Facilitators and Barriers to Hiv Pre-Exposure Prophylaxis Adherence and Retention Among Young Men Who have Sex With Men: A Meta-Ethnographic Scoping Review

Abstract

Retention and adherence to daily oral pre-exposure prophylaxis (PrEP) are critical for effective HIV prevention; however, YMSM exhibit lower rates of both compared to other populations. This is important because young men who have sex with men (YMSM) are at higher risk for HIV, and understanding their challenges can help create better support and interventions. This scoping review synthesizes evidence on the facilitators and barriers to HIV PrEP retention and adherence among YMSM, focusing on individuals aged 10 to 29 years. The review adheres to PRISMA-ScR and eMERGe guidelines, examining 14 studies involving 3,178 participants. It emphasizes the complex interactions of individual, interpersonal, community, and societal factors influencing PrEP adherence and retention. Key facilitators include psychological strategies, supportive health systems, and supportive social networks. Conversely, significant barriers encompass financial burdens, interpersonal stigma, and behavioral factors. The review highlights the critical role of tailored, multi-level interventions and the need for healthcare provider training in youth-specific approaches to care. This work contributes to a nuanced understanding of PrEP retention among YMSM, offering insights crucial for designing effective public health strategies to enhance prevention-effective PrEP utilization in this high-risk population.

Supplementary Information

The online version contains supplementary material available at 10.1007/s10461-024-04582-x.

Introduction

Since being identified in the 1980s, HIV has been a significant global public health challenge, especially among men who have sex with men (MSM), who have been disproportionately affected by this disease [1–3]. In 2020, approximately 25% of new global HIV infections were among MSM [4]. In numerous contexts, the highest rates of HIV incidence are observed in younger MSM populations, who was widely defined as 24 years old or younger [5, 6]. One study in the United States (US) demonstrated that MSM aged 18–24 years face a 2.5 times higher risk of HIV acquisition compared to their older counterparts [7]. In Thailand, the incidence of HIV among MSM aged 18–21 years was reported at 8.8 per 100 person-years, versus 5.9 per 100 person-years across all MSM between 2006 and 2012 [8]. In the UK, the highest increases in new HIV diagnoses were among young MSM aged 15–24 years from 2003 to 2012 [9]. Without prompt public health response and proper intervention, the number of HIV infections among YMSM will likely continue to grow.

Oral pre-exposure prophylaxis (PrEP) is an HIV prevention method that reduces the risk of HIV acquisition through daily use or a 2 + 1 + 1 schedule, so-called event-driven PrEP, of an anti-HIV medication (tenofovir disoproxil fumarate/emtricitabine) [10–12]. The effectiveness of PrEP depends on both retention in PrEP care and adherence to the medication as prescribed [13]. High retention and adherence rates are associated with a significant reduction in HIV incidence, highlighting the importance of both factors in maximizing the preventive potential of PrEP. Studies have shown that individuals with suboptimal retention and adherence are more likely to acquire HIV than those who are retained in PrEP care and adherent to PrEP [14–16]. Because the daily oral PrEP was the first widely available regimen and globally used, our scoping review focus on daily oral PrEP. Additionally, different PrEP regimens might introduce different facilitators and barriers (e.g., injection-related pain or fear might be a barrier of CAB-LA but would not affect daily oral PrEP).

While PrEP is an HIV preventive measure with proven effectiveness that can suppress the growing HIV epidemic among MSM, retention and adherence to PrEP among MSM are influenced by several factors. In addition to general obstacles, such as cost, stigma, relationship conflicts, and concern about side effects, YMSM face a lack of insurance, fear of disclosing their true sexual identity to parents, and financial instability [17]. Fear of being labeled as promiscuous or HIV-positive, concerns about confidentiality, and lack of knowledge about PrEP have also been identified as potential barriers to PrEP retention for YMSM [13]. Conversely, effective facilitators for PrEP adherence include an established daily routine, the use of PrEP reminders, and social support [18].

While the barriers and facilitators for PrEP adherence and retention among the MSM community have been extensively studied, available evidence on this topic among YMSM has yet to be synthesized. Current reviews have not shed light on the differences between MSM across age groups, and are thus unable to put forward specific recommendations for YMSM [13, 17]. YMSM are ofent highly active on dating apps or social platform where they find their male sex partners and they have limited health literacy [19, 20]. Given the rising prevalence of HIV among YMSM as well as the distinct characteristics of this population, it is of great importance to understand the factors and needs that may impact their ability to use and adhere to PrEP successfully. Therefore, we conducted a scoping review with a meta-synthesis of qualitative findings to synthesize barriers and facilitators related to PrEP retention and adherence among YMSM. By employing meta-synthesis as a means to consolidate and interpret findings from a spectrum of qualitative research on PrEP use among YMSM, we not only aim to provide a comprehensive overview of the existing literature but also to generate new insights that transcend the scope of individual studies, thereby advancing our understanding and informing targeted interventions.

Methods

This scoping review adheres to the Preferred Reporting Items for Systematic Review and Meta-Analyses-Scoping Review extension (PRISMA-ScR), employing the methodology proposed by Arksey and O’Malley [21–23]. The eMERGe reporting guidance was also used to present the meta-ethnography [24].

Selection Criteria and Search Strategy

This scoping review includes original research articles that use mixed methods or qualitative study designs. We consider articles published in English from January 2010 to March 2023. We specifically focus on studies that clearly define retention or adherence as the primary outcomes in young men who have sex with men (YMSM). Additionally, the selected studies must identify barriers and facilitators influencing PrEP adherence and retention. A key criterion was that at least 50% of study participants were aged 10 to 29 years. For articles that neither specified the number of YMSM nor exclusively focused on this population, selection still proceeded if they provided specific characteristics pertaining to the younger group. We also excluded studies that focused on outcomes related to PrEP uptake, awareness, and initiation. We confined our review to full-text articles from peer-reviewed journals.

The three electronic databases used were PubMed, Embase, and Web of Science. Key words were built around the following themes: PrEP, Retention, Adherence, Barrier, Facilitator, MSM. The search strategy and keywords employed are detailed in a supplementary file (S1).

To remove duplicate articles, we utilized STATA statistical software to filter based on unique identifiers, including digital object identifier (DOI), PubMed unique identifier, and full title [25]. Two researchers (KDV and HTP) independently screened article titles and abstracts using the Rayyan.ai platform [26]. The titles and abstracts were evaluated against the predefined criteria. Two researchers (KDV and HTP) independently reviewed and screened the full-text articles. The researchers made separate decisions and then compared their results to identify any discrepancies. The inconsistencies in the screening results were resolved through discussions involving a third researcher, and their inclusion was collaboratively decided for the scoping review.

Data Extraction

Data was extracted from included studies by one researcher (KDV). Key information from each eligible study was methodically extracted and organized into a Microsoft Excel template. This included the author’s name, publication date, study details (name, title, objectives), demographic information (target population, sample size, country, percentage of YMSM participants, mean/median age), methodological aspects (time, study design, data collection methods), and qualitative outcomes (barriers and facilitators, author’s interpretation of each factor, quote illustrations from participants). A second investigator reviewed and extracted data from about 10% of the articles to cross-check with the initial extraction to ensure accuracy and completeness. Any discrepancies in this stage were resolved by discussion with a senior researcher or contact with article authors when necessary.

Qualitative Synthesis

We synthesized results from qualitative studies using the social-ecological model and a meta-ethnographic approach.

We charted the data on determinants of PrEP adherence and retention to organize our findings visually and to categorize our findings by the levels of the Social-Ecological Model, which recognizes that multiple layers of embedded factors operate across and between levels to influence behavior including HIV prevention behaviors [27, 28]. We categorized the findings (including barriers and facilitators, author’s interpretation of each factor, quote illustrations from participants) as being either at the individual, interpersonal, social, community, or structural/ societal level.

We used Noblit and Hare’s meta-ethnographic approach to categorize barriers and facilitators into three levels of thematic significance [29]. This involved adhering to their seven-phase process for conducting a meta-ethnography: Phase 1 involved identifying a research interest and assessing the suitability of qualitative synthesis for the inquiry; Phase 2 entailed determining studies’ relevance to the research question; Phase 3 consisted of reading and re-reading the included studies, along with data extraction; Phase 4 focused on establishing relationships among the studies; Phase 5 dealt with translating the studies into each other, in other words, examining the analogy of the studies and putting them in context with the research question; Phase 6 was about synthesizing these translations; and Phase 7 involved presenting the findings of the synthesis.

We applied a lines-of-argument approach for the meta-synthesis and organized the findings into themes. Two reviewers extracted data from the selected papers, which were then organized by themes and compiled into a construct worksheet. To develop the constructs, we followed France’s framework of first-, second-, and third-order interpretations [24]. First-order interpretations were the raw data or participant quotes from the papers, which were categorized into second- and third-order interpretations for further analysis [24]. Second-order interpretations reflected the original authors’ analysis of their data, while third-order interpretations were the thematic categories we developed based on our own analysis. The construct worksheet was structured around these three layers of interpretation: participants’ perspectives (first-order), the perspectives of the original paper authors (second-order), and the perspectives of our research team (third-order).

Results

Search Results and Characteristics of Studies

Our initial search yielded 1711 records, with 760 duplicates subsequently removed. The screening of 951 remaining manuscripts, based on titles and abstracts, led to the exclusion of 796 abstract records that did not align with the inclusion criteria. The primary reasons for exclusion during the abstract screening phase were: participants are not YMSM (n = 241), observational study design (n = 86), and uptake and awareness of PrEP (n = 423). Further screening of 155 full texts resulted in the removal of 129 studies due to observational study design (n = 44), conference articles and opinion pieces (n = 15), irrelevant results (n = 67), and studies does not specifically address YMSM as a subgroup, and over 50% of the population are not YMSM (n = 15). Finally, 14 manuscripts were included in the final analysis (Fig. 1).

Fig. 1.

PRISMA flow-chart of studies selection and reasons for exclusion

Table 1 shows that 9 out of 14 included studies explicitly delineated the YMSM group, while the remaining studies featured populations in which over 50% were aged 10 to 29 years. These studies were predominantly conducted in the United States (8 studies), with additional representation from various countries such as Kenya (2) and Mexico (2) (among a few others). Notably, there was a scarcity of studies on Asian populations, with only one study identified (from Thailand). Data collection methods included computer-assisted self-interviews, semi-structured interviews, and focus group discussions (Table 1).

Table 1.

Characteristics of selected studies

First author, Publication year	Participants, Age range	Sample size	%YMSM	Time	Country	Study design/ Data collection method	Qualitative analysis method
Arnold, 2017 [34]	YMSM, 18–29	32	100%	2016	US	Qualitative, SSI	Inductive content analysis
Whitfield, 2018 [40]	MSM, 24–38	1,071	NM	2014–2017	US	Mixed methods, CASI, unstructured interview	Thematic analysis
Wood, 2019 [18]	YMSM/TGW, 15–24	35	100%	2019	US	Mixed-Method, SSI, CASI	Content analysis
Chemnasiri, 2019 [55]	MSM, 21–50	179	NM	2013–2014	Thailand	Mixed-Method, FGD	Grounded theory and content analysis
Wood, 2020 [56]	YM/TWSM, 15–24	50	100%	NM	US	Mixed-Method, CASI, SSI	Thematic analysis
Kimani, 2021 [32]	TGW and MSM, 18	53	78.6%	2018	Kenya	Mixed-Method, SSI	Thematic analysis
Owens, 2022 [33]	Adolescent SMM, 13–18	1433	100%	2018–2020	US, Puerto Rico	Mixed-Method, CASI	Content analysis
Rogers, 2022 [38]	MSM, 20–69	33	NM	2018–2020	US	Qualitative, SSI	Deductive and inductive content analysis
Santiago, 2023 [12]	MSM and TGW, 18	24	58%	2022	Mexico	Qualitative, SSI	Content analysis
Santos, 2023 [30]	YGBMSM, 16–20	32	100%	2019–2021	Brazil	Qualitative, SSI	Thematic analysis
Graham, 2023 [45]	GBMSM, 24–30	158	100%	2015–2017	Kenya	Mixed-Method, SSI, CASI	Thematic analysis
Wells, 2023 [35]	YMSM, 19–29	27	100%	2018	Mexico	Qualitative, SSI	Content analysis
McKetchnie, 2023 [36]	YMSM, 15–24	32	100%	2022	US	Qualitative, SSI	Thematic analysis
Hall, 2023[31]	YMSM, 18–29	19	100%	2020	US	Qualitative, SSI	Thematic analysis

NM: Not mentioned; CASI: computer-assisted self-interview; SSI: semi-structured interviews; FGD: focus group discussion; US: United States; TGW: Transgender women; YGBMSM: Young gay, bisexual and other men who have sex with men; YM/TWSM: young men and transgender women who have sex with men; SMM: Sexual minority men

Facilitators

We have identified and synthesized facilitators into 9 key themes including high PrEP awareness, psychological strategies, technical/instrumental strategies, risk perception, supportive health systems, social networks, social support, the support of the LGBTQ + community, and community norms. These facilitators are further organized into four levels according to the social-ecological model (Fig. 2). The specifics pertaining to these key themes are delineated in Table 2.

Fig. 2.

Social-ecological model of facilitators of PrEP adherence and retention

Table 2.

Key themes regarding facilitators to PrEP adherence or retention

Third-order interpretations	Second-order interpretations	First-order interpretations	Source
Supportive health systems	- Support from clinic staff, sexual health coordinators and peer navigators - Positive relationships with healthcare providers	“My alarm is my guardian, but [the adherence counselor] also just like reminding me, take your PrEP, take your PrEP, you know. Like every visit like have you taken it? And just that whole process of her like constantly telling me I have to train it into myself and now I just know like automatically to take the PrEP at 10:00.” (p9, [18])	[18, 30, 32, 36]
Community norms	- Popularity of PrEP use in the community - Normative in the community	- “it’s becoming more popular in the LGBT community for men to be on PrEP.” (p10, [35]) - “more people talking about PrEP, and PrEP is showing up in more places… seeing it more places is helping it become more normal, and if it becomes more normal, then people won’t feel so taboo by taking it.”[38]	[35, 38]
The support of the LGBTQ + community	- Local LGBTQ+-friendly neighborhood - Normalization and promotion of PrEP in LGBTQ + community	- “The Hillcrest area is very supportive of it [PrEP], because they have it at all their bars, on the T.V.s, that they have there, they always have little PrEP fliers about it, they even have like PrEP parties.” (p10, [35]) - “I believe that in the LGBTQ community, PrEP, it’s everywhere. Like you hear it everywhere. You know someone that has taken PrEP.” (p10, [35])	[35, 38]
Social network	- The widespread image of PrEP on social networks - PrEP’s popularity and normalization on social media platforms (e.g., Facebook, Grindr, YouTube)	- “There was a lot of ads about PrEP on like social media sites, or online dating sites like Grindr.” (p10, [35]) - “I think, honestly, at least in my perspective, it’s becoming more common to see on the LGBTQ + dating apps that people are taking it, and I think seeing it become common is also seeing it become more accepted?”[38]	[35, 38]
Social support	- Companionship, including partners, family members, health care workers, and friends - Encouragement from family and friends for self-care, PrEP adherence, and attendance at follow-up appointments - Social interactions served as direct or indirect prompts for PrEP use	- “I mean, my grandmother takes medication every day at 9:00, and unlike some of my other family members, who they’re more to themselves and they forget stuff easily, I give her her medication. So as long as she takes her medication, I’m taking mine.… And it’s like I tell her the same thing, I don’t like the taste of the pill, but I mean, it’s going to help us…” (p9, [18]) - “I pretty much know to take [PrEP], and I have other friends who take it, so when they say, ‘Oh, I forgot to take mine,’sometimes it reminds me.”[31]	[18, 31, 35, 36]
High risk perception	- Serodiscordant couples - Having multiple partners - Condomless sex	“At first when I was taking my PrEP… before [my partner] was diagnosed with HIV, I wasn’t taking it every single day… But now that he is, I do try to stay on a constant basis with it.” (p10, [18])	[18]
High PrEP awareness	- Motivation generated from personal responsibility, self-care, and perceived control over their health - Good awareness about PrEP’s purpose and efficacy - Positive well-being	- “It made me feel confident in my sexual encounters… my sexual encounter was more enjoyable.” (page 24, [12]) - “PrEP has been very useful to me. It has made me feel more alive and happier about my life. I even have better appetite and have more drive and purpose in my life…” (p6, [32])	[12, 18, 30–34]
Psychological strategies	- Incorporating PrEP into daily routines - Mindfulness - Keeping pills in a visible location - Taking medications together (with older relatives, friends)	“I look at the day it was filled and then I count backwards, and I’m like, okay, if I took it today, I would have this many pills. And if I didn’t take it today, I would have this many pills. That’s how, if I ever can’t remember if I took it, that’s how I figure it out.” (p511, [31])	[18, 31, 36, 43]
Technical/ Instrumental prompts	- Reminders (alarm, calendar, watch) - M-health interventions (mobile apps, messages, social network) - Multiple storage containers at multiple locations	- “They could be a little pop-up reminder in my phone…Anything like that. A note or something.” (p2043, [36]) - “I guess I would bring the bottle with me, usually, and sometimes I would honestly just empty the bottle out and leave some in my place.” (p 512, [31])	[30, 31, 36, 43]

LGBTQ+: Lesbian, Gay, Bisexual, Transgender, Queer

Individual Level

At the individual level, key facilitator themes included high PrEP awareness, psychological strategies, technical/instrumental strategies, and perception of HIV risk. Notably, studies underscore high PrEP awareness as the most common factor facilitating increased PrEP utilization among YMSM [12, 18, 30–34]. The cognitive framework adopted by YMSM regarding PrEP practice includes viewing PrEP as a daily vaccine and a means of safeguarding both themselves and their sexual partners [30]. This perspective is characterized by a motivation grounded in personal responsibility, self-care, and the perceived control individuals have over their health outcomes.

Cultivating the habit of medication adherence with the integration of mHealth applications and reminder tools also facilitated PrEP retention and adherence. These strategies encompassed phone alarms, pill boxes, text message services, mobile health apps, and reminders from both partners and healthcare professionals [33, 35, 36]. Complementary to technological assistance, psychological strategies have demonstrated efficacy [37]. These included practices such as keeping medication visible, employing mindfulness techniques, incorporating PrEP administration into daily routines, and aligning PrEP usage with the consumption of other medications (Fig. 2).

Table 3.

Key themes regarding barriers to PrEP adherence or retention

Third-order interpretations	Second-order interpretations	First-order interpretations	Source
Financing mechanism	- High out-of-pocket expenses - Affordability depending on parents - Difficulties in navigating copay assistance programs - Absence of insurance - Inability to utilize parental insurance	- “I wouldn’t pay more than fifty dollars. I probably would not be able to afford to pay out of pocket.”(p4, [34]) - “I couldn’t get it on my parent’s health insurance. I am a student that isn’t working to be able to get my own insurance” [40]	[18, 30, 33, 34, 36, 39–42]
Culture	- Perceived invincibility in Hispanic culture - Masculinity and machismo in Latinx culture - Intersecting identities - Cultural norms - Religious beliefs/practice	- “I don’t need healthcare. I’m strong, my body will take it. I’m not sick, I don’t need medicine.” (p11, [35]) - “As a Latino, one doesn’t have the trust to tell our parents [about PrEP use] because that’s not normal, or they [parents] don’t accept it. Then you don’t have anyone to tell.” (p11, [35]) - “Why I did not take those pills? Because of my church, I think.” (p5, [34])	[30, 34, 35]
Influence of healthcare providers	- Fear of being judged by health staff - Stigmatization from healthcare providers - Resistance to PrEP prescription of healthcare providers	- “We may not be very comfortable at the Government facility as the staff there are too curious. They just ask questions for the sake of getting things to talk about not because it is related to our needs…” (p7,[32]) - “I know sometimes a lot of my friends that are LGBT, they feel uncomfortable disclaiming their sexual orientation with their doctor for fear of being judged.” (p11, [35]) - “My doctor didn’t really agree with the medicine or the way that it was being used… he actually said that he didn’t want to prescribe it, because he felt that it…was against his morals or philosophy to provide that sort of treatment…because he believed that the best way to prevent STI or HIV was just to be in a monogamous relationship.” (p9, [35])	[30, 32, 35, 38]
Social Stigma	- PrEP use is stigmatized in the MSM community - Social stigma - Heterosexism and homophobia	“My friend said that when you see on a Grindr profile that someone’s on PrEP, it’s like clear that they’re a slut.” (p11, [35])	[30, 34, 35, 44]
Conflicting relationships	- Discouragement of PrEP use by family and friends - Monogamous relationship - Suspicions from parents, partner regarding frequent doctor visits	- “After I was taking it for the first couple of years… he talked me out of it, because he said…if we’re gonna be monogamous that. it wasn’t necessary.” (p7, [35]) - “My parents would be suspicious of why I’m always at the doctors.”(p8, [33])	[33–35, 44, 46]
Interpersonal-Stigma	- Sexual orientation-related stigma - Stigma from family members - Discrimination	- “Oh, the biggest challenge, when people see that I’m on PrEP, they automatically try to say I have HIV or AIDS.” (p5, [18]) - “I was trying to…think about the best time of day for me to take it. Because I don’t want to carry the pill with me everywhere. Because some people would look at it and [say], ‘Why you taking HIV medicine?’” (p8, [35])	[18, 30, 32, 36, 45]
Low Risk Perception	- Low/no perceived HIV risk - Higher risk for sexually transmitted infections	- “I could protect myself from HIV. I had sex but I didn’t have multiple sexual partners. I don’t think I’m at risk. I don’t usually have sex much anyway.” (p4, [55]) - “I guess, I stopped taking it for those days because I really wasn’t being sexually active. I only was taking PrEP because like I told you when I be start off, I was very sexually active. It’s not no more I’m not really– I don’t think about sex that much no more– at all.” (p7, [18])	[12, 18, 39, 55]
Accessibility	- Distance to health facility - Cost of transport - Absence of driver’s license - Lack of a vehicle	“Transportation would be kind of a nuisance since I don’t have a license.”[33]	[33, 39, 44–46]
Pill burden	- Complicated and time-consuming - Forgetfulness - Delays in taking the pill - Challenges of finding a suitable time for pill-taking	- “From seven to seven, I’m like super busy…. They are like very, very specific… with the time in which they see you… I understand, because, well, they have to attend many people, but then I would arrive 20 minutes late or 10 minutes late, and then I would be embarrassed to go in to be seen by the doctor” (p25, [12]) - “So sometimes my phone doesn’t remind me and then I won’t remember if I’ve taken it or not.” (p524, [43])	[12, 30, 43, 45, 46]
Adverse effects	- Short-term medication effects - Long-term side effects - Reduce sexual satisfaction - Bloodwork apprehension	- “The reason why I didn’t want the daily dose because I was worried about bone density effect.” (p4, [55]) - “The side effects were affecting my health, so I stopped using PrEP.” [57] - “maybe the pill will kill some of my sexual feelings and even maybe give me erectile dysfunctions leading to poor sexual performance” (p10, [44]) - “The needles to get tested would hurt.” (p8, [33])	[12, 30, 33, 34, 40, 42–44] [33, 44]
Self-stigma	- Fear of disclosure - Internalized stigma	“Because I work in a pre-school, a lot of the parents live in this area. When I knew I had to get a refill, I tried to hide the pill bottle or get really close to talk quietly with the person or just show the pharmacist the medicine I needed and tried not to respond. One of those times, there was a child that pointed at me saying “the teacher.” And I was embarrassed, because in the first place a lot of people have stereotypes that if you are gay and work with kids you are a pedophile. So, I tried to keep my sexual orientation away from my professional life.”[35]	[17, 35]
Behavioral factors	- Busy lifestyle - Competing stressors - Drinking alcohol - Inability to forecast sex - Conflicts between school/work schedules and PrEP appointments	- “…my schedule just wasn’t normal and then I wasn’t used to being on medication. Every day. I was never sick or anything, so I never had to take a pill continuously. Except for antibiotics when I had the flu or something.” (p8, [18]) - “I went out drinking and used some drugs [Khat]. The drugs [combination of PrEP and khat] made me get confused.”[32] - “The only bad thing would be my work/class schedule conflicting with when appointments are available.” (p8, [33]) - “If the sexual desire starts from our side, we can control it. But if it starts from the partner’s side, it is out of our control.” (p4, [55])	[12, 18, 32, 33, 40, 45, 55]

Interpersonal Level

Four studies identified social support as a most facilitator at the interpersonal level in encouraging PrEP adherence and persistence [18, 31, 35, 36]. Assistance from family members and friends collectively contributes to the enhancement of YMSM’s retention in care. Specific strategies adopted by YMSM include engaging in social interactions while taking medications, participating in discussions with others regarding adherence, sharing the experience of PrEP use with friends or partners, co-administering medications with older relatives dealing with chronic health conditions, and receiving encouragement from family and friends for self-care, PrEP adherence, and attendance at follow-up appointments.

Community Level

Facilitators at the community level include supportive social networks, and the support of the LGBTQ + community [18, 30, 32, 36]. The presence of PrEP imagery and its normalization on social media platforms such as Facebook, Grindr, and YouTube play a significant role [35, 38]. Additionally, the existence of LGBTQ+-friendly neighborhoods and the active normalization and promotion of PrEP within the LGBTQ + community further support its adoption [35, 38].

Societal/Structural Level

At the societal/structural level, supportive health systems and community norms emerge as key facilitators fostering retention and adherence. Four studies within this domain predominantly center on factors associated with the health system [18, 30, 32, 36]. Support from the health system emanates from various sources, including providers, clinic staff, sexual health coordinators, and peer navigators. Notably, peer navigators, who share similar characteristics with YMSM, played a pivotal role by providing diverse assistance, ranging from organizing appointments, offering reminders, and monitoring side effects to possessing a comprehensive understanding of insurance systems and funding. YMSM expressed a particular reliance on providers, given the fact that they offered them counseling to endorse PrEP use and assist in disclosing PrEP usage to partners and family members. Consultation with knowledgeable healthcare providers played a vital role in PrEP adherence.

Barriers

We have identified 12 key themes representing barriers to PrEP adherence and retention among YMSM [18, 30, 33, 34, 36, 39–42]. These themes are categorized across four levels within the socio-ecological model. At the individual level, we identified adverse feelings, transportation, pill burden, behavioral factors, self-stigma and risk perception [12, 30, 33, 34, 40, 42–44]. Interpersonal-level barriers encompass conflicting relationships and interpersonal-stigma [18, 30, 32, 36, 45]. Factors at the community level include social stigma and influence of healthcare providers. We identified financing mechanisms and culture as societal/structural level factors [30, 34, 35]. The most common barrier is financing mechanisms, followed by adverse effects, and behavioral factors (Fig. 3).

Fig. 3.

Social-ecological model of barriers to PrEP adherence and retention

Individual Level

At the individual level, key themes are risk perception, transportation, pill burden, adverse feelings, and behavioral factors, with adverse feelings and behavioral factors emerging as the most common barriers. Notably, transportation barriers were unique to YMSM, a consensus found across all five related studies [33, 39, 44–46]. The articulated reasons for this barrier included geographical distance to healthcare facilities, the financial burden associated with transportation costs, the absence of a driver’s license, and the lack of access to a vehicle [33, 39, 44–46].

Additionally, the young age of the subjects poses significant challenges in managing their own behavior, which complicates establishing a regular medication routine for PrEP. Their busy lifestyles, stress from multiple sources, and the conflict between their educational or work commitments and PrEP appointments further hinders adherence to medication schedules. Specifically, factors such as limited time availability, changes in daily routines due to extended work or school hours, travel requirements, and the unpredictability of sexual encounters make it difficult for individuals in this age group to consistently adhere to PrEP. Additionally, there is a perception among YMSM that traveling for testing, attending medical appointments, and planning pill-taking are time-consuming. Only one study highlighted a decrease in sexual enjoyment as a reason for discontinuation [44].

Interpersonal Level

Conflicting relationships and interpersonal stigma emerge as key themes contributing to reduced PrEP adherence and retention at the interpersonal level. Specifically, five studies underscore the influence of stigma as a prominent factor, which emanated from various sources, such as family, friends, healthcare providers, and sexual partners [18, 30, 32, 36, 45]. The reluctance to use PrEP due to the inadvertent revelation of one’s sexual orientation is especially challenging for young individuals facing familial opposition. Stigma is identified as a barrier to disclosing PrEP use within their support networks, with parents and family members exhibiting stigmatization towards the utilization of PrEP. YMSM frequently encountered family-related stigma and faced misconceptions regarding HIV-positive status, which led to feelings of discomfort with keeping their PrEP pills visible at home.

Community Level

For the community level, social stigma is the most common barrier [30, 34, 35, 44]. The overarching theme of social stigma involves the stigmatization of PrEP use. This stigma manifests through discrimination, heterosexism, homophobia, and apprehensions surrounding the disclosure of medication intake. The perception of PrEP as a “taboo” subject within the gay community is prevalent, with individuals expressing concerns about potential disclosure to specific groups in their communities [30]. Additionally, PrEP users face the stereotype of being perceived as promiscuous or engaging in unsafe sexual behavior, further contributing to the challenges associated with societal attitudes toward PrEP utilization within the MSM community [35].

Societal/Structural Level

Numerous studies highlight financial burden as the primary barrier to PrEP adherence and retention [30, 34, 36, 39–42]. This concern is particularly pronounced during this life stage, driven by factors such as the perceived high cost of PrEP, affordability depending on parents, challenges in covering expenses related to PrEP, difficulties in navigating copay assistance programs, the absence of insurance, and the inability to leverage parental insurance. Notably, there is a significant apprehension among individuals in this age group regarding the potential discovery of their true sexual orientation if there is a billing record for PrEP usage and payment is traced back to their parents’ health insurance. Culture shapes PrEP adherence and retention among YMSM, with elements like perceived invincibility in Hispanic culture, machismo in Latinx culture, intersecting identities, cultural norms, and religious practices [30, 34, 35].

Discussion

To the best of our knowledge, this scoping review is the first to examine facilitators and barriers influencing PrEP adherence and retention specific to YMSM. The social ecological model and the meta-ethnographic approach were employed to systematically analyze the barriers and facilitators. The findings from this study are crucial for informing policymakers and researchers, urging them to recognize and enact multi-level interventions that can enhance PrEP adherence and retention among this population.

This scoping review offers novel insights compared to similar reviews conducted on general MSM populations, transgender individuals, or Black MSM, by focusing specifically on the unique challenges and strategies relevant to YMSM [17, 47, 48]. First, we identified innovative psychological and technical strategies tailored to improving adherence and retention among YMSM, reflecting their distinct developmental, social, and cultural contexts [30, 31, 36, 43]. Second, we found that normalizing PrEP use on social media platforms is a promising approach to reducing stigma, which is particularly impactful for YMSM, who are highly active on social media and often seek information and community support online [35, 38]. Previous studies have demonstrated that social media campaigns can effectively improve PrEP adherence, highlighting their potential as a targeted intervention for YMSM [49]. Additionally, the intersection of age, life stage, and social dynamics in YMSM creates unique barriers and facilitators to PrEP use that are not fully addressed in studies targeting broader MSM groups.

Strategies to increase adherence and retention to PrEP that have been most identified by studies include reminders about the medication schedule, integrating medication taking into daily habits, and keeping PrEP in many places and easily visible [30, 31, 36, 43]. Noteworthy evidence from prior intervention studies grounded in mobile health (M-health) underscores the efficacy of medication reminder applications such as iTab, Lifestep, and Dot [50–52]. Despite the success demonstrated by these technological interventions, there exists a notable gap in the literature concerning the application of behavioral interventions and the training of PrEP users to associate medication adherence with their daily habits. Thus, our findings suggest that providers and clinicians might consider adopting multilevel interventions to influence PrEP usage behaviors, incorporating individual counseling as part of the strategies outlined above.

YMSM face unique barriers to accessing PrEP and healthcare due to their young age and limited life skills, which amplify these challenges. Being at a developmental stage where they are still building autonomy, many YMSM struggle with balancing school or early job commitments and healthcare appointments, reflecting a lack of experience in managing competing priorities. Additionally, their limited interpersonal and negotiation skills often make it difficult to navigate complex relationship dynamics, such as mistrust or conflicting priorities with partners, which can discourage consistent PrEP use [33–35, 44, 46]. The discouragement of PrEP by family or friends is particularly impactful for YMSM, who are more likely to rely on these networks for financial or emotional support, and they may lack the maturity or skills to advocate for their needs. Furthermore, suspicions from parents or partners about frequent doctor visits can create a sense of stigma, which YMSM, due to their younger age, may be less equipped to handle confidently compared to older MSM. These barriers are distinctly tied to their life stage, where limited independence, underdeveloped skills, and reliance on others heavily influence their ability to access preventive healthcare effectively.

For YMSM, financial mechanisms pose a significant barrier [18, 30, 33, 34, 36, 39–42]. Our findings align with prior reviews examining barriers of PrEP accessibility and highlighting financial burdens as the primary impediment to PrEP, a multifaceted barrier underscored by various contributing factors, which is particularly exacerbated among young individuals and especially in countries where PrEP costs are not financially supported or out-of-pocket [13, 47, 48]. YMSM often faces challenges such as unstable financial resources, economic dependence on their families, lack of personal health insurance, and a limited understanding of insurance and PrEP payment support programs [18, 30, 33, 34, 36, 39–42]. Therefore, it is crucial for intervention researchers and service providers to receive training specific to youth development and offer services that are sensitive to the unique financial and developmental circumstances of young individuals. This approach could include the provision of copay assistance plans, guidance through patient assistance programs for covering medication costs, and aiding in insurance navigation.

In the domain of family relationships, these factors simultaneously present as both barriers and facilitators. A key determinant in this dynamic is the level of awareness among families of PrEP users regarding PrEP’s efficacy [12, 18, 30–34]. This highlights the imperative for future investigations to incorporate family-targeted interventions aimed at augmenting awareness about PrEP while concurrently striving to diminish stigma and discrimination against YMSM. A notable instance of such an intervention is evidenced in a pilot study, wherein participants assigned to a PrEP counseling group received individualized and comprehensive counseling [37]. This counseling was provided by a staff member who identified as a MSM, equipped with extensive experience in HIV prevention and PrEP-related counseling, including guidance on managing familial relationships. This approach has shown efficacy in promoting PrEP initiation and uptake. Future research endeavors should seek to replicate and adapt this model, focusing on sustaining long-term PrEP retention and adherence.

Results revealed that stigma and the fear of disclosure constituted significant factors contributing to diminished PrEP adherence and retention. This result is consistent with other reviews of the general MSM population [13, 47, 48]. Nevertheless, it is imperative to underscore and elucidate this issue specifically within the context of YMSM. Beyond concerns about societal and partner disclosure, a predominant apprehension among young individuals pertains to the fear of disclosing their PrEP usage to parents. This fear is rooted in the apprehension that their parents may discern their true sexual orientation, potentially impeding their access to PrEP and significantly exposing them to HIV-related discrimination within their families [35]. Such disclosure becomes more likely when parents chance upon PrEP receipts, insurance coverage, frequent visits to treatment facilities, or the actual presence of PrEP medication [35]. Conversely, our results also highlight that YMSM disclosing PrEP use and receiving familial support serve as facilitators for PrEP utilization [18]. Consequently, service providers and researchers ought to concentrate on raising awareness, promoting greater acceptance of PrEP within the families of PrEP users, and devising solutions to address information security concerns associated with the utilization of PrEP.

In terms of individual-level determinants of PrEP adherence and retention, the issue of accessibility emerges as a significant barrier [33, 39, 44–46]. This encompasses a range of challenges for YMSM, including the distance to healthcare facilities, travel costs, lack of a driver’s license, and the unavailability of a personal vehicle [33]. These obstacles underscore the vital importance of support from parents and guardians in facilitating regular PrEP use. These factors highlight the critical role of parental and guardian support in facilitating consistent PrEP usage. This aspect, notably, has been minimally addressed in previous research, emphasizing its particular significance for younger populations [13, 17]. Moreover, it is recommended that healthcare providers consider offering tailored transportation assistance to patients. Such an intervention has been evidenced to improve treatment retention in a pilot study [52]. Alternatively, the deployment of direct medication delivery services to patients presents a viable solution to overcome the transportation-related hurdles in PrEP adherence, potentially enhancing overall treatment efficacy.

Recommendations for Future Research

Most existing studies on PrEP adherence and retention have been conducted in high-income countries, leaving a gap in understanding of barriers and facilitators in low and middle-income countries. While research has predominantly centered on the Americas and Africa, Asia is increasingly recognized as a critical region, especially for the YMSM group [53]. This highlights the need for more research to identify and understand barriers in these areas. Additionally, there is a noticeable lack of focus on YMSM in the research population. We recognize the intricate issues related to securing consent and conducting research with this group. Key challenges include the limited support and engagement from justice staff and families regarding the importance of promoting sexual health and preventing HIV among youth. Additionally, practical obstacles such as timing, transportation, and space complicate conducting intervention research with community-based samples [54].

Limitations of The Review

Our study had several limitations. Firstly, this scoping review relies exclusively on publicly accessible documents, neglecting conference or workshop reports and grey literature, potentially resulting in an incomplete evaluation of the issue. Secondly, due to the nature of where research on this topic has been conducted thus far, this review predominantly concentrates on elucidating the matter of adherence and retention within the United States, thereby constraining the generalizability of conclusions to YMSM globally, particularly in Asia where the dynamics of the HIV epidemic are characterized by the concentration of high-risk populations. Additionally, studies frequently lacked explicit reference to age groups, leading to the inclusion of studies encompassing older age brackets, potentially leading to bias in the derived conclusions. However, in studies involving older groups, we focused solely on subgroup analyses (interpretations for YMSM, illustrative quotes) for individuals aged 10 to 29. As a result, the findings predominantly reflect the experiences of YMSM. Finally, we had the limitation of only reviewing English documents, contributing to publication bias, and hindering a comprehensive evaluation of barriers.

Conclusions

Through our scoping review, we have identified key themes that are crucial to understanding PrEP adherence and retention among YMSM. It is imperative to underscore the unique factors that are specific to or felt particularly acutely by YMSM, such as financial burden, transportation challenges, and the pervasive impact of stigma and fear of disclosure. Conversely, highly effective technical strategies for enhancing PrEP adherence and retention include the establishment of routines and the utilization of mHealth interventions as reminders. Future studies on interventions should use a comprehensive, multi-level approach to improve PrEP adherence and retention among YMSM. This includes educating YMSM families about PrEP through behavioral and technical strategies.

Electronic Supplementary Material

Below is the link to the electronic supplementary material.

Author contributions

LAT designed the study. KDV and LQP did the literature searches and designed the data extraction form. KDV, THML, PTTD and HTP extracted the data. LQP and LAT crosschecked the data extraction. NTPH, TTK, BMH, and HTP did the meta-ethnographic. KDV and HTP initiated the paper. LAT, SMB, SR, and LMG critically revised subsequent drafts. All authors read and approved the submitted version.

Funding

This study received funding from the “Vietnam Implementation Science Advancement Program” (VISA), a collaborative project between the School of Preventive Medicine and Public Health, Hanoi Medical University (HMU) and the Gillings School of Global Public Health, University of North Carolina at Chapel Hill (UNC). This project is supported by the US National Institutes of Health under the partnership between UNC and HMU.

Declarations

Conflict of interest

The authors have declared no competing interest.