PrEP Disclosure Experiences of Gay and Bisexual Men in Guatemala

Abstract

Pre-exposure prophylaxis (PrEP) can reduce HIV transmission among gay and bisexual men (GBM). However, stigma can inhibit disclosure of PrEP use, which may limit uptake. This study’s purpose was to explore PrEP disclosure experiences and how disclosure is associated with PrEP adherence among GBM at a sexual health clinic in Guatemala City. We conducted in-depth interviews with PrEP users (n=18) and used an iterative content analysis approach. All participants had or planned to disclose their PrEP use to at least one person, most commonly friends and sex partners, though many were selective about who they told. Main reasons for disclosure were to educate others, gain social support, and clarify their HIV status. Concerns about stigma and emotional discomfort deterred disclosure. Disclosure facilitated PrEP access and adherence by enhancing emotional and instrumental support. Interventions providing opportunities for GBM to practice disclosure, including addressing others’ misconceptions, could promote PrEP uptake and adherence.

INTRODUCTION

Gay and bisexual men (GBM) in Guatemala are disproportionately affected by HIV. While the estimated national-level adult HIV prevalence is 0.5%, HIV prevalence among men who have sex with men (MSM) is 10.5% (1, 2). Within Guatemala, prevention efforts have traditionally focused on condom promotion and distribution (3); however, given the significant HIV disparities among GBM, additional prevention strategies are necessary.

When taken consistently, daily oral pre-exposure prophylaxis (PrEP) can substantially reduce the incidence of HIV (4). However, uptake of PrEP globally has been slow, and PrEP acceptability among MSM is only 58% worldwide (5). One of the main barriers to PrEP uptake and sustained use reported by GBM is PrEP stigma. PrEP stigma “…represents an expression of social power whereby people who use PrEP are differentiated from others and devalued because of their PrEP use” (6). PrEP stigma is rooted in several overlapping misperceptions including that all PrEP users have HIV, and that PrEP use necessarily reduces condom use and undermines prevention of HIV and other sexually transmitted infections (7). Another driver of PrEP stigma is the perception that all PrEP users are promiscuous (7, 8). PrEP stigma has been found to reduce interest in PrEP, inhibit comfort with discussing PrEP with a provider, limit PrEP uptake, and hinder PrEP adherence and persistence (6). Due to the intense targeting of PrEP for GBM and other MSM, a strong “conceptual association” between PrEP and these populations has developed (6). Due to intersecting forms of stigma, sexual minorities, like GBM, may experience PrEP stigma more strongly than other groups (6).

Among GBM, PrEP stigma can create a “PrEP closet” that reduces communication about PrEP, which is critical to facilitating awareness, acceptability, and uptake (9). Phillips et al. (2019) found that young MSM (16–31 years) living in Chicago who knew someone taking PrEP were more likely to have had a conversation with a medical provider about initiating PrEP and to have used PrEP in the last six months, thus demonstrating the potential for PrEP disclosure to promote PrEP uptake. PrEP disclosure has also been found to impact PrEP adherence. In a qualitative study of male partners’ influence on women’s PrEP use, disclosure was closely tied to PrEP adherence through the mechanism of social support. Specifically, disclosure was found to be a critical prerequisite for receiving support, which largely took the form of reminders from partners to take PrEP (10).

Social support networks can facilitate engagement with HIV prevention efforts like PrEP. A study among Black MSM in New York City found that normalization of PrEP use within peer social support networks helped to address HIV-related stigma, which study participants considered essential for increasing PrEP adherence and acceptability (11). In a qualitative study of the social networks of sexual minority men and transgender women in Guatemala, Tucker et al. (2014) identified that gay-identified men tended to live with their parents and siblings more than non-gay identified MSM and transgender participants, and that these family networks were a key source of their emotional and material support. Given this, they argued that family networks could play an important role in facilitating HIV prevention efforts for this population (12). However, access to social support can be limited when stigma and shame make it uncomfortable for GBM to discuss their sexuality and personal lives, including PrEP use (12).

Beyond social networks, another important space for PrEP disclosure is on dating applications (apps). Use of dating apps is common among MSM as platforms to meet sexual partners (13). Increasingly, these apps allow users to disclose PrEP use on their profiles, which can aid users in making more informed sexual choices (14). However, the few studies exploring PrEP disclosure experiences on dating apps have only reported disclosure prevalence and implications of disclosure for condom use. Medina et al. (2019) found in their survey of MSM presenting for HIV/sexually transmitted infection testing at a clinic in Rhode Island that 27% reported using the PrEP disclosure option on dating apps, 48% were more likely to contact a potential partner if they knew that they were on PrEP, and 61% would be more likely to use a condom for anal sex with a person who did not disclose their HIV status or PrEP use (14). In a study seeking to examine frequency of PrEP use disclosure among a national sample of MSM on dating apps Newcomb et al. (2017) found that of HIV-negative dating app users, 43% reported ever having been disclosed to on a dating app, and the majority had been asked by a potential partner who used PrEP to have condomless anal sex (15).

Developing a better understanding of factors that impact PrEP uptake and persistence, including PrEP disclosure, is particularly important within the context of Guatemala. In 2016, a community-based gay and bisexual men’s health and human rights organization, Colectivo Amigos contra el Sida (CAS), became the first PrEP clinic in the country, and to this day is the only site where PrEP is available in Guatemala (16). Although those who have accessed PrEP report high levels of satisfaction with clinic services and with PrEP itself, PrEP awareness and uptake is still low; in a 2018 survey of CAS clients, only 55% were aware of PrEP. At the start of recruitment for this study, there were approximately 43 individuals enrolled in the CAS PrEP clinic (16). As community-based clinics around the world aim to expand PrEP coverage, it is essential to understand barriers and facilitators to PrEP disclosure and the potential role it has on overall PrEP uptake, adherence, and persistence within distinct settings to generate transferable insights that can inform interventions in diverse settings.

The purpose of this study was to improve understanding of PrEP disclosure among GBM who use PrEP in Guatemala City. We aim to: 1) characterize PrEP disclosure experiences and 2) assess implications of disclosure for participants’ PrEP adherence and persistence.

METHODS

Study Context

In 2013, CAS started a social movement, including a series of participatory dialogues with different stakeholders to raise awareness and facilitate critical discussion about PrEP in Guatemala, and in 2016 opened a fee-based PrEP clinic within its community-based sexual health clinic (16). In 2019, CAS received funding from the Global Fund to provide PrEP free of charge. While PrEP became available free of charge at CAS a few months before the start of our interviews, the participants in our study were mostly a higher income group of “early adopters” of PrEP, who had the financial means to afford the cost of PrEP (about $77 US dollars per bottle for the brand-name and $45 per bottle for the generic) before it became free.

Study Design and Recruitment

We conducted formative qualitative in-depth interviews with individuals who had ever used PrEP (n=18) with the goal of better understanding the role of stigma in PrEP acceptability and uptake. Between November and December 2019, we recruited 18 PrEP users for semi-structured in-depth interviews (IDIs). In addition to being a PrEP user, eligibility included: 1) being at least 18 years old; 2) identifying as a gay or bisexual cisgender man; 3) being able to speak and understand Spanish; 4) having ever had sex with a man; and 5) not ever having had a positive HIV test. PrEP users were contacted when they came to the clinic or via phone and invited to participate in the study.

Data Collection

We developed a semi-structured interview guide to elicit participants’ perceptions of and experiences with PrEP and PrEP stigma and barriers and facilitators to PrEP acceptability and uptake. Participants were asked basic demographic information and about their lived experiences using PrEP, including to whom they have disclosed their PrEP use, why they had or had not disclosed their PrEP use to those within their social support networks and on dating apps (if applicable), reactions to these disclosures, and effects of disclosure (or lack thereof) on overall PrEP experiences.

Interviews were conducted in Spanish by three CAS staff members trained in qualitative research methods. Interviews were held in a private room at CAS, or in a mutually agreed upon location, and lasted on average one hour (range= 30 minutes to two hours). The study team monitored data saturation throughout the interviews and confirmed thematic saturation with 18 interviews when no new themes related to stigma and PrEP use experiences and perceptions were identified (17). All interviews were audio recorded and transcribed verbatim. During transcription, identifiable information was removed. Quality and accuracy of transcriptions were reviewed by the interviewers and checked against the audio recordings by SB. All participants provided informed consent before participating, and this study was approved by the Institutional Review Boards at [removed for peer review].

Analysis

An iterative, phased process was used to analyze the data. First, two of the authors, a bilingual English-Spanish PhD student with experience in qualitative analysis (SB) and a bilingual Spanish-English speaking physician with training in qualitative methods and public health (IC), wrote analytic summaries of each interview to gain a comprehensive understanding of participants’ experience and to develop codes. Conventional content analysis was used to guide coding of the data (18). An initial codebook was created which included topical codes based on the interview guide, such as “social support” and “PrEP stigma,” and interpretive codes, such as “perceived risk” and “fear.” The codebook was revised through discussion with the [removed for peer review]/CAS research team. To ensure the codebook was being applied in similar ways, SB and IC coded one transcript together and subsequently edited the codebook for clarity and consistency. The remaining transcripts were double coded using Dedoose, an online qualitative coding platform (19). The team resolved discrepancies and iteratively edited or added codes, which were then applied to transcripts that had already been coded. SB then wrote memos for codes related to disclosure (ex: “PrEP use disclosure” and “PrEP on dating apps”) to aid in identifying key factors related to disclosure. As part of this process, matrices of patterns of PrEP disclosure across participants were created, which served as the backbone of the results section. SB translated the quotes included in this article from Spanish to English, and these translations were verified for accuracy by IC. From the demographic data obtained at the start of each interview, SB calculated summary statistics, which are described below.

RESULTS

Results are presented in three sections: 1) participant characteristics and patterns of PrEP disclosure; 2) reasons for disclosure and non-disclosure; and 3) implications of disclosure on PrEP adherence and persistence.

Participant Characteristics and Disclosure Patterns

The median participant age was 38 years (range= 24–62). The majority of participants identified as Ladino/Mestizo (mixed Indigenous, European, and African ancestry) and gay or homosexual (83%). Most had completed either a university or post-graduate degree (77%), and all were working at the time of the interview, although monthly income varied significantly ($128-$12,802 US dollars). Over half (56%) had a primary partner, including two who were married to women. Only one participant reported having a partner who was living with HIV and none of the participants had partners who were also taking PrEP. In terms of living situation, 39% lived with a partner/spouse, 11% lived with a roommate, 28% lived alone, and 22% lived with their parents or other family members. The majority (72%) were born in Guatemala, three (17%) were born in other countries in South America, and one was born outside of South America. The median length of time taking PrEP was 12.5 months (range 2 to 56); two had initiated PrEP on the day of the interview. Two were not taking PrEP at the time of their interview, and eleven reported having stopped taking PrEP for some period of time in the past. See Table I for a full list of participant characteristics.

Table I:

Participant Characteristics

	Total (n=18) median (range) or n (%)
Age in years	38 (24–62)
Race
Ladino/Mestizo	7 (83)
White	2 (11)
Other	1 (6)
Sexual Orientation
Gay/Homosexual	15 (83)
Bisexual	3 (17)
Highest Education Level
High School	4 (22)
University	8 (44)
Post-graduate	6 (33)
Relationship Status
Single	8 (44)
Partnered	10 (56)
Living Situation
Alone	5 (28)
Parents and Other Family	4 (22)
Roommate	2 (11)
Partner/Spouse	7 (39)
Employment
Working	18 (100)
Monthly Income (USD)	$1,122 ($128–$12,802)
Months Taking PrEP	12.5 (2–56)
Stopped Taking PrEP at some point
Yes	7 (39)
No	11 (61)
Taking PrEP at time of interview
Yes	16 (89)
No	2 (11)

All participants were asked “to whom have you told (or would you tell) that you use PrEP?”. All participants had told (n=17), or planned to tell (n=1), at least one person about their PrEP use, although many were selective about who they told, telling only their close friends, sex partners, or a few family members. Participants most frequently described disclosing their PrEP use to friends (n=13) and sex partners (n=12), including seven participants who said that they had told “everyone”. Fewer participants explicitly reported disclosing or planning to disclose to a partner/spouse (n=6) or family members (n=4). The only participant who had not yet disclosed his PrEP use to anyone had initiated PrEP on the day of the interview and was planning to tell his partner that he had started taking PrEP. There were no noticeable differences in disclosure patterns between participants who had stopped taking PrEP (n=2) and those who were currently taking it (n=16). Of the 11 participants (61%) who reported using dating apps, ten posted that they used PrEP on their dating app profile.

Reasons for Disclosing PrEP Use

PrEP Education

The most common reason participants shared for disclosing PrEP use was to educate others within their networks and larger communities about PrEP. Participants who had friends who were living with HIV or had experienced the impact of HIV within their social networks felt an obligation to reduce the spread of HIV, which motivated disclosure of their own PrEP use to educate other friends or acquaintances who they perceived as being vulnerable to infection. Participants reported PrEP disclosure as a form of overall PrEP promotion and as a way to correct misperceptions about PrEP.

Participants took on the role of “PrEP promotor” both because they desired to promote PrEP as an option for others and because they wanted to further protect themselves from HIV by increasing PrEP uptake among their sex partners. One participant described an experience educating and disclosing his PrEP use to his friends,

“Twice this year someone told me, ‘no, I had this risky thing, and well’…So, yes I have given information [about PrEP] I think to two friends, [I say], ‘Look I got it in this place, it cost me this’…So yes like that I tell them my experiences…because they have told me similar situations to mine” (1.5-year PrEP user, single).

In cases like this one, participants’ goals were to provide their friends and sexual partners with general education and information about accessing PrEP, given that the majority of these individuals had not heard about it before. Many participants’ friends and sexual partners liked the idea of PrEP when they learned about it:

“I told…three co-workers and one of them told me he is interested in coming to…coming to start the process…He already knew a little about PrEP, but the fact that I have, I have already done it motivated him more to want to do it” (1-day PrEP user, single).

This participant, who had told his co-workers that he had initiated the process of taking PrEP, reported that following this conversation, his co-worker started taking PrEP, highlighting how disclosure facilitated uptake.

Some participants reported feeling a sense of responsibility to disclose their PrEP status on dating apps (to encourage greater PrEP uptake among others) while also discussing the need for more transparency of PrEP status on these platforms. Beyond disclosing to a potential partner, apps were viewed as providing an opportunity to expand overall PrEP awareness. One participant felt strongly about the importance of the disclosure function, as he viewed adding his PrEP use status to his social media profiles (“PrEP add ok”) as part of his activism around PrEP, and had himself learned about PrEP on a dating app:

“On Grindr, yes. And on my social media I also put ‘PrEP add ok,’ which is like doing advocacy for PrEP. I take the theme of PrEP as part of my mission as an activist” (4.5-year PrEP user, single).

Participants also described situations in which they were able to responsively correct PrEP misperceptions and dispel PrEP stigma through their disclosure experiences. This included helping to educate family members and friends regarding overall PrEP safety and to combat misinformation (e.g., using PrEP did not mean one was HIV-positive) and stigma (e.g., PrEP use did not mean one was promiscuous). One participant, who was married and had been taking PrEP for four years, described his experience with these misperceptions about PrEP,

“Most did not know what PrEP was, I had to explain it to them. Everyone, the majority associate PrEP with promiscuity. You have to, have to go about educating them.”

Multiple participants reported that due to their sexual partners’ concerns about PrEP, they would spend time with the partner researching PrEP together, explaining how it works, or sharing online resources. A few participants reported showing their negative HIV test results or PrEP pills to their sexual partners, which they reported allayed the partner’s concerns:

“As long as the person is with me [I tell him], ‘well look here is my proof I am on PrEP’, I teach him and everything is ok” (11-month PrEP user, partnered).

This participant described how during in-person disclosures to sexual partners he provides them with “proof” that he takes PrEP, which makes them feel more comfortable having sex with him.

Time taking PrEP influenced comfort with having discussions about PrEP, as participants who had taken PrEP longer often reported being less affected by experiences of PrEP stigma and attributed negative and stigmatizing responses to ignorance about PrEP, rather than as a personal attack.

Social Support

A second reason why participants disclosed their PrEP use was to gain support from family, friends, or partners, though individual experiences and actual support received were mixed. During the interviews, participants were asked to describe their relationships with the people who were most important to them. Overall, participants were more likely to disclose to people with whom they had a “strong” connection (a connection that they described as foundational to their social support network), and participants who did not describe close relationships with friends or family were less likely to have disclosed to them. Additionally, the strength of these relationships was not necessarily predicated on acceptance of the participant’s sexual orientation by the individual in their support network. However, participants who had previously disclosed their sexual orientation to members of their social network reported that as a result of this disclosure, they had time to gain acceptance, and thus disclosure of their PrEP usage came naturally (as opposed to potentially outing their sexual orientation, which is a fear described below). As one two-year PrEP user commented,

“I am 53 so it’s now not an issue…now 20 years have passed [since coming out] …I have a perfect relationship with all of the people that know that, that I am gay” (single).

Among the small number of participants who disclosed their PrEP use to their families, many reported that the reason for this disclosure was because their families were the foundation of their support network. While all of the participants who had disclosed to their family members reported that they accepted their PrEP use, for some, this acceptance was more of a resignation rather than celebration. However, disclosure still gave their family “mental peace” knowing that they were protecting themselves from HIV.

In general, participants who had disclosed their PrEP use to their friends reported positive reactions. Some participants reported only disclosing to their closest friends because they viewed their PrEP use as personal and needed to develop trust with a person before telling them. Others chose to disclose to specific friends who they knew were also PrEP users and/or had told them about PrEP. Telling these friends made them feel that they were part of a broader group of PrEP users, which increased their comfort with future disclosures, as reflected by one participant,

“…it’s beautiful to know that you’re not…you’re not alone, in any situation in life” (2-month PrEP user, single).

Participants who disclosed to their long-term partners generally did so due to the trust that they had built, although participants’ partners’ support of their PrEP use was mixed. One participant described how his spouse did not support him taking PrEP because he did not understand why he wanted “to take antiretrovirals to prevent taking antiretrovirals.” In contrast, another participant described how his partner supported his PrEP use, “because we already know that we are both doing things like that outside [the relationship]” (1.5-year PrEP user, not currently taking PrEP). Although they did not discuss their sex lives outside of the relationship in detail, because his partner felt that their sexual activities increased their risk of HIV, he reacted well to the disclosure.

Clarification of HIV Status

The last reason for disclosure was, as one participant stated, “a sign to everyone that I am HIV negative” (2-year PrEP user, partnered). Participants reported two main reasons for clarifying their HIV status. First, disclosure of PrEP use allowed participants to combat assumptions that they were HIV positive because of their sexual orientation. Second, disclosure of PrEP was seen as a means to make partners or sex work clients feel safer with them and to prevent accusations of having transmitted HIV. One participant who engaged in sex work described a typical disclosure conversation with his clients,

‘“look, we [can] have sex with, with, or without [condoms] you know’ and well ‘why with [or] without, but are you completely healthy?’ ‘well of course, I am on PrEP’ I give them information and they are trusting’” (11-month PrEP user, partnered).

Other participants similarly reported that their disclosures reduced their sexual partners’ concerns that they might have HIV, which in some cases made these partners feel more comfortable having sex without condoms. This positive reaction from sexual partners surprised some participants, who had initially expected to experience rejection.

Reasons for Non-disclosure

The main reasons participants gave for not disclosing their PrEP use was fear of “outing” their sexual identity and behaviors, concerns regarding experiencing stigma or rejection, and discomfort discussing topics related to sex.

Fear of Outing

Fear of “outing” related to their sexual identity was particularly prevalent among bisexual participants while fear of “outing” related to sexual behaviors was most often mentioned by those participants who were engaging in sexual activities outside of their primary relationships. One participant, who was married to a woman, and had taken PrEP for a little over a year, told his wife that the purpose of his PrEP use was to “strengthen his immune system” because she did not know that he was having sexual encounters with men. Another participant, who identified as bisexual, stated,

“…everyone knows me as the lawyer [name] and the man who is married, who has a family, etc.…so possibly because of that…I have only told the closest people” (7-month PrEP user, partnered).

Additionally, participants who did not want others, including current or former sexual partners, to know about their sexual activities, tended not to tell these individuals, or those outside of their close confidants, about their PrEP use. Finally, one individual who took PrEP because his partner was HIV positive did not disclose his PrEP use widely out of a fear of “outing” his partner’s HIV status.

Concerns about Stigma

Fear of stigma also influenced participants’ decisions to disclose their PrEP use. Fearing judgement when discussing matters related to sex or sexual orientation, which largely stemmed from religious beliefs, impacted participants’ disclosure decision-making. In response to a question about why he did not share his PrEP use with others, one participant commented,

“Guatemala is a Christian country…and not everyone has the capacity to accept [homosexuality]...I assure you that the moment [PrEP] begins to spread or, or...or to transmit itself more to people, there will be many people who are against it” (2-month PrEP user, single).

Participants who had experienced rejection due to their sexual identity often had not disclosed their PrEP use to individuals in their social network. For some of these participants, their family continued to support them after their disclosure of their sexual orientation; however, due to their family’s religion-based views of homosexuality, they did not discuss matters related to their sexual identity and activity with them and did not consider themselves to be living openly as a GBM with them. In turn, this appeared to impact their decisions to disclose their PrEP use to their family.

Disclosure Discomfort

Finally, among participants who specifically stated that they had not disclosed their PrEP use to their friends or sexual partners, the main reason for this lack of disclosure was fear of discomfort during disclosure, specifically that it was not appropriate or necessary to talk about PrEP with them. As one participant related,

“… it is not something, it is not a subject ‘what’s up, how are you? look I’m taking PrEP,’ I mean, no” (2-year PrEP user, partnered).

Due to this discomfort, one participant reported telling his steady sexual partners about his PrEP use, but not his occasional partners. For some participants this disclosure avoidance stemmed from the fact that they viewed PrEP use as a form of personal protection, which they did not feel a need to share with their sexual partners. This view that PrEP use, and sexual protection in general, was personal was also a reason provided by some participants for not disclosing to family members who they were not close to or who they did not think would understand what PrEP was or care that they used it.

Implications of PrEP Disclosures

PrEP use disclosure had implications for participants’ access to PrEP as well as their subsequent adherence and persistence. One participant who had been taking PrEP for almost five years (the longest of all study participants) shared that his mother lends him money to buy PrEP when he cannot purchase it. He reported gaining his parents’ full support of his PrEP use through education, and their support, both emotional and instrumental, and willingness to have open discussions about PrEP encouraged his PrEP persistence. Another participant, who lived in a neighboring country and traveled to Guatemala for PrEP, described how his father offered him support during his trips to obtain PrEP:

“…in fact, my dad told me, ‘why are you going to Guatemala?’ ‘to get my pills to keep me from contracting HIV,’ I told him like that, but super open…and my dad [said], ‘ok, be careful, let me know if anything comes up’” (4-month PrEP user, partnered).

Because his family was supportive of his PrEP use, this participant could display his medication openly in the house he shared with his parents. Similarly, because one participant’s friends supported his PrEP use, he described how they joked with him when his PrEP alarm goes off, “it’s time for your pill!” and that it was not something he needed to hide from them. In contrast, one participant reported that because he had not disclosed his PrEP use to his ex-partner (with whom he still lived), because he did not want him to know about his sex life, he had to hide his medications, and this resulted in inconsistent adherence. Finally, one participant described how his partner, who was living with HIV, paid for half of his PrEP costs. Further, in this case, disclosing his PrEP use to his partner encouraged adherence because they helped each other take their medications:

“…sometimes we go out and we forgot to bring the pill with us or something like that then sometimes if 10 or 15 minutes pass or…or it’s like: ‘did you already take the pill?’ or he asks me: ‘and your pill where is it or did you bring it?’” (4-month PrEP user, partnered).

Having someone who could assist participants in paying for the cost of PrEP was particularly important for both their PrEP access and persistence, as nearly all (n=16) reported that the cost of PrEP (at the time of the interview) was a major barrier to PrEP use among GBM; one participant described access to PrEP as a “privilege.” Although cost was not mentioned as a reason for disclosure, financial assistance from family or partners that was provided following disclosure helped some participants afford the cost of PrEP.

Although participants perceived that dating app disclosure had positive educational outcomes, such as disseminating fact-based information about PrEP and increasing PrEP uptake among GBM, they also expressed concerns about unintended consequences of the ability to disclose PrEP use on app profiles. They described perceiving that the PrEP disclosure function on dating apps led to increased mistrust and stigma due to over reporting of PrEP use among users. Specifically, about a third of participants thought that other men lied about their PrEP use on dating apps. Reflecting this, one participant said, “everyone takes PrEP,” even when they do not know what PrEP is. Another reason why participants felt that disclosure of PrEP use was inaccurately reported was because they perceived that app users confused PrEP with antiretroviral therapy taken to treat HIV or, in some cases, were being deceptive about their medications. As a result, one participant described how when he sees that someone takes PrEP on their dating profile, he immediately thinks that they are living with HIV,

“I have seen people eh that are in my network and I know the diagnosis of these people…and they say that they are negative and use PrEP. Obviously, I know that they don’t use PrEP, what they take are antiretrovirals...so on profiles that say I take PrEP, I also am going to think that they have HIV and they are also lying” (4.5-year PrEP user, single).

Thus, participants reported an inherent distrust of those reporting PrEP use on apps, even for those individuals who were actual PrEP users. Participants also perceived that posting PrEP use status was fueling PrEP stigma that PrEP users were promiscuous and/or unconcerned with sexually transmitted infection risks. Two participants had specifically been asked on dating apps if because they take PrEP, “we would have sex without condoms?” Another participant reported that it bothered him when he saw on profiles, “I take PrEP and I like to do it without condoms” (2.5-year PrEP user). This participant felt that these individuals were using the PrEP posting function to spread the idea of a “PrEP whore” within the LGBTQ community and were giving PrEP users “a bad reputation,” in addition to spreading the idea that there are no health risks when having sex without a condom with someone who takes PrEP. Due to these concerns, a few participants reported using techniques to figure out if dating app users were actually taking PrEP, such as asking about the color of their pills or asking to see their pill bottles.

DISCUSSION

The goal of this study was to better understand PrEP disclosure experiences and the implications of disclosure for PrEP use. We found that all participants had disclosed, or planned to disclose, to at least one person, although some participants only chose to disclose to the people with whom they were closest, or they knew would not judge them. Participants were motivated to disclose their PrEP use to educate others, gain social support, and clarify their HIV status, while fear of negative disclosure consequences was the main reason that participants did not disclose their PrEP use. Some participants chose to take on the active role of “PrEP promotor,” spreading awareness about PrEP both online and in-person, while others took on an educational role in response to misperceptions and stigmatizing comments about PrEP that they experienced from sexual partners and friends.

While fear of stigma kept some participants from disclosing their PrEP use, participants who were able to directly address this stigma during one-on-one conversations were often able to change their sexual partner or friend’s perceptions about PrEP. We also identified stigma among PrEP users of other PrEP users who identified a preference for condomless anal sex on dating apps, as they believed that this perpetuated PrEP stigma. Pantalone et al. (2019) also found strong internalized stigma against condomless sex among PrEP-using GBM (20). Future studies should examine how stigma related to condomless anal sex among PrEP users impacts sexual health communication within this population.

Chaudoir et al. (2011) created a Disclosure Process Model to understand when and why disclosure of stigmatized identities can be beneficial for the individuals who live with these identities (21). Their model posits feedback loops resulting from disclosure, specifically that people living with HIV who have a positive disclosure experience will become increasingly open about their HIV status, while individuals who have negative disclosure experiences will become increasingly concealed. Building off of this model, our study also identified feedback loops related to PrEP disclosure. For many participants, disclosure was tied to having strong support networks, and in general, participants reported that they had positive experiences disclosing to individuals in these support networks. These positive disclosure experiences fed into a positive disclosure feedback loop as many of these individuals (particularly those who had taken PrEP for longer and had developed more comfort with disclosure overtime) took on the role of “PrEP promoter,” continuing to disclose their PrEP status beyond their social support network, disseminating information about PrEP, and encouraging PrEP uptake among others. Especially in the context of Guatemala where PrEP access is still relatively new and knowledge about PrEP among GBM is not yet widespread, these positive disclosure feedback loops may play an important role in the dissemination of PrEP knowledge.

Additionally, we found that individuals who feared negative reactions to their disclosure avoided disclosure altogether or selectively disclosed to individuals who they knew would react well to their disclosure, circumventing the negative feedback loop described in the Disclosure Process Model. Even when these individuals initially reacted negatively to these disclosures, participants were often able to turn these experiences positive through education. However, fear of negative disclosure consequences for some participants led to almost complete concealment. Participants who did not disclose their PrEP use were unable to tap into the positive benefits of disclosure experienced by some PrEP users; however, they may have avoided the potential negative consequences that participants described fearing. In Guatemala, heterosexism and intersectional stigma and discrimination contribute to HIV vulnerability among GBM, including by reducing PrEP uptake and disclosure conversations (22). Future research should seek to better understand the implications of non-disclosure on PrEP adherence and access, and to further examine the positive feedback loop of PrEP disclosure described above.

Moreover, this study identified the importance of supportive relationships for encouraging PrEP disclosure and adherence. A study of social networks among GBM in Guatemala City called for HIV prevention efforts that foster GBMs’ strong ties (which can provide them with support) and weak ties (which bridge social networks and can expose individuals to new ideas) (12). This recommendation resonated with our current findings that demonstrate the importance of strong ties for encouraging PrEP adherence through disclosure and weak ties for encouraging increased PrEP uptake through disclosure. Studies have found that engaging PrEP users as advocates within their social networks is a promising intervention to increase PrEP use among GBMSM (12, 23, 24). As some PrEP users in Guatemala are already informally employing this technique, an intervention that creates a network of PrEP users, fostering both strong and weak ties, and empowers them to practice PrEP disclosure, including addressing PrEP misconceptions and stigma, could be particularly effective in increasing PrEP uptake. Given the benefits we found of disclosure on PrEP persistence, this intervention could encourage dialogue about overcoming challenges for continued PrEP use among GBM who do not feel comfortable disclosing their PrEP use to individuals in their direct support network, due to the fears described above.

Given how widely participants cited using apps to connect with sex partners, a platform or app could be particularly impactful in promoting PrEP uptake and disclosure. A systematic review of mobile apps to promote PrEP adherence and uptake found a total of 11 apps currently available for free, although only two of these apps were specifically targeted for MSM and none included PrEP disclosure components (25). An additional method for encouraging PrEP disclosure and dissemination could be through already existing apps. As our results indicate that dating apps in Guatemala City were venues for both PrEP education and PrEP stigma perpetuation, there is a need to provide more guidance to PrEP users on how to best utilize these platforms to dispel PrEP misperceptions. Virtual support groups and adherence clubs for PrEP, which have been identified as possible strategies for reducing barriers to in-person meetings, could be implemented to improve skills and confidence in PrEP disclosure, increase resilience to PrEP stigma, and support PrEP adherence (26–28).

There are several limitations of this study. PrEP users who decided to participate in the study may have been those who were more comfortable talking about their PrEP use and could have been more likely to disclose their PrEP use or have had different disclosure patterns than other PrEP users. Given that our participants belong to a group of “early adopters” of PrEP in Guatemala, their experiences and perspectives may be distinct from later PrEP adopters who are only able to access PrEP now that it is free or who may not identify as strongly as PrEP promoters. Additionally, one participant had not yet told anyone that he was taking PrEP (as he had initiated PrEP use that day), so he could only comment on to whom he was going to disclose. During the interviews, participants were only asked to whom they had disclosed without probing on specific groups of individuals. This approach was consistent with our inductive approach of eliciting information about disclosure experiences but may have limited the precision of our reporting of disclosure patterns, though we do not consider this to be a serious limitation. Finally, participant interviews relied on self-reported disclosure behaviors, which could have been influenced by social desirability bias. This bias could have encouraged participants to overreport use of disclosure for educational purposes and underreport negative disclosure experiences.

CONCLUSIONS

Multiple factors, including PrEP education, social support, clarification of HIV status, and fear of disclosure consequences, influence PrEP disclosure decisions among GBM in Guatemala. Additionally, disclosure has important implications for PrEP users’ adherence and PrEP uptake within their social networks. Given these findings, developing interventions to help PrEP users with the disclosure process and strengthening of their support networks, which could include providing GBM with either an in-person or online platform to practice PrEP disclosures with each other, and addressing and dispelling misconceptions about PrEP, could positively impact their sexual health and contribute to population-level HIV prevention and control.