Perspectives of YMSM on PrEP Adherence and Peer Navigation: A Qualitative Study

Abstract

HIV incidence is disproportionately high among young cisgender men who have sex with men (YMSM), but YMSM are less likely than adults to use HIV pre-exposure prophylaxis (PrEP). Among YMSM living with HIV, peer navigation programs have been effective in linkage to care and increasing medication adherence; such programs may aid HIV-uninfected YMSM in overcoming barriers to engagement in PrEP care. We conducted 32 semi-structured qualitative interviews at a community health center in Massachusetts, USA specializing in sexual and gender minority health with 4 sub-groups of YMSM who: 1) had never discussed PrEP with a medical provider, 2) had discussed PrEP with a medical provider but declined a prescription, 3) were prescribed PrEP and have sub-optimal adherence (taking fewer than 4 pills per week), and 4) were prescribed PrEP and were optimally adherent. Domains addressed in the interviews included knowledge of PrEP and HIV prevention, barriers and facilitators to PrEP adherence, and attitudes towards peer navigation for PrEP. Interviews were transcribed and coded using thematic analysis methodology. Multiple themes emerged from the interviews, including finding that perceived costs, anticipated stigma, sexual activity, and relationship status influence PrEP uptake and adherence; establishing pill-taking routines is an important adherence facilitator; and peer navigators could offer benefits for PrEP adherence.

Introduction

HIV incidence is disproportionately high among young men who have sex with men (YMSM; used here to describe both young men who have sex with men who are under the age of 18 and those between the ages of 18 and 24). In 2019, 20.8% of new HIV diagnoses were among youth (aged 13 to 24), with 87% among young cisgender men and nearly all of these (93%) attributed to male-to-male sexual contact. While new HIV diagnoses among youth overall dropped 6% between 2010 and 2016, rates remained stable for males (Centers for Disease Control and Prevention, 2022). These alarming trends underscore the need for effective HIV prevention strategies for YMSM.

Among MSM, oral pre-exposure prophylaxis (PrEP) reduces the risk of acquiring HIV by 99% when taken consistently or on an event-driven basis (Grant et al., 2014; McCormack et al., 2016; Molina et al., 2013). PrEP could greatly reduce HIV transmission among YMSM; however, youth are less likely than adults to use PrEP, with US pharmacy data indicating that only 1.5% of PrEP prescriptions dispensed between 2012 and 2017 were for youth under the age of 18 (Hosek & Henry-Reid, 2020). Youth and young adults face many environmental barriers to PrEP use, including difficulties navigating healthcare, lack of knowledge of PrEP among their healthcare providers, and concerns about using their parents’ insurance for PrEP, which could lead to inadvertent disclosure of PrEP use. They also face patient barriers, such as difficulty appraising HIV risk and medical mistrust as a function of discriminatory experiences in healthcare settings, among other barriers (Doll et al., 2018; Fitch et al., 2021; Hosek et al., 2016; Miller et al., 2014).

Many YMSM who initiate PrEP also experience challenges with adherence, due to the presence of structural barriers (such as issues with medical insurance, lack of transportation), as well as stigma and low HIV risk perception (Wood et al., 2019). In a 2017 open-label PrEP demonstration study, two-thirds of YMSM provided with PrEP did not have protective concentrations of PrEP medications in their blood 6 months after initiation despite extensive adherence counseling (Hosek et al., 2017). Resources to support PrEP adherence (e.g., having dedicated counselors or system navigators) in healthcare settings are often scarcer than in clinical trials, which may result in even lower adherence rates and less effective HIV prevention.

Despite a need for tailored PrEP support programs for YMSM, there is a dearth of research on youth- and young adult-focused PrEP interventions, particularly for those under the age of 18 (Siegler et al., 2018). One strategy that may meet this need is the use of peer health system navigators for PrEP (peer navigators; (Freese et al., 2017). Peer navigators are community members who are hired and trained as healthcare workers to support adherence and retention in care. Peer navigation has been successfully implemented in multiple populations, including HIV-infected youth (Okeke et al., 2014). The SMILE study, which focused on linking undiagnosed HIV-infected youth to care, found that peer navigation was highly acceptable, suggesting that peer navigation may be acceptable for youth who use PrEP (Philbin et al., 2017). Peer navigation also improves viral suppression for adults living with HIV (Cunningham et al., 2018). The Substance Abuse and Mental Health Services Administration has dedicated over $16 million to peer navigation programs for substance use and HIV prevention among racial and ethnic minorities, demonstrating the importance of rigorous studies to inform this strategy (Substance Abuse and Mental Health Services Administration, 2022).

The effectiveness of peer navigation for youth and adults living with HIV suggests that peer navigators might be effective at helping YMSM to negotiate the complexities of healthcare systems and access multidisciplinary services to improve PrEP adherence. The purpose of this qualitative study was to explore barriers and facilitators to PrEP use among YMSM and elicit their perspectives on peer navigation to improve uptake and adherence for PrEP.

Methods

Participants

We enrolled 32 sexually-active YMSM ages 15 to 24 years for semi-structured qualitative interviews focused on attitudes and experiences with PrEP and opinions on peer navigation for PrEP. Participants were recruited from health organizations and community centers in greater Boston, MA using flyers and referrals from community members and healthcare providers. We used purposive sampling to ensure diversity of experiences with PrEP. As part of the recruitment and screening process, potential participants were asked about their PrEP experience: whether they had ever used PrEP or were currently using PrEP, PrEP adherence (for those currently using PrEP), and whether they had ever discussed PrEP use with a provider (for those not currently using PrEP). Using responses to these questions, we allocated youth to 1 of 4 interview groups corresponding to steps in the PrEP Care Continuum (Nunn et al., 2017): YMSM who had never discussed PrEP with healthcare providers [n = 8], those who had declined a PrEP prescription after a discussion with providers [n = 9], those who had used PrEP with sub-optimal adherence, defined as generally taking fewer than 4 pills weekly (self-reported) [n = 3], and those who had used PrEP with high adherence, defined as generally taking 4 or more doses weekly (self-reported) [n = 12].

Though much of the extant literature on PrEP adherence and PrEP navigation focuses on individuals who have heard of PrEP, considered taking PrEP, or are prescribed PrEP, we chose to include PrEP-naïve individuals in our study. PrEP-naive individuals are situated in an important place in the PrEP care continuum, as they are a primary target of PrEP uptake interventions. Additionally, many of the barriers to PrEP engagement faced by PrEP-naïve individuals (e.g., HIV risk appraisal, financial and logistical access to PrEP) are mirrored in those who are farther along in the PrEP care continuum (i.e., those who are current or former users or PrEP). Individuals in each of these groups may benefit from interventions that target these common barriers. It is also important to note that perspectives of PrEP-naïve individuals can inform strategies that will help people initiate PrEP use with robust adherence plans and form positive medication-use habits at the start of their PrEP engagement. Finally, PrEP-naive perspectives on peer navigation to support PrEP adherence can inform whether and how to include mention of peer navigation in public health messaging that is designed to engage YMSM in PrEP initiation.

The target N for each group was at least 8 participants, but difficulty recruiting individuals who were sub-optimally adherent to PrEP led to under sampling in that category. It is important to note, however, that perspectives from the sub-optimally adherent group were consistent across participants. We reached data saturation, with consistent responses being endorsed across additional interviews, and our total set of concepts was stable (Green & Thorogood, 2013). Inclusion rates were high, with the majority of individuals approached for participation choosing to engage in the study and screening eligible for inclusion in one of the four groups. The prevailing reason for non-inclusion in the study was lack of interest.

Screening and Informed Consent

Screening for study eligibility was conducted over the phone and in person at local community centers. Those who were eligible for interview were engaged in a thorough informed consent process, which included information about the purpose of the study, risks and benefits of study participation, the voluntary nature of study participation, participant remuneration (a $50 gift card upon completion of the interviews), and privacy and data sharing procedures. Individuals were given ample opportunity to ask questions about the study. Additionally, the informed consent was conducted by the individual who later engaged the participant in the qualitative interview. Because disclosure of PrEP use to parents has been reported as a barrier to HIV preventative care for youth under age 18, we secured a waiver of parental consent. All procedures were approved by the [INSTITUTION NAME] Institutional Review Board. Interviews were conducted between June and September 2017 at [INSTITUTION NAME] and local community organizations in Boston.

Data Collection

Quantitative Survey

After informed consent, participants were asked to complete a brief, self-administered quantitative survey using a computerized tablet that was provided by the study team. The survey included sociodemographic questions related to age, race, ethnicity, sex, gender identity, sexual orientation, education, employment, and housing situation. These data were collected to contextualize our qualitative findings by providing background information on the individuals interviewed.

Qualitative Interview

In-depth qualitative interviews, using a phenomenological framework (Sundler et al., 2019), were chosen as the primary method of data collection for this study, as there has been very limited data published on the perspectives of YMSM on strategies to optimize PrEP adherence, as well as their opinions on peer navigation for PrEP. Given this dearth of detailed information, a qualitative approach that utilized a semi-structured interview guide was deemed an appropriate and useful method for gathering the participants’ unique perspectives. An interview guide was developed for each participant group for in-person, one-on-one administration. The study PI (DK) drafted an initial interview guide and shared this with all members of the study team for feedback and revisions in an iterative manner until consensus on a final interview guide was achieved. The team also reviewed early interviews to ensure clarity of the guide. We relied on the collective expertise of the multidisciplinary research team to ensure clarity and relevance to our research objectives. This team included behavioral scientists and clinicians, many of whom had extensive experience with qualitative research focused on HIV prevention and PrEP for MSM. Guiding questions focused on knowledge and experiences with HIV risk, sexual healthcare, prevention strategies and PrEP, facilitators and barriers to PrEP adherence, and opinions on peer navigation for PrEP. At the start of the interviews, participants, regardless of their assigned participant group, were introduced to PrEP and peer navigation, and given space to ask questions about both concepts.

Interviewers were members of the study team (a male-identified physician [DK], a female-identified nurse practitioner [JD], and a female-identified licensed social worker [SMM]) who were trained in qualitative interviewing by a clinical psychologist (CP) with expertise in qualitative research. At the start of each interview, the interviewer acknowledged their own identity – particularly how it differed from the study population of interest – and their role within the study team. Participants also completed brief sociodemographic surveys. Interviews were conducted privately (only the interviewer and participant present) within the health center and at local youth centers. Interviews lasted between 30 minutes and one hour.

Analysis

Interviews were audio recorded and transcribed. We used a thematic analysis approach to identify emergent themes related to PrEP use and adherence and opinions on peer navigation for PrEP (Braun & Clarke, 2008). Nvivo 11 (2015) was utilized for data analysis. As described by Braun & Clarke (2008), we followed six steps to conduct our thematic analysis. The first step, familiarizing ourselves with the data, involved the full study team (the PI [DK], the qualitative researcher [CP], and the two coders [SMM and BW]) reading each interview transcript. After the initial review, the PI (DK) and two coders (SMM and BW) generated initial codes and collated those codes into themes – Braun & Clarke’s (2008) steps two and three. These initial codes and themes were reviewed with the qualitative researcher (CP). The coders (SMM and BW) then coded one transcript and then brought the transcript and the codebook to the larger group for further revision of the codebook. This iterative process continued until the study team was satisfied with the completeness of the codebook, following steps 4 and 5 (Braun & Clarke, 2008). Using the finalized codebook (see Table 1 for example codes), the coders (SMM and BW) coded a transcript and then compared codes to assess reliability; this process was repeated until the coders achieved inter-coder agreement. Once inter-coder agreement was reached, the remaining transcripts were coded independently, and the study team identified themes within and across codes. These themes were then reviewed by the study team and discussed as they applied to the PrEP care continuum. The team also determined how the results would be reported and which example quotes would be utilized in the resultant manuscript, as per Braun & Clarke’s (2008) sixth step of thematic analysis. A COREQ checklist (Tong, Sainsbury, & Craig, 2007) was utilized to ensure that the study methods and results were conducted and reported in a thorough and consistent manner.

Table 1:

Themes and Associated Codes

Theme	Codes from Final Codebook
Theme I: YMSM believed that PrEP was effective but would be deterred from use by perceived costs	PrEP knowledge and attitudes – awareness of PrEP as a method of HIV prevention Perceptions of PrEP as effective Perceived cost of PrEP as a reason for disinterest in PrEP use Reasons for non-initiation of PrEP – cost concerns
Theme II: Stigma would deter PrEP use among YMSM and positive perceptions of PrEP use among peers could encourage use.	PrEP knowledge and attitudes – belief that there is stigma around PrEP use PrEP knowledge and attitudes – belief that there is not stigma around PrEP use Reasons for initiation of PrEP – positive perceptions of PrEP by peers Reasons for non-initiation of PrEP – PrEP stigma PrEP adherence barriers – fear of PrEP stigma PrEP adherence facilitators – friend/roommate/partner using PrEP
Theme III: Sexual activity and relationship status influence PrEP use	Reasons for initiation of PrEP – potential or current HIV-positive partner Reasons for initiation of PrEP – engaging in non-monogamous sex Reasons for non-initiation of PrEP – low or no current sexual activity Reasons for non-initiation of PrEP – being in a monogamous relationship PrEP adherence barriers – low or no current sexual activity PrEP adherence facilitators – being sexually active
Theme IV: Establishing pill-taking routines supports PrEP adherence.	PrEP adherence facilitators – pairing PrEP taking with a daily routine (e.g., brushing teeth, eating breakfast) PrEP adherence facilitators – keeping PrEP in a visible place PrEP adherence facilitators – utilizing a pill dispenser PrEP adherence facilitators – utilizing a phone alarm or a medication adherence phone application
Theme V: YMSM across the PrEP Care Continuum anticipated that peer navigators would offer benefits for PrEP adherence.	Perceived benefits of peer navigation for PrEP – assisting with scheduling and remembering medical appointments Perceived benefits of peer navigation for PrEP – assisting with obtaining PrEP prescription (e.g., picking it up from the pharmacy, facilitating transport to the pharmacy) Perceived benefits of peer navigation for PrEP – assisting with navigation of insurance issues Perceived benefits of peer navigation for PrEP – assisting with finding financial assistance Perceived benefits of peer navigation for PrEP – providing information about PrEP (e.g., purpose of PrEP, potential side effects, dosage, drug interactions) Perceived benefits of peer navigation for PrEP – providing reminders about taking PrEP
Theme VI: Relatability was the most important quality in a PrEP peer navigator.	Peer navigator traits – relatable and personable Peer navigator traits – non-judgmental Attributes of peer navigator – being part of the same race and/or ethnicity as client Attributes of peer navigator – having the same gender identity as client Attributes of peer navigator – being of similar age to client Attributes of peer navigator – being part of the LGBTQIA+ community

Results

Participants had a median age of 21 years (IQR = 3.5; range = 17 – 24). The majority of participants enrolled in the study were between the ages of 18 and 24 [n = 30], with two participants under the age of 18 – one in the “declined PrEP prescription after discussion with provider” group and one in the “using PrEP with sub-optimal adherence” group. Both of these minor youth [n = 2] were 17 years old. Over one-fourth of the sample identified as Hispanic/Latino. In regards to race, 65% identified as White, and 13% as Black/African American (Table 2); most participants (84%) identified as gay, and the remainder as bisexual or queer. Most youth (72%) lived with roommates, 75% were in or had completed college, and 76% had full- or part-time employment. Additional demographic and contextual factors for this sample, including their perspectives on condom use and relationships in the context of PrEP availability, are described in a previous publication (Fontenot et al., 2020).

Table 2:

Demographic characteristics [n = 32]

Age, median (SD)	21 (2.0)
Race & Ethnicity, n (%)
White	21 (65%)
Black/African American	4 (13%)
Asian	4 (13%)
Multi-racial	3 (9%)
Hispanic/Latino	8 (26%)
Sexual Orientation, n (%)
Gay/Homosexual	27 (84%)
Bisexual	2 (6%)
Pansexual/Queer	3 (9%)
Education Level, n (%)
Some high school	3 (9%)
High school graduate/GED	5 (16%)
Some college	13 (41%)
BA/BS degree	11 (34%)
Employment, n (%) [n = 30]
Unemployed	4 (14%)
Employed part-time	16 (53%)
Employed full-time	10 (33%)
Living Situation, n (%)
Lives alone	2 (6%)
Lives with significant other	2 (6%)
Lives with roommate(s)	23 (72%)
Lives with relative(s)	4 (13%)
Other	1 (3%)

Our analyses yielded six main themes. The first four themes are organized in order of the PrEP care continuum – starting with knowledge and perceptions of PrEP (pre-uptake and uptake; Theme I), moving to factors that influence PrEP use (uptake and adherence; Themes II and III), and then to PrEP adherence strategies (adherence; Theme IV). The final two themes are related to peer navigation – general perceptions of peer navigation and how a peer navigator might be utilized for PrEP (Theme V), and preferred characteristics of the peer navigator (Theme VI).

Theme I: YMSM believed that PrEP was effective but would be deterred from use by perceived costs

YMSM, including those who were PrEP naïve, were aware of PrEP and believed it could prevent HIV infection. However, patterns in the data suggested that external factors, including perceived costs for PrEP, might deter them from using PrEP. Some YMSM described how out-of-pocket expenses with PrEP and challenges navigating insurance coverage – including uncertainty around whether PrEP is covered by insurance at all – may impact their initiation and adherence with PrEP.

“I really don’t want to get billed, because I have insurance for a reason…I get concerned about whether or not—because I know PrEP is really expensive.”

(20 years old, prescribed PrEP and adherent)

Regarding the information needed to make a decision about PrEP uptake: “Yeah, so I think the big one would be cost. You know, whether it’s covered by insurance, or how you could pay for it.”

(18 years old, had not discussed PrEP with a healthcare provider)

Even for those who have insurance, the copays associated with the medical visits needed to start PrEP, as well as the copays for the medication itself, could prove a major barrier. Some MSM, however, were aware of the existence of copay assistance programs, but stated they were unsure of how to navigate them.

Regarding making a decision about PrEP uptake, “We were looking into get some sort of [assistance] plan because I don’t know if I have insurance. And then any sort of like copay assistance.”

(21 years old, had not discussed PrEP with a healthcare provider)

Another participant noted that there were times when the monthly cost of PrEP might become a barrier to refilling their prescription.

“Right now it’s like $50, but at one point it was like $300 a month and I was almost not able to afford it and that was a problem,”

(24 years old, prescribed PrEP and adherent)

Theme II: Stigma would deter PrEP use among YMSM and positive perceptions of PrEP use among peers could encourage use.

In addition to worries about the expense of PrEP, YMSM across groups cited anticipated stigma as a reason to avoid PrEP use. In particular, some YMSM noted that friends and family who saw them taking PrEP would stigmatize them and assume they had HIV infection.

“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?’”

(24 years old, prescribed PrEP and adherent).

For some, the desire to avoid this anticipated stigma impacted their pill taking behaviors, and in the case of PrEP-naïve individuals, impacted their willingness to start PrEP at all.

“I was at a restaurant… with friends… I went to the bathroom, and then I came out, sat down at the table before we ordered anything. But it when it was time for me to take Truvada, the pill, I had to go back to the bathroom. One of my friends had asked me, ‘Where you going?’ And I’m like, ‘To the bathroom.’ She’s like, ‘But you just went to the bathroom.’ I’m like, ‘I have cramps.’… Like, so I had to, I don’t know, back it up or justify why I was going again, and you know, yeah. So on and off, I’ll panic, and you know, I’ll panic and … I’ll just make something up.”

(20 years old, prescribed PrEP and non-adherent)

“I feel like if it was somebody who either wasn’t comfortable with their sexuality, or their roommates didn’t know, then maybe thay would deter them from taking [PrEP]. Because they wouldn’t want their roommates to find it or something like that.”

(21 years old, had not discussed PrEP with a healthcare provider).

However, not all participants were concerned about PrEP use disclosure among their peers and noted that they had positive interactions with friends around PrEP. Those who were more open with their friends about PrEP use, indicated that PrEP was generally well-received in their social circles, which could motivate PrEP use.

“It seems like everyone is mostly—they see it as admirable…Because you’re protecting yourself from something that they know that you can get easily …But for me, for the praise, I’ll take it.”

(17 years old, prescribed PrEP and non-adherent)

Another participant, also under the age of 18, noted that age may factor into social stigma, or lack thereof, around PrEP use and having multiple sexual partners.

I think age has a big impact on the way people feel about [PrEP], because I know there is stigma around it saying, like, oh, if you’re on it, then you’re like a dirty person because you’re just having sex all the time. But, [PrEP]’s not just that. And I think with my age it’s more expected to be having more sexual partners.”

(17 years old, declined PrEP after discussion with a provider)

Finally, one YMSM endorsed that seeing PrEP being used by peers, such as on social media, could act as a motivator for his own use.

“But I feel like I’m on Grindr pretty much all the time, so like even in class, if like I’m bored, I’ll like pull up Grindr and even if, like a bunch of people will have PrEP listed on it as one of the methods of safety, so even if I read it on there, and I’ll be like, oh, I have to go take PrEP.”

(19 years old, had not discussed PrEP with a healthcare provider)

Theme III: Sexual activity and relationship status influence PrEP use.

YMSM discussed how sexual activity and relationship status may impact adherence to PrEP. Some, particularly those who were PrEP-naïve, were unsure whether PrEP should be taken both when they were sexually active and during periods of abstinence, while others who endorsed having multiple sexual partners or frequent sex cited sexual activity as a motivator for PrEP adherence.

“I’d have to find out the logistics… If I stop taking it, does it stop working? Or, like, how long does it stay in my system after I’m done taking it? You know, or, like should I take it when I’m sexually active and stop when I’m not?”

(19 years old, declined PrEP after discussion with a provider)

“I’m pretty active. I think the longest, I don’t mean to brag or anything, but I think I have sex at least once a month, so knowing that like I’ll probably be sexually active within sometime the month, it means that I kind of like, do owe it to myself to make sure that I’m taking it.”

(19 years old, had not discussed PrEP with a healthcare provider)

Conversely, engaging in less sexual activity or being in monogamous relationship would decrease adherence. One participant who had never discussed PrEP with a healthcare provider remarked that being in a relationship would likely lead to decreased adherence or even discontinuation of PrEP, if they were to use PrEP.

“If I’m not being sexually promiscuous I probably don’t see the need for it.”

(19 years old, had not discussed PrEP with a healthcare provider)

The same participant also perceived that lower sexual activity would compromise PrEP adherence among his peers who are YMSM.

“I think it would just be more like a mind game…I feel that [YMSM] feels that they’re not sexually active; they will not need the drug.”

(19 years old, had not discussed PrEP with a healthcare provider)

Theme IV: Establishing pill-taking routines supports PrEP adherence.

YMSM across the four interview groups commented on the importance of establishing pill-taking routines and integrating PrEP into their daily schedules to facilitate adherence. A participant with low adherence to PrEP believed that integrating PrEP into his daily routines might help him achieve higher adherence.

“I think being in school might help me. Because, before I go to school I eat breakfast, and then before anything I take the acne pill, but then during lunch or something I could do that and take the PrEP, and then the same thing later with the acne pill. So I think I could build a schedule around times during the day, and stuff with school.”

(17 years old, prescribed PrEP and non-adherent)

Similarly, a youth with optimal adherence to PrEP described how his established pill-taking routine supported his adherence.

“Usually I just remember, because I do it before I go to bed, so I just like try to do it after I brush my teeth or whatever.”

(22 years old, prescribed PrEP and adherent)

Another behavioral strategy that respondents thought would facilitate PrEP adherence was the use of phone reminders or alarms.

“They could be a little pop-up reminder in my phone…Anything like that. A note or something.”

(20 years old, declined PrEP after discussion with a provider)

While YMSM across the four interview groups highlighted telephone alarms as an easily-implemented tool to increase PrEP adherence, they also relayed that such alarms are easy to ignore, which could negate the positive effects of the intervention.

“I also have this app on my phone that tells me when to take it. But oftentimes I will ignore it. Because other things are more important. And then I will ignore PrEP.”

(17 years old, prescribed PrEP but non-adherent)

Theme V: YMSM across the PrEP Care Continuum anticipated that peer navigators would offer benefits for PrEP adherence.

Most YMSM had not heard the term “peer navigator” previously but were able to identify potential benefits to peer navigation for PrEP once the concept was explained. Some participants believed that peer navigators would be particularly useful in relaying information about PrEP that are not conveyed by their health care providers. A participant who was using PrEP remarked that some healthcare providers are not well-versed in PrEP and that peer navigators could be instrumental in closing the knowledge gap for youth, which could facilitate PrEP use.

“Like somebody that would just be helpful to make me knowledgeable about the pill and everything about it. Because honestly, my doctor doesn’t -- I mean, I was the first person she’s ever prescribed this for. She still my -- she’s my pediatrician from when I was a child so she typically doesn’t deal with prescribing a medication like that. And she had never prescribed it before and she didn’t even -- she had to look up things about dosages and stuff. So there’s still bits and pieces of it that I don’t know that I’m finding out as I go along,”

(22 years old, prescribed PrEP and adherent)

In addition to providing information about PrEP, YMSM thought that having a peer navigator act as a support or liaison during medical appointments would be advantageous to supporting engagement in PrEP care.

“…But if they [peer navigators] were able to step into the doctor’s office with me, even if it’s just for like a brief conversation with the three of us, then that’s where I would like to picture them most useful”

(19 years old, had not discussed PrEP with healthcare provider).

YMSM who worried about disclosing PrEP use to friends, family, or sexual partners noted that a peer navigator could help them practice disclosure conversations and thus overcome barriers to adherence.

“I think another thing would just be dealing with patients who are on their parents’ insurance and how to have those conversations”

(20 years old, declined PrEP after discussion with a provider)

Finally, YMSM indicated that having a peer navigator to provide medication reminders would offer a practical means to increase adherence.

“They would probably remind you or at least tell you that you should probably take it every day and be that support that you were asking about before if you didn’t have it and you were kind of forgetful,”

(22 years old, prescribed PrEP and adherent).

Theme VI: Relatability was the most important quality in a PrEP peer navigator.

Though YMSM felt that peer navigation for PrEP would be beneficial, the navigator’s personal traits and experiences with healthcare and PrEP would greatly influence the acceptability of peer navigation. Participants across the 4 interview groups stated that the ideal peer navigator would be relatable to them, such as being of similar age (or slightly older), gender, sexual orientation, and racial background.

“But I think someone, like, young, and, like -- you’re, like, young and relatable. And it’s easy to have this conversation with you. It would be different if, like, an older woman was, like -- yeah, so someone young and relatable. It doesn’t really have to be, like, men who sleep with men. I think, for some people… they probably wouldn’t be way too comfortable with, like, talking to, like, white people.”

(20 years old, declined PrEP after discussion with a provider)

“If I have to think of the perfect [peer navigator], they would be my age…and a man who has sex with men…If it was like a straight girl, I feel like she wouldn’t really be able to understand what my feelings would be about sex,”

(23 years old, prescribed PrEP and adherent)

Programs or interventions like peer navigation might be more appealing to youth when organized by individuals from the same age group, i.e., youth-led.

I, myself, there have been sometimes, some groups, some programmings that I wouldn’t want to go to that was asked of me to attend or suggested or offered by an adult… But when someone around my age, someone like me, of youth, I guess, you know when I see that person, I guess, and when I see that person is actually doing that, then, I guess, and I know them, I guess, there’s a, like, interest,”

(22 years old, prescribed PrEP but sub-optimally adherent)

For participants of color, both those who identified as Black and Latinx, having a peer navigator who is also a person of color would be particularly important to enhance relatability.

“I personally would much prefer it if it was a Black person who speaks to me, just because I think, like, there isn’t much representation of, like, I don’t know, gay lifestyles within the Black community, and so it -- I would definitely relate to it more,”

(22 years old, had not discussed PrEP with a healthcare provider)

When asked about the types of experiences the ideal peer navigator would have, most participants thought that educational and professional background would not necessarily matter, but that experience with PrEP, or taking antiretroviral medications as either HIV prevention or treatment, would be essential for a peer navigator.

“Probably someone in their late teens or early 20’s who is clear identified in either -- it was HIV positive and kind of is like well-versed in all that or has been on PrEP themselves,”

(22 years old, prescribed PrEP and adherent)

In addition to looking at themes across the four groups, we conducted an inter-group analysis to examine differences in perspectives between the groups. We found that, for most themes, comments made by members of the different groups were remarkably similar. PrEP adherence strategies (Theme IV) was the one area of discussion that generated differences between the groups. For those who were PrEP-naïve (in the “had never discussed PrEP with a healthcare provider” and “declined PrEP after discussion with a provider” groups), adherence strategies discussed were hypothetical. Those who were PrEP-experienced (in the “optimally adherent” and “sub-optimally adherent” groups) described similar adherence strategies, but these were rooted in actual experience with trying to adhere to PrEP rather than theoretical suggestions for ways to improve adherence.

Discussion

In this analysis of YMSM attitudes and perceptions of PrEP and peer navigation to improve adherence, youth with diverse PrEP experiences generally believed that PrEP was an effective HIV prevention option. They thought that PrEP would be most attractive for youth with multiple sexual partners, which they equated with increased HIV risk, but concerns about financial costs and anticipated stigma could deter them from PrEP use. Youth recognized that practical strategies, such as establishing pill-taking routines and reminders, could facilitate PrEP adherence. Participants perceived that peer navigation for PrEP could also strengthen adherence, especially if navigators were knowledgeable about, and experienced with, antiretroviral medications and were relatable to youth, in particular by reflecting their own demographics. These findings suggest that PrEP may be an impactful HIV prevention option for sexually-active YMSM if their concerns about cost and anticipated stigma can be addressed and they can be supported in establishing effective medication adherence strategies, potentially including peer navigation for PrEP.

In regards to the age of participants, both those under the age of 18 [n = 2] and those between the ages of 18 and 24 [n = 30] endorsed similar sentiments across the six themes outlined above. Related to social stigma, both of the minor participants mentioned that stigma around PrEP and having multiple sexual partners exists amongst YMSM, and that it is likely to influence PrEP uptake and adherence, but went on to note that they had not personally experienced such stigma. One of these participants cited younger age as a reason for this lack of PrEP stigma, suggesting the perception that PrEP use and having multiple sexual partners may be more widely accepted among minors than among older individuals. As we are not aware of prior studies to suggest that YMSM who are minors have less stigma around PrEP use than older peers, further qualitative and quantitative studies to shed light on PrEP norms and experiences of PrEP stigma across the age spectrum for YMSM may be useful.

Cost as a barrier to starting and persisting with PrEP has been well-documented in studies with adults (Doll et al., 2018; Grant et al., 2014; Machado et al., 2017). Perceived high costs are likely to be even more detrimental to PrEP use among youth, who may have more limited financial resources and may face the additional barrier of needing to use parental insurance, which they may forgo to avoid inadvertent disclosure of PrEP use or sexual identity. Our findings indicate that YMSM may benefit from assistance with navigating these pre-disposing financial and insurance factors, such as support from health care providers and peer navigation, which could in turn increase PrEP uptake. Numerous patient-assistance programs exist to help individuals to access PrEP at low or no cost (Gilead, n.d.; HIV.gov, 2022), and the Affordable Care Act mandates that cost-sharing for PrEP (e.g., co-pays and deductibles) must be eliminated for patients who are commercially-insured beginning in 2021, which was after our study data were collected. As such, it will be important to obtain more current assessments of youths’ perceptions about cost as a barrier. Additionally, though these programs and mandates exist, it can still be difficult for navigate and access the appropriate resources, particularly as, in states outside of Massachusetts, insurance coverage is not guaranteed (Doblecki-Lewis et al., 2017). It is also important to note that, when the study was conducted, PrEP had not yet been FDA-approved for use with individuals under the age of 18 years (Centers for Disease Control and Prevention, 2022), though safety and adherence data to support its use in this age group were available (Hosek et al., 2017). Though the two study participants who were minors, one of whom was prescribed PrEP, did not describe any barriers specifically related to this lack of FDA-approval for their age group, it is possible that other adolescent MSM experienced difficulty in obtaining PrEP during this time or getting insurance to cover medication costs. Peer navigation could be an important for assisting youth in addressing these potential financial barriers.

Concerns about disclosure of PrEP use and being stigmatized for using PrEP pose additional barriers to PrEP use and adherence for YMSM (Arrington-Sanders, 2017; Machado et al., 2017; Santa Maria et al., 2019). Even among YMSM, a population for which PrEP can provide excellent health benefits, PrEP use may be stigmatized, which could disrupt adherence (Elopre et al., 2018; Maxwell et al., 2019). In our study, YMSM with suboptimal PrEP adherence noted that being in the presence of friends and family negatively impacted their ability or willingness to take PrEP, illustrating how concerns about anticipated stigma from friends and family interfere with adherence. Adolescents are at a developmental stage where social acceptance is prioritized, suggesting that tailored interventions to build confidence, normalize use of PrEP for youth, and address anticipated stigma around PrEP use will be important for this population. Additionally, for YMSM who are wary of disclosing PrEP use or taking PrEP in front of friends and family, a peer navigator could assist in developing feasible strategies for sustained adherence, such as planning to take the daily PrEP pill at a time when the individual is unlikely to be around others or exploring prolonged release PrEP options, such as injectable PrEP.

In addition to fear of stigma and disclosure with PrEP, YMSM in this sample noted that sexual behaviors would influence PrEP uptake and adherence. Those who reported being in monogamous relationships or not actively engaging in sex felt that starting PrEP or maintaining adherence were not of high importance. These observations correspond with prior studies among young adults in which self-perception of being at low risk for acquiring HIV may lead to primary and longitudinal non-adherence and cessation of PrEP use (Arrington-Sanders, 2017; Santa Maria et al., 2019). Conversely, participants in this sample who reported having more frequent sex or not being monogamous rated PrEP uptake and adherence as important for sexual health, which is again consistent with previous findings (van Dijk et al., 2020). As described in Fontenot et al. (2020), in this sample, relationship- and sexual activity-based risk appraisals were also utilized for decision-making around condom use. As condoms and PrEP appear to be utilized in similar ways, such as using perceived trust of partners in deciding whether or not to use these preventive interventions, even when sex with trusted partners could carry risk of HIV exposure, there is an apparent gap in HIV protection among YMSM.

Our findings suggest a need to provide YMSM with accurate and nuanced education around incidence of HIV transmissions in the context of various types of sexual relationships. It is important to note that discussions between partners about HIV risk, as well as utilization of relationship agreements (common among gay and bisexual men both in monogamous relationships and among those with multiple sexual partners), can greatly lower the risk of acquiring HIV (Feinstein et al., 2018; MacGibbon et al., 2022), but do not completely mitigate the risk. HIV transmission can occur among individuals with few or one (i.e., monogamous) sexual partnerships, and PrEP (with or without other prevention methods) can maximize HIV prevention when used during any periods when exposure to HIV may occur. This “seasons of risk” approach could be particularly helpful and efficacious for those who feel that their sexual risk is highly variable over time (i.e., they are engaging in sex inconsistently) and are unsure that continuous, daily adherence would be necessary or feasible (Elsesser et al., 2016; Haberer, 2016; Haberer et al., 2015). Peer navigation, with well-informed and relatable navigators, could be an effective way to help individual YMSM gauge their level of risk and select the appropriate HIV prevention strategies for their lifestyle and preferences, including potentially PrEP.

YMSM discussed the importance of specific approaches to help them remember to take PrEP, such as pill-taking routines and telephone reminders. Participants with and without PrEP experience suggested that pairing PrEP with a daily task, such as brushing teeth or eating lunch, would likely increase adherence. Integrating pill-taking into routine activities has been shown to be effective for daily medications, including PrEP (Bosworth et al., 2011; Grov et al., 2019; Maxwell et al., 2019). Additionally, establishing pill-taking routines is an integral part of LifeSteps, a brief adherence intervention based on cognitive behavioral therapy and problem-solving that has been shown to support PrEP adherence and is being adapted and tested for YMSM (ATN 158, n.d.; Biello et al., 2019). Thus, our findings suggest that clinicians who provide PrEP to YMSM should collaborate with youth to help them develop personal adherence routines.

Youth in our sample viewed peer navigation as a potentially helpful strategy to support PrEP uptake and adherence. Participants discussed a lack of medical providers who are knowledgeable about PrEP as a barrier to its use, as youth may not able to obtain all of the information that they wish to have before deciding about PrEP use and may therefore feel under-prepared for this pivotal decision. Youth suggested that peer navigators could complement providers’ roles in answering questions about the benefits and drawbacks of PrEP, which could be facilitated if navigators have more time and availability than medical providers and are trained on information about PrEP that is most pertinent for YMSM, including aspects of PrEP use that some providers might not be well-suited to address (e.g., social aspects of using PrEP). Though providers have been highlighted a key players in increasing HIV prevention uptake and adherence among youth (S. Hosek & Henry-Reid, 2020), having an easy-to-access and relatable source for additional information could help bridge gaps in knowledge for youth who either do not have access to knowledgeable providers or who do not feel comfortable asking their providers questions related to sex. Similarly, participants noted that peer navigators with an understanding of insurance systems and funding for PrEP would be welcome given their concerns about cost. These positive perspectives are consistent with the experiences of adult Black and Latina transgender women who successfully utilized peer navigation systems to remain adherent to PrEP (Nieto et al., 2021). Additionally, once on PrEP, YMSM thought that peer navigators could help them rehearse disclosure of PrEP use to family or friends, and for providing advice to navigating any PrEP stigma they may face, suggesting that peer navigation could improve PrEP use at multiple stages in the PrEP continuum of care from initiation to persistence.

The demographics and relatability of peer navigators were of the utmost importance to YMSM, who indicated that a navigator with similar characteristics or lived experience to them would better understand their feelings about sex and PrEP. Participants described the ideal peer navigator as a few years older than the participants and of similar sexual orientation, so they could draw upon their personal experiences in supporting youth on PrEP but still be young enough to relate to their clients. Black and Latino YMSM in the sample emphasized that the race and ethnicity of peer navigators may be particularly important, so they can relate to the unique considerations of being MSM of color, including experiences with racial discrimination in health care. The importance of peer navigators with sociodemographic representation of their clients is consistently documented in the literature for PrEP and HIV navigators, as well as in studies of peer navigation for other health conditions (Jaramillo, 2018; Pagkas-Bather et al., 2020). Finally, YMSM indicated a preference for navigators with experience taking antiretroviral medications and for navigation programs organized or led by youth. Our findings suggest that successful peer navigation programs for PrEP will be developed in collaboration with YMSM and tailored to match the populations served by specific health care organizations, to optimize relatability, trust, and engagement.

This study design has limitations. Interviews were conducted by individuals who are not members of YMSM communities, so important topics relating to PrEP for YMSM may have been inadvertently excluded. Though the interviewers received training in qualitative interview methods to reduce the chance of social desirability bias, and participants were assured that their responses would not impact the healthcare they receive, participants may not have been as candid as they might have been if talking to a peer. Additionally, given our sample size, we enrolled few YMSM who were under the age of 18 (N = 2, 6% of sample) or who were Black (N = 4, 13% of sample), despite underrepresentation of these groups in PrEP use nationally. Though we found few differences in opinions on PrEP and peer navigation among minor participants and those between the ages of 18 and 24, it is important to note that with so few minor participants, there are limits to generalizability. Thus, additional studies with these populations could enhance understanding of their specific needs, including concerns about disclosure to parents or caregivers for those under 18 years and experiences of racial discrimination among Black youth (Jaramillo, 2018). Our sample was also particularly knowledgeable about HIV prevention strategies and PrEP use, which contradicts extant literature on PrEP knowledge among YMSM. This discrepancy may be related to the organizations from which participants were recruited, as many of these venues were LGBTQ+- or healthcare-focused and might provide access to more thorough health information than is typical for community centers. Finally, our results are based on data from 2017 and are from a single jurisdiction, so our findings may not be generalizable to current populations of YMSM locally or in in other jurisdictions (e.g., rural/non-metropolitan settings), where social norms and access to health care and PrEP may differ, so additional and updated studies in diverse settings are needed.

In conclusion, this qualitative analysis details YMSM perceptions of PrEP use, facilitators and barriers to adherence, and peer navigation for PrEP. YMSM believe that PrEP can be an effective HIV prevention option but struggle with decisions about using PrEP, as they may perceive themselves to be at low risk for acquiring HIV based on their sexual behaviors or feel they do not have enough information about PrEP to make well-informed decisions. YMSM may also navigate challenges around financial barriers, disclosure, and stigma to initiate and adhere to PrEP. Youth recognize that routinizing pill-taking can improve adherence and express openness to peer navigation for addressing adherence barriers to PrEP, especially if peer navigators are relatable. Because more effective strategies are needed to address underuse of PrEP among YMSM, further research is needed on the feasibility, acceptability and impact of integrating peer navigation for PrEP into community healthcare settings for YMSM.