PrEP perception and experiences of adolescent and young gay and bisexual men: an intersectional analysis

Percepção e experiências da PrEP de homens gays e bissexuais jovens e adolescentes: uma análise interseccional

Percepción y experiencias de la PrEP de adolescentes y hombres jóvenes gais y bisexuales: análisis interseccional

Abstracts

Studies indicate gaps in knowledge about the barriers to access and adhere to HIV pre-exposure prophylaxis (PrEP) in adolescents. In this article, we explore the perceptions and experiences of young gay, bisexual, and other men who have sex with men (YGBMSM) of the search, use and adherence to PrEP, considering their positions according to social markers of difference such as race/skin color, gender, sexuality, and social status. Intersectionality provides theoretical and methodological tools to interpret how the interlinking of these social markers of difference constitutes barriers and facilitators in the PrEP care continuum. The analyzed material is part of the PrEP1519 study and is comprised of 35 semi-structured interviews with YGBMSM from two Brazilian capitals (Salvador and São Paulo). The analyses suggest connections between social markers of difference, sexual cultures, and the social meanings of PrEP. Subjective, relational and symbolic aspects permeate the awareness of PrEP in the range of prevention tools. Willingness to use and adhere to PrEP is part of a learning process, production of meaning, and negotiation in the face of getting HIV and other sexually transmittable infections and the possibilities of pleasure. Thus, accessing and using PrEP makes several adolescents more informed about their vulnerabilities, leading to more informed decision-making. Interlinking the PrEP continuum of care among YGBMSM with the intersections of the social markers of difference may provide a conceptual framework to problematize the conditions and effects of implementing this prevention strategy, which could bring advantages to HIV prevention programs.

Keywords:
Adolescent; Pre-Exposure Prophylaxis; HIV; Intersectionality; Sexual and Gender Minorities

Os estudos revelam lacunas no conhecimento sobre as barreiras ao acesso e à adesão à profilaxia pré-exposição do HIV (PrEP) em adolescentes. O artigo explora as percepções e experiências de jovens gays e bissexuais e outros homens que fazem sexo com homens (JGBHSH) na busca, uso e adesão à PrEP, considerando suas posições de acordo com marcadores sociais de diferença como raça/cor da pele, gênero, sexualidade e nível social. A interseccionalidade fornece suporte teórico e metodológico para interpretar de que maneira a interconexão desses marcadores sociais de diferença constitui barreiras e facilitadores no continuum de cuidados. O material empírico faz parte do estudo PrEP1519 e consiste em 35 entrevistas semiestruturadas com JGBHSH de duas capitais brasileiras (Salvador e São Paulo). As análises identificam conexões entre marcadores sociais de diferença, culturas sexuais e os sentidos sociais da PrEP. Aspectos estruturais subjetivos, relacionais e simbólicos permeiam o conhecimento da PrEP dentro do leque de possibilidades de prevenção. A disposição de usar e aderir à PrEP faz parte de um processo de aprendizagem, produção de sentido e negociação frente ao risco de HIV e de outras infecções sexualmente transmissíveis e as possibilidades para obter prazer. O conhecimento, acesso e uso da PrEP fazem com que muitos adolescentes estejam mais informados sobre suas vulnerabilidades, resultando em decisões com mais informação. A interconexão do continuum de cuidados em PrEP entre JGBHSH com as intersecções dos marcadores sociais de diferença pode fornecer um arcabouço conceitual para problematizar as condições e os efeitos da implementação dessa estratégia preventiva, com o potencial de trazer vantagens para os programas de prevenção do HIV.

Palavras-chave:
Adolescente; Profilaxia Pré-Exposição; HIV; Interseccionalidade; Minorias Sexuais e de Gênero

Los estudios muestran que existen lagunas en el conocimiento sobre las barreras para acceder y adherirse a la profilaxis preexposición contra el VIH (PrEP) en el segmento adolescente. En este artículo, exploramos las percepciones y experiencias de jóvenes gays, bisexuales, y otros hombres que mantienen sexo con hombres (JGBHSH) sobre la búsqueda, uso y adherencia a la PrEP, considerando sus posiciones respecto a los marcadores sociales de las diferencias tales como: raza/color, género, sexualidad y estatus social. La interseccionalidad aporta apoyo teórico y metodológico para interpretar cómo la interrelación de estos marcadores sociales de la diferencia constituye barreras y facilitadores en el continuum del cuidado por PrEP. El material empírico analizado es parte del estudio PrEP1519 y comprende 35 entrevistas semiestructuradas con JGBHSH, procedentes de dos capitales de estados brasileños (Salvador y São Paulo). Los análisis apuntan conexiones entre marcadores sociales de la diferencia, culturas sexuales, y los significados sociales de la PrEP. Aspectos estructurales subjetivos, de relaciones y simbólicos permean la concientización de la PrEP en el rango de las posibilidades de prevención. La voluntad de utilizar y adherirse a la PrEP es parte de un proceso de aprendizaje, producción de significado, y negociación frente al riesgo de VIH y otras enfermedades de trasmisión sexual, así como la posibilidad de obtener placer. Tener conocimiento sobre el acceso y uso de la PrEP consigue que muchos adolescentes estén más informados sobre sus vulnerabilidades, logrando una toma de decisiones más informadas. Interrelacionar el continuum de la atención PrEP entre JGBHSH con las intersecciones de los marcadores sociales de diferencia tal vez pueda proveer un marco conceptual para problematizar las condiciones y efectos de implementar esta estrategia de prevención, lo que podría traer ventajas para los programas de prevención del VIH.

Palabras-clave:
Adolescente; Profilaxis Pre-Exposición; VIH; Interseccionalidad; Minorías Sexuales y de Género

Introduction

Despite the efforts undertaken by organized civil entities, government institutions, and international organizations against the HIV/AIDS epidemic in Brazil and worldwide, it continues to affect social minorities, especially men who have sex with men (MSM), travestis, and transgender women ¹. Brazil has the highest incidence of HIV cases in Latin America, with the epidemic concentrated among these groups, which are strongly stigmatized ².

Clinical and demonstration studies have shown that no single prevention method or strategy effectively controls HIV ¹. Thus, the perspective of combined prevention has become an important option ³. Part of the set of methods for combined prevention, HIV pre-exposure prophylaxis (PrEP), consists of using antiretroviral drugs to reduce the risk of possible infection via sexual exposure. Several studies have demonstrated the safety and effectiveness of PrEP among different groups, such as MSM ^4,5.

Although the studies on the use of PrEP among MSM have increased in Brazil, including those with a qualitative approach ⁶ some questions have not yet been sufficiently investigated. One of these is if and how PrEP changes the sexual cultures and choice of sexual partners; the values, stigmas, and other effects resulting from PrEP being brought into the daily users’ lives and their relationship networks; and understanding how social markers of difference affect the search for, access to, and continuity of the use of prophylaxis, and may even produce barriers to its implementation ^7,8. The prolonged and daily use of PrEP, acceptability of the method by groups vulnerable to HIV, and the experiences of the stigma of AIDS are also significant but have not been much explored ⁹.

As for adolescent MSM, the barriers to effective PrEP adoption include medical mistrust ¹⁰, lack of guidance and prescription by professionals, and uncertainties about the PrEP protocol.

To elucidate the barriers and facilitators to the access, use, and adherence to PrEP and to propose interventions to mitigate these adversities, some authors propose the PrEP continuum of care model. In this model, PrEP use can be summarized in three main stages: identifying the most vulnerable individuals at risk of acquiring HIV; enabling knowledge and identifying individuals willing to use prophylaxis; and enabling access to services and monitoring adherence, reducing inappropriate use and ceasing of PrEP ^11,12.

Thus, we face a wide range of challenges in implementing combined prevention strategies that are ethically engaged, politically committed, and culturally sensitive to the life contexts of adolescents and young people, highlighting the need for a greater understanding of the sociocultural contexts of these groups, considering their diversity and differences. Regarding the PrEP care continuum, it is crucial to consider how adolescents and young people position themselves in their relational networks, using different social markers of difference as a reference.

The literature on combined prevention and PrEP has increasingly incorporated the perspective of intersectionality ^13,14, which presupposes the intersection of social markers of difference. We consider these social markers as previously constructed and crystallized, establishing dynamics of exclusion - to a greater or lesser extent - of specific populations, depending on their positions in the intersecting classificatory systems of gender, race, color, sexuality, and age, among others. Thinking about and incorporating these relational dynamics through intersectional approaches can critically stimulate HIV prevention research, contriute to articulating proposals that fight against inequalities, and maintain an epistemological vigilance in the sense of not forgetting the crossings that frame the processes of health, illness, and disease.

Here, intersectionality rests on contemporary critical feminist theory, originating from gender, race and sexuality studies by authors such as Collins & Bilge ¹⁶ and Cho et al. ¹⁷. This perspective perceives the intersection of social markers of difference in a non-hierarchical, dynamic, and flexible way, considering, especially socio-historical contexts, situational power relations, and structural processes of oppression and privilege ¹⁵.

In the field of sexually transmitted infections (STIs) prevention for male segments, including gay men and other MSM, the intersectional perspective has numerous applicabilities but is still little used as a guiding framework. Research designed to capture the influence of intersecting social markers of difference can identify substantial inequalities, as in the circulation and collection of information on prevention methods, in the use of materials and access to health services, in the low perception of individual risk in exposure situations, as well as in other situations that increase men’s vulnerability to HIV/STIs ^18,19,20. In this sense, this article aims to explore by an intersectional approach, the perceptions, and experiences of young gay, bisexual, and other men who have sex with men (YGBMSM) of the search, use, and adherence to PrEP, considering the intersecting social markers of difference and how they constitute barriers and facilitators to the care continuum.

Methodological considerations

This article analyzes data produced in the PrEP1519 study, a cohort aimed at demonstrating the effectiveness of daily modality oral PrEP among adolescent MSM and MTF (male-to-female) aged 15-19. The study was implemented in three Brazilian state capitals - Salvador (Bahia State), São Paulo, and Belo Horizonte (Minas Gerais State) - between 2019 and 2021. Participants are recruited using several strategies. These recruitment occurred by face-to-face and virtual social networks/application program actions, either by peer educators, nongovernmental organizations, by referrals from friends or family, or even by one referral health care service. The participants joined the study following multiprofessional clinical assessment and testing, and they received the option of prevention combined with PrEP (PrEP component) or without PrEP (non-PrEP component). More methodological information can be found in Dourado et al. ²¹.

From July 2019 to July 2020, we conducted semistructured interviews with participants from the PrEP and non-PrEP components, which were living in Salvador and São Paulo. Data were collected face-to-face in the services offering PrEP (July 2019 and February 2020) and virtually, using apps and online platforms (February to April 2020) due to the COVID-19 pandemic. The interviews lasted for one hour on average and were recorded, transcribed, and coded using Nvivo 12 software (https://www.qsrinternational.com/nvivo/home).

In total, 35 interviews with YGBMSM were selected for analyses - of which 30 were part of the PrEP component, and five of the non-PrEP component - whose narratives could be explored in depth according to the social markers of difference identified by the participants. All interviewed participants in the qualitative component of the study were not PrEP users before recruitment. Following the perspective of intersectional analysis ²², a diversity of social markers of difference (skin color, sexual orientation, gender identity, and social status) in the participants in the two components of the study (PrEP and non-PrEP) were sought. The research teams were composed of homosexual and heterosexual people, cisgender women and men, and one transgender woman, as well as a diversity of race/skin color, with a minority of black researchers.

With the interviews, the research team attempted to identify the perceptions of the process of arriving at the services offering PrEP, and the motivations and experiences of using prophylaxis, including the challenges and possible difficulties in participating in the study and continuing to use the method.

The PrEP1519 study was approved by the Research Ethics Committees of the University of São Paulo (protocol n. 70798017.3.0000.0065) and the Federal University of Bahia (protocol n. 01691718.1.0000.5030), meeting the norms of Resolutions n. 466/2012 and n. 510/2016 of the Brazilian National Health Council. The informed consent form was offered to and signed by all adolescents aged 18 years or older. For those under 18 years, we obtained: (1) the parents’ or legal guardians’ signature on the consent form, followed by the adolescent’s signature on the assent term; or (2) the adolescent’s signature on the assent term after an assessment by team members regarding vulnerabilities, disruption of family ties, or risk of physical, moral, or psychological violence due to sexual orientation or gender identity.

Considering intersectionality from a theoretical-methodological perspective, we worked with Abrams et al. ²² and Hancock’s ²³ presuppositions that intersectional empirical analyses should consider the following: (1) More than one social markers of difference; (2) That attention should be given to all relevant social markers of difference, considering that relations between them are variable, and empirical questions are open ones; (3) That intersections between social markers of difference are neither a simple sum of parts nor can the weight of each of them be considered in any given context a priori; (4) That social markers of difference are conceptualized as dynamic productions of individual/institutional factors.

In the analysis of the empirical data, we sought to identify and understand the interactions among social marker of difference in the themes selected, and the analysis of those themes based on the stages of the PrEP care continuum. The dynamics of these markers are not mere aggregations of categories interacting independently of each other by arithmetic adding and subtracting momentum, but an interrelationship situated in a particular economic, political, and symbolic context. The steps taken for the intersectional thematic content analysis were the following: (1) Establishing the themes of analysis based on the interview script and the appropriation of the empirical material produced; (2) Synthesizing the themes based on the three steps of the PrEP care continuum (the knowledge and willingness to use prophylaxis; access to the health service and the possibility of receiving the prescription; adequate use by adherence to prophylaxis) ^12,24; and (3) Interpreting the thematic synthesis based on the social markers of difference considered (gender identity, sexuality, race/skin color, and social condition) and their interrelationship in creating barriers or facilitators to the process of searching, using and adhering to PrEP.

Results and discussion

Out of the 35 participants interviewed, 18 were from Salvador and 17 from São Paulo. The average age was 19 years old, ranging from 16 to 20. At the time of the interview, most participants (30) were on PrEP (PrEP component), and five had chosen not to begin PrEP use (non-PrEP component). Out of the total, 24 self-identified as cisgender men, two as non-binary, and nine did not report their gender identity. As for sexual orientation, 26 identified as homosexual/gay, six as bisexual, two as pansexual, and one as heterosexual. Regarding skin color, 20 self-identified as black (negro), eight as brown (pardo [mixed-race]), and seven as white (branco). Clearly, literal translations of these racial/skin color categories from Brazilian Portuguese to English can be problematic ²⁵. Therefore, and for the sake of transparency, we decided to include them in Portuguese. We did the same with gender identity and sexuality native terms. Most interviewees (23) were in higher education, 10 had complete or incomplete high school, one had complete elementary school, and one had an incomplete technical course. Most participants reported financial dependence on family members or third parties (Box 1).

We found no evidence of discrepancies between the interviews conducted in Salvador and São Paulo regarding the questioned social markers of difference.

Box 1
Participants’ characteristics.

FICTITIOUS NAME	AGE (YEARS)	RACE/SKIN COLOR	SCHOOLING LEVEL	GENDER IDENTITY	SEXUAL ORIENTATION	PERCEPTION OF SOCIAL STATUS	STUDY COMPONENT	STUDY SITE
Alexandre	17	White	Incomplete high school	Cisgender man	Homosexual/Gay	Contributes partially to personal expenses	PrEP	São Paulo (São Paulo State)
Antônio	18	Black	Complete high school	NI/NA	Homosexual/Gay	Contributes partially to personal expenses	PrEP	São Paulo (São Paulo State)
Artur	16	Black	Incomplete higher education	Cisgender man	Homosexual/Gay	Financially dependent	PrEP	Salvador (Bahia State)
Benjamin	18	Black	Incomplete higher education	Cisgender man	Homosexual/Gay	Financially dependent	PrEP	Salvador (Bahia State)
Cauã	17	Black	Complete high school	Cisgender man	Homosexual/Gay	Financially dependent	Non-PrEP	Salvador (Bahia State)
Cícero	17	Brown	Incomplete high school	NI/NA	Homosexual/Gay	Financially dependent	PrEP	São Paulo (São Paulo State)
Daniel	18	White	Incomplete higher education	Cisgender man	Bisexual	Financially dependent	PrEP	São Paulo (São Paulo State)
Davi	19	Black	Incomplete higher education	Cisgender man	Homosexual/Gay	Financially dependent	Non-PrEP	Salvador (Bahia State)
Denis	19	Black	Incomplete higher education	NI/NA	Bisexual	Contributes partially to personal expenses	Non-PrEP	São Paulo (São Paulo State)
Enrique	18	Black	Complete high school	Cisgender man	Gay	Financially dependent	Non-PrEP	São Paulo (São Paulo State)
Enzo	19	Black	Incomplete higher education	Cisgender man	Homosexual/Gay	Contributes partially to personal expenses	PrEP	Salvador (Bahia State)
Geraldo	20	Black	Incomplete higher education	Cisgender man	Homosexual/Gay	Financially dependent	PrEP	São Paulo (São Paulo State)
Guilherme	19	White	Incomplete higher education	NI/NA	Homosexual/Gay	Financially independent	PrEP	São Paulo (São Paulo State)
Gustavo	19	Black	Incomplete higher education	Cisgender man	Bisexual	Financially dependent	PrEP	Salvador (Bahia State)
Heitor	20	Brown	Complete high school	Cisgender man	Homosexual/Gay	Contributes partially to personal expenses	PrEP	Salvador (Bahia State)
João	18	Brown	Incomplete higher education	Cisgender man	Homosexual/Gay	Financially dependent	PrEP	Salvador (Bahia State)
Jorge	20	Black	Incomplete higher education	Cisgender man	Bisexual	Contributes partially to personal expenses	PrEP	São Paulo (São Paulo State)
Leandro	19	Black	Incomplete higher education	Cisgender man	Homosexual/Gay	Financially dependent	PrEP	Salvador (Bahia State)
Lorenzo	19	Black	Complete elementary school	Cisgender man	Homosexual/Gay	Financially dependent	PrEP	Salvador (Bahia State)
Lucca	19	White	Incomplete higher education	Cisgender man	Homosexual/Gay	Financially dependent	Non-PrEP	Salvador (Bahia State)
Luiz	20	Brown	Incomplete higher education	NI/NA	Homosexual/Gay	Financially independent	PrEP	São Paulo (São Paulo State)
Marcelo	20	Brown	Incomplete higher education	NI/NA	Homosexual/Gay	Financially dependent	PrEP	São Paulo (São Paulo State)
Márcio	19	Black	Complete high school	Cisgender man	Homosexual/Gay	Contributes partially to personal expenses	PrEP	São Paulo (São Paulo State)
Marcos	17	White	Incomplete high school	NI/NA	Homosexual/Gay	Financially dependent	PrEP	São Paulo (São Paulo State)
Mariano	20	White	Incomplete higher education	Cisgender man	Homosexual/Gay	Financially independent	PrEP	Salvador (Bahia State)
Matheus	19	Brown	Incomplete higher education	Cisgender man	Homosexual/Gay	Contributes partially to personal expenses	PrEP	São Paulo (São Paulo State)
Mauricio	17	Black	Incomplete higher education	Non-binary person	Homosexual/Gay	Contributes partially to personal expenses	PrEP	Salvador (Bahia State)
Miguel	19	Black	Incomplete higher education	Cisgender man	Homosexual/Gay	Financially dependent	PrEP	Salvador (Bahia State)
Murilo	19	Black	Incomplete technical school	Cisgender man	Bisexual	Contributes partially to personal expenses	PrEP	Salvador (Bahia State)
Pedro	19	Brown	Incomplete higher education	Cisgender man	Bisexual	Contributes partially to personal expenses	PrEP	Salvador (Bahia State)
Regis	18	Black	Incomplete higher education	Cisgender man	Homosexual/Gay	Financially dependent	PrEP	São Paulo (São Paulo State)
Renato	19	Black	Complete high school	Cisgender man	Homosexual/Gay	Contributes partially to personal expenses	PrEP	Salvador (Bahia State)
Rodrigo	17	Black	Incomplete high school	NI/NA	Pansexual	Financially dependent	PrEP	São Paulo (São Paulo State)
Victor	19	Brown	Incomplete higher education	Non-binary person	Pansexual	Financially independent	PrEP	Salvador (Bahia State)
Vinicius	20	White	Incomplete higher education	NI/NA	Homosexual/Gay	Contributes partially to personal expenses	PrEP	São Paulo (São Paulo State)

• NI/NA: no information/did not answer; PrEP: pre-exposure prophylaxis.

Awareness and willingness to use and access PrEP

Based on an emic perspective, knowledge of PrEP is produced via different pathways of sociability - including virtual social networks, friends, health professionals and experiences in health care services, and previous use of post-exposure prophylaxis (PEP). The willingness to use PrEP is associated with this prior knowledge, and the process of beginning prophylaxis is part of something bigger than concerning one’s health and the health of one’s partner(s). The quantity and quality of sexual relations (greater or lesser frequency of condom use and high or low frequency of sexual intercourse) predispose adolescents to attend an initial consultation and, in most cases (30), to begin to use prophylaxis. However, being available to use PrEP does not necessarily lead subjects to access it, as barriers at the individual, social, and programmatic levels may cause non-use.

Subjective, relational, and symbolic structural aspects permeate the awareness of PrEP within the range of prevention tools, and the motivations for its use are affected by social markers of difference. When PrEP enters the concrete lives of potential users and interacts with these distinct dimensions, it produces effects and multiple meanings.

Among all participants, the discussion about the awareness of and willingness to use PrEP relates to perceptions of risk and its management. Narratives about erotic exchanges, sexual encounters, and willingness to use PrEP are constructed based on a particular risk economy. In the emic perspective of the risk economy, sexual relations and erotic exchanges are entangled measuring of how exposed they were to sexual intercourse. Risk is categorized in terms of sexual acts (a calculation of possible exposure) and by a complex web of elements that establish - in symbolic and subjective terms - the possibility of infection. In this risk economy, certain aspects stand out, such as the opportunity for and quantity of anal penetration; if the penetration was with or without a condom; with or without lubricant; more or less hard; if the interviewee was bottom (passivo) and managed the penetration force so that no wounds were caused or the condom did not burst; if there was a withdrawal of the penis at the moment of ejaculation by the one who penetrated or was penetrated; if the partner removed the condom during sex without consent; and if the environment of socialization was/is favorable to infection, for example, a nightclub where there are opportunities for sexual intercourse. PrEP seems to have attained a prominent place among the possibilities of prevention, to the extent that its use reduces the risk of HIV infection, as reported by Antônio, a gay, black man, residing in São Paulo: “I think that is also why I wanted to do PrEP; I was lucky that when I started PrEP, I had just gone through a very serious episode, and I almost contracted HIV”.

Sexuality and gender performativity, that is, showing oneself as heterosexual or homosexual, or “more or less” fem (afeminado) affects the recognition of one’s position in the risk economy. Regis, a São Paulo resident, who self-identifies as black and gay, says: “I don’t think I’ve ever noticed because I’m black, but because I’m more fem [afeminado], it’s harder. Let’s suppose I have AIDS and a straight man has AIDS. I think that being a gay man with HIV carries more weight than if you’re a straight man”.

As also demonstrated broadly in other research ²⁶, for the participants condoms are a great ally in reducing the risk of HIV infection. At the same time, reports of discomfort or allergy are elements that influence the willingness to start taking PrEP. Condoms were also perceived as an obstacle to pleasure and a symbolic barrier to achieving a more intimate relationship. As other studies indicated, the possibility of greater intimacy, a maximization of pleasure, or even greater freedom, well-being, and safety in erotic encounters are all aspects considered to be benefits of PrEP use ^27,28,29,30.

People “negotiate” the use of prevention strategies according to their perceptions of risk and the pleasure involved in sexual practices ³⁰. Risk and prevention methods also happen according to situations, interactive contexts, experiences, and desires involved in sexual interactions ³¹. Willingness to use PrEP is part of a process of learning, producing meaning, and negotiating the high risk of HIV and of other STIs and the possibilities of obtaining pleasure ³⁰. Adolescents who are aware of, access to, and use PrEP become more informed about their vulnerabilities, leading to more informed decision-making, even when a condom is not an option. For example, an adolescent has an STI (usually syphilis), and they could relate it to the idea of the risk of other infections. In that case, they begin to build - usually with health professionals - the idea that exposure is a possibility and that it is better to be protected: “Because I had experiences with STIs, I began PrEP”, says Vinicius; or “it motivated me to repeat risky situations”, states Enzo.

Similar experiences, such as repeating risky situations, are reconfigured when the intersecting social markers of difference that can affect them are highlighted. Vinicius (a gay, white São Paulo resident), who self-identifies as being from a disadvantaged socioeconomic context, describes himself thus: “I’m lower middle class, right?”. However, because he is white, he establishes socialization strategies. He has opportunities for better social positioning, thanks to a scholarship at a private school: “So I have always been able to go to places that my social class would not normally allow me”. Vinicius’ whiteness is expressed when he adds how this social marker of difference has given him opportunities. He also considers himself well-positioned according to hegemonic standards of beauty: “Look, modesty aside, I’m handsome, right? So, because I’m white, because I don’t have a lower-class profile, and I have a middle-class profile... So, this has opened many doors for me”.

Whereas Vinicius’ whiteness brings him some advantages, Mauricio, who self-identifies as black, gay and non-binary, and lives in Salvador, says that his blackness works against him: “...being black is already very hard... being black and gay is even worse”.

Regarding individual/subjective aspects, statements about not wanting “to take a medicine forever” are recurrent. Even if this discussion can be addressed in clinical care with the multi-professional team, these statements have a bearing on the decision about whether or not to start using prophylaxis. Feeling protected also came up frequently as potentially affecting the decision to take PrEP (or not), with statements such as “I don’t go out much”, or “I don’t frequently have sex”, regardless of the social markers of difference ³².

In relational terms, a family context that rejects non-hegemonic sexual behaviors can be a potentially unfavorable environment for beginning PrEP. Anticipating issues such as lack of privacy and family suspicion, many YGBMSM report things such as “my mother rummages my backpack and might find it out” (Marcelo). However, adolescents’ effective hiding strategies demonstrate that the family environment is not an insurmountable barrier to PrEP use.

The influence of partners also is a significant relational dimension. On the one hand, some consider starting PrEP together, others consider it unnecessary since they are a supposedly monogamous couple. Trust in the other, or “building trust”, is seen from an emic perspective when there is a reference to “knowing the person properly”, as Leandro indicates, regarding his partner’s sexual history.

These elements seem to mediate the risk perception and measurement of protective measures, which is consistent with the literature on how the subjective notion of being in a monogamous/stable relationship or with “trustworthy” people may give rise to a feeling of protection against HIV and other STIs ²⁶. The decision to have sexual intercourse with or without a condom, or to allow it to be discarded during sexual intercourse, happens in the context of subjective and symbolic assessments of the relationship and/or the partner, with no evident social markers of difference influence appearing in the analyzed material.

Lucca, from Salvador, who self-identifies as white, homosexual, and of privileged social status, since he “does not have to work to support me”, says: “...I use condoms and avoid certain practices. I think I assess the partner in some way. Now I’m in a closed relationship. But when I was single, I always worried about the person’s lifestyle”.

In symbolic terms, many interviewees stated that those who take PrEP are stigmatized due to the association with promiscuity. These aspects appear in statements that brand the PrEP user as one who “will do it with anyone”, among other considerations that pass moral judgment on medication use as prevention, as described in the literature ^33,34. Although the aforementioned is not confirmed by the daily lives of individuals who take the medication, it is a significant element among participants in the decision to use PrEP. Alexandre (white, gay, from São Paulo, and who financially contributes to his household) illustrates this perception: “And when I say that I take PrEP, she [a friend] thinks that I have sex with everyone under the sun, and that’s why I take PrEP. There’s much prejudice to a person who takes PrEP”.

PrEP use and adherence

The analyses of PrEP use and adherence by YGBMSM are presented here based on their perceptions and experiences of the facilitators and the barriers that affect the proper use of prophylaxis in everyday life. Therefore, the analysis focuses on the dynamics of prophylaxis in participants’ lives and how they cope with adversity to stay protected from HIV.

Prophylaxis is also permeated by individual, relational, and symbolic/structural dimensions intersected by social markers of difference. Thus, issues of regular access to services offering PrEP, the side effects of the medication, and the effect of daily use in the adolescents’ routines emerge, as do the meanings attributed to the medication and its label as something that allows “unbridled” sexual behavior ³⁵.

Socioeconomic status - as well as other markers - seems to influence the beginning and adherence to PrEP use in this study participants. Enrique, from São Paulo, who self-identifies as gay, black and with “feminine traits that I have always wanted to control”, defines his economic situation as “complicated” because he “depends on the money that’s not his” to live. His economic difficulties were a hindrance to access health services and adherence to prophylaxis. In a similar position, Marcio, a dancer and dance teacher living in São Paulo, describes himself as “poor, ruined, really screwed”. Transport costs make it difficult for him to go to the PrEP services, but he tries to “get by” because “...I’m committed to this medication”. By identifying as black, he recognizes the demand for “...a huge process of resignification”, emphasizing the dynamic movements that construct the idea of belonging. As well to being black and “poor”, being gay is “to be, above all, strong, in a homophobic, sexist, racist society. Being queer, black, suburban, and an artist is an act of courage. It’s a daily challenge”.

Certain aspects of the daily use of prophylaxis were not related to social markers of difference, but still noteworthy, as the national literature on qualitative empirical studies on the perceptions and meanings of PrEP is scarce ^27,28,29. Common side effects were “dry mouth”; headache; gastrointestinal discomfort, flatulence, and altered stools; tiredness and indisposition; low libido; mouth ulcers and “very yellow pee”, as well as references to a “weakening of the immune system” or fear of possible liver and kidney problems.

Few participants had changes in liver enzymes due to PrEP use, which caused some fear in participants - as in Davi’s case - and led them to discontinue PrEP momentarily. Fears and worries open a space for reflection about the barriers to maintaining PrEP use and possible changes in the frequency of use and dose administration ^36,37. However, some weeks after starting the prophylaxis, PrEP causes few or no adverse effects, according to most adolescents.

“Not being bothered” to take the medication is an element present among many adolescents, as Daniel indicates. While some report it as a prosaic element, others establish a “fighting” relationship with the pills. “I take them every day with hatred”, Luiz states, placing his tension on the need to prevent a disease that he thinks is unfair.

Thus, a gradual adaptation process is produced. For some, it was relatively quick; for others, more complex and time-consuming. Once incorporated into their routine, PrEP generates a feeling of protection. Several interviewees mentioned that “if you are committed to PrEP, you create a bond, like with someone who helps you out”, comments Marcio, adding: “for me, it’s clear: joint [marijuana cigarette], house keys, wallet, and PrEP... my stuff”. However, the routine can be treacherous for others because of forgetfulness, delays in taking the pill, and/or a conflicting relationship with the routine. These interlocutors also report having problems with routines of any sort.

Notably, half of the YGBMSM emphasized that the beginning of the routine was smooth and “okay”, while for the other half, it was confusing and complicated. These differences show the need to consider the particularities of the sociocultural contexts and factual living conditions. As in other situations of health care and technology use ³⁸, what is well established may not always be easy, as several activities (and factors) are involved in the practices, with diverse developments and implications. To make daily use of PrEP, one must go to a clinic, interact with professionals, access the medication, store it, and take the pills daily. However, in the specific case of YGBMSM, this use is also permeated by factors (family, school, among others) and barriers (material and symbolic) that can prevent or hinder continuous use and hence adherence to the pill.

Although already mentioned, we emphasize the importance of the relational dimension in the accounts involving family and friends regarding prophylaxis adherence. Not having to hide the medication and telling someone in their closest network (family and friends) about PrEP seems to be a crucial factor in the continuity and effectiveness of prophylaxis. Parental understanding is greatly valued and hoped for. When it is absent, there is a sense of frustration and meaninglessness in the subjects’ self-care actions, and there are certainly family contexts that can make it challenging to engage in routine PrEP use. Again, the contexts of vulnerability that impact the access to and continuity of the use of PrEP must be highlighted. These vulnerabilities are related to social markers of difference that create barriers (political and social) to health care. The fact that there are bodies and lives that, socially, seem worthless ³⁹, as reported by several adolescents, must be highlighted.

The meanings attributed to the continuous use and adherence to PrEP are diverse and intersected by social markers of difference. Some YGBMSM conceive PrEP as a kind of daily vaccine. Regarding use, they mention adaptations in their routine to be able to take the pills and undergo examinations and consultations at health services, negotiations with their representations of the health/illness/care processes constructed via common sense and challenged by medical discourse, and a resignification of the desires and pleasures involved in sexual practices.

During use, several participants said they tell everyone they use PrEP. João, who lives in Salvador and identifies as brown and gay, explains: “To really demystify it, you need to demystify it”, in the sense of naturalizing its use both among those who do not use it and among those who do, and adds: “No prejudice”, but “I always have to explain what it’s for”. Therefore, the symbolic and cultural dimensions of resistance actions against the stigma - allied to the political affirmation of the subjects - need to be highlighted.

We can also observe structural and symbolic aspects related to discrimination and stigma. Many, like Marcio, state that “lots of people are afraid” when they reveal they are taking medication. Cícero, brown, gay, and from São Paulo, highlights: “Many ask if we have HIV (...), then we have to explain things, but many don’t believe or don’t know that there is a medicine to help you not get it…”. On many occasions, fear of disclosure is part of the routine of people taking PrEP ⁴⁰.

Final considerations

In the set of methods for combined HIV prevention, PrEP is a strategy that young and adolescents give a prominent place to, placing it within a risk economy, according to their different social positions and vulnerabilities. Thus, we ascertained a necessary dialogue between social markers of difference, different vulnerabilities, sexual cultures, and the social meanings of PrEP. The coexistence of these different aspects affects the participants’ daily lives, producing barriers or favorable conditions for the implementation of combined prevention and the PrEP care continuum.

The intersectional approach is a potential analytical tool that can expand the understanding of HIV risk, prevention, and PrEP in the daily affective-sexual experiences of young and adolescents, which can be used to understand the social constructions and positions of the subjects intersected by social markers of difference. Furthermore, associating the intersectional perspective with the PrEP care continuum model for vulnerable populations - such as YGBMSM - can provide a conceptual framework that situates and problematizes the short, medium, and long-term effects of implementing HIV prevention actions.

The reports of participants living in São Paulo and Salvador were not too different. Moreover, it confirmed that social markers of difference intersect their concrete experiences. The knowledge, willingness to use, and access to PrEP, and the use and adherence to prophylaxis are thematized based on a multiplicity of references and experiences that can be situated and coordinated in the individual/subjective, relational, and symbolic/structural axes.

In individual/subjective terms, the possibilities of use and the search for PrEP seem part of a learning process based on experiences and the ideals of pleasure and freedom, risk perception, and HIV prevention management. In relational terms, the role played by sexual partnerships seems to be a more significant barrier in the care continuum compared to the family environment, especially concerning willingness to use and begin prophylaxis. The symbolic/structural dimensions tie the main links with the positions of the subjects according to the social markers of difference and reveal how discrimination and stigmas related to race/skin color, social status, and gender/sexuality performativity are elements that exacerbate the barriers to access, to use, and to adhere to PrEP and require vulnerable subjects to take an influential position of resistance/combat.

Knowing about PrEP, its use in calculating of HIV prevention, and adequate adherence to prophylaxis demands time and reflection on the adolescents’ part. We observed that awareness of PrEP and having access to prophylaxis made it possible to access information about ways to prevent other STIs, strengthened the relationship with health services, mitigated vulnerabilities, and increased the cultural capital related to sexual health among the interviewed YGBMSM.

The effectiveness of PrEP is strongly associated with adherence ^12,22,28. Adherence depends on the life contexts or practices of these subjects. Therefore, we must consider how adolescents and young people position themselves in their social networks and are positioned in the system of oppression and privilege of generation, class, gender identity, race/skin color, and sexuality. Considering the contingencies and life situations of adolescents/young people that may increase their vulnerability to contracting HIV and other STIs is a critical step in identifying and overcoming barriers to implementing proposals for combined HIV prevention.

Acknowledgments

We would like to thank all the adolescent participants of the PrEP1519 Study and their parents and guardians for their collaboration. We are also grateful to Unitaid for funding this study.

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Publication Dates

• Publication in this collection
  27 Mar 2023
• Date of issue
  2023

History

• Received
  31 May 2021
• Reviewed
  20 Oct 2021
• Accepted
  11 Nov 2021