Building bridges to care: the experience of peer navigation in enabling linkage to PrEP for adolescent men who have sex with men and transgender women

Construindo pontes para o cuidado: a experiência da navegação de pares na habilitação do vínculo com a PrEP para homens adolescentes que fazem sexo com homens e mulheres transgêneros

Construcción de puentes hacia el cuidado: la experiencia de navegación entre pares para permitir la vinculación con la PrEP para hombres adolescentes que tienen relaciones sexuales con hombres y mujeres transgénero

Renata Lúcia e Silva e Oliveira Luís Augusto Vasconcelos da Silva Filipe Mateus Duarte Sandra Assis Brasil Marcelo Eduardo Pfeiffer Castellanos Laio Magno Ines Dourado About the authors

Abstracts

Vulnerable populations are at increased risk for HIV/AIDS, especially adolescent men who have sex with men (AMSM) and adolescent travestis and transgender women (ATGW). Pre-exposure prophylaxis (PrEP) is one component of combination HIV prevention and is already available for these populations in Brazil. However, ensuring its uptake entails certain challenges since inequality and barriers have traditionally marked access and linkage to the related public health services. Peer navigation could be a way of mediating the linkage process because it involves peers keeping track of others’ care schedules, dynamically fostering linkage to care according to the needs of users and the actors involved in their everyday care contexts. Therefore, this study proposes analyzing peer-navigator-mediated linkage to PrEP care for 15- to 19-year-old MSM and transgender women from the PrEP1519 project in Salvador, Bahia State, Brazil. In total, 15 field notebooks/diaries, written in April-July 2019, by four peer navigators were analyzed, as were the transcripts of one focal group and 20 semi-structured interviews with adolescents (17 MSM and three trans women) between June and December 2019. Linkage via peer navigator and participant is influenced by emotional dynamics and shared personal characteristics. It is fluid and unstable and calls for care practices to be shaped to meet each participant’s needs. For peer navigation to be adopted as a care strategy for sexually transmitted infection prevention and treatment, it should envisage not only increased linkage to care but also sensitivity to service users’ specific characteristics and lived experiences.

Keywords:
Pre-Exposure Prophylaxis; Adolescent; Vulnerable Populations; HIV


Populações vulneráveis têm maior risco de contrair HIV/aids, especialmente homens adolescentes que fazem sexo com homens (AHSH) e mulheres transgêneros adolescentes e travestis. A profilaxia pré-exposição (PrEP) é um componente da combinação de prevenção do HIV e já está disponível para essas populações no Brasil. No entanto, garantir a captação da PrEP implica certos desafios, uma vez que o acesso e a vinculação aos serviços públicos de saúde relacionados a ela tem sido tradicionalmente marcados pela desigualdade e por outras barreiras. A navegação de pares pode ser uma forma de mediar o processo de vinculação pois envolve os pares que acompanham as rotinas de cuidado dos outros, estimulando dinamicamente a vinculação ao cuidado de acordo com as necessidades dos usuários e dos atores envolvidos em seus cotidianos. Este estudo propõe, portanto, analisar a vinculação ao cuidado com a PrEP mediada por navegação de pares para homens que fazem sexo com homens e mulheres transgênero de 15 a 19 anos do projeto PrEP1519 em Salvador, Bahia, Brasil. Foram analisados 15 cadernos/diários de campo escritos por 4 navegadores(as) de pares em abril a julho de 2019 assim como as transcrições de um grupo focal e 20 entrevistas semiestruturadas com adolescentes (17 HSH e três mulheres trans) de junho a dezembro de 2019. O vínculo entre navegador e participante é influenciado pela dinâmica emocional e características pessoais compartilhadas. É fluido e instável e necessita que as práticas de cuidado sejam moldadas para atender às necessidades de cada participante. Para que a navegação de pares seja adotada como estratégia de cuidado para prevenir e tratar infecções sexualmente transmissíveis, o método deve prever não apenas o aumento da vinculação ao cuidado mas também a sensibilidade às características específicas dos usuários e as suas experiências de vida.

Palavras-chave:
Profilaxia Pré-Exposição; Adolescente; Populações Vulneráveis; HIV


Las poblaciones vulnerables tienen mayor riesgo de contraer el VIH/SIDA, especialmente los hombres adolescentes que tienen sexo con hombres (AHSH) y las mujeres adolescentes transgénero y travestis. La profilaxis previa a la exposición (PrEP) es un componente de la combinación de prevención del VIH y ahora está disponible para estas poblaciones en Brasil. Sin embargo, la obtención de la PrEP implica ciertos desafíos, ya que el acceso y los vínculos con los servicios de salud pública relacionados con la PrEP han sido marcados en general por la desigualdad y otras barreras. La navegación entre pares puede ser una forma de mediar el proceso de vinculación, puesto que involucra a los pares acompañando las rutinas de cuidado de los demás, estimulando dinámicamente el vínculo del cuidado según las necesidades de los usuarios y actores involucrados en su cotidiano. Este estudio propone analizar el vínculo del cuidado de la PrEP mediada por la navegación entre pares para hombres que tienen relaciones sexuales con hombres y mujeres transgénero, con edades entre los 15 y los 19 años y que participan en el proyecto PrEP1519 en Salvador, Bahia, Brasil. Cuatro navegantes pares analizaron 15 cuadernos/diarios de campo escritos entre abril y julio de 2019, así como las transcripciones de un grupo focal y 20 entrevistas semiestructuradas con adolescentes (17 HSH y tres mujeres trans) realizadas de junio a diciembre de 2019. El vínculo entre el navegador y el participante estuvo influenciado por dinámicas emocionales y características personales compartidas. Este vínculo es fluido e inestable, además requiere que las prácticas de cuidado sean capaces de satisfacer las necesidades de cada participante. Para que la navegación entre pares sea una estrategia de cuidado en la prevención y tratamiento de las infecciones de transmisión sexual, el método necesita proporcionar no solo una mayor vinculación con el cuidado, sino también una concientización de las características específicas de los usuarios y sus experiencias de vida.

Palabras-clave:
Profilaxis Pre-Exposición; Adolescente; Poblaciones Vulnerables; VIH


Introduction

Combination HIV prevention stresses the importance of combining biomedical, behavioral, and structural approaches that are culturally sensitive and contextualized to the communities most affected by the epidemic 11. Departamento de Vigilância, Prevenção e Controle das Infecções Sexualmente Transmissíveis, do HIV/Aids e das Hepatites Virais, Secretaria de Vigilância à Saúde, Ministério da Saúde. Protocolo clínico e diretrizes terapêuticas para profilaxia pré-exposição (PrEP) de risco à infecção pelo HIV. Brasília: Ministério da Saúde; 2018.. Several studies have reported that HIV prevalence remains disproportionally high among adolescents and young men who have sex with men (AMSM) and transgender women (ATGW). HIV prevalence increased from 12% in 2009 to 18% among Brazilian young MSM in 2016 22. Kerr L, Kendall C, Guimarães MDC, Mota RS, Veras MA, Dourado I, et al. HIV prevalence among men who have sex with men in Brazil: Results of the 2nd national survey using respondent-driven sampling. Medicine (Baltimore) 2018; 97(1S Suppl 1):S9-15., an increase of 140% (from 4% to 9.4%) in younger individuals 33. Kerr L, Guimarães M, Kendall C, Mota RS, Dourado I, Veras MA, et al. Increasing prevalence rate among MSM in Brazil: results of a comparison of 2009 and 2016 national survey. In: 22nd International AIDS Conference 2018. http://www.AIDS2018.org (accessed on 15/May/2022).
http://www.AIDS2018.org...
. Furthermore, it was four times higher among Brazilian MSM conscripts between 17 and 22 years old 44. Sperhacke RD, Rapone L, Kato SK, Vanni AC, Paganella MP, Oliveira MCP, et al. HIV prevalence and sexual behavior among young male conscripts in the Brazilian army, 2016. Medicine (Baltimore) 2018; 97(1S Suppl 1):S25-31.. In TGW, the prevalence among persons aged 15 to 49 years in Brazil was 33.1%, with 85 of chance to contract HIV 55. Baral SD, Poteat T, Strömdahl S, Wirtz AL, Guadamuz TE, Beyrer C. Worldwide burden of HIV in transgender women: a systematic review and meta-analysis. Lancet Infect Dis 2013; 13:214-22.. Studies in Brazil that used respondent-driven sampling (RDS) found a prevalence of 31.2% 66. Grinsztejn B, Jalil EM, Monteiro L, Velasque L, Moreira RI, Garcia ACF, et al. Unveiling of HIV dynamics among transgender women: a respondent-driven sampling study in Rio de Janeiro, Brazil. Lancet HIV 2017; 4:e169-76. (Rio de Janeiro) and a variation between 19.7% (Curitiba, Paraná State) and 65.3% (Porto Alegre, Rio Grande do Sul State) 77. Bastos FI, Bastos LS, Coutinho C, Toledo L, Mota JC, Velasco-de-Castro CA. HIV, HCV, HBV, and syphilis among transgender women from Brazil: assessing different methods to adjust infection rates of a hard-to-reach, sparse population. Medicine (Baltimore) 2018; 97(1S Suppl 1):S16-24., among TGW aged 18 years or older.

New prevention technologies, such as pre-exposure prophylaxis (PrEP), target key populations, including AMSM 88. Hosek SG, Landovitz RJ, Kapogiannis B, Siberry GK, Rudy B, Rutledge B, et al. Safety and feasibility of antiretroviral preexposure prophylaxis for adolescent men who have sex with men aged 15 to 17 years in the United States. JAMA Pediatr 2017; 171:1063-71., ATGW, sex workers, and drug users, among others 44. Sperhacke RD, Rapone L, Kato SK, Vanni AC, Paganella MP, Oliveira MCP, et al. HIV prevalence and sexual behavior among young male conscripts in the Brazilian army, 2016. Medicine (Baltimore) 2018; 97(1S Suppl 1):S25-31.,55. Baral SD, Poteat T, Strömdahl S, Wirtz AL, Guadamuz TE, Beyrer C. Worldwide burden of HIV in transgender women: a systematic review and meta-analysis. Lancet Infect Dis 2013; 13:214-22.,66. Grinsztejn B, Jalil EM, Monteiro L, Velasque L, Moreira RI, Garcia ACF, et al. Unveiling of HIV dynamics among transgender women: a respondent-driven sampling study in Rio de Janeiro, Brazil. Lancet HIV 2017; 4:e169-76.. PrEP consists of the daily ingestion of an antiretroviral tablet (a coformulation of tenofovir disoproxil fumarate and emtricitabine), offering high protection against HIV infection. It was first made available by the Brazilian public health system, in 2018 for people over 18 years old 11. Departamento de Vigilância, Prevenção e Controle das Infecções Sexualmente Transmissíveis, do HIV/Aids e das Hepatites Virais, Secretaria de Vigilância à Saúde, Ministério da Saúde. Protocolo clínico e diretrizes terapêuticas para profilaxia pré-exposição (PrEP) de risco à infecção pelo HIV. Brasília: Ministério da Saúde; 2018..

Although many randomized clinical trials have indicated the efficacy of PrEP 99. Anderson PL, Glidden DV, Liu A, Buchbinder S, Lama JR, Guanira JV, et al. Emtricitabine-tenofovir concentrations and pre-exposure prophylaxis efficacy in men who have sex with men. Sci Transl Med 2012; 4:151ra125.,1010. Katabira E, Ronald A, Tumwesigye E, Were E, Fife KH, Kiarie J, et al. Antiretroviral prophylaxis for HIV prevention in heterosexual men and women. N Engl J Med 2012; 367:399-410., certain factors related to access and linkage to health services among MSM and TGW challenge its effectiveness. These groups face inequities and accessibility barriers 1111. Zanoni BC, Mayer KH. The adolescent and young adult HIV cascade of care in the United States: exaggerated health disparities. AIDS Patient Care STDS 2014; 28:128-35.,1212. Hosek S, Celum C, Wilson CM, Kapogiannis B, Delany-Moretlwe S, Bekker L. Preventing HIV among adolescents with oral PrEP : observations and challenges in the United States and South Africa. J Int AIDS Soc 2016; 19(7 (Suppl 6)):21107. and often experience stigma, discrimination, and violence related to their sexual orientation and/or gender identity 1313. Chikwari CD, Dringus S, Ferrand RA. Barriers to, and emerging strategies for, HIV testing among adolescents in sub-Saharan Africa. Curr Opin HIV AIDS 2018; 13:257-64.,1414. Doll M, Fortenberry JD, Roseland D, McAuliff K, Wilson CM, Boyer CB. Linking HIV-negative youth to prevention services in 12 U.S. cities: barriers and facilitators to implementing the HIV prevention continuum. J Adolesc Health 2018; 62:424-33., as well as concerns on the confidentiality of consultations and test results 1414. Doll M, Fortenberry JD, Roseland D, McAuliff K, Wilson CM, Boyer CB. Linking HIV-negative youth to prevention services in 12 U.S. cities: barriers and facilitators to implementing the HIV prevention continuum. J Adolesc Health 2018; 62:424-33.,1515. Hosek SG, Siberry G, Bell M, Lally M, Kapogiannis B, Green K, et al. The acceptability and feasibility of an HIV preexposure prophylaxis (PrEP) trial with young men who have sex with men. J Acquir Immune Defic Syndr 2013; 62:447-56., difficulty getting to health services, limited motivation to maintain their linkage to care 88. Hosek SG, Landovitz RJ, Kapogiannis B, Siberry GK, Rudy B, Rutledge B, et al. Safety and feasibility of antiretroviral preexposure prophylaxis for adolescent men who have sex with men aged 15 to 17 years in the United States. JAMA Pediatr 2017; 171:1063-71.,1515. Hosek SG, Siberry G, Bell M, Lally M, Kapogiannis B, Green K, et al. The acceptability and feasibility of an HIV preexposure prophylaxis (PrEP) trial with young men who have sex with men. J Acquir Immune Defic Syndr 2013; 62:447-56., and problems adhering to a routine involving the daily use of a medication 88. Hosek SG, Landovitz RJ, Kapogiannis B, Siberry GK, Rudy B, Rutledge B, et al. Safety and feasibility of antiretroviral preexposure prophylaxis for adolescent men who have sex with men aged 15 to 17 years in the United States. JAMA Pediatr 2017; 171:1063-71.,1313. Chikwari CD, Dringus S, Ferrand RA. Barriers to, and emerging strategies for, HIV testing among adolescents in sub-Saharan Africa. Curr Opin HIV AIDS 2018; 13:257-64.,1616. Gilbert AL, Knopf AS, Fortenberry JD, Hosek SG, Kapogiannis BG, Zimet GD. Adolescent self-consent for biomedical human immunodeficiency virus prevention research. J Adolesc Health 2015; 57:113-9.. As for legal, ethical, and political barriers, we also find concerns with having persons aged under 18 years take part in prevention programs for sexually transmitted infections (STIs) without the knowledge and/or consent of their parents or legal guardians 1313. Chikwari CD, Dringus S, Ferrand RA. Barriers to, and emerging strategies for, HIV testing among adolescents in sub-Saharan Africa. Curr Opin HIV AIDS 2018; 13:257-64.,1616. Gilbert AL, Knopf AS, Fortenberry JD, Hosek SG, Kapogiannis BG, Zimet GD. Adolescent self-consent for biomedical human immunodeficiency virus prevention research. J Adolesc Health 2015; 57:113-9.. Since programs geared toward the youth tend to neglect such key populations and programs aimed at key populations tend to exclude younger people 1717. Cornell M, Dovel K. Reaching key adolescent populations. Curr Opin HIV AIDS 2018; 13:274-80., health authorities have failed to effectively address these barriers.

Adolescence is a multifaceted period of life in which individuals experience significant biological, psychological, and social changes which impact their relational and social fields. Adolescents undergo new bodily experiences, sexual desires, and gender identities, with adolescent MSM and TGW often at increased levels of vulnerability 1818. Melesse DY, Shafer LA, Shaw SY, Thompson LH, Achakzai BK, Furqan S, et al. Heterogeneity among sex workers in overlapping HIV risk interactions with people who inject drugs: a cross-sectional study from 8 major cities in Pakistan. Medicine (Baltimore) 2016; 95:e3085., which may be expressed in high-risk sexual practices 1919. Stoebenau K, Heise L, Wamoyi J, Bobrova N. Revisiting the understanding of "transactional sex" in sub-Saharan Africa: a review and synthesis of the literature. Soc Sci Med 2016; 168:186-97., alcohol and drug abuse, or sex work 1818. Melesse DY, Shafer LA, Shaw SY, Thompson LH, Achakzai BK, Furqan S, et al. Heterogeneity among sex workers in overlapping HIV risk interactions with people who inject drugs: a cross-sectional study from 8 major cities in Pakistan. Medicine (Baltimore) 2016; 95:e3085.,1919. Stoebenau K, Heise L, Wamoyi J, Bobrova N. Revisiting the understanding of "transactional sex" in sub-Saharan Africa: a review and synthesis of the literature. Soc Sci Med 2016; 168:186-97.,2020. Wamoyi J, Stobeanau K, Bobrova N, Abramsky T, Watts C. Transactional sex and risk for HIV infection in sub-Saharan Africa: a systematic review and meta-analysis. J Int AIDS Soc 2016; 19:20992.. When taken together with the aforementioned accessibility barriers, these characteristics pose an even greater challenge to linking such individuals to HIV/AIDS prevention programs. That is why it is important to develop linkage strategies which are sensitive to the dynamics of AMSM and ATGW and meet their specific health needs and health policy targets as their lived experiences, practices, gender performance, and sexual orientation.

Health workers can enable linkage to health and care services, but so can individuals from the community. These individuals, known as peer navigators, generally have similar backgrounds and experiences to the ones they help navigate through health services 2121. McMahan VM, Frank N, Buckler S, Violette LR, Baeten JM, Banta-Green CJ, et al. Protocol development for HMU! (HIV prevention for methamphetamine users), a study of peer navigation and text messaging to promote pre-exposure prophylaxis adherence and persistence among people who use methamphetamine: qualitative focus group and interview study. JMIR Form Res 2020; 4:e18118.,2222. Reback CJ, Clark KA, Rünger D, Fehrenbacher AE. A promising PrEP navigation intervention for transgender women and men who have sex with men experiencing multiple syndemic health disparities. J Community Health 2019; 44:1193-203., setting the groundwork for mutual understanding and identification. Regarding vulnerable groups, this is of the utmost importance for enabling them to link up to HIV/AIDS prevention and/or treatment programs 2323. Doblecki-Lewis S, Butts S, Botero V, Klose K, Cardenas G, Feaster D. A randomized study of passive versus active PrEP patient navigation for a heterogeneous population at risk for HIV in South Florida. J Int Assoc Provid AIDS Care 2019; 18:2325958219848848.. Peer navigators assume the role of non-prescribing care providers, helping users to overcome care barriers by identifying unmet needs and facilitating access to resources and engagement with health services 2222. Reback CJ, Clark KA, Rünger D, Fehrenbacher AE. A promising PrEP navigation intervention for transgender women and men who have sex with men experiencing multiple syndemic health disparities. J Community Health 2019; 44:1193-203.. Given their importance, healthcare providers could also enlist peer navigators to help follow-up people aged 18 years or more on PrEP 1515. Hosek SG, Siberry G, Bell M, Lally M, Kapogiannis B, Green K, et al. The acceptability and feasibility of an HIV preexposure prophylaxis (PrEP) trial with young men who have sex with men. J Acquir Immune Defic Syndr 2013; 62:447-56.. This could achieve the following gains: (a) regularity of communication; (b) strengthening of non-moralistic stances; (c) flexibility; (d) diversification of strategies for uptake and continued use of PrEP (reminders, information on HIV prevention and prophylaxis, shared planning of PrEP to account for adolescents’ daily reality, support identifying prescribers with the right profile to work with adolescents); and (e) mobilizing the resources available in the community with the potential to strengthen prevention practices 2121. McMahan VM, Frank N, Buckler S, Violette LR, Baeten JM, Banta-Green CJ, et al. Protocol development for HMU! (HIV prevention for methamphetamine users), a study of peer navigation and text messaging to promote pre-exposure prophylaxis adherence and persistence among people who use methamphetamine: qualitative focus group and interview study. JMIR Form Res 2020; 4:e18118.,2323. Doblecki-Lewis S, Butts S, Botero V, Klose K, Cardenas G, Feaster D. A randomized study of passive versus active PrEP patient navigation for a heterogeneous population at risk for HIV in South Florida. J Int Assoc Provid AIDS Care 2019; 18:2325958219848848..

As for implementing these practices, linkage is produced in complex, dynamic processes that are constituted and mediated by networks of relationships between heterogeneous actants (human and non-human) 2424. Latour B. Reagregando o social: uma introdução à teoria do ator-rede. Salvador: Edufba; 2012.. From this perspective, peer navigators, educators, young people, professionals, services, friends, relatives, social media, mainstream media, and medications are some of the actants engaged in the course of actions in which different types of linkage are established in networks of socio-material practices which produce and enact 2525. Mol A. Ontological politics. A word and some questions. In: Law J, Hassard J, editors. Actor network theory and after. Oxford: Blackwell Publishers; 1999. p. 74-89. multiple realities. Nonetheless, little is yet known about how to link AMSM and ATGW to PrEP programs 1414. Doll M, Fortenberry JD, Roseland D, McAuliff K, Wilson CM, Boyer CB. Linking HIV-negative youth to prevention services in 12 U.S. cities: barriers and facilitators to implementing the HIV prevention continuum. J Adolesc Health 2018; 62:424-33.,2626. Pettifor A, Stoner M, Pike C, Bekker L. Adolescent lives matter: preventing HIV in adolescents. Curr Opin HIV AIDS 2018; 13:265-73.. A process seldom assessed in the realm of the networks of socio-material practices indicated above. Thus, we aim to analyze the linkage of adolescent MSM and TGW to a PrEP clinic in Salvador, Bahia State, Brazil, via peer navigators mediation.

Methodology

This study analyzes data from the PrEP1519 study, a demonstrative cohort of PrEP use by adolescent MSM and TGW aged 15 to 19 years in three cities in Brazil: Salvador, Belo Horizonte (Minas Gerais State), and São Paulo. Further methodological details can be found in Dourado et al. 2727. Dourado I, Magno L, Greco DB, Zucchi EM, Ferraz D, Westin MR, et al. Interdisciplinarity in HIV prevention research: the experience of the PrEP1519 study protocol among adolescent MSM and TGW in Brazil. Cad Saúde Pública 2023; 39 Suppl 1:e00143221.. In Salvador, this research project is called PrEPara Salvador [a play on words between PrEP and “prepara” - Get ready!], and is organized within an adolescent-friendly space in the historical center of Salvador and has a multi-professional team trained to offer combination HIV prevention, including PrEP.

Potential participants of PrEP1519 were enrolled via educational and community activities, demand-generation and publicity activities on social media, hook-up apps, and direct referrals from health services and adolescents who were already part of the cohort. Further recruitment details can be found in Magno et al. 2828. Magno LS, Soares F, Zucchi EM, Eustórgio M, Grangeiro A, Ferraz D, et al. Reaching out to adolescents at high risk of HIV infection in Brazil: demand creation strategies for PrEP and other HIV combination prevention methods. Arch Sex Behav 2022; [Online ahead of print]..

Study participants were required to have a negative HIV diagnosis and be at substantial risk of infection and/or of greater vulnerability to HIV. Socio-behavioral questionnaires were answered by participants who then took rapid diagnostic tests for HIV and other STIs, administered by a lab technician. If they got a negative HIV test result, they were referred for clinical check-up with a nurse and doctor. Once they were prescribed PrEP, they were assigned a peer navigator, according to characteristics which may facilitate linkage (e.g., gender identity, sexual orientation, ethnicity, and age) and/or some previous connection between participants and peer navigators.

Peer navigators are supervised by a nurse, who may be consulted for technical information, such as side-effects of PrEP and/or medicine interactions and STIs prevention and testing. Peer navigators act to strengthen their linkage to the PrEP clinic, facilitating participants’ uptake, asking questions about their needs and guiding them on issues such as difficulty in using the medication, where to keep it, what time to use it, adverse effects, remember follow-up visit dates, and being responsible for referring such issues to the health team.

The first contact between peer navigators and participants may be in person or by text messages via social media, should the participant give prior authorization for this. In the first month, they make contact once a week, which may then be reduced to fortnightly or monthly appointments, depending on adherence to PrEP; complications during PrEP use; bond between participant and peer navigators; and participant health-related issues.

Peer navigators produce field notebooks which are sent to the team every two weeks and contain information on interactions with participants, which are then discussed in periodic meetings with the supervisor.

The adolescents themselves report their frequency of PrEP use, which their peer navigators classify according to research results that conclude that PrEP is highly effective in preventing HIV when four or more pills are taken each week, as this provides protective levels in the bloodstream 99. Anderson PL, Glidden DV, Liu A, Buchbinder S, Lama JR, Guanira JV, et al. Emtricitabine-tenofovir concentrations and pre-exposure prophylaxis efficacy in men who have sex with men. Sci Transl Med 2012; 4:151ra125.,2929. Grant RM, Anderson PL, McMahan V, Liu A, Amico KR, Mehrotra M, et al. Uptake of pre-exposure prophylaxis, sexual practices, and HIV incidence in men and transgender women who have sex with men: a cohort study. Lancet Infect Dis 2014; 14:820-9.. PrEP1519 considers high adherence if participants report taking seven pills a week; medium adherence, if they take four to six a week; and low adherence, if they take three or fewer. If an adolescent reports taking four to seven pills a week and a minimum of 16 a month, they are regarded as achieving good adherence. Still, 30 pills are dispensed at the first appointment; 60, at the second; and, after the third, 90, at each follow-up appointment.

Follow-up visits take place every three months, in which participants receive counselling, have a medical check-up, do diagnostic tests for HIV and other STIs, and receive prevention materials. Furthermore, adherence to PrEP is evaluated, guidance is given on sexual and general health, and participants are referred to other areas of the public health service if necessary.

A focal group was conducted with three peer navigators about their work of enabling linkage of adolescents to PrEPara Salvador. Also, 15 field notebooks, produced in 2019 by four peer navigators, were analyzed and 20 semi-structured interviews were held with adolescents (17 MSM and 3 TGW) between June and December 2019, conducted by researchers with experience in qualitative research, including the lead author. Topics on recruitment, uptake, and linkage to PrEPara Salvador and experiences of use and adherence to PrEP were included in our interview script.

The focal group and its interviews were recorded and transcribed. Thematic content analysis was conducted based on the categories which emerged from participants’ narratives. The material was coded by Nvivo 10 (https://www.qsrinternational.com/nvivo/home).

Analyses of this material were based on the understanding that narratives are ways by which social experience is elaborated, rather than simply sequential descriptions of actions and events 3030. Castellanos MEP. A narrativa nas pesquisas qualitativas em saúde. Ciênc Saúde Colet 2014; 19:1065-76.. Personal narratives are historically, politically, and culturally situated, which means that their plots are co-constructed and contextually interconnected 3131. Squire C, Andrews M, Tamboukou M. What is narrative research? In: Andrews M, Squire C, Tamboukou M, editors. Doing narrative research. 2nd Ed. London: SAGE; 2013. p. 10-26.. The PrEP1519 quantitative data collection platform (http://www.sisprep.org) was used to gather data on the follow-up of adolescents, PrEP adherence and discontinuation, and STIs diagnoses from April 2019 to May 2022.

PrEP1519 was approved by the Ethics Research Committee of the World Health Organization, the Faculty of Medicine of the University of São Paulo, and the Institute of Collective Health of the Federal University of Bahia (# 3,224,384) and complies with the Brazilian National Health Council Resolutions n. 466/2012 and 510/2016. Written informed consent was sought and obtained from all peer navigators and adolescents aged 18 and above. Those under 18 years of age signed an informed assent form and their legal guardian signed the informed consent form. The anonymity of all peer navigators and participants is maintained throughout the text.

Results and discussion

Participants’ profiles

Peer navigators were representative of the LGBTQI+ community. In total, two were transgender men who identified as heterosexual and two were cis women, one heterosexual and one bisexual. They all identified as black and were aged between 26 and 50 years. Overall, three peer navigators had completed, and one had begun (but not completed), a university degree (Box 1). As for the adolescents interviewed, Box 2 shows most (17) were MSM and identified as black (just two stated they were white); five identified as bisexual, one as pansexual, and the others as gay; their ages at study enrollment ranged from 16 to 19 years old (one was 16 years old; two, 17 years old; the others 18 or 19 years old), and only two youths were 20 years old at the time of the qualitative interview. All three of the TGW interviewed, aged 18 and 19 years, identified as TGW and two were heterosexual and one bisexual. Overall, two identified as white and one as black. The reported adherence to PrEP at the moment of the qualitative interview was good. Figure 1 shows the periods of PrEP use from March 2019 until May 2022, adherence and discontinuation. Ten participants temporarily discontinued PrEP and then resumed it; five discontinued and gave up PrEP use; three have stopped using PrEP, resumed it, and then gave up; and finally, two participants fluctuated between high, medium, and low adherence. STIs such as gonorrhea, syphilis, and condyloma acuminate were diagnosed in ten participants as shown in Box 3.

Box 1
Peer navigators’ profile.

Box 2
Interviewed adolescents’ profile.

Figure 1
Periods of pre-exposure prophylaxis (PrEP) use from March 2019 to May 2022: adherence and discontinuation *. PrEP1519 study, Salvador, Bahia State, Brazil.

Box 3
Follow-up time on PrEP1519 study, Salvador, Brazil: adherence, discontinuation and sexually transmitted infections (STI) diagnosis.

The importance of representativeness as a mediator of linkage to care

Since navigators are peers, they share certain characteristics with the person who is to receive care, which means they are likely to be accepted as someone “similar”. Interventions that focus on linking TGW and MSM to primary HIV and PrEP care stress the importance of using peer navigators who have similar life experiences to the people with whom they work 3232. Garcia J, Colson PW, Parker C, Hirsch JS, Sciences H. Passing the baton: community-based ethnography to design a randomized clinical trial on the effectiveness of oral pre-exposure prophylaxis for HIV prevention among black men who have sex with men. Contemp Clin Trials 2016; 45:244-51.,3333. Parisi D, Warren B, Leung SJ, Akkaya-Hocagil T, Qin Q, Hahn I, et al. A multicomponent approach to evaluating a pre-exposure prophylaxis (PrEP) implementation program in five agencies in New York. J Assoc Nurses AIDS Care 2018; 29:10-9.. These characteristics, including their sexual orientation, ethnicity, age, culture, relationship status, and local neighborhood - very important for the LGBT population 3434. Pagkas-Bather J, Jaramillo J, Henry J, Grandberry V, Ramirez LF, Cervantes L, et al. What's PrEP?: peer navigator acceptability among minority MSM in Washington. BMC Public Health 2020; 20:248. - are considered when pairing them with a new participant. Previous experiences of peer navigators who are MSM, TGW, LGBT, and indigenous describe navigation strategies which are well adapted to the needs of MSM and TGW who live in vulnerable contexts, positively impacting the task of overcoming “trans-specific” (structural and individual) barriers to care, including documentation issues and trouble accessing hormone therapy 2222. Reback CJ, Clark KA, Rünger D, Fehrenbacher AE. A promising PrEP navigation intervention for transgender women and men who have sex with men experiencing multiple syndemic health disparities. J Community Health 2019; 44:1193-203.. The idea behind this horizontal approach is to allow peer navigators to become a point of reference in guiding participants by different support options throughout a particular course of care, especially when dealing with populations regarded as “hard to access” or “hidden”, for whom traditional health intervention approaches have proved unsuccessful.

The peer navigators at PrEPara Salvador who are transgender men even acknowledged that they see themselves in the adolescent transgender women’s narratives because they share similar interactions, experiences, and social contexts, as well as lived experiences relating to being transgender. This representativeness was used as an important dimension to strengthen linkage by all peer navigators and we found this to be important for effective follow-up, listening, and helping participants with their (sexual) health care:

“...I’m trying to understand what needs this audience has, always putting myself forward as an LGBT person to remind myself, in my strategy, of the importance of being LGBT and considering spaces like this here and caring for our own sexual health (...) I’ve even noticed among the participants who are transgender women and travestis that they’re more open to dialogue and also have a greater need for this kind of exchange” (Focal group - peer navigator 2).

“...saying how much more comfortable she would feel (...) especially because we share the experience of being transgender” (Field notebook - peer navigator 1)

In the context of health, professionals and patients take part in a complex socio-material network, a relationship forged in “a context of materially situated historical and cultural practices3535. Spink MJP. Clientes, cidadãos pacientes: as múltiplas lógicas de cuidado na atenção à saúde. Saúde Soc 2015; 24:115-23. (p. 118). Navigators and adolescents are situated in similar socio-material realities which defy hegemonic heteronormative standards. As such, they recognize each other in bodies that diverge from the norm and understand each other as actors whose gender performances are challenged by barriers in all manner of relationships. Pairing gender identity helps foster linkage to care, levels the relationship, opens communication channels, and produces practices of care that resonate with these experiences. However, this identification fails to rule out the distinction between “them and me” in navigators’ field notes, often denoted by the age difference between them, not to mention their educational attainment, professional role, and “awareness” of preventive practices.

Linkage mediated by affection: reciprocity and bonding versus tensions and challenges

As a biomedical intervention that is part of combined prevention, the use of PrEP requires an entire process of continuous and dynamic care that is produced as it is incorporated into user’s lives. This is mediated by several actors who are involved in monitoring its use, implementing practices, producing new approaches, and jointly implementing a reality which is not limited to the theme of risk and protection against HIV 3636. Mol A. The body multiple: ontology in medical practice. Durham/London: Duke University Press; 2002.. From this perspective, peer navigation is dynamically performed or produced according to a series of emerging needs, actors, and situations influencing everyday health. Navigators and adolescents work together, affect each other, and need each other to “do” or produce a bond with care:

I think it’s more about empathy and you making the person feel welcomed beyond being a number, a statistic (...) because we’re dealing with linkage. We talk to these people, and just as they get linked, we do too, we get concerned, we think about them during the week, talk to them (...) this closeness, making them feel close too” (Focal group - peer navigator 2).

I’ll send a really long audio and he’ll answer with a really long audio. We chat, we talk about our routine and other stuff, you know? It’s really healthy and, despite everything I’ve said, it’s not something professional, you know, it’s not like formal, it’s more like acquaintances, colleagues helping each other out” (MSM aged 18).

This affective dynamic is an important component of the care practices in which peer navigators engage, producing diverse effects in the involved actors. Generally, it is seen as a sign that the linkage is solid when adolescents show affinity and emotional identification and answer to the contacts from peer navigators. Adolescents show satisfaction at receiving follow-ups from somebody who is interested in their multiple needs:

I thought it was really cool because he’s really polite and my navigator, until today, is a person who’s by my side, always reminding me: are you taking your meds? Are you taking care of yourself? When I come here, I always have a chat and his whole approach has been really cool because he showed the objective of the project, of PrEP use” (TGW aged 18).

My relationship with P. is amazing. (...) whenever I’m online and he’s online and I have something I need to ask and if he doesn’t answer right away, he always answers as soon as he can. And my appointments and my feedback, (...) always keeping me up to date with everything” (MSM aged 16).

Another element refers to age difference, which establishes proximity and distance in these interactions. Peer navigators mediate it in the linkage process, with care practices which seek horizontality in the relationships by managing others’ identity markers:

So, for me it’s a little more difficult because I have a big age difference between them, because I’m a much older person and a lot more mature. (...) I even thought that I would have difficulty with the ones I’m navigating but, thank God, I don’t. For me, there’s no resemblance to them, but I feel close, I feel like a trailblazer, discovering together with them this whole process of what it means to take care of one’s health” (Focal group - peer navigator 3)

“...even by the age of participants, we realize that the only way for you to access them it’s to become aware and also put yourself as similar to him” (Focal group - peer navigator 2).

Peer navigator perform the care practices with the different objects, actors/actants, and sequences of events involved in shaping the alternate stories in their trajectories of care involving PrEP use. In this process, linkage to care is fluid and unstable and its progress is not linear in time. Unpredictability is inherent to the linkage process and that is a challenge to care practices. Contacting these participants spawns conflicting emotions, causing tensions in the care relationships:

Sometimes he is slow to answer my messages and there have been times when he was extremely rude to me during our interactions” (Field notebook - peer navigator 1).

The first participant I didn’t link up. (...) we didn’t manage to establish a bond. So, it was hard, I don’t know (...) there wasn’t any dialogue, no sharing, no affinity” (Focal group - peer navigator 3).

When these breaks or hiatuses occur in online interactions, peers navigators are required to continuously invest in managing adolescents’ care together with them, to stay in touch and keep the linkage alive, for which they have to manage tensions and plan alternative strategies to remake contact, which intensifies their emotional involvement. As for the adolescents, their communication difficulties with the navigators on virtual platforms stem from a number of actions/events that extend through time, sometimes hindering and sometimes helping communication:

“(...) He sent a message, but I didn’t manage to answer him yet because of my college group and work. Because I leave all the important groups on the first page and all the other conversations I file. Then when it shows up, I just open it and leave it quickly and then I file it to read later, because my first priority is work and college” (MSM aged 19).

We haven’t had much contact because I think, also on my part, I don’t spend a whole lot of time online because there’s school, my post-school studies, the stuff at home I do (...) I try to nourish my human interactions with my friends more” (MSM aged 16).

These narratives show the role played by cell phones with access to the internet, social media, and related online chat tools. These artifacts and objects are present in the heterogeneous network of relationships of which the participants and navigators partake, taking on a pivotal status in modifying a situation 2424. Latour B. Reagregando o social: uma introdução à teoria do ator-rede. Salvador: Edufba; 2012. and making a difference in the process of linking to care. They are materialities that set courses of action, becoming indispensable actors/actants in producing care because they mediate emotions, bonds, and navigators’ and participants’ mutual expectations.

Since virtual technologies are a constant presence in contemporary times, navigation could end up invading a private, intimate sphere, sparking other tensions in these interactions. This could jeopardize linkage to care or even cause discontinuities, depending on the effects produced by the offered practices of care. The limits of such interaction should be considered to determine when and how to gain proximity and give space as part of a strategic and balanced articulation designed to strengthen linkage.

Linkage and comprehensive health care

This study problematized the notion of care on the basis of a praxiographic approach 3636. Mol A. The body multiple: ontology in medical practice. Durham/London: Duke University Press; 2002.,3737. Mol A. The logic of care: health and the problem of patient choice. London/New York: Taylor & Francis e-Library; 2008., highlighting the practices in which the care and follow-up of these young people take place, with the potential to spawn multiple effects/results and itineraries. Thus, care - as a continuous fluid, open, and collective process 3737. Mol A. The logic of care: health and the problem of patient choice. London/New York: Taylor & Francis e-Library; 2008. - is an effect of the practices that perform it, being produced via the practical actions and interactions established between different actors and actants (human and non-human), i.e., it can be shaped and reformulated depending on its results. Such practices are situated and also change in space and time.

Peer navigators’ role is to intervene with practices of care produced from the necessities that stem from interactions and liaisons between the several actors/actants involved in young people’s relationship with health services, according to the following narrative:

“...they come into contact with other professionals and end up creating this bond but afterwards it’s practically just you. And you think it’s going to be mechanical, that you’re going to ask, ‘hey there, alright? Took your meds today? Something wrong?’ But it gradually changes (...) a different link is created, you end up really taking care of him, you worry how he’s going to get here, if he’s taking the medicine, if it’s really doing him good, if it’s really what he wants or if he’s being pressured in some way to use the medicine, or if it’s something he really wants (...) your perspective changes, you’re not just keeping an eye on whether he’s taking the pills, you want to know about him, as a person, or her, how they are. ‘Is it doing you good? Is it really what you want? Is there anything you’re not OK about? Do you need me for anything?’. Then you start to care, to reach out to that person” (Field notebook - peer navigator 3).

Peer navigators set about employing care strategies in an ongoing quest for equilibrium, which, in practice, is always provisional and unstable because tensions and conflicts are an integral part of the courses of action taken to attain a healthy life. It aims to encourage self-care without necessarily feeding the illusion of control and without disregarding the unforeseen. And, given the context of vulnerability in which project participants live, adversity is ever-present and significant in decisions pertaining to how care is offered. Navigators offer what support they can, situated in the social and material context in which both they and the adolescents find themselves. They can propose alternate routes, lending a sense of fluidity to care, enabling adolescents to actively take part in their care practices, and becoming adaptable and resilient in overcoming the obstacles they face in their quest for health. Such is the case of the trans adolescents in the project, who share certain vulnerabilities with navigators because of their transgender status:

Socioeconomic issues that also end up affecting emotional issues (...) have a strong impact in erecting these barriers to access and adherence. (...) I’ve managed to devise some strategic actions to get around them and ensure participants’ adherence” (Field notebook - peer navigator 1).

She told me she was well physically but revealed to me that she was emotionally depressed because of lack of employment and income. Financial difficulties have made her worried and sad because she has to depend on her father, who helps with what little he can at the moment” (Field notebook - peer navigator 4).

Each person’s needs are different and practices of care must thus consider these differences and specificities 3333. Parisi D, Warren B, Leung SJ, Akkaya-Hocagil T, Qin Q, Hahn I, et al. A multicomponent approach to evaluating a pre-exposure prophylaxis (PrEP) implementation program in five agencies in New York. J Assoc Nurses AIDS Care 2018; 29:10-9.. The focus turns to the relationship between individuals in specific contexts. In the work of navigators, paying attention to such specificities is crucial for successfully following up and receiving each participant and enabling uptake and linkage to the service:

“...one thing that makes this project different is precisely that it has LGBT people in the team, and I think that’s necessary to construct new values and perspectives inside this care setting, because we have to exist in places like this to make projects like this last longer...” (Focal group - peer navigator 2).

Of course, we have to take the social aspects, the political aspects, into consideration, particularly because it’s the population that suffers most in this country [in terms of just existing] for being LGBT (...) The prospect of not getting work, the barrier that’s the family, so lots of these people don’t come out to their families that they’re LGBT and all that causes a load of emotional and psychological suffering” (Focal group - peer navigator 1).

These specificities appears in the discontinuities in follow-up adherence to PrEP. As shown in Figure 1, there were oscillations in the level of adherence of the participants, in addition to interruptions and resumptions in the use of PrEP and those who gave up its use. Adolescents reported some of these reasons: conflicts in family relationships and/or with sexual partners, mental suffering, and material and financial difficulties. In these situations, peer navigator face the tensions emerging from different logics underlying their care practices, oscillating between pre-determined and biomedical-based guidelines and those produced from dilemmas, challenges, and conflicts. These adversities socially and materially place them in their networks of relationships and trace fluid paths open to the trajectory of the offered care. This viscosity of care 3737. Mol A. The logic of care: health and the problem of patient choice. London/New York: Taylor & Francis e-Library; 2008. produces different forms of action and creates other scripts for the use of PrEP, with a perspective to produce comprehensive care which is sensitive to specific realities and life conditions.

The trajectories of LGBT people, especially when they are adolescents, are ridden with vulnerabilities and risks, which impair their relationships, make their trajectories invisible, and foster processes of social exclusion, making it harder for them to get access to the care offered by navigators. However, a study by Reback et al. 2222. Reback CJ, Clark KA, Rünger D, Fehrenbacher AE. A promising PrEP navigation intervention for transgender women and men who have sex with men experiencing multiple syndemic health disparities. J Community Health 2019; 44:1193-203. on a peer navigation intervention for MSM and TGW experiencing multiple syndemic health disparities found that even the most vulnerable social groups can successfully achieve linkage and retention to PrEP. Despite daily tensions, the inclusion of this strategy to the PrEP1519 project constitutes an offer of care whose practices are shaped toward greater comprehensiveness and inclusion, considering the health inequities these vulnerable populations face, which implies forging bonds which may be consistent and lasting.

Concluding remarks

This study brings an expanded look at a care strategy with a prescriptive and preventive tradition, based on its ability to choose care practices to achieve good care 3737. Mol A. The logic of care: health and the problem of patient choice. London/New York: Taylor & Francis e-Library; 2008., with a series of informed actions and decisions pre-determined by a structure of different actors and actants who, if engaged, perform biomedical care strategies. However, peer navigator in practice is richer than what is expected, and the production of care is not restricted to its actions. Practices are multiple and perform realities that coexist within the PrEP1519, bringing together a network of relationships of heterogeneous elements and the occurrence of several things within such micro-relationships. The tension between these logics is set, instituting, an actor which, in the network of associations, has a specific place in the project, producing effects that impact the various links between human and non-human actors. This certainly generates these or other possibilities for the undertaken care practices.

We find definite methodological limitations related to the participants’ profile regarding adherence to PrEP, as well as the period in which they were interviewed. We conducted our fieldwork in 2019, the first year in which the PrEPara Salvador clinic was operating, in which most of the youth in good adherence to PrEP had been with the project for one to six months. This follow-up time and use of PrEP could have been instrumental in adolescents’ positive appraisal of the peer navigator work. Therefore, studies which assess the problems and challenges that come up in the longer-term engagement with care of young adolescents and caregivers in the scope of STIs prevention, including potential discontinuities in PrEP use, would be opportune.

Acknowledgments

We are grateful to the adolescents who participate in this study and their parents and guardians. To the Brazilian Ministry of Health, through the Department of Chronic Diseases and Sexually Transmitted Infections, the Bahia State Departments of Health and Justice, Salvador City Department of Health, that donate PrEP medications, condoms, rapid tests and providing the necessary infrastructure for the study development. To Oswaldo Cruz Foundation (Fiocruz), and Fiocruz Support Foundation (FIOTEC) that administratively support the study. To the professionals and managers of the participating institution, notably the Diversity Center in Salvador.

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Publication Dates

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

History

  • Received
    18 July 2021
  • Reviewed
    14 June 2022
  • Accepted
    08 July 2022
Escola Nacional de Saúde Pública Sergio Arouca, Fundação Oswaldo Cruz Rio de Janeiro - RJ - Brazil
E-mail: cadernos@ensp.fiocruz.br