya (n = 5) and South Africa (n = 13) (Table 2).

Table 2 Characteristics of studies eligible for inclusion in the scoping review (n = 25)
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We summarized key findings from all studies in line with three steps of the HIV prevention cascade: motivation, access, and capacity to effectively use PrEP (Tables 3 and 4; Fig. 2).

Table 3 Findings from qualitative (n = 15) and mixed method studies (n = 4) on PrEP use (n = 19)
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Factors affecting motivation to use PrEP services

Twelve studies (48%) described barriers that impacted AGYW motivation to consider using PrEP (Fig. 2), which included PrEP awareness, self-perceived vulnerability to HIV, perceived HIV and sexuality-related stigma, medication characteristics (such as side effects, pill burden, daily use), perceived disapproval or judgment of PrEP use from parents, partners, and the broader community [40, 43, 45, 46, 50, 51, 53,54,55,56, 58, 59]. Other factors affecting motivation were linked to having a preference for other HIV prevention methods (i.e., condoms, injectable PrEP) [55, 58] (Tables 3 and 4).

Misinformation about PrEP, lack of understanding about the difference between PrEP and HIV treatment, and myths surrounding PrEP were mentioned by four studies as affecting PrEP initiation [40, 50, 51, 56]. Myths included the belief that using PrEP would lead to birth defects and infertility and that PrEP was a strategy used by governments to prevent expired antiretrovirals from being wasted [56, 57]. Medication attributes, such as pill burden and side effects, were reported in four studies as limiting motivation to use PrEP [40, 56, 58, 59]. A quantitative survey conducted in 2020 in Kenya among AGYW attending family planning (FP) clinics revealed that among AGYW who had high HIV risk (111/359 = 24%), pill burden (51%) was a key reason why AGYW declined an offer of PrEP [59]. Similarly, a study conducted between November 2020 and March 2021 in South Africa among PrEP programme implementers reported that providers perceived daily pill taking and fear of side effects as discouraging AGYW from initiating PrEP [40].

Table 4 Findings from quantitative studies that reported factors affecting PrEP use (n=6)
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Two of the quantitative studies reported that self-perceived HIV risk also affected motivation to use PrEP service [58, 59]. A quantitative study conducted among 470 AGYW in Kenya in 2020 reported that AGYW with high self-perceived risk of HIV acquisition were more likely to initiate PrEP than AGYW with low perceived risk (PR:1.65, 95% CI, 1.41, 1.99, p < 0.001) [59]. Similarly, a cohort study conducted between January 2019 and December 2020 in Uganda, among AGYW accessing a clinic providing sexual and reproductive health, including HIV, services to women vulnerable to HIV found that 33.7% of AGYW declined PrEP offer due to low self-perceived [58].

Nine studies reported that anticipated stigma related to sexuality and HIV also affected motivation to use PrEP, as did fear of judgment or disapproval of PrEP use due to gender norms related to the sexuality of AGYW [40, 43, 50, 51, 53,54,55, 58, 64]. A qualitative study conducted in 2017 in Eswatini found that AGYW who did not have a child feared the stigma of starting and continuing PrEP [54]. In South Africa, a qualitative study conducted between November 2020 and March 2021, which aimed to explore the experience of delivering PrEP to AGYW, found that providers reported stigma, disapproval, and resistance from family and community as delaying the PrEP uptake or leading AGYW to decline an offer of PrEP [40]. Similar findings were reported in a quantitative study conducted between January 2019 to and December 2020 in Uganda where 2.2% of AGYW declined an offer of PrEP due to fear of stigma.

Three studies reported that norms related to sexuality of AGYW limited PrEP use [43, 46, 56]. In a study on community perceptions of AGYW starting PrEP conducted between September 2018 and February 2019 in Kenya, the community generally approved PrEP use for specific populations, including sero-discordant couples and sex workers [56]. However, they were less approving of AGYW’s use of PrEP, with PrEP use perceived as promoting promiscuity [56]. A qualitative study conducted in 2019 in urban South Africa reported that negative community perceptions such as judgment and disapproval influenced the decision of AGYW to use PrEP [43]. In a 2019 qualitative study among randomly selected AGYW residing in rural and urban settings characterized by high levels of poverty and HIV in Zimbabwe [46], participants raised concerns about how PrEP was associated with sex work and thus feared being labeled “loose women” if they sought PrEP services [46].

Factors affecting access to PrEP services

Nine (36%) studies [40, 43, 44, 46, 50, 52, 55,56,57] (Tables 3 and 4) reported barriers related to access to PrEP services as affecting use, which included health service providers’ negative attitudes toward AGYW’s sexuality; PrEP and other supply stockouts; human resource shortages; clinic setup (isolated HIV clinics); and long waiting times in the clinic [40, 43, 44, 46, 50, 52, 55,56,57].

Three studies reported health care providers' negative attitudes (perceived as overworked or not youth-friendly) as affecting access to PrEP services [46, 50, 56]. In a mixed-method study conducted between 2018 and 2020 in South Africa 40.5% (n = 182/449) of AGYW experienced stigma from clinical staff, and 75% (n = 98/130) of clinical and nonclinical staff believed that providing PrEP would lead to sexual risk-taking among AGYW [44]. A study conducted in October 2017 in Kenya, South Africa, and Zimbabwe identified negative attitudes toward AGYW sexuality as preventing providers from offering PrEP, particularly to girls aged < 19 years, as reported by a nurse: “They are too young for sex” and “Sex could wait” [50]. Similarly, in a study conducted in in South Africa in 2017, an employee of the Department of Health explained that “…[giving adolescents PrEP] will mean setting them free to engage in unprotected sexual intercourse…” [57].

Other access-related barriers included a shortage of staff and supply stockouts [40, 52, 57]. In six qualitative studies clinic schedules (visit hours) and screening procedures to initiate PrEP, perceived lack of confidentiality in clinics, and long waiting times were reported as limiting access to PrEP [43, 44, 46, 51, 56, 57]. A study conducted between September 2018 and February 2019 in Uganda, South Africa, and Zimbabwe identified the cost of PrEP as a reason for limited access [55]. In a study conducted between November 2020 and March 2021 in South Africa among programme implementers on PrEP, the need to request parents' or guardians' approval (consent) for adolescents to be able to initiate PrEP acted as a barrier to accessing PrEP services [40].

Barriers to effective PrEP use

Eighteen (72%, n = 18) studies described barriers relevant to the third step of the HIV prevention cascade, effective PrEP use [39,40,41,42, 47,48,49,50,51,52,53,54,55,56, 60,61,62,63] (Tables 3 and 4). Ten of the studies reported a lack of family, partner, and social support as a barrier to PrEP continuation and adherence [39, 41, 46,47,48,49, 56, 62, 65]. In a qualitative study conducted between 2017 and 2018 among AGYW recruited through a youth-friendly clinic in a peri-urban settlement in South Africa, negative consequences after the disclosure of PrEP use, including violence or being told to stop using oral PrEP, affected continued PrEP use [48]. Similarly, in a qualitative study conducted in 2020 in South Africa, lack of social support and fear of stigma were reported as challenging adherence to PrEP for some AGYW [39].

Six studies reported stigma related to sexuality and HIV as an important barrier to effective PrEP use [39, 42, 51, 52, 56, 58]. Similarly, a qualitative study conducted between 2017 and 2018 in South Africa reported that AGYWs stopped taking PrEP, as taking PrEP conflicts with traditional beliefs [49].

Similar to motivating PrEP use, five studies described medication attributes (i.e. side effects, pill burden, size of the pill, forgetting to take pills daily) as affecting effective PrEP use [41, 42, 49, 55, 66]. A quantitative study conducted in Kenya and two mixed-method studies in South Africa reported that stock-outs and PrEP follow-up care procedures, including the required frequency of clinic visits, retesting for HIV, and adherence monitoring, affected the capacity of AGYW to effectively use PrEP [41, 42, 61].

Lifestyle changes, including travel for work or school, marriage, and changes in the social support system, were reported in five of the studies as limiting effective PrEP use [49, 51, 61, 62, 65]. Similar to motivation to use PrEP, two studies identified low HIV risk perception as a challenge to PrEP continuation and adherence, which was usually linked to a change in partnership and learning of a partner’s HIV-negative status [61, 62].

Two studies reported that age was also associated with the capacity of AGYW to effectively use PrEP, with adolescents less likely to continue to use PrEP [61, 62]. A retrospective cohort conducted between 2016 and 2018 in Kenya among AGYW recruited through the DREAMS programme reported that PrEP discontinuation was higher among girls aged < 18 years relative to young women [62]. Similarly, a cohort of AGYW in Kenya reported that women aged > 22 years were more likely to continue to use PrEP 3 to 4 months post-enrollment than were those aged < 22 years (OR 2.7 [95% CI, 1.43, 5.11], p = 0.002]) [61]

In a randomized controlled trial in South Africa and Zimbabwe that aimed to assess the effect of time-varying depressive-symptoms on PrEP adherence, highlighted that AGYW with persistent elevated depressive symptoms were less likely to have detectable tenofovir-diphosphate levels (TFV-DP) in dried blood spots (a marker of PrEP adherence) after 52 weeks compared to those with no/mild depressive symptoms [63]. A quantitative study conducted between October 2016 and 2018 in South Africa explored the association between intimate partner violence (IPV) and PrEP adherence among AGYW at three and six months post-initiation [60]. The study found that, at month three after the initiation of PrEP, the relationship between IPV and PrEP adherence depends on age. Under aged 21 years, 12% who had experienced IPV persisted with PrEP until three months post-initiation, compared to 26% of AGYW who reported no IPV. Conversely, among young women aged > 21 years, PrEP continuation at three months post-initiation was 34% among those experiencing IPV compared to 16% among those not experiencing IPV [60].

Discussion

This scoping review mapped the available evidence on barriers to oral PrEP use among AGYW to the HIV prevention cascade. Our review found barriers from individual- through structural-level and factors that cross-cut AGYW’s motivation to initiate PrEP, ability to access PrEP and capacity to continue with and adhere to PrEP, particularly stigma and gendered norms related to sexuality. For motivation to use PrEP, the most commonly reported barriers included lack of awareness and misinformation about PrEP, fear of pill burden and side effects, perceived PrEP use disapproval from parents, sexual partners or community, low HIV risk perception and perceived stigma related to sexuality and HIV. Access-related barriers included healthcare providers' stigma and negative attitudes toward AGYW’s use of PrEP, staff shortages, PrEP stockouts, and lack of confidentiality in the clinic and/or isolated clinic set-up. The capacity to effectively use PrEP was affected by a lack of partners, parental, family and community support, low HIV risk perception, pill attributes (i.e. side effects, pill burden, and size), stigma, and lifestyle changes.

We used the HIV prevention cascade as a framework to guide our review of the literature to systematically assess and group the identified barriers [31]. However, some barriers affected multiple steps in the cascade. Stigma, including anticipated stigma, cut across all three pillars, affecting motivation (i.e., sexuality and HIV-related stigma), access (i.e., discrete/isolated clinic setup, fear of being judged by service providers i.e., a belief that PrEP use could cause immoral sexual behavior through risk disinhibition), and effective use (i.e., fear of being seen as HIV positive when taking pills) [67].

HIV-related stigma has been commonly cited as limiting motivation and effective use of PrEP among other populations; in a scoping review of North American studies exploring HIV-related stigma and its effects on PrEP use among men who have sex with men and transgender women [13, 49, 68]. Similarly, gendered cultural norms related to sexuality in AGYW limited motivation and access to and continued use of PrEP, with AGYW anticipating being considered a “loose woman” and healthcare providers refusing to offer PrEP to AGYW. This particularly affected adolescent girls, who saw themselves being denied PrEP due to cultural norms related to sexuality despite being sexually active [51, 69, 70]. This finding highlights the intersectionality of age and stigma, where cultural and gendered expectations intersect to disproportionately affect AGYW motivation, access and effective use of PrEP. Similarly, a more recent qualitative study (2023) in South Africa among individuals with AGYW also reported how anticipated stigma contributed to nonadherence and missing doses [9].

In addition to stigma, health service providers’ common belief that providing PrEP would encourage riskier and more frequent sex among AGYW limited access to PrEP; this belief has been reported to impact the provision of other sexual and reproductive health services, such as FP services [53, 57, 67, 71]. Thus, a policy focus on, service providers’ training would facilitate unbiased adolescent-provider dialogues. In addition, it would provide an opportunity for strengthening the provision of adolescent- and youth-friendly services [72]. Within such approach, a South African study stressed that reinforcing positive message to health workers would help them provide PrEP service to AGYW [53]. In this study, the health workers were said to be eager to support the introduction of PrEP if they were informed that it was a way of protecting the ‘future’ of the county [53]. It was also believed that reinforcing positive messages to health workers would help them to provide PrEP for AGYW [53]. As these studies have shown, strategies are needed to create an environment in which the sexual and reproductive health of AGYW can be improved, creating positive social and sexual norms to promote safer sexual behaviors and access to services [69]. Specifically, promoting PrEP as a health promotion tool for both partners rather than a risk reduction tool has been a key recommendation [40, 56, 73]. As demonstrated in the field of FP regarding contraceptive choices, it will be crucial to offer AGYW different PrEP choices in a non judgmental environment. This approach can reduce the frequency of clinic visits and enhance discretion, particularly if long-term PrEP options are made available, and if such interventions are to be effective [72].

Low self-perceived risk of HIV acquisition is a barrier for motivation to initiate PrEP and, for those who accessed PrEP, to effective use. This finding is not surprising, given that studies have consistently shown that AGYW risk perception does not always align with their sexual behaviors [74]. AGYW might engage in high-risk behavior such as transactional sex or having multiple partner, still perceive themselves as having a low risk of HIV infection [74]. One of the factors that influence AGYW to engage in a risky behavior are economic hardship, leading them to engage in to transactional sex, where sex is exchange for money or gifts [66, 74]. This increase their exposure to HIV, as many of the sexual partners are older and more sexually experienced and the gender and power imbalance often limits AGYW ability to negotiate condom use [74]. However, PrEP offers a female-controlled HIV prevention method that can address intersecting barriers such as the age-gendered power imbalances, by providing AGYW the opportunity to decide on its use without the need for prior negotiation with sexual partner [75]. Making sure AGYW and their communities are aware of their risk through education and campaigns and increasing awareness on PrEP benefits are recommended [66, 76]. PrEP access was also affected by stock-outs and staff shortages, hence support for drug supply and the allocation of enough manpower should be incorporated to sustain PrEP provision [72].

Our findings highlight that a lack of social support, including support from partners and parents, and disapproval of PrEP use, whether perceived or experienced, lead to nondisclosure of PrEP use. This reduced effective use. In African countries, communicating with children about sexual matters is taboo, making it difficult for AGYW HIV-related issues with, and thus disclosing, PrEP use to, their parents’ guardians [77]. A study conducted in Eswatini and included in our review showed how AGYW struggled with whether they needed to involve their partner or parents in their decision to use PrEP [54]. One South African study that explored the dimensions of PrEP use stigma among AGYW reported that disclosing PrEP decreased the stigma associated with PrEP use [78]. Another South African study included in our review suggested that PrEP awareness among parents was low and that strategies to disseminate information, e.g., through brochures, TV, and radio, were needed to explain the purpose of PrEP to parents, which in turn could help them support their daughters to use PrEP [48]. Thus, intergenerational HIV prevention interventions should aim at improving good communication between children and parents, while at the dyadic level, fostering positive and healthy relationships with partners to support AGYW in PrEP decision-making [40, 79].

It is important to emphasize that AGYW are not a homogeneous group, and given the age span included in our review, are at different stages of physical, social, and cognitive development; hence, they experience unique barriers to PrEP use as their capacity evolves dynamically with time and social context. For example, our review revealed that the effect of experienced IPV differed by age and that for young women, lifestyle changes such as travel and marriage affected effective PrEP use [51, 61]. Similar to delivering PrEP in different settings, young women need access to different HIV prevention methods, including alternative PrEP formulations [55, 58]. Preference for injectable PrEP has been reported by female sex workers in Kenya, as a single injection provides protection for a prolonged period, and this formulation does not require one to remember to take pills daily [80]. Given the heterogeneity of AGYW and the variety of barriers, a one-size-fits-all approach will not be effective in achieving global-level PrEP coverage goals among AGYW. Some studies have investigated promising and innovative means of PrEP promotion and delivery. Peer-led and community-based delivery of sexual and reproductive health services is an innovative approach to reducing barriers and meeting AGYW where they are [81]. In South Africa providing same-day community-based PrEP initiation and refill services was found to be highly acceptable [82]. Community-based delivery using comprehensive, adolescent- and youth-friendly approaches, is highly needed for AGYW living in communities with a high HIV burden [83]. Integrating PrEP into existing Sexual and Reproductive Health (SRH) services would create opportunities to go beyond HIV prevention and improve uptake of other SRH services such as averting unplanned pregnancies, identifying and managing STIs, increasing HIV testing and promoting dual protection and condom use [72].

Although this review focused on oral PrEP, future research should explore the acceptability, effectiveness, barriers and access related to alternative PrEP formulations, such as long-acting injectables of the Dapivirine vaginal ring, among AGYW in different cultural settings. Such studies could help address the barriers identified in this review that are associated with daily oral PrEP, such as pill burden, anticipated side effects and adherence challenges, potential offering AGYW more suitable options that align with their lifestyles. Additionally, research on digital health interventions (e.g., mobile apps, SMS reminder, telehealth support) could provide insight into how and for whom digital tools might help overcome barriers to PrEP adherence by offering discrete reminders, education, and connection to support networks. These interventions may prove especially valuable for AGYW who experience stigma or lack a supportive environment.

Our review has several strengths: we reviewed a large number of articles, and three reviewers were involved in the screening and data charting process. However, we included only studies written in the English language, which might have led to the omission of evidence from West African countries in particular. We acknowledge that excluding non-English studies may result in an underrepresentation of region-specific barriers to PrEP uptake and adherence. Additionally, the review focused on oral PrEP only, including other HIV prevention methods, i.e., injectable PrEP, would have provided a more comprehensive understanding of gaps in the HIV prevention cascade for PrEP, regardless of the formulation. However, as the majority of studies were published in 2022 or 2023, we anticipate that we would have identified few studies on the dapivirine vaginal ring or injectable PrEP. Furthermore, many of the identified barriers are not limited to the formulation of PrEP but rather are reflective of the context in which AGYW attempt to meet their HIV prevention needs. Nevertheless, focusing only on oral PrEP may limit the generalizability of our findings to other forms of PrEP, potentially introducing biases that should be considered when interpreting the results.

Conclusion

This scoping review identified barriers to PrEP use among AGYW along the HIV prevention cascade. Our findings illustrate that AGYW face multiple barriers to effective PrEP use, with HIV and sexuality related stigma as an important cross-cutting issue that affected all steps of the HIV prevention cascade. Although our review focused on oral PrEP, some of these barriers, such as stigma, social norms, side effects, and availability might also affect the use of future PrEP formulations. Notably, the majority of studies included in our review were conducted in only two countries, and few quantitative studies were available. More research in other settings involving larger numbers of AGYW are needed for context-specific evidence. Despite this gap, our review highlights recommendations that can enhance social support, reduce stigma, and increase community-level awareness of how PrEP can promote a healthy lifestyle. Health systems must also be equipped with sufficient resources, particularly if PrEP demand increases. Furthermore, service providers should understand the personal and social challenges that AGYW experiences and provide a supportive environment in which to offer PrEP services.

Data availability

All data generated or analyzed in the scoping review is included in the published article and on additional file.

References

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Acknowledgements

Our deepest gratitude goes to Jef Vanhamel, who was instrumental in the literature search and conceptualization process.

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    Metasebia Admassu, Christiana Nöstlinger & Bernadette Hensen

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BH and MA conceptualized the review, and BA supervised the review process. MA extracted all the data from the database, and all the authors participated in the review process. The first draft of the manuscript was written by MA, BH, and CN, who were involved in continuous review and editing of the manuscript. All authors reviewed and approved the final version of the manuscript.

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Admassu, M., Nöstlinger, C. & Hensen, B. Barriers to PrEP use and adherence among adolescent girls and young women in Eastern, Southern, and Western Africa: a scoping review. BMC Women's Health 24, 665 (2024). https://doiorg.publicaciones.saludcastillayleon.es/10.1186/s12905-024-03516-y

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